Hello ,and relieved to have found this site.I am a mom of a 7 year old boy named Raffi who has hydro. First year of life he had 6 surgeries. He had no complications until this past August when during a routine ct the nsg decided to revise one of his 2 shunts. Since then he has had a total of 4 revisions. After the first surgery in August the new shunt worked to well and he had a collapse which caused a sdh. One month later it blocked and another revision. The next day the shunt was found not to be in vent so another surgery was done. Six months since last revision and he is still suffering daily with headaches, the nsg will see him on the 18th of April. Should he revise again. It is breaking my heart to watch Raffi suffer on a daily basis. He did not attend school at all this year. I have manyyyyy questions and would love to hear from the people who know first hand what Raffi is going thru. I don't htink Doc's truly understand. One quick question...is the burr hole supposed to become smaller? Six months and it is still the size of a quarter. I consider this a blessing because it helps me know when pressures are up and I think he is getting relieg from it.. any comments would be more than greatly appreciated. I have felt so alone because Raffi is one of those stoic children I have read about and will not tell me anything. Just asks us to leave him alone. Red cheeks and ears and funny looking eyes are his indicators to me that he is not well. Every day though??
Thanks

welcome to NeuroTalk hydromom

I have copied your post here over to our Hydro board so that the members there can meet you and hopefully offer some insight

here is the link to your post on the Hydrocephalus Forum
http://neurotalk.psychcentral.com/sh...ad.php?t=16872

(((((((((((((((((((Hydromom))))))))))))))))))))) (((((((((((((((Raffi))))))))))))))). I'm so sorry you're going through this. What a scary mess.

I want to, first off, suggest

HydroParents home page:
http://health.groups.yahoo.com/group/HydroParents/ (I am a moderator for this list and will be happy to approve your app. )

Raffi's situation sounds really complicated. I had a subdural hematoma waayyyy back as an infant (I'm 40 now! ), but I haven't been through all the difficulties Raffi has and suggest that you ask the nsg all the questions you have. (To my knowledge, there are no doctors of any kind here on NT.) I hope someone can help you.

LIZARD

Thanks for the welcome. I will trip along learning as I go regarding the computer. I really have not had the desire to learn musch about the computer, but will try. The hydroparent site is a great place to talk about the kid's, but I really would love to learn from an adult with hydro how it feels and how you suffer. That will give me a better understanding about Raffi. He is in denial about anything that bothers him, so he will not talk about it.
Thanks

I can tell you what my hydro feels like, but bear in mind that I haven't been through many of the things that he has. An adult hydro board that may help: http://www.network54.com/Forum/8255/.

I hope this helps. Feel free to PM me with any specific questions I can help you with.


LIZARD