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

Hi:

Seems that you and your faamily are going through a rough time of it with all the revisions. You might want to ask for a second opinion on what needs to be done.

You don't say where you are from so it is hard to know where you are getting treated. A location might be helpful to some of us in directing you to the right information or people.

I have a great appreciation for what you must be going through with a stoic child. I was a stoic at that age aswell and in many cases I guess I haven't changed much. Sometimes the best way to deal with a stoic patient is to observe closely and notice the changes as they happen. In time you will see the signs of trouble before they develop into more difficult problems.

I wish you well and hope that there will be a resolution to the situation that you and your family are dealing with. It can be a challenge at time and frustrating but there are people out here who can offer information from time to time