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Hydrocephalus preemies..

Johnna - posted on 03/01/2010 ( 1 mom has responded )

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We just had our 5th shunt revision. Baby K is almost 15 mn old and has only had the shunt since May 09.She's in the hospital almost every month. It seems that after every revision she loses all the coordination and skills she's worked so hard to achieve. The Drs tell me it will get easier..Looking grim from where I'm standing. Don't get me wrong, I thank God her heart is beating,she just seems to take 2 steps forward and 3 steps back.. Anyone else out there with shunt issues?

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JessieRaye - posted on 03/15/2010

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Dawson started out with spinal taps,graduated and eventually had a shunt placed. He was not showing sign of failure but routine MRI showed his ventricle size not decreasing so he go another one. That one didnt work so he got a programmable shunt placed. This was all in his first year. The programmable shunt is working and now he is four. He has cerabal palsy which he was diagnosed at 18 month. It effect his legs his left more than right and his left arm.He was so young when he received his shunts that I never noticed any backward regressed behavior. They tell me when his shunt does fall that is a sign. Slow steady progress is the motto that we have come to know. I understand your frustration and hope everything will turn oout ok for you and your child. If you need to talk please dont hesitaite to write. We have and always will continue with his care. There is many more things i could talk about put I dont think there is enough room but i will be more than happy to continue talking with you. just give me a email.

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