Anyone out there with a child with hydrocephalus? My daughter had a vp shunt placed two years ago and we have been in the hospital every year with shunt problems. Is there anyone out there who has a child with this? Someone I could connect with-just to swap notes. It is a very hard thing sometimes-especially since our family is expanding. Just needing a shoulder to lean on-or an ear to listen.
Well we went to the hospital twice last week. After two CT scans and two shunt series scans and a shunt tap we concluded it was not the shunt. She is doing a lot better now, but still throwing up in the morning. We will see her neurosurgeon on Friday. Thanks everyone who responded. I really liked the web sights with help-thank you.
Hello J.,
My name is Mollika and I have a son with Achondroplasia and also hydrocephalus. He was diagnosed with it when he was 11 mos old. He has had over 20 shunt revisions and a cranial expansion. I totally understand what your dealing with, the uncertainity and the worry of how your child is going to be. Please call me or write if you have any questions.
I am 32, have two other children. ###-###-####
If you haven't been in contact with Parents Helping Parents, I would encourage you to do so. ###-###-####. www.php.com They have lots of resources and support for parents facing challenges of kids with special needs.
Hi J.! My daughter also has a VP Shunt for her hydrocephalus. She also has spina bifida. Her shunt was placed when she was 2 weeks old and she needed a complete revision at 2 1/2 months. SO SCARY! She is now almost 2 and hasn't had any other issues. I thank God for that, as I have heard other stories like yours. My hubby's cousin had a tumor that caused her hydrocephalus. She had a shunt for YEARS with no issues, then about a year ago she had 3 or 4 replacements in one year. It was very hard on her, as she is a single mom in her early 20's. You are not alone. I know with spina bifida, it can cause chiari malformation, which can cause a person to throw up a lot. Make sure your doctor is looking into all the possiblilities. We have Kaiser, and they are just great. We live in the Sac area, but her special needs are taken care of by the Kaiser in Oakland. Let me know if you want to chat more, ok? take care!!
Hi J. -
My son has had a VP shunt due to hydrocephalus caused by a case of baterial menegitus at 7 months. He is now eight.
We go to the neurologist annually, and have not had any problems to date. I know this is not the reply you needed, but I wanted to let you know that there are others who have had to watch their child go through this procedure and do well afterwards. We were fortunate that this did not affect his ability to learn and do well in school, which we were warned about.
Let me know if I can help you in any way.
take care.
Hi J.,
I don't have a child with hydrocephalus, but I did find an online support group for you to check out. It is www.hydrosupport.org I hope this helps you!~
Molly
My brother had that and yes he was in the hospital quite often. He averages 2 surgeries a year for the first six years of his life. 3 of them were minor like hernia, and lengthening the drain tube but I think he had his shunt replaced 2 or three times. Be cause he was in the hospital so much as a 4- 5 year old, mom held him back from starting kindergarten and put him in a private preschool run by the Episcopal church. I think his last shunt replacement was when he was six. We don't know how long it worked or at what point his body was able to take over but he hasn't had to have shunt related surgery since and he is now 28.
Jerry had quite a few health related obsticales growing up (preemie, shunt, hearing impaired, etc) and he has managed to get through them all and turn into a responsible self sufficient adult. Looking back on his life we can see that for every obsticle God had been watching out for our family. He always managed to get really good teachers, doctors, councelors, etc. I pray that your family will be as blessed as ours was.
M.
