Chat Room: Tuberous Sclerosis

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Name: lostandneedhelp

[ Original Post ]

My daughter who is now 3 was diagnosed with Tuberous Sclerosis at birth. Does anyone out there have a child with this disease?? I need someone to talk to and some help.

Thanks ↓

Name: lostandneedhelp | Date: Jan 22nd, 2007 2:00 PM

I do. My daughter is also 3. She was diagnosed before she left the hospital. I too need someone to talk to. I may have some advice, but I also need some help. ↑

Name: Rosie | Date: Sep 28th, 2007 4:43 PM

My 2 month old daughter was diagnosed with tsc at 6 weeks old. ↑

Name: Leah | Date: Jun 9th, 2008 10:18 PM

I have tuberous sclerosis could I be of any help ↑

Name: Dustin Calcagno | Date: Nov 25th, 2008 3:35 PM

My daughter has tuberous sclerosis
T.S.C.#1 i would like to chat with someone going thruogh the same things that my wife and i are. go to my epilepsy chat room thats where i hang out ↑

Name: tiffany | Date: Dec 4th, 2008 1:19 AM

yes may now 6 month old baby girl has tsc we found out about a week after halloween my husbands mom said she was first she had white patchy spots and her dr said it was sensitive skin then after halloween she started having seziers they put her on topamax then about a month later she started having infantile spasams i worry about her alot and wounder how its going to effect her when she gets older we have so many prayers going out for her its hard to believe that so many other moms like me have to go through the samething age 19 from cullman alabama email is tiffanycurrington@att.net ↑

Name: Dustin C | Date: Dec 8th, 2008 1:22 AM

My daughter has T.S.C. #1 She is 19 mos old. she was diagnosed at 1 1/2 mos old .
if you want to chat with me and we can pool our knowledge that would be great. you can email me at dustycalcagno@comcast.net
hope to hear from you Dustin Calcagno ↑