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 ↓
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| Name: lostandneedhelp | Date: Jan 22nd, 2007 7:00 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 8:43 PM |
| My 2 month old daughter was diagnosed with tsc at 6 weeks old. ↑ |
| Name: Leah | Date: Jun 10th, 2008 2:18 AM |
| I have tuberous sclerosis could I be of any help ↑ |
| Name: Dustin Calcagno | Date: Nov 25th, 2008 8:35 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 6:19 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 [email protected] ↑ |
| Name: Dustin C | Date: Dec 8th, 2008 6:22 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 [email protected]
hope to hear from you Dustin Calcagno ↑ |
| Name: Lisa | Date: Jan 17th, 2009 11:07 PM |
| Yes, I have twins, my daughter was also diagnosed with TS at birth. They are 16mos now, but it's just her that has it. I'm not a Dr. but what are you going through. Have you checked ot TS Alliance? ↑ |
| Name: Chris Keel | Date: Mar 11th, 2009 3:23 PM |
| How everyone, I was diagnosed with Tuberous Sclerosis when i was 12, if anyone wants to know more about just let me know, I would love to help ↑ |
| Name: saska | Date: Jan 28th, 2010 8:26 PM |
| I have a child with TS. He is only 3.5 mounts old. Ne started to have west syndrom and we are on sabrli. He still have spasams several times a day (10), a each spasam last 1-2 seconds. Could you share your experience about this? ↑ |
| Name: ang | Date: Feb 22nd, 2010 11:36 PM |
| is anyone out there doing the clinic trials for rapamycin and how effective is it ↑ |
| Name: angi | Date: Feb 23rd, 2010 1:06 AM |
| anyone out there that has done the clinical trials at cincinnati childrens hospital using rapamycin i would like to know the results if any please email me at [email protected] thank you ↑ |
| Name: lorraine | Date: Feb 23rd, 2010 3:40 AM |
| i am not familar with chat rooms but would like to speak with you.....my grandaughter has ts........i have heard about clinical trials for rapamycin and would like to know if you have tried this or do you have any suggestions that might help me.......this is my email [email protected] ↑ |
| Name: Jacqui | Date: Jan 26th, 2011 9:45 PM |
Hi everyone,
My brother-in-law is 25 and he has TS. he is not slow but does have some issues with social interaction. I was hoping that someone in his boat could talk to him. he gets depressed alot. Please let me know if you are interested. He is a really great guy!
Thanks, Jacqui
my email is [email protected] ↑ |
| Name: betty ochoa | Date: Feb 4th, 2011 9:14 PM |
HI IM 16 MY NAMES BETTY I WAS DIAGNOSED AT 5 WITH TUBEROUS SCLEROSIS
I HAD A BRAIN TUMOR AT 8 REMOVED . IM 1 OUT OF 6,000 PEOPLE WITH IT... IT WOULD BE NICE TO MEET SOMEONE ELSE WITH TUBEROUS SCLEROSIS SO I DONT FEEL LIKE THE ONLY ONE FROM THE REST , IT WOULD MEAN ALOT TO ME
IM FROM CA .... ↑ |
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