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Cerebral Palsy Lock Rss

Hey guys,
I'm a solo mum of 2 lil guys my oldest(Isaac)turned 3 in july & my youngest(Jacob)has just turned 19months. At around 4 months of having jacob i noticed that he was different to what Isaac had been at that age, so at his check @ plunket i told them my concerns and they just turned me away and said that i was comparing my two boys too much. but being a mum you know when something isnt right.....right??
2 months later and nothing had changed, he wasnt rolling, sitting, or coudn't even hold on to a rattle. So FINALLY they said they would do a referral to the eye clinic as his left eye would turn in. after 3 visits to find that there was absolutley nothing wrong with his eyes. The pediatrician suspected it to be Cerebral Palsy, so to find out for sure they did an MRI, Jacob now being 13months. they found nothing to indicate what was wrong with jacob just that his brain looket that of a 3-4 month. so having our hopes up, thinking that we would find out why our lil boy was like this and what had caused it got crushed. so much hurt and anger all over again! a couple of months ago we got a letter to say jacob would be having some tests, found out when we got to the hospital that he was havinng a lumbar puncture. That was so horrible i dont think i could ever try to explain the feelin of watching your child go through so much pain, and then after it being told that after all of that it most likely wont show up with anything new! that we may never know what is wrong with Jacob but that they still think hes like a Cerebral Palsy child. And well i still havent heard anything back from those tests. It is so horrible to have to get up and start a new day knowing that i may never know what is wrong with him and how that is going to affect us all not only now but in the future. He is the most amazing lil miracle and i love him so much and it hurts so much to have to see him live like this, i just want to know if there are any other mums out there who are going through this too and know how it feels?

Tracy, NZ Zachy and J

tracy,
I cant tell you how fraustrating health care professionals can be in dignosing cerebral palsy for babies - especially when they are under the age of one.
My son like yours had a turning eye at about 4-5 months- my health sister was worried about this though and sent me to a neurologist and a paediatiritian who both said mri clear and that he could just be a little slower than most kids- or that he had a lazy eye and that it would fix up over time... At around 8-9 months my son wasnt holding his head up very well and could not sit or stand or do any of the other things most babies of that age could do. Again I took him to a paediatrition who said he was just lagging a bit and that he would be ok and that there was nothing really wrong. I just knew this wasnt right- he would just lay on his back or move around the floor on his back by pushing his head back.
Finally I heard about Dr Lionel Lubitz at the Royal Childrens Hospital here in Melbourne- he was meant to be one of the best. I took my DS there and within 2 min he said your son has cerebral palsy.
It has been hard at times but its funny how much you can cope, I moved to England for a couple of years with him so he could do a program at the national institute of conductive education to learn how to sit and stand with a frame. He learned those things and I came home- there are now conductive ed programs over the world. It is important you have early intervention and that you get help. Cerebral Palsy really varies, Botox might help your little boy if he cant walk- it certainly helped mine a little.
Most of all you need a great doctor who knows children really well- you need the best. There is NO blood test and most MRI's turn up ok to diagnose cerebral palsy which makes it hard. Best you get a fantastic Paediatritian and know that you can cope.
My DS is 10 now and goes to a special school and is a happy gorgeous little angel- Honestly you have to go through a tiny mourning period in your heart for the things that he might not be able to do in life- but the beauty is most kids with CP dont compare themselves to the other children and most often dont know what they missed out on and are happy. It hurts us a lot more than them. If you need to chat let me know. You will be ok and so will he.
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