Introduction + child's Medical condition

[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]

 

[epicurean]

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

Hi KJ mummy,

Welcome to the forum. Your boy is a cutie Btw, looking at his pic, his smaller head size looks like my boy's head condition as well ... the top part is narrower than the rest.

Seb has sub-clinical seizures which are detected from his EEGs. He's on epilim to keep them under control, along with diazepam for stablising effect for his seizures and hypertonia. Your description of your boy's constant fussing, crying, jumpiness and needing to be carried all the time matches exactly how Seb was like during his 1st 6 months. The only time he wasn't fussing etc was when he was sleeping and he was such a light sleeper. He was on phenobarbitol then ... it made him irritable and cranky. He was such a cross baby all the time! Phenobarb couldn't keep all the seizures under control so when he was 3 months, his doc put him on epilim instead, which was much much better for him.

 

[Angelmum]

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.

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?

Tks for posting, sharing n being part of this forum.



DD has an ex-classmate who had severe Infantile Spasm. She was born normal, everything was alright till child was 3mths old then seizure striked. Dr said she won't be able to walk (most likely bedridden), had to undergo lots of therapies. Mummy stayed home to ferry her to school as well as engaged her with extra therapies (ABR etc) and attended lots of courses (eg Glenn Doman) that would benefit her child. The child's days were packed with training. Today, this child could walk, seizures under control, could understand simple instructions and has just been posted to MINDS .... no longer a Rainbow Centre kid with multiple disabilities. MINDS are for children who are more independent, compared to RC.



Early interventions of the right kind are crucial to ensuring a good outcome for your child. It is gd that yr child started early. The wound may be forced open again n again so I don't see any point in trying to sugar coat our journey ... It's really not easy to come to terms n accept such a challenge.

I didnt get the medication that child had but Eplim Sodium Valporate syrup was definitely one of her medicine. Think Dr will let u try different types of medicine so u need to monitor how well it worked and give feedback/discuss for alternatives. Remembered she was given tablet to crush n feed but it really wasn't easy to feed a child medicine.

 

[chloe.lim]

[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]

Hi KJ Mummy!

Welcome to this wonderful forum!
This forum is a godsend for special parents like us to support each other and share experiences..

My angel is 4 this year already and she started having her seizures from 3 months old..i remember she had like at least 10 seizures big or small at least a day during the most intense period of our lives, and yes i remember her screaming through the night couldn't sleep without being interrupted by spikings. During those time we even brought her to accupuncture once a week for a full year (But we wonder if it worked).

Her seizures have since been controlled with medication and she is using epilim, clobazam and phenobarbitone. She is still a small sized girl (about 7 kg), not walking, standing but can now sit with support and she is very vocal and replying us in her own language. Small milestones but very big to us, and this is particularly also due to Early Intervention she is attending with my dear wife.

It's going to be tough but if we adjust our expectations (shouldn't all parents?) and be fully committed to our children, everything is going to be fine.

I would have to say my girl has definitely brought our family much closer, strengthened my relationship with dear wife and made all of us much better people in terms of wisdom, tolerance, patience etc.

So take heart, our children are just different and need specialised care, on our part, we focus on the positives.
(Mainly focus on the fact that we SHOULD BE proud of ourselves and our child because we're parents of the highest order and our child has come a long way, they are fighters as well) - I think we should all feel and focus this way!!

God Bless!

 

[KJ mummy]

Dear all,

Thank you for all the sharings and encouragements. It seems most of the children who have seizures are on Epilim. I will check with my neuro doc this afternoon during my baby's review.

Epicurean : yes, my baby's head especially his forehead is smaller in size due to the injuries suffered at birth. Sounds like both our babies' conditions are quite alike. When did Seb stop all the cries? Did your doc give him any med for his cries then? For our case, the docs had no clue why my baby cried so much then even after they have started him with the med for his GERD. They just told us that his cries would eventually stop at the time of discharging from hospital. So, he was still crying alot after he was discharged from hospital and after all the tests and med until one day his cries suddenly reduced and eventually stopped.

My baby is much much calmer nowadays. No more cries and vomitting. He smiles from time to time although not much eye contacts. He started to coos at about 6-7 months old. We have started him on porridge about 1 month ago. However, he is still not able to roll over, sit or crawl yet.

For his seziures, I have noticed that the intensity and frequency have reduced since we started him on the Hemeopathy Treatment. Has anyone heard or tried it? Hemeopathy Treatment is recommended by our freelance therapist who we engage once a week to do therapy at home for my baby. Eversince my baby started on this, he has become more alert as compared to before. His eyes do not always look up like in the past and his responses have improved too.

BTW, just to share, we have also been seeing Dr Keith Goh since July regarding the stem cell infusion cos we did store our baby's cord blood at birth. We were told to hold on to the infusion then cos baby was still small and we also wanted to wait to see how that little Aussie toddler, Georgia's infusion go. After knowing about Georgia's improvements, we are going to give this stem cell infusion a try since we have stored our baby's cord blood.

 

[Angelmum]

However, he is still not able to roll over, sit or crawl yet.

For his seziures, I have noticed that the intensity and frequency have reduced since we started him on the Hemeopathy Treatment. Has anyone heard or tried it?

fyi, DD only learnt to sit up padded after 19mths.
Hv not heard or tried Hemeopathy.

 

[epicurean]

KJ mummy,

About Seb's non-stop crying, fussing & stiffening, it gradually got better coz of combination of factors. I learnt more ways (esp on positioning) to better manage his GERD. We found a PT experienced in working with special needs children who understood his condition and correctly identified the causes of his pain & distress - GERD, migraines (due to pressure inside his smaller sized head), hips (he was pulling them out of position with his extreme hypertonia), tight muscles (spasticity). Our PT worked on him with an osteopath who focused on easing the pain, tightness & pressure of those areas. I know this sounds unbelieveable but over time, his osteo managed to bring out the frontal part of his head which was previously much more sunken (the indentation was almost 90 degrees). This has freed up the tension & pressure inside his head and given his brain space to grow & develop. His neuro also started him on diazepam which works on calming his central nervous system and brain.

When he was around 8 months, we started seeing improvements that were very heartening. He's much happier, calmer, relaxed ... I can do a lot more therapy, exercises & play with him. He smiles, laughs when tickled, giggles when bombarded with kisses :tlaugh:He looks at us attentively when we tell him about our day or stories, esp in Teochew! He can hold up his head and sit assisted in his special seats. He can't roll or crawl ... we roll him and do tummy time everyday coz that's great exercise for him. He smiles when we play clapping with his hands and he especially enjoys sitting on grandpa's lap every night. He derives a sense of security & assurance from his hands being held. His cries has become differentiated ... he would cry coz of specific reasons instead of the previous non-stop crying that was practically not pacified'able. During those days, I was so frustrated coz whatever baby books that I read didn't apply to him. What worked was what you mentioned ... constant carrying, avoiding sudden loud sounds or movements.

I would love to start Seb on porridge but his swallowing skills aren't consistent. We give him different flavoured puree as part of oral stimulation and to tantalise his taste buds ... he doesn't take enough for sustenance coz after a while, he doesn't want to eat it anymore.

I'm glad homeopathy has worked for your boy. His neuro cautioned us about giving him herbs or herbal concoctions coz the multiple medications which are constantly of a certain level in his bloodstream ... she always has concerns about unknown interaction between his med & other stuff. We just have to find what works for our children

 

[KJ mummy]

Hi epicuren,

When did Seb start his PT? I am impressed with so many things Seb is able to do now! :red:How old is he already?

Is Seb able to track objects well? My son is not able to track objects well and his eye focus is not long. He is still not able to hold his head - for long. He can only hold if he does not push backwards. Once he push backwards which he tends to do that, his head will drop back. We have been training him to support his head and sit as part of his PT. Is your PT from private? How are the charges? I am keen to talk to your PT. Can you PM me your PT contacts if you dont mind?

Regarding the Homeopathy, we were also concerned initially whether is safe to give my son esp when he is also on other medications. We checked with his neuro docs and they told us that they were fine with homeopathy cos there is no side effect to it. So, we started him with homeopathy with the docs given green light. So far we do see some improvements in his response.

What kind of special chair do you put Seb to sit? CAn you show me a pic? For me, I just put my son on the normal Fisher-Price rocker which we can adjust the angle of the sitting position. We will put him in the rocker when he is not sleeping in the cot. We will carry him to sit on our laps when we are feeding him porridge. It is quite tough cos we need to support his neck with one hand and feed him with the other hand.

 

[yummymummy]

What kind of special chair do you put Seb to sit? CAn you show me a pic? For me, I just put my son on the normal Fisher-Price rocker which we can adjust the angle of the sitting position. We will put him in the rocker when he is not sleeping in the cot. We will carry him to sit on our laps when we are feeding him porridge. It is quite tough cos we need to support his neck with one hand and feed him with the other hand.

KJ Mummy,

I had lots of seating problems with my baby with hyperarching like you said. We had to put baby in our laps and another person feed... till PT (same PT as Epicurean's) rec this chair.
Love and a Leap of Faith: Seating Solution
What you do is prop up the sides with rolled up towels to help stabilise your baby's spine. And put at most incline so will minimise arching back. I can send you a pix if you want just pm me.
9 months should be the right time to get this chair. I had the FisherPrice chair as well but gave it away cos it does not offer adequate support (cloth seat backing) for her spine.

You may want to get it from the Singapore Motherhood Forum. I just saw a mummy selling it for $45 usual price about $110 cos it's ordered from the US and unavailable here.
http://www.singaporemotherhood.com/forumboard/messages/449183/3311234.html

hope it's not taken yet cos it's a very good feeding chair. I wanted to get it as a spare for my gal...but another kind mummy is giving me hers.

hope this helps with your baby's feeding. Vera has mild reflux too and it helps for us to let her sit in the chair for up to 1 hour after the feed.

 

[yummymummy]

Regarding the Homeopathy, we were also concerned initially whether is safe to give my son esp when he is also on other medications. We checked with his neuro docs and they told us that they were fine with homeopathy cos there is no side effect to it. So, we started him with homeopathy with the docs given green light. So far we do see some improvements in his response.

Hi KJ mummy

I am keen to explore homeopathy as well for Vera, but for her phlegm. Can you share more about homeopathy? I think other parents may be interested as well. Sometimes alternative therapies are effective when orthodox meds have little effect.

 

[epicurean]

KJ mummy,

Thanks Seb has worked very very hard to get to where he is today ... we're still grappling with on-going issues like possible hip dislocation & scoliosis among other things. He's now 19 months old ... we started seeing current PT when he was 5 months coz his NUH PT was too scared of and intimidated by his condition to do anything constructive with him.

Yeah Seb can hold up his head but sometimes he gets lazy and lets his head drop forward then we nag at him to hold it back up. He can track with his eyes but not consistently. He has involuntary movements that make him constantly look to his left so we're working to get him to look to his right. He can see but I'm not sure how well his vision is ... he likes looking at yellow, black & red colours as well as faces (the more animated, the better). Sometimes I think he sees better in dim lighting coz there have been quite a few occasions that he did consistent tracking in that kinda lighting. The first time, my new helper tried to bottle-feed him, he didn't want to drink until he checked her out ... he kept looking at her face, her t-shirt ... after he was done seizing her up, then he drank hahah. Anyway, I think his main way of identifying people is thru smell then voice.

Hmmm, I should try asking his neuro about homeopathy ... no harm asking her, right? Btw, Seb uses 2 seats/chairs ... one is the 4-stage feeder chair by The First Years a mentioned by yummymummy. Can get from Toys are Us for around $100 but if you have contacts in the USA who can help to bring it back, it retails at Wal-Mart for US$30 ... the difference is crazy! My brother is working in the States so he bought it and carted it back on one of his home visits. The other chair is the Special Tomato seat (from Adaptive Mall) which is good for his spine & hips, recommended by his PT. Same thing, I made use of my bro This seat is good for him going out coz it keeps him posture right in the stroller. Below are the pics ... we're milking the seat for all it's worth by even using it for tummy time! Seb takes his puree in either chair.

 

[epicurean]

Sorry, I'm not as tech savvy as I think I am *sheepish* Here are the pics ...

1. The First Year 4-stage feeder chair

2. Special Tomato seat

3. Tomato seat inverted for tummy time

 

[epicurean]

KJ mummy,

Sorry for being long-winded .... I found a pic of Seb (in his younger days) in the feeder chair with towels to help prop him up for correct posture. Yummymummy described it well in her post ... it's to ensure baby doesn't slouch or flop to one side plus prevent over-arching.

 

[KJ mummy]

KJ Mummy,

I had lots of seating problems with my baby with hyperarching like you said. We had to put baby in our laps and another person feed... till PT (same PT as Epicurean's) rec this chair.
Love and a Leap of Faith: Seating Solution
What you do is prop up the sides with rolled up towels to help stabilise your baby's spine. And put at most incline so will minimise arching back. I can send you a pix if you want just pm me.
9 months should be the right time to get this chair. I had the FisherPrice chair as well but gave it away cos it does not offer adequate support (cloth seat backing) for her spine.

You may want to get it from the Singapore Motherhood Forum. I just saw a mummy selling it for $45 usual price about $110 cos it's ordered from the US and unavailable here.
http://www.doesnotwork.com/forumboard/messages/449183/3311234.html

hope it's not taken yet cos it's a very good feeding chair. I wanted to get it as a spare for my gal...but another kind mummy is giving me hers.

hope this helps with your baby's feeding. Vera has mild reflux too and it helps for us to let her sit in the chair for up to 1 hour after the feed.

Hi yummymummy

Thanks for sending me the link for that feeding chair. I have PM the mummy and is waiting for her good news. ancing_tongue:

Yes, my baby likes to arch his back and is affecting his head control. You are right to say that there is not much support for the spine in that FisherPrice rocker. I will replace another feeding chair for my baby.

During my baby's previous OT session, the therapist did show us how to sit my baby on a car seat with rolled up towels at the sides for support. I did not really follow cos I thought that his current rocker is good enough by putting 2 rolled up towels at the sides. Did not think about the back support is not good :elvis:then.

For Homeopathy, it is recommended by our private PT who also has a CP child. She was formerly working in NUH as a therapist or something like that..She started her son on homeopathy when he was very young and it worked for him. Her son is now a normal teenager studying in a normal sec school. A few of the other mothers whom I know whose children have CP with other health problems are also on homeopathy and so far their feedbacks have been positive too. Yes, we decided to give this homeopathy a try when we see all his current medications do not seem to work very well and there are so many side effects. At least for homeopathy, there is no side effect. Please note that it takes a longer time (min 6 mths) for homeopathy to see the effects therefore you need to have patience when you are on it.

The homeopathy practioner that I am seeing does not have a website. She sees patients in her private condo. She has been a homeopathy practioner for many many years. This website (Welcome to G-Therapy) here is about Homeopathy Treatment and you can read more about it. If you are really keen to try, please PM me for the contacts.

 

[KJ mummy]

KJ mummy,

Thanks Seb has worked very very hard to get to where he is today ... we're still grappling with on-going issues like possible hip dislocation & scoliosis among other things. He's now 19 months old ... we started seeing current PT when he was 5 months coz his NUH PT was too scared of and intimidated by his condition to do anything constructive with him.

Yeah Seb can hold up his head but sometimes he gets lazy and lets his head drop forward then we nag at him to hold it back up. He can track with his eyes but not consistently. He has involuntary movements that make him constantly look to his left so we're working to get him to look to his right. He can see but I'm not sure how well his vision is ... he likes looking at yellow, black & red colours as well as faces (the more animated, the better). Sometimes I think he sees better in dim lighting coz there have been quite a few occasions that he did consistent tracking in that kinda lighting. The first time, my new helper tried to bottle-feed him, he didn't want to drink until he checked her out ... he kept looking at her face, her t-shirt ... after he was done seizing her up, then he drank hahah. Anyway, I think his main way of identifying people is thru smell then voice.

Hmmm, I should try asking his neuro about homeopathy ... no harm asking her, right? Btw, Seb uses 2 seats/chairs ... one is the 4-stage feeder chair by The First Years a mentioned by yummymummy. Can get from Toys are Us for around $100 but if you have contacts in the USA who can help to bring it back, it retails at Wal-Mart for US$30 ... the difference is crazy! My brother is working in the States so he bought it and carted it back on one of his home visits. The other chair is the Special Tomato seat (from Adaptive Mall) which is good for his spine & hips, recommended by his PT. Same thing, I made use of my bro This seat is good for him going out coz it keeps him posture right in the stroller. Below are the pics ... we're milking the seat for all it's worth by even using it for tummy time! Seb takes his puree in either chair.

Hi epicurean

Thank you so much for the pics of Seb on the feeding chairs. I have set my mind to get one - the one recommended by yummymummy.

About visions, the docs from Kandang Kerbau Hospital also think that my baby may not be able to see well due to his brain conditions. They have scheduled him for eye checks and the results are that my baby does have some visions but not very good. They tested him by shinning lights into his eyes and placing objects in front of him. My baby did not blink when the light was shone into his eyes and he did not track the moving objects. However, the eye docs said that the formation of his eyes are normal but only his visions are affected by the brain. Despite this, I believe my baby can see!!

My baby also responds much better to sounds and movements. He would look up and start to look around whenever we call him or when he hears loud music. He would also turn and look whenever we walk pass him. My baby also has a preference when it comes to who is feeding him milk :001_302: He prefers his daddy than mummy:embarrassed:. He would not suck frm the bottle if I were to feed him but the moment daddy takes over, he would start drinking very fast:tconfused:

My baby also tends to look at one side-right. We would always train him to look more to the front by constantly adjusting his head.

 

[chloe.lim]

Hi yummymummy

Thanks for sending me the link for that feeding chair. I have PM the mummy and is waiting for her good news. ancing_tongue:

Yes, my baby likes to arch his back and is affecting his head control. You are right to say that there is not much support for the spine in that FisherPrice rocker. I will replace another feeding chair for my baby.

During my baby's previous OT session, the therapist did show us how to sit my baby on a car seat with rolled up towels at the sides for support. I did not really follow cos I thought that his current rocker is good enough by putting 2 rolled up towels at the sides. Did not think about the back support is not good :elvis:then.

For Homeopathy, it is recommended by our private PT who also has a CP child. She was formerly working in NUH as a therapist or something like that..She started her son on homeopathy when he was very young and it worked for him. Her son is now a normal teenager studying in a normal sec school. A few of the other mothers whom I know whose children have CP with other health problems are also on homeopathy and so far their feedbacks have been positive too. Yes, we decided to give this homeopathy a try when we see all his current medications do not seem to work very well and there are so many side effects. At least for homeopathy, there is no side effect. Please note that it takes a longer time (min 6 mths) for homeopathy to see the effects therefore you need to have patience when you are on it.

The homeopathy practioner that I am seeing does not have a website. She sees patients in her private condo. She has been a homeopathy practioner for many many years. This website (Welcome to G-Therapy) here is about Homeopathy Treatment and you can read more about it. If you are really keen to try, please PM me for the contacts.

Hi KJ Mummy and everyone,

Been reading about the recent posts especially Homeopathy, did a search on it and it briefly reads about medication being administered; but medication which is purely as natural as possible.
It's really very brief but we're keen to explore..any more information will be really helpful...or is there a way to contact the therapist that you are seeing right now? Probably her blog or contact email to ask her questions?

Thanks very much!!!

 

[KJ mummy]

Hi KJ Mummy and everyone,

Been reading about the recent posts especially Homeopathy, did a search on it and it briefly reads about medication being administered; but medication which is purely as natural as possible.
It's really very brief but we're keen to explore..any more information will be really helpful...or is there a way to contact the therapist that you are seeing right now? Probably her blog or contact email to ask her questions?

Thanks very much!!!

Hi Chloe.lim

I will ask my therapist whether I can give you her contacts so that you can check with her more on homeopathy.

In the meantime, I have found another website on homeopathy where the practitioner has a clinic in Yishun. The one that I am seeing is located in Clementi area. I hope you can find out more info from here Satguru Homeopathy Clinic Singapore.

I know of one mummy who is seeing this practitioner but her charges are higher.

 

[yummymummy]

My baby also responds much better to sounds and movements. He would look up and start to look around whenever we call him or when he hears loud music. He would also turn and look whenever we walk pass him.

My baby also tends to look at one side-right. We would always train him to look more to the front by constantly adjusting his head.

KJ mummy,

just to share Vera's eyesight also not very good cos there's a "hazy curtain" covering parts of her eyes. But stimulation is key for our babies. The more you stimulate, the more the eyes work and "train" the brain. Vera also tends to look to one side, the good eye side. Try to offer stimulation then move it to the other side to encourage self turning of head.

We've found that Music Therapy works wonders on the brain too. Lots of singing, lullaby CDs, nursery rhyme CDs to stimulate the brain.

Thanks for the info on homeopathy...am keen to check out the one in Yishun.

 

[Angelmum]

.... but medication which is purely as natural as possible.

Talking about natural products, anybody heard of eliminating poison/toxin ie chemicals from our house and introduce chemcial-free product (eg tea tree oil) into our household? They claimed to use naturally derived ingredients with no chlorine bleach, ammonia or formaldehyde. They also have health products (claimed to be from natural extracts n cheaper than organic food) for consumption and beauty product (doesn't contain lead) for consumers.

There are 3 stores in Spore to shop in. This company says "Chemical over exposure has resulted in the rates of childhood asthma and respiratory problems as well as ADD and ADHD to be on the rise, other problems like autoimmune disorders, childhood cancer, birth defects continue to be mysterious but have been associated with chemicals and as many people have their children on multiple medications to control a variety of these ailments,they overlook the fact that common triggers lie within their homes".

This company claimed they are eco-friendly, reduce plastic (eg 1 bottle of their washing detergent is 5x concentrated, u got to dilute with tap water b4 using). After diluting, it has the same cleaning effect but cost lesser than products conveniently purchased at supermarkets.

 

[Angelmum]