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New Member
re: Introduction + child's Medical condition

Hello - am new to this forum - I have two special needs kids - one older girl 8yrs with Asperger's Syndrome and the younger boy 6yrs with Autism Spectrum - it's a full time job just helping these two in their daily lives and ensuring they are helped in the best way possible .... anyone can relate to this? :)


re: Introduction + child's Medical condition

Hi Angelmum
I am new to this forum. I am still reading through some of the treads here. My family is trying to cope both physically and mentally. As usual, there are bad news every day.

Let me share my case and I have some questions to ask mummies and daddies here.

My 2nd baby girl Grace was diagnosed with a rare metabolic disorder called Pyruvate dehydrogenase complex deficiency (PDCD). My elder girl is 4 years old and she is normal.
Grace has GDD. At 18months now, she is still unable to sit upright independently.
She is currently on PT,OT, Speech Therapy (she is aspirating silently through two rounds of VF screen over past 7 months).

Grace is the only case with PDCD at Kandang Kerbau Hospital. Anyone knows of any recorded cases at NUH?
Neurologists are recommending Ketogenic Diet. Anyone has experience with that? Is it hard to administer daily diets, medicine etc?

According to internet research, there are 500 cases in the world and the average mortality rate is 3 years. However we are not buying that statistics, as every child is different. And Grace has God's grace. she is strong.


New Member
re: Introduction + child's Medical condition

Hi there everyone,
I am new to this forum and am so glad to have found it. I have an elder girl and twins born in Nov'09, my boy was born with a severe form of congenital neuropathy, whereby his nerves are not functioning at all and that has caused him to be unable to breathe on his own since birth nor swallow nor move any part of his body.

He is currently on a tracheostomy, ventilated on the LTV machine. On NG-tube feeding every 2hourly to curb is reflux, on physio to prevent his muscles from stiffening. He has had MRI scans done, muscle biopsy done (which show some form of congenital fibre-type disproportion), etc etc...

In short, there has been nor formal diagnosis and his prognosis is very very poor. Doctors have previously gave us a choice of removing his life support. which was something we cannot do and now, he is home with us, but requires close monitoring 24x7. We love him alot, but pains us every single min, second to see him suffer ... he requires 6hrly suctioning on good days, I've engaged 2 helpers to care for him while I had to go back to work because of $$$$.

Hope to get to know more parents here and strive on!!


New Member
re: Introduction + child's Medical condition

Dear Special Moms

Kudos to all of you! Know that you are all very special people & your special child/children is/are blessed to have parents like yourselves. Your trials & challenges are an inspirational to other parents. So heads up!

Am new to this forum. Mom to 3 boys and a girl. My 2nd boy has ASD, with speech delay. He's 14 this year. Was a working mom until 6 year ago when we left for an overseas posting with hubby. Am now back, is a SAHM and coping with kids' integration back in local school system, my ASD boy & a 2+ year old girl who is a bundle of energy.

Am looking to reading, hearing and sharing from other special moms to draw inspiration. Cause sometimes, when you are all caught up with daily routines and challenges, they tend to get pulled down very badly.



New Member
re: Introduction + child's Medical condition

Hi all, I'm a new member here and i have a special needs 7months old boy (correct 5.5months now), Zav.

We noticed something is not right when he was about 3.5months but our concerns had always been dismissed and given the 'wait and see advice'. Just found out how 'special' he was 3 weeks ago. My husband and i are still grieving. Guess we have went thru the stage of denial, anger and is alternating between bargaining and depression now. Hope to lift ourselves out of these stages and move on to acceptance. Glad my hubby introduced me to this site where i could vent and hopefully find resources for us to move on to acceptance.

Zav stayed in ICU/SCN for a month before he comes back. Won't go into detail here else it will take the whole day for me to this msg.

Zav has silent GERD. Has been and currently on losec and domperidone since he's 2months plus. GERD has mostly stabilised in that he does not cry bloody murder for 15-18hrs/day. It's reduced to occasional fussing throughout the day. Other suspected diagnosis are CVI, ASD and mod-severe athethiod CP. These are our diagnosis as the paeds at KK are not wiling to put down a diagnosis on him. I dunno why but he severely need attention and is not getting any serious attention. Went to a private neurologist 3 wks ago who told us mod-severe cp and that he might never walk, write and do the usual things. No treatment plan, nothing offered but just told us to accept the reality. We are lost, confused and do not know what to expect. Met a development Paed from NUH CDU who adviced me to get a quick referral to her from polyclinic. Did that and the appt is next week.

Nobody can tell us what future holds for him or us. I guess no one can. Like to share his condition and hope to hear if anyone has similar experience to share.

Zav development so far:
Feeds well. Started solids last month. But we have to control his intake as he seems insatiable and he's almost 97% in weight.

Small head. About 5 percentile.

Able to hold his head up ard 5months.

Hates tummy time but can stay on tummy time with head up and support his upper body with his forearms for up to 10min each time now. (Was only able to manage about 1-2mins 2months ago). Does not push up on extended arms yet.

Does not roll, even from side to side.

Hates the sitting position as his hips and legs are very stiff. Will scream if you force him in that position. Tried to tripod him in a sitting position last week and he managed to sit unsupported for a minute if he does not move.

Stiff legs and hands. Fists are often clenched but do release when we touch his fingers. Stiff as a board during bath time but do not dislike bath.

Track objects occassionally if we move them in front of him. He starts tracking when he was almost 6months.

Does not look at faces. In fact he avoid eye contact. Started to notice ppl moving around him recently. His eyes are always roving but not sure if he interprets what he's seeing.

Does not recognise caregivers, not even parents. Does not even recognise milk bot.

Does not turn to sound though he pass hearing test.

Does not show excitement to toys or kids or anything.

Just like to know if anyone has almost similar experience? Would really like to know if he will be able to recognise us, regain some motor, cognitive and social skills in future.

Thank you.


New Member
Re: Introduction + child's Medical condition

dear all,
I am new. I have a 4.5 yo girl attending AWWA and a playgroup. She has a chromosome microdeletion. She can walk and eat (swallow very slowly, depending on mood) but cannot speak and write yet. She is due to take a IQ test in 2013. Can parents share whether there are anything parents can do to help her prepare for the IQ test?

I was told that her schooling options would be narrowed as she is not verbal and not writing. hopefully she can improve her fine motor skills next yr.

thank you!


New Member
Re: Introduction + child's Medical condition

I started to source and read on Special Need kids (in Singapore) since last month when my Boy neurology told us his DNA blood test result. He also suffered from chromosome deletion. Our world crash for the next few weeks. He is only 22months now and we had to look at as "any kid" we dreamed of. Now waiting for CEL to arrange for his special need. Found this forum very supporting.
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