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KartveliT
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Member since 1/08 8363 total posts
Name:
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Re: So upset - DS diagnosed with hydrocephalus
Posted by mrsej
thanks - I just can't believe it came back positive - i am in total shock. The dr. really calmed me down, but now I am completely freaked out by what I read on the internet. The thought of surgery and a shunt is making me sick.
I am so sorry . It will be fine, I knew someone whose child had the same thing , it was a long time ago so I do not remember details , but I also know that the child is doing FINE. Do not go on the internet. I was diagnosed with a heart condition after I had DD and asa the cardiologist gave me results he said DO NOT look on the internet. I did look and almost had a heart attack after reading all the scary things. I have had many, many opinions since than and realized that you can't believe everything you find on the internet. I would listen to your ped and maybe even get a 2nd opinion. Good luck and try not to stress, that won't help. you need to stay strong and figure out what to do next.
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Posted 2/13/09 8:47 AM  |
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BMonster
:)
Member since 2/06 2959 total posts
Name:
Denise
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Re: So upset - DS diagnosed with hydrocephalus
I will pray that your son will be just fine and not need surgery  
BUT I just wanted to let you know that if he does have hydrocephalus, it's not the end of the world. My son does have hydrocephalus, but it's genetic and very severe. For your son there is such a high chance that everything would be fine, he would just have a shunt to help him regulate his own brain fluid. There are many many people that grow up to be perfectly fine, they just happen to have a shunt.
I know how scary this all is I just wanted to let you know that if it does turn out to be hydro, with the proper Drs (On LI, Dr Schneider or Dr Mittler are THE neurosurgeons you want), your son will be just fine Please feel free to FM me if you want to talk about it. I can also put you in contact with more people that have been through it.
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| Posted 2/13/09 8:48 AM |
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2BEANS
wow time is going fast.
Member since 9/07 16106 total posts
Name:
Tina
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Re: So upset - DS diagnosed with hydrocephalus
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| Posted 2/13/09 9:04 AM |
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Tine73
Member since 3/06 22093 total posts
Name:
*********
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Re: So upset - DS diagnosed with hydrocephalus
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| Posted 2/13/09 9:12 AM |
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maybebaby
LIF Adult
Member since 11/05 6870 total posts
Name:
Maureen
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Re: So upset - DS diagnosed with hydrocephalus
I am sending you lots of hugs...as I know what its like to find out something is wrong with your child, no matter what it may be. I am sure everything will be ok...hang in there...
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| Posted 2/13/09 9:18 AM |
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chikita315
Love
Member since 8/06 7945 total posts
Name:
M-lo
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Re: So upset - DS diagnosed with hydrocephalus
Many
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| Posted 2/13/09 9:19 AM |
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Ang-Rich
Beyond Compare
Member since 5/05 17988 total posts
Name:
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Re: So upset - DS diagnosed with hydrocephalus
I would be a complete hypocrite to tell you to stay off the internet because that is where I tend to run first...but you know that there is an overload of information. It's so easy to find the most severe scenarios meanwhile that is not the case for your son. He's going to be okay and so are you Definitely make sure that all of your questions along the way are answered to your satisifaction and seek out the positive outcomes - those stories will carry you through those moments of worry.
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| Posted 2/13/09 9:19 AM |
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reggie
I love my boys!!
Member since 5/05 8044 total posts
Name:
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Re: So upset - DS diagnosed with hydrocephalus
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| Posted 2/13/09 9:28 AM |
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DC HJJ M
Member since 8/07 3732 total posts
Name:
Crystal
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Re: So upset - DS diagnosed with hydrocephalus
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| Posted 2/13/09 9:29 AM |
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dooodles
When you wish upon a star
Member since 5/05 11997 total posts
Name:
Because 2 people fell in love
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Re: So upset - DS diagnosed with hydrocephalus
Bmonster is going to be my suggestion to FM for any questions you may have, doctor recommendations or someone to ease your mind
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| Posted 2/13/09 9:33 AM |
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Kidsaplenty
Sister love
Member since 2/06 5971 total posts
Name:
Stephanie
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Re: So upset - DS diagnosed with hydrocephalus
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| Posted 2/13/09 9:37 AM |
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nferrandi
too excited for words
Member since 10/05 18538 total posts
Name:
Nicole
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Re: So upset - DS diagnosed with hydrocephalus
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| Posted 2/13/09 9:39 AM |
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Re: So upset - DS diagnosed with hydrocephalus
Posted by BMonster
I just wanted to let you know that if it does turn out to be hydro, with the proper Drs (On LI, Dr Schneider or Dr Mittler are THE neurosurgeons you want),
Just wanted to echo this...
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| Posted 2/13/09 10:19 AM |
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Jazzyt
My Girl!!!
Member since 8/07 2977 total posts
Name:
Giselle
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Re: So upset - DS diagnosed with hydrocephalus
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| Posted 2/13/09 10:49 AM |
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MrsS2005
Mom of 3
Member since 11/05 13118 total posts
Name:
B
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Re: So upset - DS diagnosed with hydrocephalus
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| Posted 2/13/09 11:58 AM |
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MommyTeffi
Yummy!!!
Member since 2/06 1827 total posts
Name:
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Re: So upset - DS diagnosed with hydrocephalus
Hope everything works out.
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| Posted 2/13/09 12:00 PM |
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Superkat
More a stranger than a friend
Member since 5/06 9730 total posts
Name:
K
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Re: So upset - DS diagnosed with hydrocephalus
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| Posted 2/13/09 12:01 PM |
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NiyNiy
LIF Infant
Member since 6/06 318 total posts
Name:
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Re: So upset - DS diagnosed with hydrocephalus
I'm so sorry to hear that. Many for you & your family.
My niece was diagnosed at 6 weeks old and she had the surgery to put a shunt that goes from her head to her belly. SHe is now 7 years old and is completely fine. She had a revision 2 years ago bc the original shunt became blocked.
Its tough bc you dont want to see your baby go through that but know that it is for the better that he get the surgery. He will be great afterward. I will have you all in my prayers.
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| Posted 2/13/09 12:18 PM |
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mrsej
The cutest!
Member since 1/07 2495 total posts
Name:
Mommy
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Re: So upset - DS diagnosed with hydrocephalus
Thank you all - I finally got an appointment - for the 25th - these appointments are so hard to get! I was told not until March or May! I just want to know what is causing it and what is going to be done and that can't be determined until we see the specialist so all of these horrible thoughts are going through my mind. This is going to be a rough 10 days.
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| Posted 2/13/09 12:38 PM |
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EmmaNick
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Member since 12/06 16001 total posts
Name:
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Re: So upset - DS diagnosed with hydrocephalus
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| Posted 2/13/09 12:40 PM |
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lvdolphins
My Loves!
Member since 5/05 46292 total posts
Name:
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Re: So upset - DS diagnosed with hydrocephalus
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| Posted 2/13/09 12:41 PM |
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headoverheels
s'il vous plaît
Member since 6/07 42079 total posts
Name:
LB
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Re: So upset - DS diagnosed with hydrocephalus
i am sorry i have no experience with this but i am sure he will be fine
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| Posted 2/13/09 12:46 PM |
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mtnmama
Member since 5/06 4794 total posts
Name:
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Re: So upset - DS diagnosed with hydrocephalus
Thank God they have found it early
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| Posted 2/13/09 12:47 PM |
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mamaesq
LIF Infant
Member since 9/08 91 total posts
Name:
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Re: So upset - DS diagnosed with hydrocephalus
Hi i know its hard but I actually had a preemie 2 weeks ago and she had a shunt put in yesterday at 2 weeks old. Its a temporary one and they then determine if she will need a new one. She had some swelling b/c of being a preemie. I was scared to death too but after the surgery and seeing how she was FINE and talking to an amazing neurosurgeon I feel much better. The Dr. told me kids with shunts leave totally normal lives and can do EVERYTHING that kids without them can do. Yeah, its something you will always be concious of as the parent but as long as she can be normal Im okay with that....good luck and I totally understand the fear....FM if you need anything....
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| Posted 2/13/09 3:45 PM |
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Re: So upset - DS diagnosed with hydrocephalus
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| Posted 2/13/09 4:51 PM |
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