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TOPIC TITLE: I have a daughter with hydrocephalus
Created On 5/28/06 6:15 PM
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momto3
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5/28/06 6:15 PM
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Hi! I have a daughter who was born with hydrocephalus. She has a V/P shunt but her last shunt-related surgery was 9 years ago. My daughter is now 14 and she is in regular classes in a religious day school. I have never met another frum mom who has a similar issue. I would love to talk about school-related issues, etc.
Thanks! momto3
 
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huvmo
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7/13/06 9:08 PM
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Hi, i also have a daughter with hydrocephalus, she is now 7 1/2 years old. her last revision was 2 1/2 years ago and is also in a regular class in an orthodox school. she has had two revisions since her shunt was placed at 3 months old. how is your daughter doing medically? I would love to know your story since i have only met a few people with hydro.

 
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momto3
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7/13/06 9:42 PM
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Medically, my daughter is doing fine. Her first shunt was placed within 24 hours after birth. ( I had a c section when the doctors discovered the hydrocephalus at the time of delivery- another long story). Her first shunt block occurred when she was 9 months old- she had just had had the chicken pox so I always wondered if there was a connection between the two. Her next shunt block was at at age three, the first night of Rosh Hashana, when she woke up vomitting and crying. Realizing that it might not be a stomach virus, I drove her to the hospital. Her last shunt revision at age 5, not a true block, occurred when we did a shunt series x ray- I was scared that she was outgrowing her shunt. Well, she did not outgrow her shunt but they found it had broken in the neck area- she had no symptoms. So she had to have surgery within the week. Its now been nine years and she has had no problems with the shunt. We are very open with her about the shunt- if she has a headache I will ask her if she thinks it feels different and can be the shunt-so far its been "no" every time. Right now she is in sleep a way camp for 8 weeks- her forth summer at this regular religious camp ( the other three summers she went for 4 weeks only each time). The camp knows that she has a shunt and we do not let her sleep on top of bunk beds, do head stands and go on rides at amusement parks that are very fast (roller coasters) or turn you upside down. Other than that we are trying to let her have a normal life. In addition, she went to Israel recently with her grade and although I supplied the school with emergency phone numbers,( Which of course scared the school!) the trip was uneventful from a medical point of view. I guess the only thing I now do consciously is I always make sure that I have enough gas in my car to drive her to a hospital in the middle of the night- but lately, I have been lax about even that. Please feel free to ask me any questions- I purposely posted wondering if there were any other mothers out there like me. Thank you for responding!
 
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huvmo
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7/20/06 8:20 PM
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thank you for responding , it's good to hear about someone else in a similiar situation. It's interesting that you don't allow headstands or roller coasters, because i would agree with you , but every time I ask my surgeon that question he always says there are no restrictions for her. So i am pretty careful with her but i also try to let her be like everyone else. It's funny you mention the gas in the car thing, we all have our things, mine is to run to the doctor every time she gets a fever or headache, since it was difficult to diagnose the shunt not working in the past. Oh well, i guess i am a little neurotic, anyway it was nice to hear from you, be in touch.
 
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momto3
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7/23/07 11:59 AM
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I am sorry that it has taken me a year to get back to you. Nothing new with my daughter's shunt though-same shunt no new surgeries B"H. The restrictions we have placed on my daughter- no head stands etc were just common sense to us- no doctor ever said anything except for no tackle football. Anything that we feel is likely to cause a head injury- like soccer-we just banned ourselves. Our daughter is not particularly athletic so our restrictions on her are really viewed as pretty trivial. Also no school or camp will ever take the risk of questioning us. So we continue to do what we feel comfortable with.
I don't know about you but I am happy to see that our posts have been viewed by over 50 people- obviously there are many more people out their with similar issues. Its a shame that we live in a world where these issues have to be hush hush. I know that my daughter would love a pen pal. I hope that all is well with you and your daughter. Have an easy fast tomorrow-Tisha B'Av-( and yes, my daughter can and does fast!).Take care! Momto3
 
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momto3
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7/31/07 2:27 PM
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Hi everyone! There are obviously several people who are checking these posts probably because they know someone with hydrocehalus. I just thought that I'd mention that there is a walk-a -thone /get together for the Hydrocephalus Ass in Edison, NJ on Sunday Sept 9, 2007.
Often, these things are held on a Shabbos, but this is listed for a SUNDAY!!! I have nothing to do with planning this program etc and if there is are to be any snacks provided I would have to assume that everyone kosher should bring their own. To get more info on this, the website is ww.hydroassoc.org/TEAM.htm. I believe that this event is for everyone with hydrocephalus ( and of course their families), from all causes, not just pediatric- congenital . There are other events listed too , for other areas of the country, so if this is something you are interested in- perhaps this website will be of some help or give you a "lead". Obviously I wish you all well!
 
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momto3
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5/20/08 8:40 AM
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Since so many people seem to be viewing these posts (about 170 to date according to this website) I feel compelled to keep everyone informed. My daughter continues to do well. There is nothing new medically, no siezures, shunt blocks etc. and my daughter seems like a regular girl to everyone who knows her. (Few people know her background since we do not live in the same community as when she was born- not that we try to always hide the fact that she has a shunt). School wise , things are harder for her- math and science do not come easily and we have to help her with homework. We went to Israel this past winter without incident (no, this was not my daughter's first time).Once again there is going to be a hydrocephalus walk on a Sunday in Edison NJ- I think September 7, 2008. It was really nice for my daughter to meet other kids with hydrocephalus last year. Anyway, I thought I would update you folks, because many people only post on websites etc about crisis with shunts etc. but B"H our lives are really pretty uneventful even though my daughter has a shunt. Once again, I wish you all well!
 
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mercaz
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7/7/09 6:20 PM
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I am 24 years old and have had hydrocephalus since birth. My first shunt (VP) was placed at 9 wks. Replaced at 6 yrs bec of lengthening issues, then a series of replacements at 14 yrs due to multiple infections. B"H (I'm so grateful) things have been fine since then. I'm b'h married to a wonderful man, with two beautiful healthy children, and I've graduated college.
Be'h your children should be healthy and be able to lead wonderful normal lives.
 
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momto3
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1/6/10 10:41 AM
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Mercaz, I am so glad that you wrote- and sorry that I did not respond until today- I haven't been on this site for months...Can I ask you if you had issues with math and science? Can I ask you what college you went to- or really, if you know of a college that might be good for my daughter? ( Because of the math issues, her SAT scores were low) We live in NJ so a NY or NJ college would probably be doable. Also, I hope that you don't mind my asking- did you have any issues with your shunt during your two pregnancies?
Please fill me in with whatever details you'd like to share. Thank you so much for writing!
 
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mercaz
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1/9/10 9:14 PM
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Hi. Wow I randomly checked this site and found your post from only 3 days ago. That's hashgacha if I ever saw. I don't have a lot of issues with math and science. I always hated math, but I did okay in it. As far as science- I'm actually a nurse, so that was actually something I've been very interested in. I went to a regular nursing school which I prefer not to name for privacy purposes. What is your daughter interested in studying? Nursing happens to have very little math involved, which, I always joke, is why I went into it in the first place.
 
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momto3
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10/18/11 8:05 AM
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Update: My daughter is no longer a teenager- she is a young adult. She had her first shunt placed within 24 hours of her birth because of congenital maximum pressure hydrocephalus and has had 2 shunt blocks and one shunt revision by age 5 (or 6). She has not had another shunt problem for the last 15 or so years! I thought when she was born that I would have a child who was constantly sick, but , thank G-d, she has no other health problems, except the normal colds etc. We visit the neurosurgeon's office every 2 years to "stay in touch", but there is nothing remarkable about the visit.
After high school, my daughter did go to Israel for the year and she gained a lot from it. ( We sent her with a copy of her x rays just in case- although the films were taken so long ago that they might have been worthless). My daughter is now in college. She seems to do much better with the social sciences , so she will be majoring in that. The only area where she seems to lag is in performance areas ( I don't know what else to call it). For example, cooking and other skills that require "doing". For example, it is difficult for her to use a can opener- However, she can make her own meals, if they are simple- egg salad sandwich etc. So no, nursing is not an option for her.
So if you met my daughter, you would never realize that she was born with hydrocephalus and was only given a 50-50 chance of being "normal"...

I hope this update helps anyone who is facing the diagnosis of a child ( or fetus) with hydrocephalus...

 
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channafofanna
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10/18/11 11:30 PM
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Thats so good!! may you have and continue to have much nachas from her
 
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