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left frontal lobe removal?

DaytonsMom10

Miami TS clinic

photomom
  • By photomom · New reply yesterday at 2:08 pm
  • Discussion in Surgeries, medications and treatments · 3 replies
  • Hello. Just curious about your thoughts on the TS clinic in Miami. We usually go to see Dr. Franz in Cinci but we are moving to Florida and the Miami clinic will only be 2 hours from us. All input welcome ...

Sleeping Problem

must
  • By must · Posted yesterday at 8:34 am
  • Discussion in Parents, grandparents and caregivers of children with TSC · 0 replies
  • Hi all, My son Muhsin 7yrs old has sleeping disorder.Last week, he doesn't sleep continous 3 days on day and night.I don't know what happen to him.he was fully active those days and he don't want foods ...

Topical Rapamycin use in Canada

Gould
  • By Gould · New reply May 19, 2012
  • Discussion in Parents, grandparents and caregivers of children with TSC · 27 replies
  • I am looking for any information on Topical Rapamycin use in Canada - even better Ontario. Is there anyone who has a Doctor and pharmacist who is willing to try it? My daughter had laser surgery by Dr ...

Heart Issues

JermsJenn83
  • By JermsJenn83 · New reply May 19, 2012
  • Discussion in Adults with TSC · 3 replies
  • I've been experiencing rapid heart beat and when this happens I get really dizzy and almost pass out. It's also difficult to breath. It takes a while for me to feel right after one of these episodes ...

Michigan Neurologists

ib6mom
  • By ib6mom · New reply May 19, 2012
  • Discussion in Teens with TSC · 3 replies
  • Good morning, I am wondering if there are any TSC families who have had good to great experiences with a Michigan neurologist besides (or outside of) the Detroit Children's Hospital TSC clinic? I have ...

Sleep issue looking up!!!

Daddyoftwo

Random pains

Cassysmom
  • By Cassysmom · Posted May 17, 2012
  • Discussion in Features and symptoms · 0 replies
  • Hi...I saw someone was asking about arm pain and brain tumors and it reminded me I wanted to ask a similar question. For several years, our 14yod with TSC has occasionally complained of random pains--they ...

Mri frequency

Simb

Thinking about Having Children - 1 parent with TSC

SolviturAmbulando
  • By SolviturAmbulando · New reply May 17, 2012
  • Discussion in Genetic issues · 13 replies
  • My husband has been diagnosed with TSC at the clinic in Cinci. He has had a blood test to map the mutation, but his case is so mild that he is part of the 20% that cannot be mapped. Without this map it ...

Michigan Neurologists

ib6mom
  • By ib6mom · Posted May 17, 2012
  • Discussion in Parents, grandparents and caregivers of children with TSC · 0 replies
  • Good morning, I am wondering if there are any TSC families who have had good to great experiences with a Michigan neurologist besides (or outside of) the Detroit Children's Hospital TSC clinic? I have ...

Tsc and sexual awake in children

Simb
  • By Simb · New reply May 17, 2012
  • Discussion in Parents, grandparents and caregivers of children with TSC · 3 replies
  • Hi, well this is a "light" topic for discussion. My 2 year old girl loves to rub herself on the table's foot giving herself a great pleasure several times a day. She wont stop even If we say we are leaving ...

Wanted to share Riley's Art for a Cure entry

photomom
  • By photomom · New reply May 16, 2012
  • Discussion in Parents, grandparents and caregivers of children with TSC · 7 replies
  • Hi, this is my son Riley and his entry for the Art for a Cure contest. He is very proud of his video and his artwork. Riley had brain surgery last year in Cincinnati and we just found out he has 2 growing ...

diagnosed with tsc at 5 months on 12.25.11

Jen2011
  • By Jen2011 · New reply May 16, 2012
  • Journal · 2 replies
  • Cole was 5 months old when he was diagnosed with tsc with tubers in his brain, and was having infantile spasms, he has been on sabril since, end of March he started to do seizure like activity but after ...

Arachnoid cyst causing behavior issues?

karelle11
  • By karelle11 · New reply May 16, 2012
  • Discussion in Parents, grandparents and caregivers of children with TSC · 2 replies
  • We just got the results from my son's latest MRI, and I saw something on there that I'd never noticed before (though looking at the last two, were written there in the report), and certainly was never ...

been think about TS Walk on Sept 15th in Long Island

MrMidnightBlue118
  • By MrMidnightBlue118 · New reply May 16, 2012
  • Discussion in Genetic issues · 2 replies
  • been think about going to TS Walk on Sept 15th in Wantagh New York i heard about that but i do live in Long Island all of my life but i never went to walk but i live in staten island but i would try go ...

topical rapamycin and skin irritation

tormom
  • By tormom · New reply May 16, 2012
  • Discussion in Surgeries, medications and treatments · 5 replies
  • Hi everyone - my daughter has been using the .2 % topical rapamycin since September. Over the last few months I see that she is getting a rash on her skin, without any changes to the base etc.. Has anyone ...

Looking to connect with people in Pittsburgh

photomatt

Liver

DillysMommy

any TSC

MrMidnightBlue118
  • By MrMidnightBlue118 · Posted May 15, 2012
  • Discussion in Genetic issues · 0 replies
  • any TSC people who have Facebook or Twitter or have Gmail or Foursquare for traveling lol just kidding anyway you can talk to me or Facebook to me or tweet (follow me) i would love chat with that because ...

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TS Alliance links and resources

tsalliance: MAY IS NATIONAL #TSC AWARENESS MONTH. TODAY'S FACT: If a parent is affected, his/her children have a 50% chance of inheriting the TSC gene.

tsalliance: TS Alliance CSO Dr. Steve Roberds' interview about National #TSC Awareness Month: http://t.co/NYLcRrgL #raredisease #specialneeds #autism

tsalliance: MAY IS NATIONAL #TSC AWARENESS MONTH. TODAY'S FACT: A child is born with tuberous sclerosis complex every 20 minutes. #raredisease

tsalliance: MAY IS NATIONAL #TSC AWARENESS MONTH. TODAY'S FACT: Tuberous sclerosis complex shows no gender bias & occurs in all races and ethnic groups.

tsalliance: My Word: Trying to raise some big-time awareness about little-known disease - Inside Bay Area http://t.co/BMmoeYv2 #tsc #raredisease

A personal message from Julianne Moore

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About this community

The Tuberous Sclerosis Alliance Support Community connects everyone affected by tuberous sclerosis complex for support and inspiration. This community is sponsored by the Tuberous Sclerosis Alliance, an Inspire trusted partner.