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Name: ChoSon1
[ Original Post ]
Anyone out here (NC) who has a young child with hydrocephalus and willing to share stories......pls. contact me.
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Name: carrots | Date: Apr 29th, 2007 7:11 PM
how about communicating hydrocephalus? e-mail me @ [email protected] 

Name: pwheatle | Date: May 1st, 2007 6:27 AM
My six month old daughter has hydrocephaly. Diagnosed at three weeks. Has had three shunts...one initial, one revision and now has two functioning shunts at the same time.
Tricia 

Name: Alonzo Robinson | Date: Jun 12th, 2007 9:55 PM
I have hydtrocephalus and I've had it for 15 years. 

Name: kimber | Date: Jul 3rd, 2007 4:58 AM
Yes, my sister had a son with hydrocephalus and he is now 9 yrs. old. He never had a shunt placed and the water finally went away on its own. We did get the diagnosis that he is mentally challenged. 

Name: kimber | Date: Jul 3rd, 2007 5:00 AM
Oh, I am from NC too, but it is probably my sister you would want to talk to about it. 

Name: dawnmaq | Date: Oct 17th, 2007 7:25 PM
I ahve a 10yr old son with hydrocephalus who is not showing problems (acting like a stroppy teenager) can anyone help 


Name: dawnmaq | Date: Oct 17th, 2007 7:25 PM
I have a 10yr old son with hydrocephalus who is not showing problems (acting like a stroppy teenager) can anyone help 

Name: david | Date: Jan 19th, 2008 7:29 PM
baby 

Name: david | Date: Jan 19th, 2008 7:33 PM
i have a 2 moth old born 26 week with hydrocephalus 

Name: lindz | Date: Mar 8th, 2008 7:16 PM
i have hydrocephalus. i'm 15. 

Name: Tina | Date: May 4th, 2008 5:06 AM
I have recently been diagnosed with hydrocephalus at age 32 and don't know if it is congenital or caused by an injury 3 years ago. looking forward to possible surgery. mother of four children who need their mom back. hoping i will return to the way i use to feel. 

Name: sian hodkinson | Date: Apr 6th, 2009 12:54 PM
i'm 28 weeks pregnant my baby as hydrocephalus and currently going through promknown as premature ruptureof membranes i am looking for advice 

Name: Cindy | Date: May 27th, 2009 9:14 PM
Our Grandson had his shunt placed when he was just 2 days old & then redone at 2 months. Since then it has functioned just fine. He turned 5 in FEB and we have noticed emotional problems. Is this one of the side effects or is it just imaturity? He has also been teased by his school mates about his big head... any suggestions? I can be reached at [email protected] and would apreciate any comments/thoughts. 

Name: beads15 | Date: Jun 21st, 2009 10:05 PM
hello i am 35 years old i was born with hydrocephalus i never had a shunt i dont think it was an opption back then tryin to get into a chatroom 4 people with hydrocephalus 

Name: Cindy | Date: Jul 30th, 2009 8:22 PM
Hey my name I'd cindy and I'm 15 yes old I was diagnosed with hydrocephulus when I was 7 years old I have never met anyone else with it I was wanting to share my story with anyone who will listen thanks

Cindy W 

Name: Danny Lamb | Date: Aug 22nd, 2009 4:16 AM
Hey. I have hydrocephalus and have had it since I was 3. I'm a singer/songwriter and have been working on a song with the piano player of Canadian Idol. I wrote a song that is inspired by kids with hydrocephalus and I have big plans for it. If anyone is interested in hearing more or being involved please I would be greatful if you got in touch!.
[email protected] Thanks.
My name is Danny Lamb and i'm 21 years old 

Name: Gloria | Date: Nov 21st, 2009 1:38 AM
I have a 1 month old newborn, she was diagnosed with Hydrocepahlus in the womb. She had a Third V surgery a week and a half ago, and it was unsuccessful, now the doctors must proceed with the shunt. I would like to speak to someone out there who I cantalk a little bit with about this, I am worried and I would like to speak with others who is and have been in this situation with their children. 

Name: Gloria | Date: Nov 21st, 2009 1:41 AM
you can reach me at [email protected] and my AIM is mommylovesu1098 Thank you 

Name: justme | Date: Jan 2nd, 2010 5:42 AM
To all of you that have Hydrocephalus or love someone who has it, YOU ARE SO STRONG! I have had Hydrocephalus for almost 21 yrs. The head pains ache sometimes but other than that I am ok. To the parents of children who have Hydrocephalus, you are their heros every single day! 

Name: dean | Date: Jan 15th, 2010 2:53 PM
HI...I have an 8 year old son with hydrocephalus....would like to talk with others who have son around same age... 

Name: kerrie | Date: Jan 15th, 2010 2:57 PM
Have a son who is now 8, was born with hydrocephalus. He has many other issues due to the hydro.....Right now we are battling with spasms and sleepless nights....I wuld like to talk with other partents who have a child simular.
[email protected] 

Name: junepaczas | Date: Feb 24th, 2010 8:53 PM
i have lived with this condition for 42 years if you need qustions please ask me i had this at birth im 42 now 

Name: Claudia | Date: Mar 9th, 2010 8:33 AM
I was born with hydrocephalus and i have twin sister, we are 23 yrs old. my question is? if one day will i be able to form a family, have my own babbys? 

Name: Abby | Date: Mar 10th, 2010 5:30 PM
ive had hydrocephalus for thirteen years (all my life) i had one shunt fitted as a baby which took three ops and had another shunt fitted a few months ago which also took three ops. 

Name: Abby | Date: Mar 10th, 2010 5:32 PM
[email protected] is my email address if anyone would like to talk to me! thanks 

Name: SM syeda | Date: Apr 2nd, 2010 6:29 PM
I have a 8 year old daughter who had meningitis at the age of 14 days which then developed in to hydrocephalus I would like to chat to anyone who has been affected by this condition or anyone they know who has been affected please talk to me. 

Name: Laura | Date: Apr 7th, 2010 6:05 PM
my 7 1/2 month old son was born with hydrocephalus, diebetes insipidus, optic nerve dysplaisa, pitiutary dysfunction, and Cerebral atrophy.
He has had 2 surgeries to place vp shunts as the first got an infection 2 months after the first surgery and developed seizures when he was 4 months old.
He is on medications for all of this, but I guess I'd like to know what it all means for him as no one can really tell me.
The doctors dont know why this happened as I had a healthy pregnancy and he was born full term and they dont seem to be willing to tell me if he's going to be "normal",
I know he is delayed, that is to be espected as he was pretty much left alone while in hospital (thats another story all together).
He sees one doctor every 2 weeks another every 3 months and yet another one every 6 months, this does not inclued the eye doctors. He has physical therapy every week and even tho he puts his hand up to his mouth and sucks on his fingers and thumb and kicks his legs, he is not attempting to roll over at all or sit up, tho he can hold his head up for brief periods of time when held in a sitting position or placed in an infant walker.
I guess I;d like to know if anyone else has or is going thru this and how their child is doing
anyone can reach me thru my email

[email protected] 

Name: Katie Davis | Date: Apr 13th, 2010 6:10 PM
My daughter has hydrocephalus and I think has a very unique and uplifting story, I have recently started to write her story on my blog. You can check it out if you would like. She is 13 now. Her name is A vri so click on that lablehttp://ktsartofliving.blogspot.com 

Name: Bertha Dunne | Date: May 30th, 2010 10:20 PM
Hi there, I am very interested in chatting with you. I was born with hydrocephalus on May 25 1965. I would love to share my story. In 1965 there was no support or anything for my parents, or for me at all. But now I hope it is different for you. Take care hope we can chat sometime. Our e-mail address is [email protected] 

Name: Nellie | Date: Jun 30th, 2010 12:45 AM
Love it!! 

Name: chris0212 | Date: Jul 1st, 2010 3:03 AM
My daughter is three, she is on her second shunt. Got the first shunt when she was three months old. 

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