Child with Cerebral Palsy

[Jess77]

Hi everyone,

This is my first time on the forum, so i hope i've posted ok. I have a beautiful little boy who is turning two this week. He is my first baby (and only so far). I noticed at about 4 months that he didn't seem to be developing as well as other babies his age and so had him referred to see a physio. She said he'd need a lot of therapy and after countless sessions and visits to specialists he was diagnosed with cerebral palsy at the start of this year. My little boy can commando crawl and sort of sit up and he can comminicate through play and laughter, but no words yet. He was born at full term and a very healthy weight and i had a completely normal pregnancy. All tests so far have come back normal, no one can tell me how this happened. Of course i love him so much and just want the best for him. I was just wondering if there was anyone out there in a similar situation and how they cope with feelings of jealously and sadness, all the while trying to stay positive.

[Trillian]

Hi and welcome to BellyBelly! I know how much you've probably been struggling with this, my sister has a little girl who aquired CP after birth trauma and she will be 2 in January. She is at about the same stage physically as your little boy, but she can talk though. It's certainly been a challenge for my sister and she's been through a lot of ups and downs. She has her in a wonderful early intervention program though and she is seeing some great results. Do you have your little boy in early intervention at all? The playgroup attached to my sisters centre has been a great outlet for her to talk to other mums who have children with CP.

[Jess77]

Yes i have my little boy in a brilliant early intervention centre. He's been there since the start of the year and they've been a great help in getting his development moving along. It's also a nice place to go and feel like part of a group, whereas if i'm with my 'normal' mother's group sometimes i feel like a bit of an outsider (even though the mums are all fantastic there too). I guess nothing in life is certain, but oh the worry. My best wishes for your sister and niece, i'm sure they're very grateful to have your support.

[HotI]

Hi Jess

Has your son had an MRI? Do you see him improving with the therapy?

My niece is two in a couple of weeks and has CP from a birth injury. Knowing the reason for the CP does make it easier in some ways. It is amazing when i see her achieve something that she has to work at a lot harder to do than other kids. Her abilities are more noticeable when i see her with other kids who are running around, especially when they are younger than she is but doing more things.

Have you used signing with your little one? Speech might be a bit harder, and signing can help with their frustration at not being able to be understood.

take care,

Kate

[Gigi]

Jess, which state are you in?

in our state, there is a fantastic charity called NOVITA which is a great support to parents of kids with CP. they provide lots of medical intervention and social support too.

i hope there is an organisation like that in your state.

i don't know what my stepchild (who has CP) would have done without NOVITA.

She is in mainstream schooling with support, right grade for her age. There are so many types of CP, very individual thing.

What a shock this must have been to you, i think the more CP parents you get to speak to and be around, the better, you need people who have been where you are now.

i can't pretend to know what you're going thru, cos i haven't been in your shoes.

[maz]

I could just hug you Jess.

well done firstly for noticing so early on that something wasnt right with your little guy.
Its one of the hardest things to digest as a mother that her child isnt 'normal' or functioning as everyone else's babies are.
Mothers group can sometimes leave a foul taste in your mouth for its competitiveness and really hurt when your child is not the 'norm'.

I agree with Kate - you really need to have an MRI to determine what sections of his brain are effected. Pead's tend to wait until your child is NB or at 12 months before doing them (so Ive been told). I personally wouldnt worry about the speech issues. Our speechie told us that CP kids can have larger tongues then normal so keep that in mind. Nuro specialist at the Royal Childrens in Melbourne also said that eye sight can be a big thing with CP kids. CP is more about the physical aspect of things.....and again...having an MRI will determine exactly what sections of the body are effected.

At 6 weeks, Mateauz had a very grim outlook to his life - after suffering many strokes due to blood clots in his brain formed by mengi****iles and a staff infection, we were lucky he was alive at all. His left hand side was weak and there was a big delay in his reactions to this whole side. I was told that his brain has sevier unrepairable damage..wouldn't sit let alone crawl before 18 months and possible not walk at all BUT we had hope and the spealists were extemely excited that he was breast feeding so well as it ment that that part of the brain wasn't effected or damaged.

Cut out 8 months of pyhsio 4 times a day, massages, appointments, ultra sounds and ive got an active 10 month old, who crawls, sits, chat's my ear off and now has no trace of any weakness in his left side, no delay and by the last ultra sound he had..no brain damage.

Im not 100% convinced about the brain damage...I'll waiting until our MRI next year to get it confirmed...but my main aim in posting this was to say to you ....never give up hope. Stay positive and focussed..and although its tuff at times and you feel like nothing is going right and feel like giving up...think of all the hard work you have put in up until now...the effort and the struggle that has helped your son come to were he is today and were he'll be tomorrow.

All the tears are worth it...worth seeing your little man do what is normal for some but super powers for us.

Keep smiling matie..there are pots of gold at the end of the rainbow

[Jess77]

Thanks everybody for all your helpful and supportive replies. My little boy has had two MRI's and the second one came back showing some thinning on the back of his brain. The doctor said this would be the cause of his delayed development, although he still doesn't know how it happened. All the experts say it must have happened during pregnancy (although they still don't know how) and whatever it was, it couldn't be avoided. I know i just have to keep positive, or even not dwell on it, but it is hard. I will take on board the advice you guys gave me, every little bit helps.

[maz]

Our pead had wondered if what happened to Mateauz was from the infectons or from pregnancy to. I had u/s to show taht he was 'sitting' on the umbilical cord and squashing supply of blood..but nothing was done. He was also born with his cord wrapped around his neck 3 times...

Its so hard when there are so many what if's and if I had done this or said this.....I suppose we just have to forget that part of it...move on and look for the positives in our lives today.

Good luck matie and dotn forget us