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-   -   Hydrocephalus help (https://www.neurotalk.org/hydrocephalus/66751-hydrocephalus-help.html)

coeburn69 12-17-2008 03:06 PM

Hydrocephalus help
 
hello i'm still very new at this but Wed i had to take my 18 month old son to see the doctor over hes shunt, and the doctor was a @ss hole to me and the father.... He said there was nothing he could do..... And my son father had found some medince that would slow the draing....... And i didn't know if anyone has tryed this or know anyone that has.... I'm very much lost in this, austin is very special baby..... i had him at 30 weeks and he had 2 stokes..... And the doctors was saying he was not going to live and on oct 28 my baby got to come home..... i really would some advice or something and anything at this time really....:(

jadiee-x 12-17-2008 05:44 PM

Hello there, Welcome to neurotalk :)
Whats the problem your son has with his shunt?
Overdrainage?
Underdrainage?
Blockage?
any ideas? xo

coeburn69 12-21-2008 01:35 AM

Its not working or draining the right way.... they do not know what to do for him and the doctors around here do not know how to deal with him....... :confused::(:eek:

jadiee-x 12-21-2008 03:13 PM

Where is your baby being cared for??

i would suggest he get treated at Great Ormond street hospital, they specialise in stuff like this, they are absolutely amazing.

a shunt revision surgery seems like the best bet, replacing the whole shunt, the valve and proximal and distal catheter.

all the best of luck to you :)
take care x

coeburn69 12-26-2008 09:15 PM

vir
 
My child is at home with me and he big brother.... We are from virginia. they already replace it 1 time. he has two instated of 1....

elivatedprisim 12-30-2008 02:52 PM

help
 
Quote:

Originally Posted by coeburn69 (Post 429398)
hello i'm still very new at this but Wed i had to take my 18 month old son to see the doctor over hes shunt, and the doctor was a @ss hole to me and the father.... He said there was nothing he could do..... And my son father had found some medince that would slow the draing....... And i didn't know if anyone has tryed this or know anyone that has.... I'm very much lost in this, austin is very special baby..... i had him at 30 weeks and he had 2 stokes..... And the doctors was saying he was not going to live and on oct 28 my baby got to come home..... i really would some advice or something and anything at this time really....:(

I would find the best doctor possible , There are ethics and it sound like that doc needs an attitude adjustment.

tamiandrudy 01-15-2009 09:13 AM

Not sure if this answer is too late. My son has a WONDEFUL doctor here in Orlando. I am not sure if he has connections in Virginia, he has in England, so probably. Anyhow, he is Dr. Jogi Pattisapu. Because I just joined I can't attach the website, but please google him. Contact the office, he'll call you back. Really. God be with you and your son...btw..any updates??

Heather1979 05-24-2011 08:04 AM

God Bless you
 
Quote:

Originally Posted by coeburn69 (Post 429398)
hello i'm still very new at this but Wed i had to take my 18 month old son to see the doctor over hes shunt, and the doctor was a @ss hole to me and the father.... He said there was nothing he could do..... And my son father had found some medince that would slow the draing....... And i didn't know if anyone has tryed this or know anyone that has.... I'm very much lost in this, austin is very special baby..... i had him at 30 weeks and he had 2 stokes..... And the doctors was saying he was not going to live and on oct 28 my baby got to come home..... i really would some advice or something and anything at this time really....:(

Hi i'm Heather i know exactly what you are going through. my parents went through the same thing thith me. i was born with an intracranial bleed in utero and this had lead to the place it had been injured was scarred over and it lead to the Hydro. , i was not said to live to be a yr old since then i have been very blessed with very skilled drs and my wonderful family by my side. i have seen many atients have shunt revissions more times than i through my 31 yrs of life. but it takes Faith and trust in God i hope and pray you and your Family are well tc and God bless :hug:


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