My name is Kristie ( on here I am know as KlWebb) I joined because I have hydrocephaluas. I have am ol;der than a lot of folks here so I am hoping I can answers questions and help some fears.

Hi. My name is Sherry, on here I am scook. I have a 5 year old daughter who at the age of 3 months was rushed into PICU due to respiratory failure. This was due to an undiagnosed heart defect. While in PICU she contracted e-coli which lead to several medical complications. One being anoxic encephalopathy. She has just recently started having increased seizure activity and we decided to have an MRI done. The results showed she has hydrocephalus. Our only problem is, if the surgeon recommends placing a shunt, it could be very risky for her. We were told that she does not have enough brain matter to hold the shunt in place and it could collapse. This could cause her to bleed into the brain. I am a true believer in the power of pray and the healing hand of God! If it were not for Him, she would not even be here today. The doctors had giving up on her in 2003, yet she is still here today. I am sorry to go on and on, I suppose I am looking for support with this and any and all prayers that can be offered.

You have my prayers. I reccomend another getting another opinion. Often times the solution that might not be thought of right away. The shunt in the brain cavity would be my first thought but I wonder if one could plced else and get the same results ?

Thank you. We have an appt with a neruo-surgeon next week to see what his thoughts and feelings on this are. My mother is going with us. She is a nurse and works with a lot of the children the doctor takes care of. When we had the MRI done we did it without sedation because of Destinee's medical problems, so most of the films were not really clear. I am wondering if we were to have another one with sedation if the doctors could get a better view. I have also started up a web-site for family and friends to keep updated on Destinee. It is (http://www.caringbridge.org/visit/destineecook). I have not posted too much as I just started on it today, yet everyone is free to visit.

i would love to try the website! and i hope a cure is found! or at least an answer.

Hi all. My name is steph ...i'm snapz on the board. I have to first start by saying I am scared to death to be here. I have a hard time hearing the stories of others, but the need and desire for me to know as much as I can so that I can provide for my son the best way I can-right now-is outweighing that fear. He was born at 23.6 weeks @ 1# 8oz. One month after birth he suffered a Grade 4 IVH. (the procedures done are in my profile). The end result was a VP shunt. My husband and I were absolutely petrified, but we must say - almost immediately after the surgery we could see a huge turn around in our son Keagen. We too have put our faith and trust in the Lord, we know he has his hand on our son. So far, no known negative signs.....so we are truly blessed. The one thing thats popped up is decreased dexterity in his right hand due to his injury, but he is getting PT once a week and ST 2x / month. Thank you for having me everybody.

Hello My name is Terry i am 34 years old from Newfoundland Canada. I was born with Hydeocephalus and I am really glad that i found this group to help bring more awareness to others about this disease a hopefully one day find a cure.

My name is Ernest. I was born with hydrocephalus and I also have clinical depression. Thank you for the invite to join Kimi..

i am Jamie.... and i have had hydrocephalus my whole life. I joined to help anyone in any way that i can, and get support.

welcome!

My name is Jennifer and my mom has hydrocephalus and just recently had 4 revisions on her shunt. She had a seizure last Sat. and the ER Dr. told her that it was b/c of all the scar tissue she had from past surgeries. I'm so worried about my mom and I want to learn more about hydrocephalis.

well, luckly for you, there are many people here who are willing to give there support and help you.

My name is Felicia, I was diagnosed with hydrocephalus at thirteen months old, and have had ten surgeries. Eight revisions and two that were unrelated.

thats cool! in a weird way. my last surgery was in november. hopefully i can make it a few years without another one! God Bless!

Hi,I'm Jem known here as Jemmac,I have a 4yr old son with Hydro born at 28weeks (2lb 2oz)with 2 grade 2 brain bleeds at birth.He had his shunt put in at 3mths and has had it in for 4yrs and then suddenly the shunt decided to play up and he had it replaced and also they found a pool of fluid on the opposite side of the brain so they had to put tube threw to drain that and all was good for 2mths when his shunt reservouirs broke and was critical and rushed to Brisbane for operation to fix it and so far so good except he has a 6 nerve palsy of the left eye but it is improving.Anyway here to chat to whom ever wants to chat.I'm a great listener......Jem