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TSC Clinic Cincinnatti Childrens Hospital
- By keniwat · New reply 1:59 pm
- Discussion in Adults with TSC · 2 replies
- I was just curious if anyone knew how long of a process it was to get in for an appointment at Cincinnatti Childrens? I am thinking about pursuing a good checkup for my daughter and myself there, We are ...
Afinitor and Prozac Interactions
- By gotespresso · New reply 10:24 am
- Discussion in Parents, grandparents and caregivers of children with TSC · 1 reply
- Does anyone have experience with taking Afinitor and Prozac together? or even the two with additional seizure meds? My daughter is taking a combination of these and is getting a mixed reaction. The positive ...
Sabril (vigabrin)
- By dollymada · New reply yesterday at 5:45 pm
- Discussion in Surgeries, medications and treatments · 19 replies
- Could anyone advise me about vigabrin ??? I am supposed to start my 3 year old son David on it but I am very scared about side effects , we ve. Been on Depakine for a year now and also trayed keppra ...
Pancreas involvement with TSC?
- By Daniels · New reply yesterday at 2:12 pm
- Discussion in Parents, grandparents and caregivers of children with TSC · 3 replies
- I am the mother of a 26 year old son with Tuberous Sclerosis. At 10 months of age he started having Infantile Spasms, and at 14 months was diagnosed with Tuberous Sclerosis. He has seizures, but has been ...
New Symptoms?
- By jlaursen · New reply yesterday at 2:06 pm
- Discussion in Adults with TSC · 3 replies
- Hello Everyone, This is my first time posting to this site, so, please bare with me. Some of you may recognize me from Facebook, but for those of you that don't know anything about my situation, I'm a ...
TSC & randomly falling down
- By Dad-of-Kai · New reply yesterday at 10:03 am
- Discussion in Parents, grandparents and caregivers of children with TSC · 9 replies
- Kai is now 3 and we've seen an uptick in him randomly falling down. At first we ascribed it to him running, or tripping over himself, or that he's getting bigger quickly and not yet adjusted to his new ...
NYU clinic info needed
- By ashley1983 · New reply yesterday at 9:39 am
- Discussion in Surgeries, medications and treatments · 8 replies
- Hi can anyone provide with me info for NYU clinic? which neurologist and surgeon are you recommending there? Any experience sharing would be very helpful thx ...
HELP ME UNDERSTAND
- By SLEEPLESS2 · New reply May 20, 2013
- Discussion in New to TSC and need help · 35 replies
- Hello, i just terminated a pregnancy at 22 weeks april 5 2013 from my baby boy having multiple rhabdomyoma tumors.....which leads to TS...my husband and i are very uneducated about this disease.....and ...
bi-polar
- By gmansmom · New reply May 20, 2013
- Discussion in Parents, grandparents and caregivers of children with TSC · 5 replies
- Does anyone have a child with TSC that deals with bipolar? My son who is 11 will be having a meltdown one second and the next second he is fine. If soo, what medications has your child been on? Thanks ...
TS WALK 2013
- By raider · Posted May 20, 2013
- Discussion in Announcements · 0 replies
- Hi there - just wanted to say a quick HI and hope that you enjoyed the walk yesterday. WOW - lots of walkers and newcomers. We are so not alone and we see that every year. Barb ...
Sabril side effects?... Shocking!
- By Parul_Vipparthi · New reply May 19, 2013
- Journal · 7 replies
- I am very much aware of the side effects of this drug but never thought she might have any issues because she is on this drug all her life and it helped her. She had breakthrough seizures in january and ...
Update on ultrasound
- By peanutsmama · New reply May 19, 2013
- Discussion in New to TSC and need help · 8 replies
- Sooo I had my appointment with the pediatric cardiologist today. According to her, the white spots are not tumors but instead calcium deposits. She said she only saw one, not two. Why the maternal fetal ...
Kidney angiomyolipomas
- By zsmom · New reply May 19, 2013
- Journal · 15 replies
- My son Zach has (2) large tumors on his kidneys; both > 4cm. He has now been referred to a hospital for possible embolization. Does anyone have a child that has undergone this procedure? If so, were the ...
Five million
- By Brian · New reply May 18, 2013
- Journal · 205 replies
- Dear members, Yesterday, Inspire reached a milestone: five million posts written by members! Each of these posts, and the 700 million words they contain, are a simple measure of how much we all do to ...
Health Insurance Exchange Coming to SC!
- By captainhook · Posted May 17, 2013
- Discussion in Announcements · 0 replies
- Health Insurance Exchange Coming to SC! Beginning in October 2013, the Affordable Care Act Health Insurance Exchange will be offered in South Carolina. Family Connection wants to help you prepare for ...
I'm worried...
- By jlaursen · New reply May 17, 2013
- Journal · 4 replies
- Today is May 16th, 2013. I have all my surgeries/tests/scans scheduled and they are all starting to come up... I am so nervous about my AML removal it's making me stress so much I'm getting sick... I ...
Angiofibromas Cream in Europe
- By Colombus · New reply May 17, 2013
- Discussion in Parents, grandparents and caregivers of children with TSC · 18 replies
- I am the dad of a girl of 7 years old with TSC, I am wondering if anybody in Europe (I am based in France but UK is fine as well) buying or having this cream prepared. I am not sure how I should ask this ...
Sibling Chats
- By captainhook · Posted May 16, 2013
- Discussion in Announcements · 0 replies
- Due to the lack of participation in our Sibling Chats we will be discontinuing them. There has been a facebook page developed for siblings that we think will better support siblings. To join the siblings ...
IN Public Health Insurance Training
- By captainhook · Posted May 16, 2013
- Discussion in Announcements · 0 replies
- Public Health Insurance: What You Don't Know Can Cost You When – June 13, 2013 10:00 a.m. to 3:00 p.m. Location: Wabash Center 2000 Greenbush Street Lafayette, IN 47903 Cost: $40 - Family Member $75 ...
Rapamune Question
- By gmansmom · New reply May 15, 2013
- Discussion in Parents, grandparents and caregivers of children with TSC · 1 reply
- Hello. My son is 11 with TS. I have seen post about the Rapamune medicine. I have seen where it is used for the face and also to help with aggression. Is that correct or am I reading the posts wrong ...
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