Angelmum

Moderator
Re: Introduce yourself & yr child +Medical condition

Anglemum...we decide just because husband was the old boy, else other sch we went dont really supportive about having a downs in their sch...actually i was looking at APSN, but RC refer her to MINDS
Have you considered or intend to get into Chaoyang in Ang Mo Kio (opp Yio Chu Kang mrt) ... think part of APSN?

Last year, my ex-company organised a visit to that school and I was amazed by the teaching stuff there. It has a student care centre too! Too bad, they only accept those of higher IQ ... JX seems like a good match compared to mine.
 

Yukee

Member
Re: Introduce yourself & yr child +Medical condition

All the while i am very keen of sending her to Chaoyang...and i also thot JX can go, cos her IQ 50+, but RC don recommend, so we thot maybe go mainstream 1st then decide where she go next and whether to do another IQ assessment with pte psychologist. Currently she is ok with P1, so we will leave everything until next year.
 
Hi Anglemum,

Thank you so much for creating such thread for parents like us. Looking for a place to vent and share our thoughts!

I have a princess who suffer from brain tumor @ the age of 3 months old. Tis kind of brain tumor, she is the 3rd/4th patients in KKH. Reason: Unknown. Not Genetic prob.
Tis the worst nightmare i ever have. When she's fine from in my tummy till her birth before 3mths old. We are shock and cannot believe our ears when doc told us that. She went through operations 2x at age of 3months and 6months at KKH. Underwent such operations, consider major operations for such young kid. We were told she will be delayed in developments and was her tumor is located at right side, her left will be slower, limping.. etc. Might affect her IQ too. Now 4 yrs old... Still unable to walk and talk. She still at the baby lang stage.

I quit my job and take care of her. Currently, she attending EIPIC school.
What we strongly believe... we try our best for your kid. Seeing her progressing is our greatest achievement. And i know she'll get well one day.
 

Angelmum

Moderator
Hi Anglemum,

Thank you so much for creating such thread for parents like us. Looking for a place to vent and share our thoughts!

I have a princess who suffer from brain tumor @ the age of 3 months old. Tis kind of brain tumor, she is the 3rd/4th patients in Kandang Kerbau Hospital. Reason: Unknown. Not Genetic prob.

What we strongly believe... we try our best for your kid. Seeing her progressing is our greatest achievement. And i know she'll get well one day.
Nice to have you posting here.
Good to have a parent who’s optimistic and looking forward for the child to be better.

 

rini

New Member
this is a very good thread to support each other. i have a son born with a rare illness, diagnosed at 1week old. he needs special diet n medication to control his illness.. this illness will cause him to have brain damage or even death.

he was a normal looking baby. in fact he was chubby n cute looking. everytime i brought him out, he got many attention and compliments from strangers. he is a cheerful boy and play like other normal kids. nobody can tell tat he has illness. but his development was slow. at the age of 2.5 yr, his development is at 18months. although he's slow, but he still look normal.

tis march, he fell very ill and was sedated for 3 months plus. it's the first time he didnt wake up for more den a month. jus discharged abt a week ago, but he is no longer the same as before. his development has gone back to baby stage. he cant pull to sit on his own, need to help him up then he able to sit without support. as he has lie on bed for months, we do not know he cant stand because of brain damage or his muscle has become weak.

but from the day he stop the sedation till now, abt 1 month ago, there is improvement. when he jus woke up, he jus lie still and look straight. totally no eye contact, no respond no nothing. it breaks my heart. now he does look at u and follow the toy, but when u call him from somewher he cant see u, he wont respond. and he is doing some physio. there is also some improvement, when i pull his hands, he will try to sit up on his own, and his legs r bearing some weight now. really wish he can stand and walk again. he is turning 3 soon. had reg interventional class for him in jan, but he fell so sick, now i dont know whether to send him to school in future.
 

Angelmum

Moderator
this is a very good thread to support each other. i have a son born with a rare illness, diagnosed at 1week old. he needs special diet n medication to control his illness.. this illness will cause him to have brain damage or even death.

he was a normal looking baby. in fact he was chubby n cute looking. everytime i brought him out, he got many attention and compliments from strangers. he is a cheerful boy and play like other normal kids. nobody can tell tat he has illness. but his development was slow. at the age of 2.5 yr, his development is at 18months. although he's slow, but he still look normal.

he is turning 3 soon. had reg interventional class for him in jan, but he fell so sick, now i dont know whether to send him to school in future.
My girl, going 10 soon also looked normal and lovable. If she doesn't scream, hammer you for no good reason, make funny noises or walk unusual for a child at 10, nobody will know she has special needs.

Sometimes we hope to have a special school that will really give learning opportunities, help our children's development and located nearby preferably. Some schools are not doing as per its mission and located too far. It can be a chore to travel to and fro, especially when the result is not obvious... so not encouraging.

Your child considered still young so early intervention can still help if you're able to master the teachings of an experienced therapist, practice/drill him at home, reduce the contact with other kids or outside environment till he is better to mix around.

Which school will he be attending next year?
 

rini

New Member
Which school will he be attending next year?
fei yue at jurong east.. but now he has gone back to the baby stage, kinda feel upset and thinking these school will help? i wonder is there any moms with special needs child didnt let their child attend school?
 

Angelmum

Moderator
fei yue at jurong east.. but now he has gone back to the baby stage, kinda feel upset and thinking these school will help? i wonder is there any moms with special needs child didnt let their child attend school?
there are such parents around.
one that I know of is because she has 2 other kids to attend and can't trust maid to bring her special needs girl to school. Maid contract ending soon, not renewing due to all the unfair policies which made us at mercy of maids and agencies.

Others are live models of Glenn Doman. The parent stayed home carried out the teachings of Glenn Doman eg patterning and reading, totally rely on GD, not attending special school .... you can surf:
my baby can read Glenn Doman methods YouTube - YouTube
Domans method of patterning - YouTube
• View forum - Glenn Doman Method Discussion this is not the best forum, I can't find the web address.

How to Teach Your Child Math: Glenn Doman’s Dot Method | Child and Me
 
Last edited:

ping26

Member
he was a normal looking baby. in fact he was chubby n cute looking. everytime i brought him out, he got many attention and compliments from strangers. he is a cheerful boy and play like other normal kids. nobody can tell tat he has illness. but his development was slow. at the age of 2.5 yr, his development is at 18months. although he's slow, but he still look normal.
as he has lie on bed for months, we do not know he cant stand because of brain damage or his muscle has become weak.

but from the day he stop the sedation till now, abt 1 month ago, there is improvement. when he jus woke up, he jus lie still and look straight. totally no eye contact, no respond no nothing. it breaks my heart. now he does look at u and follow the toy, but when u call him from somewher he cant see u, he wont respond. and he is doing some physio. there is also some improvement, when i pull his hands, he will try to sit up on his own, and his legs r bearing some weight now. really wish he can stand and walk again. he is turning 3 soon. had reg interventional class for him in jan, but he fell so sick, now i dont know whether to send him to school in future.
I'm so sorry to hear about the hospitalisation. now that he's showing signs of improvement; he prob forgot how to move his limbs. It may not be brain damage. I think physio will be be very important for the next new months while he re-learns movement. if hearing is alright, then he may have just forgotten how to turn his head. maybe move a bit when you talk to him. give him some time to catch up :) You can do all that at home with guidance of hospital OT/PT. u can borrow this book Gross motor skills in children with down syndrome : a guide for parents and professionals / Patricia C. Winders. from the National Library

I think school is important but maybe go next year, cos he needs time to work on his 5 senses, strengthen up muscles & build up health. Muscles would have "shrunk" due to 3 mth of bed rest. If there's growth spurt or significant weight gain, it will affect stability & movement.

Was he able to talk a bit before he fell ill? if yes, then I think he will learn words again.
 
this is a very good thread to support each other. i have a son born with a rare illness, diagnosed at 1week old. he needs special diet n medication to control his illness.. this illness will cause him to have brain damage or even death.

he was a normal looking baby. in fact he was chubby n cute looking. everytime i brought him out, he got many attention and compliments from strangers. he is a cheerful boy and play like other normal kids. nobody can tell that he has illness. but his development was slow. at the age of 2.5 yr, his development is at 18months. although he's slow, but he still look normal.

tis march, he fell very ill and was sedated for 3 months plus. it's the first time he didnt wake up for more then a month. just discharged about a week ago, but he is no longer the same as before. his development has gone back to baby stage. he cant pull to sit on his own, need to help him up then he able to sit without support. as he has lie on bed for months, we do not know he cant stand because of brain damage or his muscle has become weak.

but from the day he stop the sedation till now, about 1 month ago, there is improvement. when he just woke up, he just lie still and look straight. totally no eye contact, no respond no nothing. it breaks my heart. now he does look at you and follow the toy, but when you call him from somewher he cant see you, he wont respond. and he is doing some physio. there is also some improvement, when i pull his hands, he will try to sit up on his own, and his legs r bearing some weight now. really wish he can stand and walk again. he is turning 3 soon. had reg interventional class for him in jan, but he fell so sick, now i dont know whether to send him to school in future.
you ask e sch's social worker whether they've home base therapy. Until yr boy's condition gets better than you may consider bringing him to sch.
 

rini

New Member
I'm so sorry to hear about the hospitalisation. now that he's showing signs of improvement; he prob forgot how to move his limbs. It may not be brain damage. I think physio will be be very important for the next new months while he re-learns movement. if hearing is alright, then he may have just forgotten how to turn his head. maybe move a bit when you talk to him. give him some time to catch up :) You can do all that at home with guidance of hospital OT/PT. u can borrow this book Gross motor skills in children with down syndrome : a guide for parents and professionals / Patricia C. Winders. from the National Library

I think school is important but maybe go next year, cos he needs time to work on his 5 senses, strengthen up muscles & build up health. Muscles would have "shrunk" due to 3 mth of bed rest. If there's growth spurt or significant weight gain, it will affect stability & movement.

Was he able to talk a bit before he fell ill? if yes, then I think he will learn words again.
from the day he stop the sedation till now about a month alr, he has improve his gross motor skill. he's able to turn his head and body left and right. able to grab things that r near him. this few days i oso keep making him stand and has shown improvement. able to stand with holding onto furniture for abt 30 sec but quite shaky.

doc say there is some damage in his brain cos his brain shrunk, and during the stay in icu, there were bleeding and blood clot in his brain and has affected his right side movement. right side of his body was paralysed for a month. lucky it was temp, he's able to move normally alr.

he cant talk even before he admitted, cos he was alr slow. now slower. and he gained 5kg during his stay. now too fat alr causes his spo2 desaturated when he sleep. now need cpap mask when he sleep.. i will see how whether letting him attend sch anot.. ya probably next yr.. thanks mummies for ur reply :)
 

pwrpuffmum

New Member
from the day he stop the sedation till now about a month already, he has improve his gross motor skill. he's able to turn his head and body left and right. able to grab things that r near him. this few days i also keep making him stand and has shown improvement. able to stand with holding onto furniture for about 30 sec but quite shaky.

doc say there is some damage in his brain cos his brain shrunk, and during the stay in icu, there were bleeding and blood clot in his brain and has affected his right side movement. right side of his body was paralysed for a month. lucky it was temp, he's able to move normally already.

he cant talk even before he admitted, cos he was already slow. now slower. and he gained 5kg during his stay. now too fat already causes his spo2 desaturated when he sleep. now need cpap mask when he sleep.. i will see how whether letting him attend sch anot.. ya probably next yr.. thanks mummies for your reply :)

Hi rini,

I have seen my friend's Xien's son grow these years with special needs, attending Pathlight and the tough time she has had. I guess mum is the one who bears the brunt of all the work. Be encouraged, Xien's son used to have no eye contact with me but now he greets me spontaneously - an achievement only some can understand! He is seeing Dr Lian Wee Bin who was previously from SGH but now based at Thomson Plaza.

I had to accompany him one of the visits and I must say I have learnt a lot about special needs children. I find the website at www.specialkidsclinic.com.sg helpful and informative too. Anyway Thomson Plaza has shopping and stuff while we wait for his therapy. Anyway, is the cpap mask difficult to manage during sleep?
 

rini

New Member
yup, he is doing fine with the mask except when putting it on, he will struggle abit then fall asleep. hmm, i will let him attend intervention class next yr.. btw moms, how do u cope with those strangers' staring or even worse, they kpo about ur child's condition when u dont eve know them?
 

Blessed angel

New Member
Hi

My gal is 4mths old and is diagnosis with DS at birth. Same as other mummies here, during pregnancy, every tests and scan was fine. When my gal was born, the PD suspected she was a DS baby and send her blood for genes test. 1 weeks later result was out and is confirmed. I was in a total shock coz no sign at all.
I told myself I have to accept the fact and move on since god send her to me. Just feel blessed that she has no other medical condition and she is healthy. Was being referred to Early intervention program, now waitin for the center to call me.

Was glad that I found this support group. Hope to connect with all the mummies here and also hope to know more abt DS conditions.
 

Angelmum

Moderator
Hi

My gal is 4mths old and is diagnosis with DS at birth. Same as other mummies here, during pregnancy, every tests and scan was fine. When my gal was born, the PD suspected she was a DS baby and send her blood for genes test. 1 weeks later result was out and is confirmed. I was in a total shock coz no sign at all.
I told myself I have to accept the fact and move on since god send her to me. Just feel blessed that she has no other medical condition and she is healthy. Was being referred to Early intervention program, now waitin for the center to call me.

Was glad that I found this support group. Hope to connect with all the mummies here and also hope to know more abt DS conditions.
This forum using an auto-correct for all short forms. It only 'allows' full words. Tend to make the real post looked weird.

I suppose DS means Downs?
While waiting for Early Intervention, with the help of modern technologies, surf the net for more info. Some kids can be very high functioning.

Down's syndrome or trisomy 21

DSA Singapore clickable
Down syndrome, Down's syndrome, or trisomy 21 is a chromosomal disorder caused by the presence of all or part of an extra 21st chromosome. It is named after John Langdon Down, the British doctor who described the syndrome in 1866.

Severity of impairment is very much dependent on the degree of intellectual disability and whether there are additional medical conditions present Children with Down syndrome have a higher risk for the following conditions:

congenital heart defects
-leukemia
-hearing loss
-eye disease
-cataracts
-refractive errors
-hip dislocation
--sleep apnea
-thyroid disease
However, many of the conditions mentioned can be improved with early intervention.


Maternal Serum Screening Test is a voluntary blood test conducted between 15 and 20 weeks of pregnancy to aid in the risk assessment of Down Syndrome, a congenital disease caused by a defect in the chromosomes.

The Maternal Serum Screening test is used to identify pregnancies in which the risk of Down Syndrome is significant enough to justify considering an amniocentesis.

Conducted between 15 to 20 weeks of pregnancy, the test measures the amount of AFP (alpha-fetoprotein) and hCG (human chorionic gonadotrophin). These substances are produced by the foetus and the placenta, and can be detected in the mother's blood.



What Is Mosaic Down Syndrome?

Mosaic Down syndrome is a developmental disability caused by an extra chromosome. The difference is the same as in Down syndrome, except that individuals with Mosaic Down syndrome do not have the extra chromosome on every cell. They have a "mosaic" of affected and uneffected cells. Children with Mosaic Down syndrome may have higher IQs than those with Down syndrome, but many of the health and development issues are the same.

Children with mosaic Down syndrome have two distinct cell groupings. In some cells there is a total of 46 chromosomes, which is the “typical” group. In other cells there is an extra copy of the chromosome #21, making 47 cells total for this group.
http://www.mummysg.com/forums/f97/common-medical-term-autism-global-dev-delay-seizures-cerebral-palsy-downs-syndrome-14827/
 
Give ourselves a tap on e shoulder. Each of us has different stage of difficulties. Recently we watched a show calls 'I can see you: A caregiver's story' currently showing on ch 8, wed @ 10.30pm. Used to air it on ch 5.
More or less give us a boost.
 
hello to all... found this forum while searching more about my baby girl's condition...

I'm a 28 yo mother with 2 kids. Elder son is coming to 20 months while we have a blessed daughter who is now coming to 3 months old. Sarah is her name and has been a strong fighter since she is born.
She was born at week 38 via scheduled Csect. Daddy wasn't able to witness her birth because he had HFMD from Jovan (our elder son) just days before the operation. She had stridor (noisy breathing) at birth and was only in contact with me for a brief moment before being whisked off to the ICU. ENT doctor came, did xray and gave "green light". But the happiness didn't last long. PD said that next day morning that Sarah still wasn't well as she wasn't tolerating milk feeds at all. And so she was transferred to KKH CICU that very evening.

It broke my heart to see her on tubes. But it wasn't of a choice. The doctors there said she had a left side nerve palsy on her face. She wasn't swallowing and couldn't manage her secretions well and was having desaturation (oxygen level dropping). She later had many episodes of such and eventually we had to make a decision whether to let her have the tracheotomy (a hole in the neck) to secure her air way and to prevent her from having sudden drop in oxygen. She turned blue a few times and the last time was when I saw her oxygen dipped to only 8%! We then agreed for the surgery to be done.

All tests came back normal except now that we just know that she has got mirco deletion in chromosome 16q23.1 in the intron of the WWOX gene (what does that mean? i'm still confused!) However genetics Dr didn't think this may lead to her having the following symptoms. Her other symptoms are now stiff muscles (high muscle tone) so we have to constantly do physiotherapy on her. She still can't swallow so we have to help her stimulate but it will take a long while before anything else can be done. She has a high arch palate so bottle feeding is hard and not possible. And now we know she failed her first hearing test. Neurologist said that her brain stem cells are not functioning well (despite a normal MRI results) and she got GERD too.

I didn't get to carry her till one month later after her birth.

Now she has grown a bit bigger (still not catching up with her peers!) But I'm still praying and hoping that she will out grow all these soon! Getting a lot more fiesty! Pulled out her feeding tube for the third time! Can someone say, "OMG!?" Haa... It was her fifth admission since birth and she just got discharged last night.

She requires constant suctioning in the mouth, nose and trachy site. She is also on continuous feeding (feeding via a pump through the tube.)

I will like to link up with the mommies and daddies here... =) thank you!
 

Angelmum

Moderator
hello to all... found this forum while searching more about my baby girl's condition...

I'm a 28 yo mother with 2 kids. Elder son is coming to 20 months while we have a blessed daughter who is now coming to 3 months old.
Hi!

While reading I can feel the heartaches of having a child going thru all these, in and out of hospital, tube.....

Sad to say, our journey won't be smooth but we all hope miracles will happen or some kind govt touch is given to make our lives less miserable.

While taking care of your girl, do take care of yourself.
 

desumon

Alpha Male
Hi all parents, I'm delighted to come across this thread!

I'm a father of a 2.5 year old boy diagnosed with GDD. When he was 3 months old, we found it unusual that he could not hold up his head and kept vomiting milk. Like the parents here, our world crashed when doctors said he has GDD and he may remain special for life. It was very heartbreaking whenever we see other parents playing with their toddlers. For his first year, all he could do was to lie down and play with rattle toys.

We went to KKH for all kinds of diagnosis, and other than GDD they could not find other abnormalities. It was terrible feeling fearing the unknown plus the doctors we met at KKH lacked judgement and afraid of saying anything wrong, which is not helpful at all. Long story short, after 2 years of acupuncture treatment, he is able to sit up, better hand motor skills and his eyes are more attentive. We have recently went back to KKH to diagnose his condition and signed up for EIPIC.

Some time ago a friend introduced Glenn Doman's books to us and for the first time we felt very positive about what it could do for my boy. I visited their office at Midview City and the person-in-charge Lawrence advised us to find a carpenter to build a wooden inclined floor (he discourage calling it a slide). We could not find any carpenter willing to make it for us. If anyone has a lobang, appreciate if you could PM us the contact.
 
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