Sorry, it's been 4 years!

I didn’t write in this blog for so many years and March 2012 was the last one. My version is very much different from Kak Ina because Adam was reluctant to wear FAB, DB Bar, we faced so many challenges resulting discontinuation of treatment at hospital since he was 4 years old! Click here to read the post. Wow that means it’s been 4 years since my last post.

My Adam now is 8 years old. He went to school like normal kids, he walks, he runs, he climbs, he jumps like any other kids as well, it just that his both feet still turn inwards whenever he does the activities. He is getting used to it even though he can still correct his feet while standing whenever I asked him to. As a mother, I never stop worrying. Deep inside, it hurt so much thinking I am not able to give him treatment that he deserved and I wonder whether it is too late now? I made some research recently and I think I found “something” that might be able to help Adam. I’ll share with you later, maybe in next post – no, it’s not going to take another few years, lol. Before that let me share what we’ve gone through after my last post in 2012. If you have read the post, it was my intention to continue treatment, it just that I do not know where to go whether to Singapore or Bangkok (which is actually not into our consideration due to cost and time factor).

We went to KK hospital in Singapore to seek treatment from one of Ponseti method certified doctor (not sure whether he is still certified Ponseti doctor), Dr Kevin Lim on May 9, 2012. I sent an email to the Doctor and after that receive appointment schedule to choose. During treatment the doctor said Adam has mild residual metatarsus adductus which personally I do not know what was that and we just follow doctor advise to apply casting. I was shocked at the moment when the Doctor said he wants to apply fibre glass casting instead of plaster casting which is not accordance to Ponseti method. It costs us about MYR1000 (after currency conversion from SGD) for both feet casting BELOW KNEE LENGTH. He said my kid already 4 years old and would be difficult to walk around, etc, and I just nod my head dumbly because my mind was flying somewhere else, thinking that I made a wrong decision by seeking treatment here. We never come back for follow up treatment and the casts were removed by my husband at home.

In August 2012, I discussed with my husband to bring Adam to Bangkok so that we can get treatment from Dr Amnuay. He seems reluctant to agree at the first place and later agreed when I said I need 2^nd opinion to treat our son. At least we try not to let him left untreated. I made an appointment through Bumrungrad website, we chose appointment date on November 6, 2012 @ 0720hrs and received appointment confirmation. I purchased flight tickets for 4 of us. Few days after that I received an email from the hospital saying that Dr Amnuay would not available on the date of appointment and I replied them saying that I’ve bought flight ticket after received their appointment schedule confirmation.  The next day it was a reply from Dr Amnuay forwarded by the hospital Email Management, asked us to come.  So I arranged all the necessities until suddenly I was inform via text message that Dr Amnuay has taken leave (if I’m not mistaken) and other Doctor will replace him to examine Adam. I still remembered I just checked in to the hotel (a day before appointment) and was walking down the street towards BTS Nana and I can see clearly Bumrungrad hospital when I received the text message (international roaming) from the hospital. I was so frustrated and my husband decided not to go for the appointment so we just sightseeing Bangkok, did a little shopping, find a good meal + halal place, went to Pattaya for a night and our total stay are  4 days + 3 nights. J At least it was not so stressful over our disappointment.. Consider myself not lucky as most of you, who managed to get Dr Amnuay, ya..

Back to Malaysia, I dare not tell my husband about going to Bumrungrad again. I just bought new Markell shoes for Adam and we put on him while he sleeps at night. It can lasts on him for about an hour only before he cried and struggled to get the shoes off from his feet. Since then there’s no more treatment until now..

So it's now 2016 and I want to see an improvement on Adam's feet! 

Dania runs!

Have you ever give up on casting, night braces ?

Have you ever thought that your clubfoot baby is not able to walk or run like any other baby?

Have you ever thought that one day you will run with your clubfoot child?

We did!

We run Cyberjaya !!!

2015 visit to Bangkok

Countless visit since Dania was 1 year old.

We slip last year because Durra was still small and it is so trouble to bring 2 toddlers in a flight.

Since Hokkaido trip last March, my kids suit themselves with journey in flight.

This is the finding of Dania's recent follow up in Bangkok.

1. From the X-ray her abnormal bone shows better location that previous years.
2. Last 2 years by looking at the X-ray, she has the potential to relapse. But the X-ray shows the feet looks better now.
3. Her calf looks smaller as per previous X-ray. but it is normal for unilateral clubfoot.
4. Dorsiflexion satisfy the minimum requirement.
5. She is required to do more stretching and exercising on her own.

Dania has more confident when converse with Dr Amnuay during this trip.
Before this she just keep quite and asked for translation.

The next follow up will be next 2 years but we will take yearly follow up instead.

Picture above is Nurse Naan.
She is leaving us to migrate to US.
She is now married with American.
She has been with us for the past 7 years.
Thank you Naan for your support through out this year and all the best to you at your new place.

MALAYSIA 1ST WORLD CLUBFOOT EVENT AT KUALA LUMPU

3^rd June has been chosen to celebrate World Clubfoot Day and the date is also late Dr Ponseti birthday.

Malaysia society is still new with clubfoot and society is not aware on the possible non-surgical treatment of the clubfoot. 8 years ago, there is lack of information on the clubfoot over the internet  and there is no specific technique applied to treat this deformity mentioned by our own doctor. Therefore, I have decided to meet Dr Amnuay in Bangkok after series of casting failed in Malaysia.

The community of Malaysian Clubfoot has been increased for the past 3 years and thank you to Facebook and Malaysia Clubfoot Blog. Members of the Facebook group have suggested to do a small gathering to gather all of us in one event which can be benefited to everyone.

When Ponseti International announced 3^rd June is the World Clubfoot Day, we have decided to have a small event to celebrate and also to gain experience from the parents as well as the medical expert. Our 1^st Malaysia World Clubfoot event aims to spread the awareness of the Clubfoot within Malaysian and to promote Ponseti Method as the best treatment to treat clubfoot. This one full event was attended by parents of the clubfoot and their children and also the medical experts. There are about 90 parents attended and 12 medical practitioners came to this event.

We have one morning session for parents to share their knowledge and experience on the clubfoot  journey and in the afternoon, we have talk by 2 local Orthopedic Surgeon which are Dr Ong Shong Meng from Sunway Medical centre, Dr Yong Su Mei from Tun Shin Hospital and also our guest of honor from Bangkok , Dr Amnuay Jirasirikul. After the talk session, we have  4 lucky feet has been selected to be assessed by the doctors, reviewed and next course of action to be taken by the doctors. In this session, Dr Amnuay has shared his approach to handle the clubfoot with the local doctors and they also exchanges views with others.

From the event, parents have gained new knowledge on how to handle their children during Ponseti Method Treatment especial during casting, bracing and also relapse prevention. The questions and answers session has also helped the parents to understand the deformity better and has been convinced that the deformity can be corrected with the right technique and without massive surgical correction.

Credit to all members of the FB Clubfoot Malaysia – Ponseti for Clubfoot

Comments

Salam Everyone,

Lama tak menjenguk Blog ni.
Saya dapati ada 4 comments yang terlepas pandang.
Saya tidak dapat notification email on this comment earlier on.
Saya akan mencari masa untuk selalu kemaskinikan blog clubfoot ni ye!

Happy World Clubfoot Day Everyone!!

My thousand apologies...

Salam everyone...

My apologies..
It has been a while..most of my ilmu has been posted in this blog..please feel free to browse..
Probably in my next post, I will share what kind of exercise yang Dania currently doing to maintain his feet position..
Tunggu I get the best angle..

Those who want to share their experience, join me at Malaysian Clubfoot at Facebook.
It is a closed-group but you are always welcome to join us.

It's time to continue treatment!

Assalamualaikum w.b.t.

Been sooooo long since my last posting in this blog. I had really nothing to share with you guys on Adam’s feet condition because we just leave everything naturally and no treatment at all for almost 2 years. Yeah, you heard me right. No treatment at all.

this is Adam's feet now. but the feet still turns inward whenever he walked especially the left one. 

If you were following this blog since then, you might know the whole stories on challenges i faced especially the difficulties to get Adam wear FAB since early stage. To recap, he had tenotomy on both feet when he was 9 months old. We can see his feet corrected after the tenotomy but then he had relapsed due to non-compliance of wearing FAB. He never successful to wear FAB while sleeping! The last time we went to HUKM to cast his feet was 2 years back and the casting can only last for 7 hours before he fussed, cried and screamed out loud until we finally got the casts removed and i was pretty sure he felt itchy actually.

Our stories are very much different with Zarina’s. I know things were very hard on her as well but she’s luckier because Dania did not make fuss when wearing FAB, she can comply with FAB wearing schedule and it was very different from my Adam which was so reluctant. While Zarina is 100% pro-Ponseti method in treating clubfoot and even flew to Bangkok most of the times, i was quite flexible in any method as long as it can ease Adam.  And compared to her, i think i gave up easily and i lost due to many factors.

One of the factors is my location. Finding a good doctor practising Ponseti is very hard especially when you live in JB or outside KL. Adam’s treatment at Hospital Penawar was until he’s 4 months old before we decided to continue treatment at HUKM under Zarina’s suggestion. Hospital Penawar uses traditional method by “squeezing” (forcing) baby’s feet until you can’t stand to see your baby face turned blue by crying out loud and they are using fibre casting. I cried every time they casted Adam’s feet, that’s why i feel it’s to move on.. 

Since we continued the treatment at HUKM, we travelled to KL on weekly basis and i nearly got fired by my employer because i’m taking 1 day leave every week for almost 3 months. Too bad we don’t even have 1 Ponseti certified doctor (am i right, Zarina?).. and i can’t afford to do treatment abroad to Bangkok like Zarina or nearest to my place Singapore (the currency exchange is crazy, man..), and that was the other factor. I saw someone sharing her experience in facebook clubfoot Malaysia group that she went to Iowa for treatment. I must say she’s very lucky! 

Financial is another factor. Even though we had bad financial times for few months but of course as parents we can’t bear to see our child left untreated and we will try to sacrifice everything for them. That was why we opted for HUKM. The cost for treatment at HUKM is actually almost same with earlier treatment at Hospital Penawar considering toll fees and petrols. Luckily we have an aunt stayed in Kinrara so accommodation is not a problem.

Non-compliance of using FAB is the main culprit causing relapse. After tenotomy, we bought Markell shoes with Dennis Brown bar for Adam. On the first day Adam’s wearing FAB, he seemed OK with it (because he’s still infant that time), we saw him crawled, no fussing only mild cry but it stopped after some times. We were happy thinking maybe we can continue the FAB during night time. We put the FAB before he sleeps but it did not last long before he continuously bang his feet on the floor while lying and the shoes will slowly slipped from his feet. We will then have to tie the FAB again but it never last long as i told before. So we waited until he felt asleep but failed because he will bang, bang, bang, bang and bang the FAB, rolling here and there and crying out loud until finally we left with no choice but to remove the FAB. Once removed, he will automatically silence and continue sleeping. We tried every night but failed. Since then we never put FAB on him at night while he sleeps anymore. But we managed to get him on FAB day time under my care at home.

Unfortunately we don’t get support from others. You know you can’t expect someone else (except yourself and/or your husband) to adhere to your wish? The wish is only put on FAB all the day time except during bath time or diapers changing (which you have to remove for few minutes and put on back). Maybe people feels hard because it is time consuming to put on the FAB every time it slipped through the feet. Another thing the bar made from hard metal, so every time your child crawl, you can hear the metal banged on the floor and you have to keep yourself away so that the bar won’t hit you.. (tips: i wrapped the bar with some clothes so that it can minimize damages/injuries). You can’t also expect childcare centre to adhere to your wish because they take care of many kids and they can’t possibly monitor your kid only so that the bar won’t accidently hit any other kids! Unless you are lucky enough to get support from others, e.g.: maybe the childcare is kind enough to prepare one small space for your kid with FAB, etc.. but in my case, a big NO-NO. You can easily imagine i failed to make Adam wear FAB because he didn’t wear it during day time when he is not under my care and night time when he is under my care, we can’t get him to wear because of his reluctant. I can only manage to get him to wear FAB during our weekend outing for 2-3 hours which i’m really glad i did that! But of course, it does not help maintain his feet and slowly he had relapsed.

I did find any other way so that i can put Adam on FAB at night. After some research i found Dobbs bar which is compatible with Markell shoe. You can read my previous entry on Dobbs Bar here. With Dobbs bar, he can moves his legs a bit but we still failed to make him wear it at night.. too bad.. and there was a time we even switch to Dennis Brown bar again.

After the relapse, we did seek treatment from HUKM again but as FAB is the main tools to maintain the feet, we failed again.. it’s not that we were not strict enough to ensure FAB remains on Adam’s feet every time but we lost to Adam’s reluctant which will cry non-stop at night and failed by people surrounds us at day time. the treatment was put on hold for about a year (because i already gave up at that time)until Adam turned 2 and we went to HUKM again for casting and hoping to be able to get the feet corrected and comply with FAB since Adam is growing up. But as i wrote in my 2^nd paragraph, the cast only lasts on his feet less than 7 hours. L so we did not make any treatment till now.. 

 

Adam’s now is 4 years old. This year we will continue the treatment since he’ll be going to school (kindergarten) by next year. And he’s started to understand his feet condition which is unusual compared to everybody around him and show interest to get his feet corrected. He’s aware that some friends made fun of his feet and he likes when i said that we will get his feet corrected again so that his feet will be normal like his friends. i hope this will give him some motivation.. pls pray for us!

I am thinking whether to continue treatment at HUKM (but i feel very paiseh ler.. because i did not follow appointment schedule) or opt for Dr Kelvin, KKH Singapore this time? Dr Amnuay in Bangkok is not in my list due to financial & time factor.  Any suggestion?