Tuesday, June 28, 2016

Appointment 3rd June - follow up in Bangkok

Salam Ramadhan and raya is soon..

We went to Bangkok on 2nd June for Dania's follow up appointment.
We have been struggling to get Dania stretch to ensure she will have the minimum dorsiflexion. 


She is already 140cm tall. When u first saw her in this blog she just turn 1 and bow she is 9 years old.


She can walk and she squat like any other kids but her running style is so funny.


There is no improvement of her dorsiflexion.
In fact her dorsiflexion is zero. Nevertheles her dorsiflexion for non clubfoot feet is only 10' degree.

Even her flatfoot is worst and Dr Amnuay taught her on how to exercise to minimise her flat foot.

She need to continue stretching and also running to keep her muscle strong and improve her dorsiflexion.

Dr Amnuay also told us that there is official guidelines to improve the condition of the dorsiflexion but Dania need to do stretching consistently.

We met 2 Malaysian families in Bumrungrad. They will be more families will come to Bangkok for help if there is no improvement in Malaysia's treatment method.

I still see splints, and I still hear many babies were in casting for many many times. I also still hear failure of the treament e.g. Relapse etc.


Dania is growing up rapidly but Malaysia treatment still slow in improvement progress. The babies need help. Why can't Malaysia Orthopedics throw all the splints and practise the correct Ponsti Methods once and for all??

Things to shout about on 17 December.








Thursday, March 17, 2016

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 2nd 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! 

Tuesday, January 26, 2016

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 !!!




Sunday, June 21, 2015

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.


Thursday, June 4, 2015

MALAYSIA 1ST WORLD CLUBFOOT EVENT AT KUALA LUMPU



3rd 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 3rd 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 1st 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



Wednesday, June 3, 2015

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!!


Tuesday, October 30, 2012

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.


 
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