Malaysian's Clubfoot Blog

Born Normal vs Born Clubfoot

2011-11-14T19:43:00.000-08:00

Salam everyone..

My newborn arrived on 3rd Oct...Alhamdulillah she is born without clubfoot.

We (me & spouse) has discussed if the newborn has a clubfoot, we will straight go to Bangkok for treatment.

We will not worry anymore as this congenital abnormalities is treatable.

When we have Dania, we've been burden with her condition as premature baby and also her clubfoot problem.

Her paediatric and orthopedic physician are not helpful at all.

We know we can't expect too much from government hospital and we continue finding solution.

This is history. Now we want to share our experience and knowledge to clubfoot parents out there.

When Dhiya arrived, her feet is perfect but if it is not one thing for sure, we will not worry anymore.

To all parents out there, the main key of having this special child are patience and strong support from each other (husband & wife).

Tak payah nak salahkan keturunan isteri or keturunan suami yang ada genetic ni.

Ini anak kita, hasil benih kita, and we should take the responsibility to help this child.

Grand parents, family, friends & not forgotten employers must also involved with emotional support.

Good Luck to clubfoot parents wherever you are!

So Long

2011-10-01T09:00:00.000-07:00

Sorry folks..

I've been away for too long..
I'm now 36 weeks pregnant and now waiting for delivery.
So far through ultrascan, we did not detect this baby has a clubfoot but who knows..

Update later ya!!

Nothing can stop her..

2011-02-20T06:56:00.000-08:00

Running? She runs fast..

Cycling? She cycles fast too..

Climbing?...you judge..

Clubfoot kids walk, run, climb, sports normal like any other kids do...

If your kids walks differently, ask you doctor why..keep on finding answer..

Kaki (Feet)

2011-01-22T07:22:00.000-08:00

She is growing very fast..The feet looks normal now..

You can hardly see which one is smaller or which one is clubfoot..

Can u guess??

Alhamdullilah..

Potty Training - Clubfoot experience

2010-12-10T16:35:00.000-08:00

Kami mula mengajar Dania 'Potty Training' as early as she reached 3 yrs old (somewhere in April & May) but we FAILED..

Even kat Nursery, many times she forgot that time she was diapers-free..

Until last October, dalam 2 hari sahaja, Dania berjaya di potty trained kan..even kat Nursery pon she proudly tell her friends that she is now free from diapers.

So until now she is diapers free on DAY time. Yelahkan kami pikir jugak, malam kalau x pakai diapers karang, habis basah satu tilam. Another thing, nak bukak kasut Ponseti tuh yg amek masa before pegi toilet..

Currently Dania is still wearing her brace from 10pm to 7am/8am. Tapi semalam, she wakes me up, minta bukak kasut nak pegi wewee. Mama pulak excited,melompat bangun and tolong dia.Earlier night she wakes her dad (mama tak perasan pon).Patutlah kadang mmg perasan tgh2 malam pernah nampak dia nak bukak kasut..mesti sebab dia ada rasa nak gi wewee tapi mata dia pejam..

Itulah dia pengalaman potty training budak yg tgh pakai braces ni. Yg mencabar pada waktu malamnye.

Kawan2 - selamat berjaya!

Clubfoot will not stop her from cycling..

2010-10-30T09:12:00.000-07:00

This video is dedicated to all clubfoot parents for your motivational support and encouragement.

One request for this blog readers especially if you are one of clubfoot parents, IS NOT TO GIVE UP HOPE.

Don't be scared to ask your specialist (whoever it is).

Your right is to get the best & the right treatment for your child.

If you need to travel, or to spend some of your time, you are encouraged to do so by all means.

No, not necessarily you need to go to Bangkok as we did but make sure your specialist did the right thing.

Take this challenge as one of the greatest gift from our Creator, and with courage & prayers, He will assist us.

I'm here to listen & to share your guts & feelings.

I'm here to assist whatever I can.

But YOU need to decide your own journey.

YOU need to be strong and wise in deciding the best treatment for your child.

Believe me, One day when you look at your child, you'll be proud that you have assist her to be able to walk like any other children.

Remember - Clubfoot will change your life... as it changes mine..

Salam Aidilfitri

2010-09-18T21:13:00.000-07:00

Dah Hari yang ke-10..baru teringat..

Salam Aidilfitri untuk kawan-kawan clubfoot kami..:D

Dari kami, Ina, Imran & Dania..

Sesiapa yg sampai ke Subang Jaya/Shah Alam, jemput datang rumah ye..jgn lupa email/call dulu..:D

It has been a while..

2010-09-13T10:00:00.000-07:00

Forgive me for not updating this blog..

It is not that I've forgot about it or have been busy..But I hv no update for this blog...

Do you want to share your story?

Email me at zarinawatims@yahoo.com

Bumrungrad Appointment 13th July

2010-07-15T07:12:00.000-07:00

Retetan gambar di Bumrungrad.
Siapa sangka, kanak2 ini dah 2 tahun ulang-alik ke Bangkok utk mendapatkan rawatan clubfoot.
Meredahi kota Bangkok yang penuh debu, yang penuh trajedi darah.
Pada awal 2 bulan, kakinye masih di simen selama 4 minggu.
Kiri Kanan orang bertanya, kenapa dengan kaki anak? Patah? Kemalangan?
Aku buat tatau ajek..kalau org tuh nampak ramah baru aku explain..

Setiba sampai di Bumrungrad, kami register dan nurse suruh tunggu.
Nurse kata Dr Amnuay belum check-in and dia nak tengok sendiri kaki Dania diX-ray..
Lagi pon belum pukul 10am..appointment pukul 10.30am.
Lepas tuh nurse datang and panggil masuk bilik Xray.
Kami duduk kejap and tetiba dengar suara Dr Amnuay panggil Dania.
Magicnye, Dania menyahut and salam dengan doctor.

Selalunye Dania kan meragam kalau masuk bilik Xray.
This time, aku explain dekat dia, doctor nak amek gambar kaki sakit, Robocop (a.k.a alatan Xray)akan ikut Dania berjalan.Dia percaya and she gave her best cooperation.

Then, Dr Amnuay went out and we need to proceed with another Xray.
Lepas habis Xray, kami tunggu dalam 5 minutes.
Nurse panggil lg utk amek berat Dania, and she is at 18kg.

Bile keluar dr bilik timbang, Dr Amnuay nampak kami, and terus panggil kami masuk.
Dr Amnuay check Xray and buat ukuran dorsiflexion.
He explained on Dania's clubfeet progress.
He compare with Dania's left foot.

He sounded happy while my heart can't stop pounding.
He said Dania's feet now at normal range.
Even the bone is correctly located.
Everything is almost perfect and I see you next year.
We said what???
'Unless you like to come here more often'..

This is our biggest achievement.
Dr Amnuay said Dania no longer need to wear brace at night and to continue streching.
But we decided to continue with the brace until she gave up.
Usually Dania would ask to wear the brace and her night milk before she go to sleep.

Thank you Dr, for making our trip more meaningful.
Thank you for the guidance, the counselling, the advise, the consolation and perhaps thank you for everything.

Thank you everyone and we are here to help you.

Note : Hospital Bill including Xray : 2,000 Baht = RM202..but it is priceless..so if u can afford, don't waste ur time, go to Dr Amnuay or Dr Kelvin in Spore..

Anugerah

2010-06-13T07:59:00.000-07:00

Kalau aku ada anugerah nak bagi, kan ku anugerahkan Dania, kanak2 yang paling sabar ketika tido...kenape??

sebab..

Sejak June 2008 sampai sekarang..dia belum pernah gagal memakai FAB, ponseti shoes.Walau dimana kami berada, sekalipon ke luar negara untuk bercuti, insya allah kami akan bawa kasut ini dalam luggage.Kalau flight malam, Dania akan start pakai kasut pukul 8pm atau 9pm.Dulu pernah Dania menangis, dan kami cabut kasut untuk seketika dan kenalpastikan apa punca Dania menangis ketika kasut itu dipakaikan.

Pesan Dr Amnuay, kasut ini paling penting dan perlu dipakai setiap malam walaupun dimana kami berada..kamu perlu patah balik sekiranya terlupa bawa..:D

Calling one

2010-03-27T09:35:00.000-07:00

Many of my friends/relatives called me and they said they have friends who had clubfoot problem.

I just can share my experience, my simple knowledge..Somehow how I wish I can do more.

I'm setting up a fund with our 1st objective to introduce Malaysian Clubfoot official website.Latest news, we have registered the website..:D

We've got our initial fund from our Thai Silk Sales. We will continue to find a way to generate fund for this small charity project.

Other than that, we can help those low income earners on travelling subsidy for clubfoot treatment. Dania would love to meet all of her friends.

Then my next target is to have a pool Ponseti FAB shoes. So that people can rent intead of buying.

I have a lots of plan in mind and I need sponsors.

I need our own local physician to assist me on consulting this parents. Why can't any of them help me?Is it too much to ask?

Dania's 2nd FAB

2010-03-10T07:22:00.001-08:00

When her dad told her she got a new shoes, she was so excited.I'm a bit worry that she may not get it. Once she open the box, you can see her face was so excited seeing her new FAB..fuhhhss..

This is her new Ponseti Shoe Size 7/8. She has been in this corrective shoes since she was 14 months old. For record, now she is coming to 36 months old. She is wearing the shoe every night without fail (yet!!) and we are accommodating at least 10 hours per night. But sometimes it less.

We are quite lucky that Dania is very much cooperative when wearing the shoe except that there was time she was crying in pain at night. I think she had a nightmare...:D

So, guys don't give up ya!!

Another Relapse

2010-02-21T01:35:00.000-08:00

My lil Adam D is having another relapse i think.. it's been quite some time since he began to walk and we are still thinking whether to continue treatment at HUKM or not.

Frankly speaking, HUKM is not to be blamed on his foot relapsing. after the tenotomy and follow ups treatment, Adam started to wear FAB and we succesfully made him wear it until he started to walk and he refused to wear the FAB by throwing so much of tantrums which finally the FAB torn because of him and became useless at all.

and since then, he never wear any FAB and we also stop from going for follow up treatment at HUKM. i must say that i am not strong as Ina mentally and.. financially. buying another shoes surely costs us pretty much plus travelling to/fro for his treatment and we are currently in a situation where we need to save money due to some reason. and of course it hurts to see him walking in such way.

we had reached to the extend where we had gave up hopes and can just watch him walk in such condition. he can walk, he can run (quite fast u can't imagine) but of course his feet (especially the left feet) obviously we can see it turned inwards whenever he stepped. i do not know when is the right time to start his treatment again and i just don't know what to do anymore.

* i'm a bit emotional when writing this posting now.

Dania 1st jogging activity

2010-02-16T06:58:00.000-08:00

Dania has been walking for a year, jumping around, she can squat, she can dance and she can do jumping frog. Indeed a corrected clubfoot feet would not stop her in what she want and loves to do.

See from the back. No one cam ever think that she was born with unilateral clubfoot. Alhamdullilah, she is like any other normal kids..:)

Dania 1st Anniversary of walking

2010-02-13T07:06:00.000-08:00

I think not many parents out there will celebrate their children 1st Anniversary of walking. A year ago, Dania surprised us with her ability to stand up and walk like a champion. She was 22months old when she had her 1st independent walks.

I'm proud of her. After 22 months of struggling to treat her clubfoot problem, she finally walks.I used to be worried about her but now I'm confident clubfoot children are like any other normal kids. Watching her walking is priceless. She is my spirit and love of my life.

We will remember 14th February not because of Valentine's day but this is the day Dania finally walks!!!

Aktiviti Physio utk clubfoot

2010-02-10T06:09:00.000-08:00

If your clubfoot child is still on brace, you are advised to do some light exercise to ensure the feet is soft and dorsiflexion is improved. Dorsiflexion tuh adalah pergerakan kaki apabila tapak kaki ditolak dari permukaan rata ke arah keting kaki. Lakukan pada waktu pagi dan sebelum tido.

Kaki Dania yang ditolak keluar (outwards direction)

Dan kaki ditolak keatas untuk mendapat angle yang baik. Cara ini akan membolahkan kaki anak anda flexible ketika dia menyangkung (squat).

Other than this exercise, for those clubfoot child yg dah started walking, u can ask them to play run & catch, Perhatikan cara mereka mengambil bola. Aajar anak menyangkung (squatting) also good. I'll post on how I teach Dania squat later...Keep on exercise you child's feet!!

Ke Bangkok

2010-01-22T15:40:00.000-08:00

Kami akan ke Bangkok lagi untuk kali ke 9 kalau tak silap..:)
Updates will be later.

Finally i turned back to DB bar..

2009-12-19T18:05:00.000-08:00

it's been a long time since i last writing. too busy with the workloads and problems at work.

my budak bucuk is currently 21 months old and he just started to walk about 2 weeks ago. i just couldn't believe when he stand up and begin to walk. Frankly speaking, my baby now is still wearing FAB but we no longer use Dobbs bar. Instead, we use Dennis Brown bar like previous time.

The reason why we turn back to Dennis bar is simply because of the foot condition. Maybe I have to agree with Ina since I saw it myself. Dobbs bar can be very convenient for the parents where baby mostly not making over a fuss and can freely move their legs but later on we discovered that it cannot make the foot stands flat. Mungkin disebabkan bar position yg menyebabkan kaki berjengket which is soooo frustrating to us. I’m not really good at describing words but I’ll find some other time to upload pics.

So we turned back to DB bar and Adam looks pretty ok with it.. especially in the childcare. I must thank all the staffs at the childcare for able to adhere to the instruction to make him wear FAB at least few hours even though he’s quite against it especially during nap time.
.
I found it difficult to make him wear the FAB especially at home where he will always come to me and ask me to take it off and started to show tantrums whenever I refused. But thank God, he can wear the FAB during outing and only ask me to take it off when reach home. I must say that I am not really complying to make him wear FAB for most of the times but at least I still make him wear it everyday even for few hours only. scare of relapse? of course!

Re-introduce

2009-12-10T02:42:00.000-08:00

Saya naik menyampah baca artikel clubfoot yang banyak bagi info yang outdated.
So, sesiapa yang ingin tahu lebih lanjut tentang keadaan clubfoot anak masing2 boleh emailkan soalan2 dan juga attachkan sekali gambar terkini dan juga keadaan kaki anak ketika lahir kepada Dr Amnuay di ajirasirikul@gmail.com [ In english please].Kalau nak saya tolong translate pon boleh, email kat saya dulu di zarinawatims@yahoo.com.

Sedikit mengenai Dr Amnuay yang saya ambil dr website Bumrungrad Hospital.

Name: Dr. Amnuay Jirasirikul
Specialty: Orthopaedics (Bone) - Orthopaedic Surgery
Language: Spoken: English,Thai
Qualifications: Medical School: - M.D., Faculty of Medicine, Chulalongkorn University, Thailand, 1978
Board Certifications: - Diploma of The Thai Board of Orthopaedic, 1984
Fellowships: - Pediatric Orthopaedics, 1996
Special Clinical Trainings: - Clubfoot (Ponseti Method), Pediatric Foot, Hips and Spine
Clinic Hours : Tuesday 0900-1500

Sapa dah baca artikel ni

2009-12-07T04:34:00.000-08:00

arkib Utusan Mingguan 06/12/09
Oleh RABIATUL ADAWIYAH KOH ABDULLAH
adawiyah.koh@utusan.com.my

KISAH gadis kaki terbalik di New York tahun lalu menarik perhatian masyarakat dunia. Sejak dilahirkan 15 tahun lalu, Jingle Luis, tidak pernah tahu bagaimana rasanya berjalan menggunakan tapak kaki tetapi gadis itu reda dengan keadaannya.
Dilahirkan di Filipina dengan bahagian kaki depan menghala ke belakang dan tapak kaki berada di atas, Jingle cuma menggunakan tongkat ketiak
untuk mengheret apa yang sepatutnya menjadi bahagian atas kakinya.
Namun, jika segala-galanya berjalan lancar, Jingle tidak perlu lagi berdepan dengan keadaan itu. Dia dan ibunya meninggalkan Filipina untuk mengunjungi sebuah hospital di New York bagi menjalani pembedahan dan rawatan susulan untuk membetulkan keadaan kakinya sehingga dia dapat berjalan seperti orang normal.
Kes Jingle nyata lebih teruk berbanding yang biasa dilihat oleh doktor di negara -negara maju.
"Bercakap secara jujur, dengan teknologi moden, ia tidak sampai ke tahap ini," kata Dr Terry Amaral, pakar bedah ortopedik pediatrik yang melakukan pembedahan itu di Hospital Kanak-Kanak di Pusat Perubatan Montefiore.
Keadaan kaki terbalik atau kaki bengkok (clubfoot) adalah bentuk kecacatan biasa, yang terjadi kira-kira satu dalam 1,000 kelahiran. Kanak-kanak biasanya dirawat ketika masih bayi dengan acuan dan alat sokongan dapat membetulkan kedudukan kaki.
Ia menjadi semakin sukar untuk dirawat jika tidak dibetulkan sejak awal. Amaral berkata, kes Jingle sukar dengan hakikat keadaannya dikaitkan dengan kerosakan pada tulang belakang. Petikan kisah ini sebahagian daripada pesakit yang terpaksa menerima keadaan dirinya yang cacat.
Pakar bedah ortopedik Pusat Perubatan Mahkota (MMC), Melaka, Dr. Thirukumaran Subramaniam memberitahu, kaki bengkok atau lebih dikenali sebagai clubfoot merupakan salah satu daripada kecacatan pada kaki yang kerap dialami oleh seseorang bayi sejak dilahirkan.
Sehingga kini punca sebenar masalah ini masih tidak diketahui.
Terdapat pelbagai teori dikaitkan berhubung punca masalah ini. Bagaimanapun, ibu-ibu yang mempunyai anak yang mengalami masalah ini tidak perlu bimbang kerana ia bukan berpunca daripada sebarang tindakan atau perlakuan mereka yang dilakukan semasa hamil.
Dr. Thirukumaran menjelaskan, semasa tempoh kehamilan otot-otot dan ligamen kaki tersebut gagal untuk berkembang seiring dengan pembentukan kaki tersebut.
Sehubungan itu, otot dan ligamen pada bahagian belakang kaki menjadi pendek. Keadaan ini menyebabkan kaki bengkok ke bawah dan terpusing ke dalam. Malah, keadaan ini juga menyebabkan tulang kaki berada dalam kedudukan yang tidak betul.
Sekiranya keadaan ini dibiarkan, lama-kelamaan bentuk tulang akan berubah.
Sekiranya kanak-kanak tersebut dibiarkan tanpa rawatan, kecacatan ini akan menjadi lebih teruk dan akan berkekalan.
Ini termasuklah kesukaran untuk berjalan dan memakai kasut.
Pembedahan
Rawatan kaki bengkok ini bertujuan mendapat dan mengekalkan kaki yang hampir dengan kaki normal. Bagaimanapun, rawatan ini menggunakan pelbagai kaedah bergantung kepada keadaan kaki tersebut.
Namun, rawatan membetulkan masalah kaki bengkok ini haruslah dilakukan seawal mungkin.
Misalnya, pada peringkat awal rawatan kaki bayi tersebut akan diperbaiki secara berperingkat-peringkat dengan melonggarkan otot-otot dan ligamen yang ketat dengan menggunakan simen.
Simen yang dipasang pada kaki bayi terbabit akan ditukar dengan simen yang baru pada setiap minggu.
Penggunaan simen dalam tempoh permulaan ini bertujuan untuk meluruskan kaki yang bengkok berperingkat-peringkat.
Namun, sekiranya rawatan ini tidak begitu berkesan, doktor akan mengesyorkan untuk menjalankan pembedahan ke atas kanak-kanak terbabit.
Menurut Dr. Thirukumaran, pembedahan untuk penyusunan semula anggota kebiasaannya dibuat di pusat universiti dan jarang dilakukan di hospital swasta mahu pun kerajaan.
Pembedahan ini juga sangat mahal dan ramai pesakit yang tidak mampu membayar kos pembedahan.
"Namun, MMC menerima menerima pesakit sama ada tempatan atau luar negara. Ramai pesakit yang mendapat rawatan berasal dari Melaka," katanya.
Dr. Thirukumaran menjelaskan, asas kepada pembedahan ini ialah, apabila anda tidak boleh membaikinya, anggota anda akan disusun semula.
Tambah beliau, ada kes yang susah untuk dipulih dan pembedahan ini bukan satu alternatif yang baik.
Namun, pembedahan ini penting untuk mereka yang tempang, capik atau lumpuh sebelah kaki.
Dengan kemajuan teknologi dan sains, pesakit yang dibedah akan berasa lebih selesa dan dapat menempuh kehidupan yang normal. Justeru itu, ia membantu golongan Orang Kurang Upaya (OKU) daripada kecacatan khususnya yang melibatkan anggota badan seperti kaki.
Kecacatan kaki terbalik ini terdiri daripada beberapa situasi. Ada yang mengalami kecacatan sejak lahir. Terdapat juga kes kecacatan akibat kemalangan dan trauma yang perlukan pembedahan.
"Kira-kira 80 peratus keputusan kes terjadi kerana kemalangan dan sangat rendah kecacatan terjadi disebabkan kelahiran," ujar beliau.
Kos pembedahan bergantung kepada keadaan pesakit. Kebanyakan kes memerlukan perbelanjaan RM 15,000 hingga RM 200,000 dan setengah rawatan memerlukan 12 pembedahan. bagi setengah kes, ada juga pesakit yang perlu memakai kaki palsu selepas pembedahan.
Pembedahan bayi kaki bengkok
Pembedahan biasanya dilakukan semasa bayi berumur antara enam bulan hingga satu tahun. Ia bertujuan untuk memanjangkan otot-otot yang pendek serta memotong ligamen-ligamen yang ketat.
Sekiranya dengan rawatan simen otot kanak-kanak tersebut masih ketat, doktor akan menjalankan pembedahan memanjangkan otot-otot tumit.
Jika rawatan menunjukkan perubahan pada kaki, pesakit diberi splint plastik iaitu alat yang dapat mengekalkan posisi kaki dalam tempoh antara enam bulan hingga satu tahun.
Sekiranya dalam tempoh tersebut juga tidak menunjukkan sebarang perubahan, doktor akan melakukan pembedahan yang lebih besar.
Pembedahan ini biasanya dilakukan sekiranya kaki agak keras dan bengkok amat sukar diperbetulkan dengan simen.
Prognosis selepas pembedahan
Bayi atau kanak-kanak yang menjalani pembedahan membetulkan bentuk kaki mereka yang bengkok perlu mengikuti pemeriksaan dan rawatan susulan sehingga umur mereka mencecah tujuh tahun.
Rawatan susulan ini bertujuan untuk memastikan kaki kanak-kanak terbabit menjadi sehampir normal dan keadaan kaki yang bengkok tidak berulang.
Bagi kes-kes di mana hanya salah satu kaki sahaja yang bengkok, kebiasaannya kaki ini bersaiz agak kecil sedikit berbanding kaki yang sebelah (normal).
Namun, keadaan ini sedikit pun tidak akan menjejaskan aktiviti harian kanak- kanak terbabit. Malah, mereka boleh menjalani kehidupan seperti kanak-kanak normal lain.
Komplikasi
Sekiranya kanak-kanak yang menghadapi masalah ini dibiarkan tanpa rawatan, tulang kanak-kanak tersebut akan bengkok. Kesannya, kanak-kanak tersebut akan berjalan di atas bahagian tepi kaki mereka.
Jika dibiarkan lama-kelamaan kulit bahagian tepi kaki mereka akan rosak. Pada masa yang sama mereka juga tidak dapat memakai kasut seperti individu lain.
Panduan
Ibu bapa yang mendapati anak-anak mereka menghadapi masalah ini dinasihatkan supaya segera membawa anak-anak untuk mendapatkan rawatan doktor.
Ini kerana dengan rawatan awal dapat membantu anak terbabit memiliki dan menjalani kehidupan yang normal.
l Hasil satu kajian menganggarkan kanak-kanak yang menghadapi masalah ini dinisbahkan 1 dalam 1,000 orang atau 1:1,000.
l Clubfoot atau dalam bahasa Latinnya congenital talipes equinovarus ini berlaku sejak bayi masih berada dalam kandungan lagi di mana keadaan kaki kelihatan seolah-olah bengkok ke dalam.
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Saya masih hairan masih ada lagik Doctor yang tidak mahu mengaku kewujudan Ponseti Method. Ye saya mmg tahu tidak semua masalah clubfoot boleh diselesaikan dgn cara Ponseti tapi dengan 98% success rate, bukan kah itu hampir kepada perfect score?

Fikir balik, memang takde siapa akan betulkan artikel ini kerana dikhuatiri kan menganggu professionalisme kawan sejawat. Saya tahu saya pon bukan dari kalangan medik atau kalangan cendiakawan tapi saya masih pandai google untuk mengambil tahu mengenai clubfoot ini. So tak payah lah nak keluar paper sampai bagi salah bagi maklumat.Sangat mengharukan lah doktor yang pandai2 nak cerita pasal clubfoot ni.

On the other note, saya kan menjalani rawatan radiosurgery untuk merawat sakit saya. Saya akan cuti sakit agak lama. Doakan kejayaan radiosurgery ini, sampai berjumpa lagi ye..

Semoga bertemu di tahun 2010..

HoneyD- sila lah tolong update blog ni masa ketiadaan saya..:)

Bantuan Diperlukan

2009-12-02T06:08:00.000-08:00

Hi,

Saya perlukan bantuan kepada sesapa yang ingin berkongsi pengalaman di sepanjang mendapatkan rawatan Ponseti di Malaysia. Blog ini adalah blog untuk kita berkongsi masalah, suka duka dan juga saling membantu memberi semangat untuk kawan-kawan yang senasib.

Sesiapa yang berminat, sila email kepada saya di zarinawatims@yahoo.com secepat mungkin kerana saya perlu memberi laluan access kepada anda.

-Ina

Update : Rizq dr Melaka

2009-10-25T07:21:00.000-07:00

Pada bulan July yg lepas, saya menerima email dari seorang bapa dr Melaka yang ingin tahu mengenai clubfoot dan rawatan kaedah ponseti. Tanpa buang masa, saya syorkan beliau menemui Dr Burhan. Kami berjumpa di HUKM, di sana kami ditemukan adik Rizq dan keluarganya dengan kakak Dania.. (maaf takde gambar sebab leka bercerita..:)

Saya telah mendapat izin dari Hazrik untuk berkongsi gambar Rizq sebelum dan sesudah simen cara Ponseti. Gambar dibawah adalah gambar sebelum adik Rizq mendapatkan rawatan Ponseti.

Sebelum ini, adik Rizq mendapatkan rawatan di Hospital kerajaan di Melaka. Sama seperti Dania, rawatan pertama kurang memuaskan tambahan lagi kedua belah kaki adik Rizq masih lagi bengkok. Gambar dibawah adalah selepas berjumpa Dr Burhan & Dr Sharaf di HUKM. Kaki adik Rizq perlu disimen semula, tenotomy, simen sehingga 3 minggu, dan inilah hasilnya.

Dlm tempoh hampir 3 bulan, kaki adik Rizq sudah kelihatan seperti normal. Gebunye kaki adik Rizq mcm ala ala tayar Michelin..:)

Hanya satu nasihat untuk Hazrik & Linda sekeluarga, jangan lupa urut kaki anak setiap kali pagi dan malam, dan jangan lupa kasut istimewa anak kita perlu dipakai sepenuh masa dlm 3 bulan pertama dan disusuli diskaun 2 jam pada bulan2 berikutnya, dan seterusnya selama 12 jam pada waktu malam. Kasut ini perlu diapakai sekurang2nya 3 tahun.Walaupon kita pegi travel jauh sekalipun, kasut itu perlu dibawa bersama. Biarpon adik Rizq tidak selesa dgn kasut ini tapi sebagai ibubapa kita kene disiplin untuk mengelakkan dari bengkok kembali.

Gembirakan hati anak anda semasa memakaikan kasut 'braces' ini, ceritakan kenapa dia perlu memakai kasut ini. Mudah2an anak2 kita faham. Sekiranya dia menangis, tabahkan hati dan teruskan pujuk anak tanpa mengalah.

Terima kasih Hazrik kerana sudi membenarkan author berkongsi gambar adik Rizq.

Thank You, Doctor, we will miss you..

2009-10-19T05:51:00.000-07:00

Dr. Ignacio Ponseti, father of the Ponseti Method, a revolutionary nonsurgical means of treating clubfoot in babies, died Sunday, University of Iowa spokesman Tom Moore said. He was 95. Ponseti treated thousands of babies and children with his method at University of Iowa Hospitals and Clinics and trained doctors around the globe to use it.

Dr Ignacio Ponseti, pencipta Ponseti Method, kaedah revolusi merawat clubfoot tanpa pembedahan di kalangan bayi, hari ini meninggal dunia pada usia 95 tahun. Beliau telah merawat ribuan bayi dan kanak2 dengan kaedah Ponseti di Klinik Hospital Iowa University dan telah melatih ramai doktor untuk mengaplikasikan kaedah tersebut.

Semoga Tuhan mencucuri rahmat beliau.

Dr Ponseti dikhabarkan sakit kuat

2009-10-17T02:35:00.000-07:00

Salam semua,

Mungkin anda tidak pernah kenal atau tidak pernah ada peluang untuk berkomunikasi dengan lelaki ini. Tetapi lelaki inilah mencipta kaedah ponseti yang digunakan untuk membaik kaki anak anda tanpa perlu pembedahan besar.

Lelaki inilah yang memujuk saya untuk tidak putus asa dan menyarankan saya berjumpa dengan Dr Amnuay di Bangkok untuk menerima rawatan. Kami sekeluarga amat berhutang budi pada beliau. Walau kami hanya berkomunikasi melalui email, kesan dan budinya sangat besar pada kami.

Dikhabarkan Dr Ponseti kini sedang sakit kuat dan terlantar di hospital Iowa, Amerika Syarikat. Moga beliau kembali sembuh atau sekiranya Allah ingin menjemputnye pulang, moga beliau dirahmati walaupon beliau bukan seagama dengan kita.

Kawan2, doakan lah kesejahteraan untuk kesihatan beliau...amin!!

Eid Mubarak

2009-09-19T23:28:00.000-07:00

Salam AidilFitri, Maaf Zahir & Batin..kepada yang terlibat dengan perjalanan Clubfoot ini..:)

-Ina, Imran & Dania

Perjalanan Clubfoot Dania

2009-09-03T07:54:00.000-07:00

telah diedit pada 130909...

Selain daripada terjemahan bahasa inggeris ker bahasa melayu berkenaan dengan Kaedah Ponseti pada posting bertarikh 19hb March, saya menyimpan keinginan untuk menceritakan perjalanan saya sekeluarga untuk mengubati Clubfoot anak saya, Dania untuk dikongsi bersama dengan pembaca khusus dari Malaysia.

Untuk pengetahuan pembaca semua, saya anak kedua dari 5 adik beradik dan saya seorang yang 'vocal' (lantang bersuara), saya tidak malu bertanya sekiranya saya kurang pasti dan oleh kerana saya sudah 8 tahun kerja dengan syarikat Jepun, saya diasah untuk mencari 'root cause' atau punca sebenar secara bertubi2 bagi sesuatu masalah dan mesti di akhiri dengan penyelesaian atau jalan-jalan yang boleh menyelesaikan masalah berkenaan.

Saya berjaya melahirkan seorang anak perempuan pada 1hb April, 2009 setelah 4 tahun berkawin dan setelah 3 kali keguguran akibat masalah pintu rahim yang mudah terbuka pada trimester kedua. Seperti saya katakan tadi, saya tidak mengenal erti putus asa dan saya tidak takut untuk mencuba mengandung lagi.

Semasa Dania lahir, jururawat yang menyambut kelahiran anak saya, memberitahu yang kaki anak saya ada bengkok sedikit. Saya ada menanyakan kenapa tetapi jururawat berkenaan menyuruh saya bertanya sendiri kepada doctor. Saya juga sempat melihat kedua belah jari kaki anak saya hitam lebam, begitu juga jari2 tangan.Anak saya ditempatkan didalam NICU kerana pramatang 33 minggu dan juga saya adalah GBS-carrier.

Saya khabarkan kepada suami dan ibu tentang keadaan kaki anak saya. Maklumlah Dania dilahirkan di Hospital kerajaan, oleh itu keadaan di NICU tidak mesra penjaga membantutkan hasrat kami untuk mengetahui lebih lanjut. Kalau ada apa pon, jawapan diberikan acuh tak acuh sahaja. Kawan2 semua bertanya kenapa saya memilih untuk bersalin di hospital kerajaan sedangkann saya mampu bersalin di hospital swasta yang serba canggih. Jawapannye senang saje. Ibu saya adalah pekerja hospital tersebut dan saya adalah pesakit yang diawasi dengan sepenuhnya oleh Pakar Kanan Perbidanan yang terbaik di hospital berkenaan. Insya allah kalau ada rezeki, sekiranya saya megandung lagi, saya pasti akan memilih hospital swasta.

Pada hari kedua kelahiran Dania, kami dibawa ke Unit Carakerja yang kononnye boleh membantu memperbaiki kaki Dania. Kaki Dania dia urut, dan mungkin keadaan urat yang ketat, Dania menangis dengan sangat kuat. Inilah hasil lawatan kami ke Unit Carakerja.

Splint ini tidah dibenarkan dibuka walau pon hanya seketika. Tapi kami buka jugak splint tuh, tak nampak perubahan pon.

Kami tidak puas hati, dan kami mengambil keputusan pegi ker hospital swasta berdekatan untuk pendapat kedua. Doctor kenalan ibu mencadangkan agar kaki Dania disimen untuk hasil lebih baik. Beliau mengarahkan kami ke Unit Orthopedic di hospital kerajaan tersebut untuk mendapatkan rawatan.Sejak dari itu kaki Dania disimen yang dilakukan oleh pembantu hospital sahaja. Disini naluri ibu saya dicabar kerana Dania menangis dan melalak tanpa henti.

Setelah 2 bulan bersimen, masih tidak banyak berubahan. Kakak ipar saya mencadangkan kami ke HKL untuk rawatan selanjutnya dan kakak memberitahu ramai pesakit yang mempunyai masalah clubfoot mendapatkan rawatan di HKL. Kami pon memindahkan kes Dania ke HKL. Pada masa yang sama kami juga melayari internet untuk mencari jawapan.

Pada masa ini, saya sudah mengalami sakit kepala yang teramat sangat. Saya tidak berjaya menyusu badan anak saya lebih dari 3 bulan kerana saya perlu mengampil pil anti sakit untuk masalah sakit kepala.

Di HKL, pakar Orthopedic yang membuat simen/'casting'. Nampak perubahan sedikit tetapi masih belum meyakinkan lagik. Dania masih menangis, melalak. Airmata mmg nak gugur dah setiap kali Dania disimen.Dania dijadualkan menjalani satu pembedahan 'tenotomy' iaitu memotong tendon yang degil. Tidak ada satu doktor pon menerangkan kepada kami kenapa pembedahan ini perlu dilakukan, berapa lama, apa yang mereka akan buat, dan berapa lama tempoh penyembuhan.

Dania kes yang pertama dan pada pukul 1o pagi doctor membuat lawatan. Pakar Kanan yang hadir ada mengatakan yang sebenarnye kaki Dania belum sedia untuk pembedahan. Tapi mereka masih melakukannya. Saya simpan perasan marah sebab saya sakit kepala. Pakar tersebut ada mengatakan mereka akan bantu apa yang boleh untuk Dania. Kaki dania disimen selama 2 bulan. Pakar yang membuat pembedahan ini adalah lelaki. Kami ingat muka doktor ini sebab muka dia pucat semasa Dania datang untuk pemeriksaan susulan.

3 bulan kemudian, Dania di jadualkan untuk pembedahan kali ke-2. Oh ye kedua2 pembedahan ini dilakukan di dalam Bilik Pembedahan Paedetric. Pembedahan yang ke-2 mengambil masa yang agak lama dari pembedahan yang pertama. Kali ini saya diberitahu Pakar perempuan yang akan menjalankan pembedahan tersebut. Kami juga diberitahu bahawa Pakar yang membuat pembedahan pertama Dania tempoh hari sakit teruk. Kaki Dania disimen sehingga 2 bulan.

Hari Raya pertama Dania, kakinya bersimen. Tapi Dania masih kecil untuk memahami semua yang dialami olehnya. Saya masih lagi sakit kepala, berdenyut dan tapi saya masih gagah untuk pegi bekerja.

Suami saya ditugaskan berkerja di Canada pada Nov 2007 selama sebulan dan saya ditinggalkan sendirian bersama Dania. Walaupon kepala saya berdenyut dan sakit sangat teruk, saya berjaya memandu dari Subang Jaya ke HKL. Saya pernah pengsan dirumah ketika bersama Dania. Suami saya sempat menelefon ibu saya untuk datang menjenguk.

Kepulangan suami saya diraikan di Hotel Legends tetapi saya pengsan lagi ketika berada di hotel tersebut. Pakar di SJMC mengatakan jangkitan telinga semakin pulih dan Pakar disebuah hospital kerajaan menjadualkan saya membuat CT Brain scan setelah saya mengadu penglihatan kabur dan saya tidak boleh berjalan lurus. Pada masa ini Dania masih bersimen.

Nak lihat cara simen HKL?

Oleh kerana saya dianugerah oleh Allah swt dengan semangat yang kental, saya diberi peluang untuk hidup untuk kali kedua setelah selesai menjalani pembedahan 10 jam untuk membuang ketumbuhan di dalam otak (Brain tumor) pada 18 January 2008.

Saya dan ibu saya pergi ke Umrah pada April 2008, untuk sujud syukur atas Nikmat Allah berikan saya dan saya juga tidak putus2 doa untuk melihat kaki Dania sembuh seperti kanak2 biasa.

Doa saya dimakbulkan. Alhamdullilah. Setelah saya pulang, Saya sepatutnye membawa Daia ke HKL untuk pembedahan kali-3. Entah apa pulak yang hendak dibuat pakar2 ini. tetapi hati saya sangat berat dan saya menulis email kepada Dr Ponseti dan Dr Matthews Dobb utk mendapatkan pendapat mereka.

Dalam tempoh 24 jam, saya mendapat jawapan dr mereka dan mereka setuju dengan tindakan saya yang tidak membenarkan apa2 lagi pembedahan dilakukan kepada kaki Dania. Dr Ponseti juga mengkritik cara simen yang dilakukan oleh pakar HKL dan juga dia juga mengatakan kaki Dania belum pulih sepenuhnya walaupon setelah ada 2 pembedahan dilakukan.

Dr Ponseti mencadangkan kami ke Bangkok dengan segera untuk rawatan yang lebih bagus. Kami berangkat ke Bangkok setiap minggu bermula May 2008. Dengan sekali simen sahaja, perubahannye sungguh ketara. Kaki anak saya tidak jengket lagik. Ada pakar di HKL mengatakan kaki anak saya pendek sebelah dan kaki anak saya tidak boleh diperbaiki dengan hanya cara bersimen. isk isk isk. Nak lihat cara Dr Amnuay simen kaki Dania?

Dengan hanya 4 kali simen (dalam tempoh sebulan), anak saya sudahpun memakai kasut Ponseti (Mitchel braces) selama 4 bulan penuh. Pada bulan September 2008, Dania genap
1 tahun 5 bulan. Tiada tanda2 yang dia nak berjalan sendiri. Macam2 tawaran saya berikan kepada Dania termasuklah LCD 29" warna pink. Dr Amnuay menyarankan waktu pemakaian kasut Ponseti hanyalah pada waktu malam dan nap time.

Pada 14hb Februari 2009, pada usia Dania 22 bulan, kami suami isteri dikejutkan dengan satu kejutan yang sangat menggembirakan hati kami. Pada hari tersebut, Dania bangun dan terus berjalan tanpa henti. Sebagai meraikan kejayaan Dania, kami bawa Dania ke Tokyo Disneyland pada harijadinya yang ke-2.

Sebenarnye jauh lagi perjalanan kami ni. Tapi kami ingin berkongsikan pengalaman kami ini kepada ibubapa iaitu tiada mustahil dalam hidup ini. Cuma kita kene ikhtiar sikit ajek. Tabahkan hati kerana ini hanya ujian sikit dr yang Esa.

Kaki Dania perlu diawasi sehinggalah umurnya mencecah 4-5 tahun. Kalau umur saya panjang, insya allah saya akan bantu mana yang saya terdaya kepada ibubapa yang senasib dengan saya. Doakan lah saya yang masih bersusah payah melawan ketumbuhan otak yang khabarnya datang balik ni!..iskkk

Sekiranya ada pertanyaan, saya boleh dihubungi dengan email di zarinawatims@yahoo.com
facebook Zarinawati dan juga Yahoo Mesengger.

Semoga hari-hari kita diberkati..insya allah..

Ini gambar kaki Dania yang mungkin sekarang kalau orang tengok, mereka tidak akan percaya Dania ketika dahulu mempunyai kaki clubfoot..:)

Worth Reading..:)

2009-08-26T07:05:00.000-07:00

Extracted from nosurgeryforclubfoot forum..

Hi everyone,

We just returned from Iowa for a second opinion for 17 mos old DS (BCF). Met with Dr. M and Maria, who felt like old friends because I've read so much about them!! The hospital is beautiful and the clinic is awesome. Iowa City is a very nice small city full of incredibly friendly people.

DS was treated here in Detroit by a Ponsetti approved doctor. Dr. M said he did a good job, and used our pictures of DS's serial castings to teach his "students of the day". The only difference in our doctor's treatment verses Dr. M's treatment is for DS's tightening heel cord. It's been getting stiffer since taking off the shoes during the day so he can walk. Our doctor was talking about doing another tenotomy. I pushed for PT, which helped. Dr. M said it's common for this to happen once the shoe time decreases. In fact, keeping the heel cord stretched is one of THE most important job of the shoes. He gave us the option of PT for 20 min/day for 3-4 months, then recheck, or recasting for 2 times. We chose the casts because DS doesn't like the PT, plus it's almost a sure fix. So I will return to Iowa in 10 days for a cast change. Then we can remove the 2nd casts at home.

As far as the DOBBS BAR - Dr. M didn't say anything bad about it, BUT he did say there are only 2 papers (studies) on it so far, and the first paper was done using a slightly different model than is sold now. The concern is that the mobility allowed with foot flexion and extension allows the heel cord too much movement and it seems to start tightening up. They have seen 6 cases of tight heel cords possibly form Dobbs bar use already. (We got ours after DS's problem was noticed, so I don't think his tightness is from the Dobbs bar). Dr. M didn't tell us not to use it, but did suggest that if we did continue to use it that we definately should do the heel cord stretches. If it starts to tighten up within 6 weeks time, then he would recommend going back to the Ponsetti bar.

We also talked about the ATTT. Dr. M there's a long time study now that shows that the surgery doesn't cause any later-in-life problems at all (no arthritis, etc.), so if DS does need it later, not to worry at all. (We repeatedly stated we were trying to avoid surgery at all costs). He did caution us not to let anyone do it before the age of 3, because one of the foot bones isn't fully calcified until then. Otherwise, it's not the end of the world or a failure and shouldn't cause us any sleepless nights.

While we were waiting for our casting, Maria went over all the details about coming back to Iowa next week. The Ronald McDonald House takes requests, using severity of illness as their criteria, so we may or may not get a room. They do work with the local hotels if they're full. I just saw the lobby and family room area when I went to get on the list, but the place is very comfortable and inviting. There is a free shuttle to/from the airport and the hospital. We stayed at the Heartland Inn, which is undeer $70/night with the hospital rate. Free breakfast, light supper snacks, and a shuttle to the hospital are included. It was also very nice, and most guests are there for hospital reasons.

Then the best part - I turned around and there was Dr. Ponsetti!! I teared up, and just really couldn't express my gratitude enough. My child and many others will live completely normal lives thanks to the dedication of him and his staff. How can words ever be enough?? He looked at DS's pictures, touched his feet, smiled and nodded. He still goes to clinic regularly to see "his kids" and watch them walk. He is very excited about the upcoming Ponsetti races, so if you're in Iowa for the conference definately participate. He should be at the finish line watching and smiling.

All in all, it was a very wonderful experience. Lessons learned:
*If you're unsure about your child's feet at all - GO if you can. You won't regret it.
*The businesses around the University cater to hospital patients and their families. You will be comfortable no matter where you stay.
*Everyone at the Ponsetti Clinic will do absolutely everything in their power to help you in any way they can.
*Consider doing the heel stretches once your shoe time decreases and your child starts walking. It won't hurt and may help.
*Use your bar and shoes 14 hours/night faithfully.
*The Ponsetti-recommened doctors are very well trained and skilled at the method.
*Meeting Dr. Ponsetti is a humbling and awesome experience.

I hope our experience helps and encourages some of you on your club-foot journey.
Many Belssings,
Diane

Blog Author Note :

We went to see Dr Amnuay in Bangkok on 11th Aug.Dr Amnuay said Dania's feet seems to be normal but he need to know in details. He sent us for X-Ray.After X-ray, it was found that Dania's heel cord is still tight and was not as good as what he expected to be.Dr Amnuay told us that, we need to change the way we strech her feet. We need to do it more frequently. He also said that perhaps Dania need another tenotomy. Tenotomy means her tendon will be cut again and she will be recast for another 3-4 weeks. However, he said it is the last things that he wants to do seems Dania can walk, can run and can squat like any other normal kids.

Still, he wants to see more improvement when he see us for another 6 months..
We need to work harder..I wont let Dania's tendon to be cut again...
I'll make sure this time, the heel cord will cooperate..insya allah!!

Relapse

2009-07-28T06:28:00.000-07:00

Frankly, I'm scared of relapse..That's why I'm trying very hard to strictly stick to brace protocol..tried to make it 10-12 hours per day,but sometimes it is almost impossible..Recently Dania was complaining again..her feet is in pain again and at night she was crying..She's pointed at the scar located at the heel..(the most stupid surgery that happened to her)..If it is really that surgery that caused her pains, I hope the doctors that decides to perform the surgery will never find peace in their life...will never..

I've to punish Dania whenever she is not cooperating with the brace protocol..hmm..Pity her but we're giving her our best, right?

Extracted from Ponseti International website..

Relapses are a common occurrence among children with clubfoot up to the age of six years. The following is the rate of relapse for discontinuing brace-wearing at the age designated: 1st year 90 percent, second year 70-80 percent, third year 30-40 percent, 4th year is 10-15 percent, subsequent years are about 6 percent. Bracing is an essential part of the treatment of clubfoot and prevents relapses very effectively. Severity of the deformity at birth is not a reliable indicator of the odds of relapse, therefore almost all clubfoot patients are held to the same bracing protocols in order to provide them with the best protection against regression.

Bracing protocol needs to be tailored to the individual child based on the age, the relapse rate associated with that age, and when the correction was finished. For example, bracing hours will be longer for a new born that was corrected in three weeks as opposed to an older child that is already walking when correction is achieved. Importantly, the underlying cause of clubfoot is a muscle developmental and growth problem, so it is very important that children who are using the brace maintain some degree of mobility.

The foot abduction brace is used only after the clubfoot has been completely corrected by manipulation, serial casting, and possibly a heel cord tenotomy. The foot abduction brace, which is the only successful method of preventing a relapse, when used consistently as described is effective in > 95% of the patients. Use of the brace will not cause developmental delays for the child.

A Foot Abduction Brace (also commonly mis-labeled a Denis Brown Bar or DBB) consists of an adjustable length aluminum bar with adjustable footplates onto which shoes attach. It is recommended that an adjustable bar is used in stead of a fixed length bar because the child will quickly outgrow the fixed length bar. The orientation of the footplates to the bar is set by the orthotist as recommended by your doctor. Typically, the shoes are set at 60-70 degrees of external rotation. The last cast applied by the doctor must also have been rotated to the 60-70 degrees of abduction (external rotation), otherwise the brace will be uncomfortable for the child. There should be a bend in the bar or the mounting of the footplates to obtain 10-15 degrees of dorsiflexion. The shoes are straight last, meaning there is no curvature, so they can go on either foot. If the bar does not have a quick-release mechanism, the shoes are oriented with the buckles on the inside, so that you do not have to turn the baby over to tighten the strap and laces. Importantly, the distance between the inside edges of the heels of the shoes is equivalent to the child’s shoulder width. This distance is the most comfortable for the child and prevents knee or hip problems. If you lay the brace on the floor with the shoes facing upward, the child’s shoulders should fit snugly in between the shoes. Children go through major growth spurts, so if your normally agreeable child is suddenly waking and fussing, it is appropriate to check the length of the brace to see if an adjustment needs to be made prior to their next follow up appointment with the doctor. The FAB holds the foot in the proper abduction (external rotation) and dorsiflexion (forefoot lifting up toward the calf) to keep the foot properly stretched.

Wearing Schedule:

Use the brace once the last set of casts is removed. DO NOT wait to get the brace after the cast is removed since there is a high chance of regression that can lead to discomfort and non-acceptance of the brace. If the brace is not ready, a holding cast should be applied to maintain final correction. It is also important not to end treatment early.

The following schedule is recommended:

a. For young babies with clubfeet corrected in the first few months of life:
i. 23 hours for three months.
ii. Then a gradual weaning schedule as follows: one month 20-22 hours, one month 18-20 hours, one month 16-18 hours and one month 14-16 hours. The time in the brace does not need to be consecutive, but try to have the bulk of the time while the child is sleeping nights and naps to encourage mobility during the waking hours. If your child attends a daycare, consider leaving the brace on in the morning and instructing the daycare as to what time each day that the brace should be removed, or if your daycare providers are confident and willing, instruct them how to remove and reapply the brace for nap times.
iii. As the child grows and is walking full time, maintain night-time wearing of the brace for 12-14 hours per day up to age 4-5 years.

b. If the final correction is achieved after 8-9 months of age and the child is ready for crawling or walking, it is important to allow some mobility to help in the development of the weak muscles.
i. Therefore, it is recommended to start initial bracing with 18-20 hours a day for 2 months, then go to 16 hours a day for 3-4 months, and then to the standard maintenance protocol of 12-14 hours to age 4-5 years.

c. Some children with clubfoot (about 2 or 3 percent) may also have loose joints.
i. In these cases, the abduction (external rotation) of 60 to 70 degrees may lead to flat foot, usually presenting when the patient starts walking at 10-16 months of age and after. These children should set the shoe to 30-40% abduction. Do not stop using the brace as there would be risk of relapse.

d. If the child has atypical/complex clubfoot.
i. After correction the shoe used for the affected foot should be set to 20-30 degrees. There should not be bending on the bar unless there is 10-15 degrees of dorsoflextion with the last cast. As the foot becomes more normal looking the abduction (extended rotation) of the shoe should be changed to 40-50 degrees.

e. For those children who are treated 2 and older at the time of correction please refer to Dr. Morcuende.

Details can be viewed at Ponseti Website. This website is most helpful. If you sceptical with your current doctor, pls feel free to refer to this website or email to Dr Morcuende.

On Brace..

2009-06-30T06:14:00.000-07:00

On the net, people are still arguing with which is the best FAB for clubfoot child..well, one thing for sure is after we've experienced most terrible treatment from our local hospital, now,we are happy with Ponseti-Mitchell FAB which Dania's comfortable in it since Aug 2008..

So far we don't need Dobbs Barr since Dania is quite tolerable with Mitchell FAB..Exclude recent June, she was quite unhappy with certain things includinh wearing the FAB, and I guess she missed her dad so much (her dad had oversea's assignment).. she always cried during night time and complaint her feet is painful and asked me to take out the brace which I did but when she return to sleep, I put the brace on..I even put her brace during day time for few hours..

I will not turn back, so do you parents..We've been in this journey so far and I'm confident that we will be on the right track as long as we stick to Ponseti Protocol...It is so heart-sickening to watch your child in cast again, isn't it?

I still didn't get any reply from media for Ponseti method publicity..Hmm..Dr Amnuay is right, this clubfoot is just a small issue and will not be the highlight of the day..

But we need to do something to educate clubfoot's parents who needs our experience..any ideas?

Inspirational Story..

2009-06-12T17:07:00.000-07:00

Readers & parents,

This is an emotional yet inspirational statement quoted from a parent who had a clubfoot child and the child recently graduated from FAB.

From Nicky Dugan..

I have been looking forward to writing this email for four years. Not to gloat, but to encourage all of you who might be in the earliest stages of treating clubfoot and let you know that, yes, some day this will all be over!

In 2005, I went to my 20-week ultrasound for my second child with that usual euphoria over being able to "meet" my kid. I left devastated by the news that he would have unilateral clubfoot. My uncle was born with clubfoot in World War II Germany and was treated like a pariah -- he subsequently became the village idiot. I feared the worst. I called my pediatrician on a Friday night and got no reassurances about a "normal" life - he said the treatment consisted of castings and likely surgery, with stiffness, scar tissue, and arthritis to follow. His foot would never really be normal. There were plenty of orthopedic surgeons around who could take care of all this. His only silver lining was, "in the grand scheme of deformities, it could be a lot worse."

Through my tears, I hit the Internet. And that's when I found this group. I remember reading about Martin Egbert, who made it his mission to ensure that the world knew surgery wasn't the only option for his son Joshua. I studied dozens of photos of feet and casts and bars. I read about pressure blisters and unqualified doctors whose worked needed correction. I wrote to Dr. Ponseti and asked, "Surely in this metropolitan city of San Francisco there is SOMEONE who practices your method?" No dice - we'd have to drive 45-minutes to Walnut Creek to see a Kaiser doctor outside our network. It all sounded so overwhelming. But I talked to Dr Colburn before Farley was born and he gave all those reassurances I'd been seeking... "Don't worry, just enjoy your baby, come see me when you're ready - doesn't have to be minutes after he's born. He will be fine. We will fix this. Don't worry."

I detached myself from this second pregnancy anyway - could I love a kid with a deformity the way I loved my first? But when Farley arrived, I loved and studied that sweet little crooked foot. So tiny. So unique. And then he proved to be my little trooper. On day five, off to Dr Colburn we drove. Farley fell asleep during his first casting. And his second... and third... And seven weeks later, nary a peep during his tenotomy. His foot came out beautiful, if just a little wrinkled at the ankle. But lo, when I saw those Ponseti-Mitchell shoes for the first time, I cried all over again. Four years of wearing these? You gotta be kidding me! They're torturous! Buckles and metal! How would he ever move around? How would he sleep? 23 hours a day in these things? Would he ever learn to walk?

And yet, here we are, four years later, having complied with wearing those shoes every single night and nap (except on that flight to Sydney last year - we had to draw the line!)... The pipe insulation to keep him from killing all of his and his crib. The banging and kicking as he swung that thing around. Trying to get those things into a sling and figuring out how to breastfeed. The drudgery of having to explain them to babysitters and care providers. All those strange looks at playgrounds and airport security. The hot sticky humid nights when you couldn't believe you were putting socks and shoes on your child. The comedy of seeing your kid's foot resting high in the air as he slept. The panicked moments of returning back to the house to fetch them before we drove off again to preschool. The hundreds of dollars not covered by insurance. The removal for third "Mama, I have to go potty" delay tactic of the evening. The triumph of being able to buckle those things in complete darkness. The loving care of the Mitchell family who provided us about five different pairs over the years -- the obvious commitment they have to this treatment. The PRIDE of knowing that all of this was an investment in a normal life.

And so this week, we got the brilliant news... Farley is officially 100% corrected! He has one helluva beautiful, gorgeous and normal foot. We can finally retire our trusty Ponseti-Mitchells and enjoy the unbelievable novelty of sleeping in bare feet! And I can assure you that Farley runs, walks, hops, jumps, rides his bike, keeps up with his big brother, and NEVER complains. Yeah, he's going to have a slightly smaller calf when he hits puberty. But other than that, no one will ever know a thing about these last four years or how this little super hero stuck it out without so much as any pushback.

We are full of gratitude -- to Dr. Ignacio Ponseti, John Mitchell, Dr. Michael Colburn, and ALL OF YOU for your wisdom, support, sharing, questions, answers, and reassurance. You go through so many stages on this list -- from clueless, anxious and full of questions to confident elder who has many answers and provides the comfort. Thank you, thank you.

The only lingering sadness I have is for the hundreds (thousands?) of children whose parents and doctors don't know about this miracle treatment. That the Ponseti method isn't de rigeur all over the world and that I still have to explain it to doctors. We will continue to give generously to the Ponseti International Association for the Advancement of Clubfoot Treatment in hopes that, some day, this nail will stop attracting the hammer of surgery. Keep doing what you do here -- it's the first place people discover when they get that diagnosis for their baby. Without you, this road would be dark, uncertain and very lonely.

And for all of you just starting the journey, take heart. You are doing the best thing possible for your child. You're not taking the easy way out. Swell with pride. Hug that kid. And know that it's all going to be ok. It's not really all that hard. "Don't worry."
-End-

I guess to be like Nicki, we need to keep doing on what we need to do.This clubfoot children need our attention spiritually.Good Luck to all of us!!

Happy Birthday Dr Ponseti

2009-06-02T07:18:00.001-07:00

He is a great man, a great doctor, the greatest inventor for clubfoot treatment..

He replied my email within 24 hours,

He consoled me when I was frustrated with Malaysian Doctors,

He assured me that Dania would be able to walk as normal kid..

He is the one who open a new journey for us..

Now, he is retiring, but his effort towards this treatment will not be forgotten,

at least not me & Dania..

Dr Ponseti and Mrs Ponseti,

Thank you so much for your kindness, warm-hearted and assistance..

We pray for your good health, happiness & longevity..

Happy 95th Birthday Dr Ponseti..

Best wishes from us in Malaysia

Resistance vs Responsibility

2009-05-18T08:10:00.000-07:00

Today I just got to know on how US parents went through financial difficulty in order to get the best non-surgical treatment for their clubfoot children. In States, they have Shriners, Ronald McDonald house, church houses, Kiwanis, charity flights e.g. Angel flight to fly them to Iowa Hospital, St Louis Hospital.

See, Mazila told me once, she had no choice but to stay with Dr Lyn Azura. She said if she got money, of course she will be flying to Bangkok like us. The good news is Dr Amnuay wants to sponsor their flight, accomodation & treatment. There are angels in Bangkok rather than here!

Dr Amnuay told me this clubfoot thingy is just a small issue in Thailand’s medical field.They have gone through a lot of resistance, challenges and egoism among the big doctors. At least they do have some physicians who cares about a child like Dania.

I think in Malaysia, this clubfoot is still considered as a small issue.
I remember a doctor told me via my personal blog that I should be thankful that my daughter do not have hole-in-heart problem. This is not about thankful or whatever you want to name it, this is about the credibility of a physician and their responsibility to their patient
>to cure their sickness,
>to ease their pain,
>to treat their illness with the CORRECT method without prejudice, without any modification, and without any delays.

Anyhow, in my personal opinion, whether you are rich or not, it is your responsibility to seek for the best treatment and work out all the possibilities to assist your child to get a better life.
The rest, is in God willing.

To Malaysian Orthopedics Association delegates who are going to Sutera Harbor this week, Selamat Bersidang.

Note : I can't wait to meet up my neurosurgeon coming July for annual MRI.Yippi yeahhh!!

Surgery vs Non-surgical

2009-05-16T05:02:00.000-07:00

Today I've read about something that I've almost let it happen to Dania about a year ago.

This clubfoot patient went through casting from 3 days old to 11 months, 2 weeks on and 2 weeks off.When she was 14 months she had the Achilles lengthen and bones moves around with the pin to hold everything together.Now she is 10 1/2 and she has a screw planted in her bone which stayed for a year. According to the parent their orthopedics had plan B where they plan take out some of the growth plate, to stop the growth.

Fuhhssss....,'screw' sounds scary to me...Why is this parents allow such painful treatment to his child? I think I know...When a nurse took off the operation's clips from my head a year ago, I was so scared and as expected, it was a painful experience to me. Then when Dania's early physicians plan to have 3rd surgery on her feet, I feel something is so wrong. Furthermore the physicians said they only can decide which part they want to cut on the day of operation itself. Scary eh?? They also are not sure what they wanted to do.

What if my neurosurgeon told me that he do not know which part to start to remove the tumor and he can only decide on the operation day itself? I think I'm going to faint again..

As one of my circle of clubfoot friend said which I most agreed is 'one of the greatest aspects of the Ponseti method is that it is gentle and not painful. '

Below photos are our experience from Ponseti method and the outcome...no screw no pain,only 2 scar from previous modified Ponseti method..to see the scar, double click at the most right photo..Btw, Dania clubfoot feet is at her right foot...:)

Note : Dania is 25 months old...still follow up at Bumrungrad Bangkok under supervision of Dr Amnuay Jirasirikul, the certified physician of Ponseti Method..

Dania & her dancing time at Tokyo Disneyland

2009-04-10T05:27:00.001-07:00

Last year, I keep my finger cross and I'm so sceptical whether Dania can walk by herself in Tokyo Disneyland. She just starts walking 2 months ago...on Valentine's day. In our recent visit to Tokyo Disneyland, she danced and sang happily..one of the best moment in my life...:)

She doesn't look like a clubfoot baby, don't u think so?

Share Some Info on the Dobbs Bar

2009-04-03T00:20:00.000-07:00

Hello all,

This is my first time writing in this blog. Thanks to Ina as a blog owner for inviting me to contribute something here.

i just came back from Singapore (to be exact KK Hospital). Past few weeks i noticed my son feet has relapsed due to non-compliance of using FAB. It's hard to make him wear the FAB all the time especially when he started to crawl and stand. He will show tantrums and crying out loud until we finally had to remove the FAB. After few research and communication, we found out that the Dobbs Bar is available in Singapore and can be purchased directly from KKH, which the total amount (after converting to MYR) is way cheaper compared to order directly from the U.S!
If u order directly from the U.S, the shipping cost is about USD90 (add about USD20 and u can get 1 more dobbs bar..). And maybe the item is taxable since it is considered as medical device but im not very sure..

To share some info, i bought this Dobbs bar at KK Hospital, Singapore. It can be purchased directly from Rehab Dept (non-refundable) which is open on the weekdays only. Thanks to Dr Kevin Lim from Orthopaedic Dept of KKH for the info! The cost is below MYR700 (about MYR666++ inclusive of 7% GST, however it is subject to currency exchange as well). i am calculating based on exchange rate of 2.360.

While i am writing this entry, my son is still in casting applied by Dr Halim of HUKM to correct his feet before we use this Dobbs Bar. I just can't wait to see the outcome. Hopefully he can adapt well with the Dobbs Bar. Shall revert with the outcome soon!

Jawapan yang akan membantu...

2009-03-19T23:10:00.000-07:00

Sekiranya amalan perubatan yang diterima oleh anak anda tidak sama dengan jawapan2 dibawah, anda perlu bertukar pakar dan cari pakar yang layak mengubati kaki anak anda..:)

1. "Apakah jenis simen yang akan digunakan untuk membetulkan kaki anak saya?"

Panjang Simen adalah dari ibu jari sehingga ke lutut. Simen adalah dari bahan kapur dan bukan dari ‘fiberglass’ (selalunye utk digunakan untuk dewasa). Walau bagaimanapoun, kanak-kanak dewasa mungkin memerlukan simen kapur yang digunakan bersama ‘fiberglass’ untuk mengukuhkan lagi simen tersebut.

2. "Secara purata, berapa lama untuk membetulkan kaki tersebut dan berapa kali perlu kaki anak disemen?"

Sepatutnya, pembetulan kaki sepenuhnya mengambil masa dengan purata 5 - 7 kali simen, yang ditukar ganti setiap 5 - 7 hari. Tidak perlu disimen lebih dari 9 kali KECUALI kes rumit seperti ‘arthrogryposis’. Simen TIDAK PERLU ditanggalkan malam sebelum appointment. Sekiranya kaki ditinggalkan tidak bersimen untuk beberapa jam, sedikit atau semua usaha membetulkan kaki tersebut akan sia-sia.

3. "Adakah pembedahan masih diperlukan untuk membaiki masalah clubfoot?"

Sebanyak 80% kes diperlukan untuk memanjangkan tendon Achilles dengan prosedur yang dinamakan ‘tenotomy’. Ponseti Method menggunakan ‘percutaneous tenotomy’ yang bermaksud satu prosedur yang mengunakan jarum untuk membetulkan tisu-tisu berkaitan tanpa memerlukan pembedahan terbuka. Prosedur ini tidak memerlukan masa yang panjang (10-15 minit sahaja)dan hanya dilakukan di dalam pejabat/klinik dengan ‘local anesthesia’ (bius dis tempat tersebut sahaja). Jarum akan dimasukkan ke belakang tumit. Prosedur ini tidak memerlukan jahitan untuk menutup luka dan kesan luka hanya sekecil gigitan semut. Sekiranya doktor anda memilih untuk menggunakan ‘general anesthetic’ (bius satu badan), pastikan dia masih memilih menggunakan ‘percutaneous tenotomy’ dan bukan prosedure terbuka. Selepas prosedur ini, kaki akan disimen semula selama 3 minggu untuk menyembuhkan tendon. Tenotomy hanya akan dilakukan sekiranya semua aspek clubfoot telah diperbetulkan kerana setelah simen ini ditanggalkan, kaki clubfoot sepatutnya telah pulih sepenuhnya.

4. "Berapa peratus kah sesorang pesakit memerlukan pembedahan pembetulan atau pembedahan besar untuk membaiki kaki clubfoot?"

Sekiranya doktor anda mengunakan teknik Ponseti dengan betul, beliau perlu membuktikan yang beliau telah membetulkan kaki clubfoot dengan teknik yang betul sebanyak 90% atau lebih. Maknanya, doktor anda hanya perlukan cara simen yang betul dan percutaneous tenotomy sahaja. Anda pelu bertanya kepada doktor tesebut sejak bila dia mula praktis Ponseti Method ini secara eksklusif, berapa ramai psakit yang telah beliau bantu dan berapa banyak pesakit yang telah berjaya dibantu tanpa sebarang pembedahan. Doktor anda sepatut boleh berkongsi testimonial pesakit2 lain.

5. "Apakah jenis kasut yang akan digunakan setelah pembetulan telah dicapai?"

Apabila simen terakhir ditanggalkan, pesakit memerlukan pemakaian kasut sokongan. Standard protokol ialah pesakit diperlukan memakai kasut sokongan tersebut sepenuh hari selama 2-3 bulan (23 hours/day) dan waktu malam atau tido siang selama 16-18 jam/sejari dan seterusnya 10-12 jam/sehari sehingga umur pesakit mencapai 4-5 tahun. Tidak ada alatan lain atau AFO (ankle-foot orthotic) digunakan didalam Ponseti Method ini. Risiko untuk kes berulang adalah tinggi sehingga umur 4 hingga 5 tahun. Anda boleh bertanya kepada doktor anda peratusan kes berulang dan cara-cara untuk mengubati kes ulangan.

6. "Apakah rupa bentuk kaki pesakit semasa waktu pembetulan dan selepasnya?"

Perubahan kepada kaki clubfoot akan dilihat secara beransur dan dramatik. Sebelum simen terakhir, kaki akan diletakkan pada arah 70° (akan dilihat over corrected tetapi memang akan diperlakukan sebegitu). Arah 70° itu juga akan di letakkan semasa pesakit memakai kasut sokongan. Kurang dari 70° adalah tidak boleh diterma pakai. Ada kajian oleh Universiti Iowa bahawa risiko kes berulang adalah tinggi sekira kaki diletakkan pada kurang dari 70°. Tambahan pula sekiranya kes berulang, pendekatan untuk melakukan pembedahan adalah tinggi. Kaki clubfoot perlu dipulihkan sebelum memakai kasut sokongaan. Kasut sokongan perlu dipakai bersama palang (bar).

Satu lagi, sekiranya doktor anda mengaku yang dia pernah menjalani latihan di bawah kelolaan Dr Ponseti atau pernah ke Iowa University atau mengaku beliau yang mengamalkan Ponseti Method tidak bermakna dia pakar dalam teknik ini.Oleh itu, anda perlu mencari rujukan dari pakar lain.

>Terjemahan dari http://members.tripod.com/ponseti_links-ivil/id13.html<

Good Article..by Dr Matthew Dobbs

2009-03-14T08:37:00.000-07:00

For our reading..

http://orthoinfo.aaos.org/topic.cfm?topic=A00296&return_link=0

by the way, this is our photo with Dr Amnuay Jirasirikul, the certified Ponseti Doctor in Bangkok.

Markell vs Mitchells

2009-03-14T07:37:00.000-07:00

Both FAB shoes are used to ensure the corrected feet stay corrected.

But what is the difference?

The Ponseti AFO Brace (also known as the Mitchell brace) made by MD Orthopaedics has been available since 2005. It's more expensive than the Markell FAB but is more comfortable and easier for the baby to adjust to. Dr Ponseti is involved in the design of the Ponseti AFO/ Mitchell brace and it is especially recommended for children with very small feet or complex clubfoot.

Mitchell shoes was originally developed for atypical clubfoot.

All of my clubfoot circle in Malaysia wears Markell since it easily can be purchased locally..Globally, now everybody is supporting the Mitchell shoes...and now we have new patented BAR developed by Dr Dobbs..:)

Dania is wearing Mitchell since a year ago..She is comfortable with Mitchell..I noticed with Mitchell we can ensure the heel is flatten from the heel window..Previously when we we got our false treatment in HKL, there a lot of clubfoot patient wearing markell without a brace..There is no point to wear the FAB without the brace..There is also some patients wear it as a walking shoes...

What do u say?

Finally..she can walk

2009-02-13T19:14:00.000-08:00

In nosurgery forum, there are parents who had clubfoot child is worried about the delayed walking.
I'm worried too and I've plan to bring Dania to physio theraphy..But she is now standing tall and walk officially on her 22 months 13 days..I will find a good video on her first walk..

So parents out there, dont worry, they will walk soon as they are ready..

cheers everyone!!

Walking Question during Mitchel brace period

2009-01-20T05:49:00.000-08:00

xoxojax14-My son is 13 months and in
his Mitchell Brace 12 hrs at night. Sometimes he wakes up SCREAMING
and nothing eases him until I take the bar off (leaving the shoes on)
and then he goes right back to sleep. I have gone nights without
putting it on because he is so miserable. Doc said his feet look
great. Do you ever leave your child's bar off? JW if anyone else's
child is this way. I think maybe their legs fall asleep being in that
position for so long, mine would! I feel so bad for him as soon as I
put it on, it still breaks my heart. He can never get comfortable and
sleep in his favorite position without having trouble.

Shannon-I put James in his shoes at night
I usually put them on early while he is still in a good mood and then
I don't connect the bar until bedtime. Even so, he's still getting his
12 hours in. Remember, the bar is the key part to the whole thing.
It's what keeps the correct angle of abduction and dorsiflexion.
Without the bar it's just like wearing a stiff pair of shoes.
As for walking, James walked at 15 months, a little later than some of
his buddies but a little sooner than others. I don't think having
clubfeet hinders when they start walking.

Winter-I just went through this with my 19 month old son. He has been so
crabby lately and not sleeping well at all and unconsolable at times
during the night. First I thought it was because he was getting 2 new
teeth. Then I thought it was his tummy he has some GI issues and sees
a specialist. So I took him to the pediatrician to take a look at him
check his ears and rule that out. He was fine. That night I took a
look at his bar and noticed that it looked shorter for some reason.
Turns out the screws in the little back piece were loose and every
time he banged his feet around it was making the bar shorter. So I
adjusted it tightened the screws, well he slept through the night!!
He has been much happier. It is amazing what a difference it made.

My experience? Dania is a good girl so far..she never complaint and while tighting the shoes strap, I've explained to her why she need to wear the special shoes..She seems to understand..She can sleep comfortably with the shoes and sometimes she even wants to walk when the brace is still on...I'm so lucky right to have her?

So how is your children cope with the brace?

Happy New Year!!

2009-01-07T05:27:00.000-08:00

Happy New Year everyone and thank you 2008.

Resolution - to give more and frequent info on clubfoot & Ponseti treatment for all Clubfoot parents particularly Malaysian.

Tenotomy experience

2008-12-04T06:00:00.000-08:00

The parent's of clubfoot child shared their experience on their child's tenotomy.I've extracted this info from the nosurgery4clubfoot at Yahoo health forum.You may join the group too.Very informative and active forum.

Lisa- Our daughter Avery (RCF) had her tenotomy at 6 months of age a few
weeks ago. They used the cream (applied an hour before), and we gave
her Tylenol. We wavered on staying in the room, but decided to and
were very glad we did. Honestly, I think we would've regretted not
being there for our little one. It was VERY fast and all over quickly. AFTER they cut the Achilles
they gave her a lidocane shot directly into the site, and she was
feeling less pain soon after. They let us cuddle with her for a
while, then put her holding cast on after she was well comforted.

Korinne-My husband and I were both in the room for it...Dr. Morcuende did it, while Dr. P held my son's foot. My husband actually watched as they cut, I just looked into my baby's tear filled eyes...it was hard, but soooo worth it.

Amber -The tenotomy isn't that bad. They used a cream on Brody's heel. I held him and my hubby was in the room too. He cried more getting his casts on than during the surgery. Honestly they only poke a scalpel into his heel and I think I saw one drop of blood. I was a WRECK going in but then when it was over I thought "wow, that was nothing"! The incision is this long --- We take our son to UVA so it was the Dr, my husband, me, a nurse and a resident in the room.

Jocelyn - My son has his heel cord cut at 8 weeks old. He slept through the whole thing! They didn't even need use any anesthesia, and he was only out of my arms for 20 minutes. I would have loved to be in the room holding him, but that wasn't an option for us. He experienced a little bit of spotting but it didn't bother him at all. he was immediately lifting his legs and kicking away!

Ana Teixeira-Yeah, according to Dr. P technique, it is not necessary to be in a surgery
room with general anesthesia. I could hold my baby and we couldn't believe
he even slept during the procedure! Don't worry it is very simple and the babies don't feel any pain or
uncomfortable.

Tovey - We had Jack's tenotomy done in Iowa with Dr. P. Dr. M. actually did the procedure, but Dr. P was there too. I elected to not be in the room since it is hard to see Jack cry and I also had my other two little ones with me. My husband stayed with Jack and he said it wasn't a big deal. I believe they used a cream, but I'm not positive. Jack didn't cry when they did the tenotomy, but he cryed when they put on the betadine. He cryed less during the tenotomy then he did every cast change. I seems a little scary, but it is quick and not so bad:)

My experience?
It was done in Paed Operation Theater, HKL . I remember it was Monday and first case in the morning.It was like sending Dania to big operation. Doctor do not really explain what is tenotomy but they've only explained that they are going to cut the stubborn tendon. I was so sad because Dania need to fast before and after the procedure. She fast about 4 hours before & after the procedure and she cried for milk.After the surgery, u know what the Ortho Surgeon Consultant told me? 'Actually Dania's feet is not ready for tenotomy. But we shall see what we can do to help her'...huh?

Good News for HoneyD and all of us

2008-11-02T06:56:00.000-08:00

I've met this lady, HoneyD virtually in one of the local forum community.
Her cute little Adam had BCF and has gone few serial of casting at one of the private Hospital in JB.

In July, she sent me 2 photos of Adam's feet and she also sent these 2 photos to Dr Ponseti.

So, I suggested her to see Prof Sharaf and she did.
After few months, now Adam's feet is already corrected.

[All photos are courtesy and given permission to published by HoneyD]

I'm very very happy for Adam and his parents.
Atleast, they are not suffering longer time like us.
Ponseti Method has able to make one life to walk as normal child...:)

To HoneyD, thank you for believing me and we should not stop here.
To Prof Sharaf, thank you for helping us.Maybe you should publish this method in the newspaper.So that others will know and appreciate.I will continue my part to bring the awareness virtually.

Ponseti Method has brought me to many friendly and helpful friends.

New Ponseti Certified Doctor at Neighbourhood

2008-10-28T06:45:00.000-07:00

Proudly announce that :-

Singaporean's Ponseti Certified Doctor

Dr. Kevin Lim
Dept. of Orthopaedic Surgery
KK Women’s and Children’s Hospital
Singapore 229899
www.kkh.com.sg
Phone 65 6394 2171
kevin.lim.BL@kkh.com.sg
milnivek@pacific.net.sg

Malaysia ku Boleh!!!!

p/s: Author still prefers to go to Bangkok, currency still cheaper & treatment guaranteed..

Ponseti's clubfoot patients get off on right foot - an article from Iowa City Press

2008-10-06T08:34:00.000-07:00

Three-year-old Logan Maloney is "very much a mover."

He likes to play soccer in the front yard daily and runs around as much as he can, said his mother, Kerry, of Palatine, Ill.

"We're outside pretty much until it gets freezing out there," she said.

This energetic mobility wasn't always possible. Logan was born with clubfoot, characterized by a deformity of the foot that causes it to turn inward.

At 7 days old, the Maloneys brought Logan to University Hospitals to see Dr. Ignacio Ponseti, a world-renowned expert on clubfoot and the inventor of a non-surgical way called the Ponseti technique to treat the condition through gentle manipulations and plaster casts.

Ponseti's young patients returned Saturday, showing off their treated feet by running happily around the UI Recreation Building during the fifth annual Ponseti Clubfoot Races.

"It's very pleasant to see all these children and their families," Ponseti said. "It's quite an accomplishment ... such good results."

The races also are the final event of the two-day symposium "Treatment of Congenital Clubfoot -- The Ponseti Technique" for orthopaedic surgeons. Clubfoot appears in about one in 1,000 births in the United States.

"It's awesome. It just makes you cry," Kerry Maloney said about watching the children race down the track to Ponseti and his wife, Helena.

"It really does happen," she said. "He's the best."

Paula Holland's 4-year-old son, Logan, had a new set of green casts on his feet during Saturday's races because he went into a relapse in July. That didn't stop him, however, from running with the rest.

When Logan Holland saw Dr. Ponseti for the first time when he was 6 months old -- the fourth doctor to work to treat his clubfoot -- Ponseti said it was the worst case he'd seen in 25 years, said Paula Holland, of Bryan, Texas.

"We knew that he may have a relapse," she said.

Holland said she has complete faith in Ponseti and his method.

"What other doctors couldn't do in 22 weeks, Dr. Ponseti did in four," she said. "When you have the right doctor doing the right thing, and he loves the children as much as you do, it's just amazing."

"He has God's hands," she said. "God literally gave his hands to Dr. Ponseti to use."

Eid Mubarak

2008-09-29T14:50:00.000-07:00

Dear Muslim Clubfoot supporters,

Salam AiDiLFitri to all of you and hopefully we have find our long lost soul during Ramadhan and re-gain our true sipirt of ourselves, Amin!

This is the very first time for Dania celebrating Aidilfitri without her cast!!Wuhuuuu...photo attached was during last year Aidilfitri...:)

Last year, she is still in casting [after 2nd surgery] and personally I thought that Dania will still be in casting and no idea the casting will be ended this soon..Now she is in Mitchell shoe 10-12 hours at night time...

Thank you to all my nosurgery4clubfoot circle of friends who actually lead us to Dr Ponseti,Dr Dobbs and of course Dr Amnuay.

This weekend will be the Ponseti Symphosium at Iowa, I've doubt there is representative from Malaysia [yelahkan Raya time]... hmm...maybe I'm wrong..anyway they don't bother to spread this method sincerely...[so sad!!]

-Ina & Dania

From my eyes

2008-09-14T08:12:00.000-07:00

I was about to write the different between Original Ponseti Method [O.P.M] vs Malaysian own Ponseti [I referring to what Dania has gone through] long time ago..I may add more as at when I remember..

1. O.P.M - casting could only takes not more than 7 times but in Dania case, I think it is more than 15 times. huh? Through Ponseti websites, casting more than 7 times is a signal that the treatment is in fault...Hulalala...The treatment can be shortened by changing the plaster casts every five days....in HKL, the casting change every 2 weeks...

2. O.P.M - you can only removed the cast about an hour before new cast applied but in Dania case, we need to do it at home before we reach Hospital.

3. O.P.M - the infant should not be in struggling mode to ensure the casting is well applied but in Dania's case or even her friends, crying out loud like no body business.In Bangkok, Dania was put on sleep during the manupulation to ensure the Ponseti casting method is well applied.

4.O.P.M - Surgeons with limited experience in the treatment of clubfoot should not attempt to correct the deformity. They may succeed in correcting mild clubfeet, but the severe cases require experienced hands. But in Dania's case, in HKL there is none of them is Ponseti certified and no wonder they can't help that much. In HKL, the check up is done by the Medical Officer [MO] but the casting is applied by the so call orthopedic specialist...hmm I'm so speechless...I still keep some of Dania's cast at home since the cast can easily slipped off.Hmm, no wonder!!

5. O.P.M - In order to prevent relapse after following the casting process, the child will be fitted with a splint consisting of a bar with high top, open-toed shoes.The child will need to wear this splint full-time for the first 2-3 months and then at night for 2-4 years. In HKL, we saw a lots of clubfoot kids wearing Dennis Brown shoe without a bar and they wear the shoe as walking shoe!!!!! Dania could be one of them but we were lucky, Dr Ponseti direct us to the right person.

So parents out there, please visit Ponseti International website to understand more on this method and Good Luck!!

Malaysia Boleh!

2008-09-11T04:30:00.000-07:00

Last Tuesday, we went to HKL [again!] for Dania's premature progress check up. Bilik No 10 , we waited about 30 mins before our turn. The paed was a Indian/Sikh Lady,very warm and friendly. Very soft spoken but Dania's trauma started when the paed tried to talk to me.The Paed asked about her clubfoot feet.

Paed : How's her clubfoot problem, mem?
Me : Yeah, corrected and we got it done in Bangkok but not here..;p
Paed : Oh, You went to Bangkok? Their treatment is good?
Me : Much better and you wont get it done fast in Malaysia.
Paed : Oh ok...as long as her feet is corrected kan..[smile]..
Me : Yeah, you are right . [The option is only applicable for those can afford, Doc.What happen for those who can't afford?The HKL paed Orthopedics is still sleeping, can u wake them up?Hmm I don't think Prof Sharaf can take them all]

Oh ya I met one of the lady who was used to make Dania's splint, and show her Dania's feet [proudly].Yes, she still remember us..:)

Malaysia ku Boleh!!

Update

2008-09-02T05:22:00.000-07:00

Hari ini saya rasa terharu seorang ibu berterima kasih dengan saya kerana menemukan beliau dengan doctor yang pakar dlm Ponseti method ini di HUKM. Walaupon masih didalam progress, tetapi baliau sudah nampak keberkesanan dan kaki anak anak beliau nampak banyak perubahan dari cara Ponseti tersebut.Saya bersyukur kerana usaha saya yang sehalus kuman ini dapat membantu beliau dan keluarga. At least, beliau tidak mengalami apa yang kami telah alami di HKL.Saya masih lagi marah atas apa yang berlaku tapi marah saya semakin reda.

Malay translation

2008-08-07T04:55:00.000-07:00

I'm trying to translate some of this Ponseti Method info to local language...a big challenge to me..I will find time to translate..be patience..:)

Tippie MBA Students Help Spread the Word about Ponseti Clubfoot Treatment

2008-07-17T07:38:00.000-07:00

Release: May 15, 2008

A group of Tippie MBA marketing students has spent the last year looking for ways to market the Ponseti method of treating children with clubfoot. They found that good news doesn't always travel fast.

Despite 50 years of success, many physicians in the United States are still not fully aware of, or even practicing, the revolutionary nonsurgical treatment developed by University of Iowa Health Care's Dr. Ignacio Ponseti. A marketing report compiled by the Tippie students over the past year said this lack of awareness comes despite the fact that the Ponseti method has been declared the standard of care for clubfoot by major U.S. health care professional organizations.

"There's still such a low rate of occurrence of clubfoot, with only about 5,000 children born each year in the United States with the condition, that doctors don't see patients very often," said Amber Fourcault, a second-year full-time MBA student and a member of the group. "Quite often, we heard from doctors that they see only two or three clubfoot cases every five years."

The report was commissioned by the University of Iowa-based Ponseti International Association as part of its effort to increase awareness and usage of the Ponseti method, first developed more than 50 years ago by the professor of orthopaedics at the UI Carver College of Medicine. His method involves gentle, manual manipulation of the child's foot and application of toe-to-groin plaster casts. The casts are changed weekly after a clinician manipulates softened foot ligaments to gradually achieve near-normal muscle and bone alignment.

Five Tippie MBA students -- Fourcault, Adnan Fazal, Emily Gander, Brandi Gibbs and Su Zhang -- worked on the marketing plan during the past year as part of a marketing class taught by John Murry, professor of marketing in the Tippie College of Business. The students came to their recommendations after talking with hundreds of orthopedists, obstetricians-gynecologists and family practice physicians across the United States, as well as in India and China.

In their report, the students suggested the Ponseti International Association take steps to better manage the information flow regarding the method to improve awareness and reduce confusion.

"We suggest they make Ponseti a brand, to manage it and control it and establish a presence that would make them the authority on the Ponseti method," said Fourcault.

One easy and inexpensive step would be to establish a comprehensive Web site about Ponseti, and market it is as the authoritative source of information about the method. The Web site would eventually replace pamphlets and other printed materials that the students discovered don't always get to the doctors or the patients.

"Print materials are an ineffective use of resources," said Fourcault. "Electronic material is easy to send and update, and it doesn't cost much money."

During their research, the students found physicians who said they used the Ponseti method, but in fact were not, or were using modified versions. Fourcault said the doctors weren't maliciously trying to trade on the Ponseti name, but simply didn't realize they weren't doing the Ponseti method as it was developed by Dr. Ponseti.

"Many of these doctors treat so few patients that they've forgotten some of the details, or they added steps that aren't a part of Dr. Ponseti's method," Fourcault said. "The problem is that if they say they're using the Ponseti method but they're not, and it doesn't work, then that reflects badly on Ponseti."

The students recommended that once the brand is established, the association should publicize it at national medical conferences, publish a Ponseti newsletter, and create a network of Ponseti-qualified physicians to promote the method.

The Ponseti International Associate has already taken steps to build the Ponseti brand. A Web presence was established in 2007 at www.ponseti.info, and the first-ever international conference of Ponseti practitioners was held in Iowa City. A second international conference is planned for 2009.

Jose Morcuende, M.D., associate professor of orthopaedics in the UI Carver College of Medicine and president of the Ponseti Association, said board members appreciated the group's work and ideas.

"They did a great job of looking at things from the perspective of the business side, not physicians, and they identified areas we have to work on to make the Ponseti name more widespread," said Morcuende. "They also identified that we have to use different programs and different messages in different countries."

He said the report shows the association must do more to correct misconceptions about the Ponseti method (for instance, that the treatment lasts for years; in fact, it is usually only three to six weeks for the correction of the foot by casting, followed by a simple, comfortable nightbrace for two to three years to prevent relapses). The report also suggested the association look for new ways to introduce the method to China and India, where clubfoot patients are seen as social pariahs and little is done to help them lead a normal life.

"Clubfoot can be eradicated around the world in 10 years if we had the resources to implement the programs," he said. "This report will help us find new ways to get the word out."

Source: UI News Services
Writer: Tom Snee
Contact: Tom Snee
UI News Services
319-384-0010

Ponseti Method

2008-07-10T04:54:00.000-07:00

"Parents of infants born with clubfeet may be reassured that their baby, if otherwise normal, when treated by expert hands will have normal looking feet with normal function for all practical purposes. The well treated clubfoot is no handicap and is fully compatible with normal, active life." Ignacio Ponseti, M.D.

The majority of clubfeet can be corrected in infancy in about six to eight weeks with the proper gentle manipulations and plaster casts. The treatment is based on a sound understanding of the functional anatomy of the foot and of the biological response of muscles, ligaments and bone to corrective position changes gradually obtained by manipulation and casting.

Less than 5% of infants born with clubfeet may have very severe, short, plump feet with stiff ligaments, unyielding to stretching with a deep transverse skin fold across the sole of the foot and another crease above the heel. These babies require special treatment and may need surgical correction. The results are better if bone and joint surgery can be avoided altogether. Surgery in the clubfoot is invariably followed by scarring, stiffness and muscle weakness which becomes more severe and disabling after adolescence.

The treatment should begin in the first week or two of life in order to take advantage of the favorable elasticity of the tissues forming the ligaments joint capsules and tendons. With our treatment these structures are stretched with weekly, gentle manipulations. A plaster cast is applied after each weekly session to retain the degree of correction obtained and to soften the ligaments. Thereby, the displaced bones are gradually brought into the correct alignment.

Five to seven plaster casts extending from the toes to the upper thigh with the knees at right angle should be sufficient to correct the clubfoot deformity. Even the very stiff feet require no more than 8 or 9 plaster casts to obtain maximum correction. Before applying the last plaster cast which is to be worn for three weeks, the Achilles tendon is often cut in an office procedure to complete the correction of the foot. By the time the cast is removed the tendon has regenerated to a proper length. After two months of treatment the foot should appear overcorrected. Recently we found that the treatment can be shortened by changing the plaster casts every five days.

Following correction the clubfoot deformity tends to relapse. To prevent relapses, when the last plaster cast is removed a splint must be worn full-time for two to three months and thereafter at night for 3-4 years. The splint consists of a bar (the length of which is the distance between the baby's shoulders) with high top open-toed shoes attached at the ends of the bar in about 70 degrees of external rotation. A strip of plastizote must be glued inside the counter of the shoe above the baby's heel to prevent the shoes from slipping off. The baby may feel uncomfortable at first when trying to alternatively kick the legs. However, the baby soon learns to kick both legs simultaneously and feels comfortable. In children with only one clubfoot, the shoe for the normal foot is fixed on the bar in 40 degrees of external rotation. During the daytime the children wear regular shoes. Shoes attached to the bar often cause pressure blisters and sores. To prevent such distressing problems, we have devised a new foot and ankle abduction orthosis that holds the foot firmly and comfortably in place, causing no sores.

Since the surgeon can feel with his fingers the position of the bones and the degree of correction, X-rays of the feet are not necessary except in complex cases.

When the deformity relapses in spite of proper splinting a simple operation may be needed when the child is over two years of age. The operation consists in transferring the anterior tibial tendon to the third cuneiform.

Poor results of cast and manipulative treatments of clubfeet in many clinics indicate that the attempts at correction have been inadequate because the techniques used are flawed. Without a thorough understanding of the anatomy and kinematics of the normal foot and of the deviation of the bones in the clubfoot, the deformity is difficult to correct. Poorly conducted manipulations and casting will further compound the clubfoot deformity rather than correct it making treatment difficult or impossible.

Surgeons with limited experience in the treatment of clubfoot should not attempt to correct the deformity. They may succeed in correcting mild clubfeet, but the severe cases require experienced hands. Referral to a center with expertise in the non-surgical correction of clubfoot should be sought before considering surgery.

Dear Malaysian readers,

If you can afford, I would advise you to go straight to Dr Amnuay Jirasirikul at Bumrungrad Hospital, Bangkok as he is a certified Ponseti Method doctor.He is strongly recommended by Dr Ponseti himself.Full non-US based doctor list can be browsed here.

But if you think that you want to give our local doctors a chance to prove their skills, all you need to do is to bring along a referral letter from the current doctor and contact any of the Paed Orthopedic below. I got this list from Prof Sharaf.

abdrazak@kb.usm.my, Dr Abd Razak Sulaiman HUSM
abdrazak_muhamad@yahoo.com, Dr Abd Razak HKL
ahmadtajuddin@yahoo.com, Dr Ahmad Tajuddin HKT
atiqahsuzanna@yahoo.com.my, Dr Atiqah HKT
azliukm@yahoo.com, Dr Azli HKL
bobpenafort@yahoo.com, Dr Robert DSH
burza92@yahoo.co.uk, Dr Burhan Hosp Ampang
drhalimrashid@yahoo.com, Dr Abd Halim HUKM
drmuhammadafif@yahoo.com, Dr Afif HKL
ismailmu@kb.usm.my, Dr Ismail HUSM
kamariahnor@yahoo.com, Dr Kamariah HKL
joharishikin@yahoo.com, Dr Shikin HKL
rahata@fmhs.unimas.my, Dr Hata Sarawak GH
sawaik@hotmail.com, Dr Saw Aik UH
shukrimi72@yahoo.com, Dr Shukrimi Hosp Kuantan
ssenkl@hotmail.com, Dr Sengupta UH
sumei_y@yahoo.com, Dr Yong Su Mei UH
yaacobas@yahoo.com, Dr Yaacob Hosp Seberang Jaya
zulpeadortho@yahoo.com Dr Zul Osman HKL
sharaf@mail.hukm.ukm.my Dr Sharaf HUKM

Please bear in mind, none of the Doctors listed as above is a certified Ponseti Method Doctor, but we hope someday, one of them will.

Anyway, whenever you have doubt with the treatment given, you can always email to Dr Ponseti at ignacio-ponseti@uiowa.edu for his opinion and do not forget to attach the patient's clubfoot photo.

Facts

2008-07-05T22:12:00.000-07:00

What is Clubfoot?
Clubfoot, or talipes equinovarus, is a treatable birth defect that affects approximately 150,000-200,000 children each year. When clubfoot occurs the foot is twisted inward and down, and this condition occurs during development in the womb. Physicians have observed that fetuses that develop clubfoot start with a normal foot and then the foot begins to turn inward around the third month. Most children born with clubfoot are not missing any bones, muscles, or connective tissue. It is a congenital condition, meaning that when it occurs it is always present at birth. It is one of the most common congenital deformities. One or both feet may be affected and the affected feet can range from relatively flexible to stiff and rigid. The condition is not painful for the new born, though when a child gets to walking age, walking with an uncorrected clubfoot can be very painful and difficult, if not impossible.

When will you know?
Parents will know at birth if their child has clubfoot because the foot will be twisted inward. Some cases are diagnosed during a routine ultrasound. If you are wondering if your child has clubfoot, contact a physician who has experience in diagnosing this condition (not all pediatricians know how to diagnose clubfoot).

Malaysia's fact (shared by Prof Sharaf of HUKM)
Boo NY, Ong LC.
Department of Pediatrics, Faculty of Medicine, National University of Malaysia.
A study was carried out on 8,369 neonates delivered in the Maternity Hospital, Kuala Lumpur over a period of four months. Forty-nine neonates (5.6 per 1000 livebirths) had congenital talipes. The incidence of congenital talipes equinovarus (CTEV) was 4.5 per 1000 livebirths while that of congenital talipes calcaneovalgus (CTCV) was 1.3 per 1000 livebirths. 6/11 (54.5%) of the CTCV was unilateral, the ratio of right to left feet involvement being 1:1. Only 12/38 (31.5%) of the CTEV were unilateral, the ratio of right to left feet involvement being 1:2. Congenital talipes was significantly more common in the low birthweight neonates (p less than 0.001). However, the condition was not significantly more common in neonates with breech presentation nor in those born to primigravida mothers. Our data suggested that multifactorial genetic background as the most likely underlying cause of congenital talipes in Malaysian neonates.

Residual deformity following surgical treatment of congenital talipes equinovarus.
Simbak N, Razak M.
Universiti Sains Malaysia, Kelantan.
A study was carried out on 24 patients (36 clubfeet) surgically treated at the Orthopaedic Department National University of Malaysia, Kuala Lumpur, over a period of four and half years. Nine feet underwent posterior release, 24 feet underwent posteromedial release combined with Evan's procedure. The overall operative result was 63.3% good, 9.5% fairly and 27.2% poor. Patients who underwent surgery between 3 to 12 months showed a high percentage of good results (66.7%). Metatarsal adduction was found to be the commonest residual deformity (63.9%), followed by heel varus (11.1%), cavus (11.1%) and equinus (5.6%). Inadequacy of primary surgery and post operative period of immobilization resulted in a significant high failure rate.

What does Dr Ponseti thinks on the surgery?
Ignacio Ponseti, MDDepartment of Orthopaedic Surgery, University of Iowa Hospitals and Clinics
Surgery does not "cure" clubfoot. It improves the appearance of the foot but diminished the strength of the muscles in the foot and leg, causes stiffness in the second and third decade of life, if not earlier, limits the motions of the foot joints, and the foot becomes often painful at midlife. Surgery does not prevent the recurrence of the deformity in a number of cases. To my knowledge not followup studies of operated patients older than 16 years of age has been published to date. Therefore, orthopaedic surgeons are ignorant of the results of their surgeries.
Foot and ankle surgeons, however, who treat adult patients have noticed that those surgically treated for congenital clubfoot in infancy have weak, stiff and often very painful feet.

The objectives

2008-07-04T06:29:00.000-07:00

Dear readers,

Thank you for your visit.
This blog is dedicated to the parents of the babies & children born with clubfoot, was a clubfoot's patient, and clubfoot's supporters. This blog is also for the public who are able to contribute in terms of ideas, opinion, experiences, motivation to us.Feedback are welcome. However, please bear in mind that every comments are viewed by others as well.

For a start, as a parent of unilateral clubfoot baby, I would like to inform to all parents that this deformity is able to be corrected WITHOUT surgery(s). Please seek for early treatment once it is detected from the expertise, the real one. If possible, find the certified Ponseti method doctor. You can't find anyone in Malaysia YET, but we hope to have at least one soon.