Friday, March 30, 2012

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 2nd 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? 

6 comments:

bee hong Tan said...

I would like to bring my daughter to HUKM, can you pls recommend the doctor? Thank you.

bee hong Tan said...

I would like to bring my daughter to HUKM, can you pls recommend the doctor? Thank you.

Ina said...

Errr u can try prof sharaf or prof halim but no guarantee ya..

FleetingMoments said...

Hi my son is 6 and he has club foot which looks similar to ur sons. Any good doctors you know in kl?

Lynda Edris said...

Hi...ade sesape nk jual used mitchell shoes and bar...

Ong Mee Choo said...

Hi Ina,

Mee Choo here. Do you know who is the person who published this post?
Yesterday I was with Dr Amnuay and he asks this parent to contact him directly, he is willing to give FOC treatment to this kid. The parent only needs to buy their own flight ticket.

Thank you

 
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