Being Special - Parenting Child with Medical Conditions

[Angelmum]

This thread is a summary of Introduction + child's Medical condition + Chat - for new members who are parenting child with special needs to find us/kaki easily.

"Special needs" are commonly defined by what a child can't do -- by milestones unmet, foods banned, activities avoided, experiences denied. These minuses hit families hard, and may make "special needs" seem like a tragic designation. Some parents will always mourn their child's lost potential, and many conditions become more troubling with time. Other families may find that their child's challenges make triumphs sweeter, and that weaknesses are often accompanied by amazing strengths.

Those of us who have special needs children know just how hard it is to find the resources and assistance that we need in order to be able to do our best for our kids. MummySG has specially created this forum for parents like us to chat, share and vent!

No one knows our reality until they have walked in our shoes, knowing that we understand your frustration. Remember, you are NOT ALONE!!

[Angelmum]

My Angel

My girl was diagnosed with Angelman Syndrome just before she turns 1yo. I found her different fm my elder son thus during regular visits to Kandang Kerbau Hospital, I asked pediatrician why she cant flip or sit up at 6mths, pediatrician said some kids are slow. No matter how many times I expressed my concern, none of the PDs were willing to pay attention to me (again, same problem during my pregnancy). Docs do not trust a mother’s instinct (again) so finally, they ‘woke up’ and agreed that something is not right when dear daughter was 11mth. Kandang Kerbau Hospital ran tests and CT scan, finally told us she has a deletion of chromosome 15.

Angelman Syndrome - mainly speech impairment, seizures and Global Developmental Delay. A deletion of chromosome 15 from mum is known as AS while Prader Willi Syndrome is due to dad.

When pregnant, was a C class patient. C class patients are not allowed to stick to one gynae so every visit, you see a different person.

Was very upset and dont understand y I’m so ‘lucky to hit jackpot’ - a special child! When I conceived dear daughter, I had uneasy feeling. before her, I had a misabortion, foetus no heartbeat. I requested for detailed tests and thot I had been tested WHO KNOWS WHEN GAL about to turn one (after Kandang Kerbau Hospital ran tests and found her abnormal) then Kandang Kerbau Hospital told me they didnt run any genetic tests cos I had no family history. Thot I was in safe hands, who knows the MO were so incompetent!!

After dear daughter, had an unplanned pregnancy. Foetus abnormal – Acrania (Mickey Mouse Head) so aborted foetus. I no saint nor unbeatable person so I had to be a killer.

dear daughter is going 7yo and I'm a homemaker with another P6 boy.

[Yukee]

Hi Anglemum...so we shifted...recently i switch back to my lazy mode again...i just read the posts but didn't post anything...

Hi all, my gal (4yos) was diagnosed with Down Syndrome when she was born...during my pregnancy, i did the blood test the possibility of getting a Downs was very low...i requested for a amio (cos i was 34 going to 35 at that time), but the gynae (a private one) said no need, cos i had no family history of any illnesses...so we got her...but thanks god, she is healthy and can consider her as the high functioning type (or moderate)...and over independent, this make us difficult to teach and correct her, she just want to do it her way on her own...her current problem is speech...she start calling me mummy only few weeks ago...almost cried, waited for so loooong...I am a stay at home mum, i had quit my job so that i can take care of her, cos feel that i am the best person for her, currently i put her in the PCF Childcare on alternate day, cos the other days she needs to go to the special school...quite satisfy with her progress and the arrangement now...hope everything will be smooth and she will improve as times go by...

[epicurean]

Hi, my baby boy suffered from bleeding and swelling in his brain during birth. After his team of docs saved his life and stabilised his condition, scans showed extensive brain damage with ongoing sub-clinical seizures. He's now 1 year old and those seizures are kept under control with Epilim. He has global developmental delay, hyper tonia (excessive stiff muscle tone) and GERD.

He's helluva stubborn boy to make it out of PICU and the hospital and I'm so proud of him Love him to bits

[epicurean]

Hi Angelmum,

Thanks for sharing so frankly about your experiences as a mom with a special needs child. I think you're very strong and capable to be caring for your dear daughter by yourself along with your son. I completely empathise about the crazy jumble of emotions that we such moms grapple with everyday, esp when we see our child struggling with his/her condition.

I realise I forgot to explain that my baby has been classified as cerebral palsy (grade 5 most severe - low functioning, high dependability), quad-spastic (all 4 limbs are affected). This is coz his MRI brain scans show a lot of brain cells in his cortex (frontal lobe) died and been absorbed into existing cells ... basically, now there are large holes in his frontal lobe (missing brain matter) coz brain cells do not regenerate. Coz damage is in his cortex which governs executive functions (walking, speech, learning, eyesight etc), everything will be affected. His prognosis by doc is extremely grim ... I cried for days when I read it. Doc also warned us that he would probably not outlive us coz 2 things are likely to kill him - 1. his epilepsy is likely to worsen as he gets older (one probable trigger is hormones as he reaches puberty) 2. he's very prone to infection (esp. lung infection) coz of his condition plus he constantly vom milk ... high possibility of inhaling milk or phlegm into his lungs. Hubby and I used to hug each other and cry after each medical review coz it seemed like bad news after bad news, non-stop pain & suffering for our boy.

Now with medication - he's on epilim for seizures, zantac for GERD, baclofen (muscle relaxant) & diazepam (aka valium, tranquiliser) for his hyper tone - and therapy, he's slowly improving and happier and not in pain. Have you read the article "Welcome to Holland" by Emily Kingsley? I read and reread it to remind myself to be strong & positive for him coz I believe I'm the best person to help him improve. When I first read the article, it was like someone finally articulated all the feelings that are bubbling in me everday and made sense out of them.

[elantranine]

Yeah...I got a mild ASD boy diagnosed when he was 3yrs old.
To date he is already 5 yrs old. He has been doing well and most of his ASD traits have disappear....thnx to early intervention center he is attending to and of cos support from his teachers there in at PCF center too. He attends both school daily. Now I am planning ahead for his future as in which primary school he should attend in another 1 1/2yrs ? So i'm awaiting parents who do have children with ASD and attending mainstream school , to share their experiences.

[yummymummy]

Hi Epicurean,

thanks for sharing the poem about Holland, I loved it so much I posted it on my blog.

Would like to share my journey too and introduce everyone to Vera, the baby with Trisomy 18...at Love and a Leap of Faith

Vera has GDD and lots and lots of other medical issues.

Let's keep each other going!

And hi angelmum, I finally found my way here!

[karinc]

Hi

I'm new to this forum. Was surprised to find a singapore forum for parents with special needs child. I have a 5 yo girl with down's syndrome. I also have another 2 boys, aged 3 and 1 month.

It really tough to be a parent esp in S'pore where support for special needs are very limited. Had so much problem integrating her to mainstream childcare, and therapy sessions are so expensive. Until now, esp after giving birth to my 3rd child, I will still thinking about the question "Why me??" I just hope that the when my girl is older, Singapore will be a better society for children/adults with special needs.

[rae]

hi everyone... for those from the previous thread, this is rae, with a chromosome disorder ger, turning 5 years old in a few months. my story will follow very soon. thanx angelmum.

by the way, i may be appearing in want bao (evening chinese papers) soon. and i hope they have space to publish this link, so that more parents can join us.

[menkesdisorder]

Hi all, I am new here. Will be posting more about what my son is suffering from. Its called Menkes Syndrome.

[lphbrenda77]

Hi I am new to this forum. Was looking for support group for parents with special child.
My daughter was born with SED = spondyloephysealdysphagia which is a kind of dwarfism. It is congenital as my hubby has this condition as well. (he is only 1.4m tall!)

People with this condition r usually short 90cm to 1.45m and they might have hearing and vision problem. They might not be able to walk and will have problems with their lungs as their body is too short. My daughter stayed in the High Dependency for 8 days since birth for breathing problem. It was quite heartaching to see her with the feeding tube as well as the oxygen tube. It took me a few days to train her to drink from the bottle without turning blue. Even when she was discharged, she turns blue whenever she drinks milk as she needs to put in twice the efort of a normal baby. Which is why I will not allow her to cry for more than 20mins as her face will turn blue when she has lack of oxygen.
Although not many plp can notice that her limbs are very short, I guess when she grows older plp will start noticing and give weird stares. I just hope that plp will treat her as a normal child and see beyond the fact that she is just little for her age.

[xiaochuan]

Hi angelmum and epicurean,

you two are really strong women! I need advice and all the moral support!
My 2 week old baby was born with no heartbeat. After resusitation and days in NICU, we were told that she is diagnosed with cerebral palsy due to damage in the brain. According to the MRI scan, at best, she would be wheel chair bound.
The facts are traumatic for me and family. As of now, we are still trying to cope with the news... i am actively trying to get a domestic helper in to ease the load.

Hi epicurean

How did you cope? If your baby on tube feeding? Does he need suctioning since they are not able to cope with normal swallowing?

[sushigal]

Hi thanks to this forum and to this special section for all parents who have special needs child. No other one person can really understand what we feels and all the difficulties we faced. And boy yes we are not alone... we need each other support and encouragement. Very much of that to keep ourselves moving and carry on life with the child.

I have a 28 months old boy who is diagnose with GDD. At his age now, he still not flipping or sitting on his own. His neck is still very soft and not able to hold up firmly for long. I am still very upset over his condition especially when I see other kids his age able to do a lot of things on their own, but he's not able to.

My boy is currently attending EIPIC twice a week. There will be PT, OT and speech for him once a week. This program started in May this year for him, though it's not very long, most of the teachers/therapists commented that there is improvements in him. As in he can hold up his head longer. But he is still so far delayed in his development.

Am trying and going for whatever treatments that people recommend to us. Thus every week are fully scheduled. I am a full time working mum, hubby also working. My mum took care of my boy now, but I will take unpaid leave whenever I need to bring my boy to EIPIC. I am really really very tired, both physically and mentally. Thinking of quitting my job to stay at home with my boy so I can do more therapies for him which my mum won't have time to do for him. On the other hand, all the financial burden will b on my hubby if I stop working.

[chloe.lim]

Hi to everybody!
It is definitely heart warming to find a support forum based in Singapore tucked away in cyberspace.
I couldn't sleep last night after chancing upon this forum and kept reading til fall asleep.

Anyway, i'm Chloe's father, Chloe is 4 this year and she's diagnosed with microcephaly since birth. She has recurrent seizures since 3 months of age up til now. When it first happened, we were in a daze with the hospital trips and medications etc. Life was in turmoil and we as parents were in permanent depression. Chloe has severe GDD but she is nevertheless our angel sent to us and we love her heaps. We bring her to Awwa for early intervention and suddenly the obscurity and loneliness went away.

We bring her out as much as possible but try not to let her get excited for she may not snap out of the excitement of being 'out & about'. I think it's the nature of our society to cast curious eyes on our children as this is how our society is made out. (perfection, materialism and judgement on face value)
We try our best to be positive and we live on the mantra of "Our Special Children are the perfect ones, without sin and full of innocence, wherelse everybody else is imperfect & ugly"

So, there is no point to dwell on whats not and what if, but dwell on what we can do to improve our children's quality of life. After all, life is but a few decades for normal lifespan human beings.

This adventure with Chloe has truly made us better human beings spiritually and we hope to share and exchange more information on the forum to gather more knowledge!

See you all around!

[KJ mummy]

[FONT='Verdana','sans-serif']Hi everyone,[/font]

[FONT='Verdana','sans-serif']I chanced upon this topic on special need children since last week and I have been silently reading all the discussions, experiences and sharings from all the mummies here and of coz not forgetting one daddy! It took me quite a while to decide to share my story here because it is like re-opening my wounds and all the pains and sadness start to overwhelm me again. [/font]

[FONT='Verdana','sans-serif']I have a special need child- a 9 months old baby boy. His primary diagnosis is Bilateral Cystic Encephalomalacia and secondary is GERD. He also has seizure attacks everyday – Infantile Spasms. [/font]

[FONT='Verdana','sans-serif']I gave birth to my boy in March this year via emergency c-section in Mt Alvernia hospital. Like some of the mummies here, I have a very smooth pregnancy with no complications at all. Everything went well throughout the 9 months until my womb ruptured during delivery when I was pushing my boy out. Baby somehow did not come down the birth canal despite me pushing very hard and several times. After about 20 mins and there was still no progress, my gynae quickly pushed me for e C-section. My gynae was not aware that my womb was ruptured until he operated on me and realised it. Although my gynae is a very experienced doctor with more than 30+ years of experiences, this is the first time he encountered such thing happened to his patient. I have no history of any scarring to my womb before as my first child was delivered naturally and there were no signs of my womb rupture from the monitoring. As a result of the rupture, my baby suffered a lack of oxygen to his brain. Me and baby were lucky to have survive from the rupture because I subsequently found out that I could have just lost my life at the operating table and baby might have also not be able to survive! Really thank God for saving both of our lives!![/font]

[FONT='Verdana','sans-serif']After baby was delivered out, he was not breathing well and not crying. Docs resusitated him and his breathing came back subsequently. He was in the NICU and stayed there for 10 days before he was discharged. He is able to suck from his milk bottle.[/font]

[FONT='Verdana','sans-serif']During my son’s first month at home, he was very normal. Things changed after we brought him for his first vaccination at about 7 weeks old. He started to cry non stop, day and night. He would arch his body everytime he was drinking milk and would also merlion out the milk almost after each feed. We called our pediatrician to check. pediatrician initially told us that baby having reflux and told us to change formula. After changing, my boy still cried a lot and fussed all the time. He would jump up at the slightest sound and he must be carried all the time. We could not put him sleep on his cot for he would wake up and started to cry. Basically we had to carry him the whole day and we could not do anything else.[/font]

[FONT='Verdana','sans-serif']After about 2 weeks of crying and no improvement, we decided to bring him to Kandang Kerbau Hospital for a thorough check up. He was about 2 months old then. Doctors did a series of tests (blood, spinal fluid, hormones) including testing of the severity of his reflux. Results came out and showed that everything was normal except that he GERD. However, docs said that his reflux was not too serious to cause all the crying. Docs then suspected could be neuro problem because of his birth history. EEG and MRI were immediately scheduled. [/font]

[FONT='Verdana','sans-serif']EEG results showed some abnormalities (some small spikes) and MRI scan confirmed that my baby’s brain is not normal. There are many fluids (cystic patches) in his brain and his brain size is smaller than the normal sizes. Me and my hubby were devastated when doc broke the news to us. We cried and cried the whole day and night. We did not expect his condition to be as such because we were assured by the neuro pediatrician when he was in the NICU then that the results of the CT scan and blood tests were normal. We were told not to worry.[/font]

[FONT='Verdana','sans-serif']After his diagnosis, docs started him on physiotherapy becos docs said he might going to have CP although up till now docs never told us how serious would his CP be. Docs could not tell us what my boy could or could not do in the future. He is now on PT, OT and ST. He started having seizure attacks when he was about 6 months old. He is currently on Nitrazepem and Vigabatrin for his seziures. Docs want to start my boy on steriods because his seizures are not completely control although it has reduced in terms of frequency and intensity. [/font]

[FONT='Verdana','sans-serif']Any mummies and daddies can share your experience if your child is also having infantile spasms? What type of medication is your child taking for the spasms?[/font]

[Yvonne Lim]

Dear All,

I am a mum of 2, my 2nd daughter was born 16 days ago on 2 Jan... Like any parents we are so excited waiting for the arrival of our little princess, our elder gal is also excited waiting for the arrival of her little mei mei...

Finally I deliver my gal on 2 Jan, but our joy was short-lived... On the 2nd day the pediatrician came to us to say that he need to do a chromosones test for our little gal cos she have sutle signs of chromosones this-order.. at that moment, I didnt expect that mean Down Syndrome.. I have done the OSCAR test and my ratio is 1 : 2100 and my detail scan shown all measurement to be normal too.. Even my gynea was surprise that the pediatrician ask us to do a chromosones test and she say my gal looks perfectly fine.. but to our horror we found out that my little gal have dear son a week later, she is diagonise with Trisomy 21..

I went hysterical and kept crying, I cant even carry her or look at her during the first week, last week (th 2nd week) we seek help with the DSA and spoke to the kind people there, I feel much better therafter.. However my mood and emotions still went up and down like roller coaster..

I have so many fears, uncertaintly, worries about the future..

Can some parents with dear son child give me some advise and help...

[E-mum]

Hi, I am grateful to see this forum for parents with special needs kids.

Anyone has a child with Dyspraxia?

My son is 5, diagnosed with GDD and is currently in the EIPIC programme in Rainbow Margaret Drive. He didn't walk till he was 17 months and for initially, speech came really slow. He could only go "babababa..." and finally at 2.5 years, he could call me mama.
His body is low tone and lots of exercises are hard to achieve for him.

When we had our OT (it was limited sessions) at CDU, the therapist said possibly Dyspraxia, so little is known of this that he is not labelled as so. I read up and it seems that he fits.

Other than a hearing test, and assessment for enrolment for Rainbow School. I didn't send him to any further tests.

Should I have done so? If yes, what tests should I send him for? A brain scan?
Is it important to know the cause? Or should I just focus on helping him in whatever ways I can from now on.

Also, anyone deliberately delay their child from entering mainstream primary school for one year? What to make such a decision? I am hesitating to be do this. Wish to discuss with parents with similar situation.

Thanks!

[Tyon]

My hubby found this forum and asked me to have a look. I did and I was hocked. Like many of the parents here, I am a mother of a unique child.

My 3rd child Taeyon was born premature at 35 weeks. He was born in Dubai UAE as our family has been living here for the past 4.5 years.

Taeyon spend his first month in the ICU as he weighs only 1.48kg at birth. Not only does he has upper limbs abnormalities (max. 2 fingers on each arm and the left arm cannot be straighten), he also has bilateral cleft palate and gaps in his heart. He was eventually diagnosed with Cornelia Lange Syndrome (CdLS) which is rare affecting approx. 1 in 10,000 - 50,000 live births. My heart breaks when I see him for the first time especially when he first open his swollen eyes and look at me. Our lives were never the same then.

I remember one of the worst thing was to tell our families back home about him. Seeing their grief on the webcam was really heart wrenching.

Now Taeyon is 4 months, coming to 5 months soon. He has to be tube fed as he cannot swallow. There were many questions in our minds. Why didn’t the amnio test indicate this? Why didn’t the gynae detect his deformed hands during the numerous detailed scans? So many ‘Why?’ but there were no good answers. There were few useful resources we found on the internet and we learned that CdLS happens due to a mutation of genes and it could happen to anyone.

Recently he was hospitalized due to pneumonia. He stayed 4 long weeks. Now he’s home and slowly recovering. He is still weak from the infection and requires constant oxygen supply to maintain good saturation. His blood test still shows high level of CO2. He requires frequent suctioning which we both hate so much. But there was no other choice.

Life has to go on, we have to move on forward; I still have 2 other kids to take care of. Our initial grief has become more like an acceptance and we are more or less back on track. I guess what matters most is that Taeyon is happy. I really hope he is.

[Angelmum]

Originally Posted by joenbby Hi all Anyone with kids diagnosed with 22q11.2deletion or Velo-Cardio-Facial/ Di-George syndrome? My dear daughter has been recently diagnosed with this chromosone deletion and she has heart defects that require surgery few days after birth. Would appreciate if anyone can share their experience with me. Thanks.

had problem copying Joenbby's post. Thus, using quote.
19/4/2010