New here with a question
 

I have been searching forever on information, and ever so glad to have found this site!

I have 3yr old twin boys that were born at 26 weeks. Both had severe Grade 3 IVH. One of them dissolved on it's own, the other went 2 years before the shunt was placed and he was officially diagnosed with Hydrocephalus.

It's been a year, and he is really doing great! BUT... of course there is a but!
Around the same time we decided to move forward with the shunt, he was waking up in the middle of his sleep completely irrational, unable to settle down and in a total fit of rage. It didn't stop when he got the shunt, but it started happening less and less.

These fits can last 30 minutes or sometimes 2 hours, and once we were able to calm him, we just put him in bed with us because we were all worn out, and the last thing I want was to wake his brother.

Long story short, the fits are happening again, and more consistently. We've done everything, at least everything we can think of, raised the top of his bed, unplugged all electrical, turn off all the lights, quiet music, motrin - nothing works. He's 3 so, I have no idea what his symptoms are. He is fine during the day, and sleeps great during his naps?? I'm at a complete loss.

Any ideas? Is it headaches? Is there a problem with his shunt? Leigh:confused:

(((((((((Leigh))))))))))).

I'm sorry you're going through this with your little guy. :( I would run the gamut of tests--MRI, EEG, bloodwork, allergies, etc. Also, keep a log of when they happen and see if there's a pattern to them. They may be seizures or migraines and have triggers which you may be able to control, at least to an extent. If not, medication can--and often does--help. I have always had hydro and epi (I'm a 41 yo mom), and I live well with both, thanks to some slight lifestyle changes and a small dose of daily med. :) I even have an autistic child! My life is crazy, LOL, but I'm keeping up. :)

Good luck!

LIZARD :)