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meggs2003
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Hello everyone!
My name is Megan, I had my son 5/31 at 30 weeks 3 days. He had a head ultrasound at 10 days and discovered a grade III IVH w/ hydrocephalus. He had a resirvoir placed, and a few weeks later a VP shunt. His neurosurgeon said he is at high risk for CP. At this point he is only 6 weeks corrected age, and he said that the signs wouldnt show up for a few months to a few years. I just wanted to get some support ahead of time.
What are some signs i CAN look for in him as he develops?

Explore topics in this discussion:

Hydrocephalus Microcephaly CPAP Stroke Pregnancy Cerebral palsy

5 replies

Dancie

Hi Megan

Look under the discussion What age? by quad mama. This gives some about what info what some families have seen as first signs. My lovely boy was born on the 31-5 also but he was born in 2008. I also left hospital with a MRI that suggested CP was likely, so I feel for you. This time last year I was not feeling so great about life, but things have got a lot better! It is amazing what you can get use to!!! Our boy brings us lots of joy.

Paigie

Hi, firstly i have a daughter 11yrs with cp due to birthing injury. But when she was 2yrs i fell pregant again, my son was born at 29 weeks i had already been in labour a week and was told that he would have severe CP and who knows what else. to be honest it killed me broke my heart. Well he was born i only got to see him as they wheeled him away. they had to resusitate him and he was blue. We found out that he had blood on the brain, hole in the heart, cronic lung disease and wasn't going to survive, he was put on life support for over 2months, he past away so many time i lost count. he then graduated to CPAP for over a month finally to come home to WHAT, they didn't no.....i spent the next few years panicing as i waited and hoped that each milestone would come. I almost wished is little life away (in a nice way).....I am pleased to say he is 8yrs of age and his normal age, and a normal boy no one believes me when i tell them how young he was and what was wrong with him. I think what i am trying to say is try not to do the same, help him reach his goals like you would with a baby without complications. And enjoy every minute with him. And the Doctors do not no everything.....my son proved them wrong. but i feel i didnt enjoy the time with him as i could have, if i wasn't worried about all the things he didn't do. it should have been what he can do....I hope that helps, i just feel you need hope...take care...

Sasori

Hi Meggs
What a wee cutie he looks! My daughter has the opposite problem, she has microcephaly (small head) has her brain was so badly damaged it never grew. Anyway, a close friend of ours' son has hydrocephaly. I warn you tho, his is much worse than your son's - if the scale goes to IV his bleed (post birth, born at full term) was a IV++ so he is quite severe. But I thought it might be useful for you to get in contact with his mum, Shirley. I've attached a couple of links to stuff involved in the family's fundraising for treatment for him, so that you can google her and contact her (many people have, and I can't just post her email address). Due to the severity of her son's stroke they knew he'd have CP, and it is quite obvious, but she may be able to offer advice with the shunts - they've had lots of experience! Her son recently turned 3, and they are in hospital again getting new shunts put in/moved around. But....even with posting you this info, the main thing I'd say is, don't waste too much time looking for symptoms. Your son will be as he will be. Keep him as active as possible (movement through space is great for CP kids anyway - it helps them learn about their bodies), and try not to compare. That's an awful hard thing to do, and you've got a long road ahead! But it does get easier. As a parent you'll be gasping for knowledge, and in this technological age it's easy to get over-educated! Take it easy and enjoy your son, and we'll all be here when you have questions. If you feel brave, hunt out a CP coffee group in your area. Often the kids range from darn near 'normal' to quite severe, and if your son does have any difficulties, these families who have been there and done it already will be the best help you could hope for.

http://www.3news.co.nz/Video/60Minutes/tabid/371/articleID/89418/cat/46/Def ault.aspx#video

http://www.givealittle.co.nz/member/shirleyt/project/caleb

meggs2003

Thank you all so much! I appreciate the support. I am trying really hard to just relax and let things go they way they are going to. its just difficult :-) as im sure you all know. he is a wonderful little boy we were actually just at his pediatric surgeon and weighed 10lbs today!! he is 6 weeks corrected age.

Noels_Mummy

My daughter was born full term and shortly after birth it came apparent that she suffered oxygen deprivation 12-72 hours before birth. Due to the fact we had no complications during pregnancy we do not know why this has happened. Her MRI shows about 80- 90 percent of the brain mass dealing with the motor control is dead. We were told just to love her and every little mile stone is a huge achievement for her. So that is what we are doing. We found keeping her active helps a lot. We also find a lot of milestones happen with our animals. She first spread all 5 fingers out to pet our horse. She know opens and closes her hands around the cats ear (thankfully the cat loves it.) We also find taking her around other children helps her learn other ways to do things or use things in a new way. Swimming is also another way we keep her limbs from stiffing up. She is now 6 months old and surprising her doctors every chance they see her!! From what I have learned about cerebral palsy every child's symptoms are different. Noel's is mostly twitching and stiffing of limbs. I just go with my mommy gut. If it goes off it usually means something is up.

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