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is this TSC related?

Gingerc
  • By Gingerc · New reply March 8, 2014
  • Discussion in New to TSC and need help · 5 replies
  • This might be a dumb question, but my son (5.5) has recently started having a lot of pee accidents. He was the easiest of my 3 kids to potty train and has always been really good. We don't want to come ...

Dental Advice

TeamAnabelle
  • By TeamAnabelle · New reply March 7, 2014
  • Discussion in Surgeries, medications and treatments · 1 reply
  • I've been to several dentist to have her teeth taken care of shes been on several medications that have taken a toll on her enamel. Most want to put her under but this is something I really don't want ...

Tantrums

KAnne1
  • By KAnne1 · New reply March 7, 2014
  • Discussion in Parents, grandparents and caregivers of children with TSC · 1 reply
  • Hi, My son was diagnosed before birth with TS. He hasn't had any seizures and appears to be on track developmentally for his age (3). Recently however he has started to have unbelievable tantrums to the ...

TS ALLIANCE NAMES 2013 VOLUNTEERS AND COMMUNITY ALLIANCE OF THE YEAR!

jisham
  • By jisham · Posted March 7, 2014
  • Discussion in Announcements · 0 replies
  • Last night, March 6, the TS Alliance held out annual Volunteer Appreciation Dinner in Washington, DC. During the event, we named the 2013 Volunteers of Year: Melanie Vogel, Robin Fancher, Becky Gaunt ...

1st eye exam

kendralaporte
  • By kendralaporte · New reply March 6, 2014
  • Journal · 1 reply
  • Bishop had his first eye checkup since we were told he has TS. He was a trooper and did so well with all the eye drops. So far he was the youngest patient in that office to have his eyes dilated and this ...

Adults with TSC

raanilg
  • By raanilg · New reply March 6, 2014
  • Discussion in Adults with TSC · 5 replies
  • Hi! My son is 24 and is verbal, with mild autistic symptoms, cognitive disability and epilepsy, (which is almost controlled). He was a chirpy, smiling, talkative young person, but has changed a lot in ...

SEGA & Surgery

KazJ
  • By KazJ · New reply March 5, 2014
  • Discussion in Features and symptoms · 4 replies
  • Hi, my son Aidan is 6 1/2 years old he was diagnosed with TS while I was still pregnant. He has had a left temporal lobectomy and sub total left frontal lobectomy due to intractable seizures. Unfortunately ...

Happy Monday To ALL my Friends Here!!

3boyzmommie
  • By 3boyzmommie · New reply March 4, 2014
  • Discussion in Adults with TSC · 2 replies
  • I just wanted to let all the amazing people i have met on here how much i appreciate and value each and every one of you!! I dont think I could have asked for more patient, loving, and understanding ...

Does anyone know the chances of getting Social Security With Having TSC?

Jessi_LiveLove
  • By Jessi_LiveLove · New reply March 3, 2014
  • Discussion in Adults with TSC · 8 replies
  • Hello Im applying for Social Security Disability for the forth or fifth time for Disability or SSI. I Have TSC,Forhead Plague, the facial stuff, shagreen patch, confetti lesions, inactive pacemaker, just ...

States/Regions with best care?

Ashers_Parents

Hemp Seeds, Chia seeds, fish oil & Omega's

Lantay
  • By Lantay · New reply March 2, 2014
  • Discussion in Surgeries, medications and treatments · 14 replies
  • I was wondering about Omega 3 & 6's. I have read remarkable things about fish oil & the brain. I am very doubtful of getting it in my 8 yr old with TSC. She doesn't swallow pills & fish oil can have a ...

when SEGA blocks cerebral fluid

dawnydoony

A CLINICAL TRIAL FOR CHILDREN WITH SLEEP ISSUES

TSCclinicliaison
  • By TSCclinicliaison · Posted March 1, 2014
  • Discussion in Announcements · 0 replies
  • Study Title: A randomized, placebo-controlled study to investigate the efficacy and safety of Circadin® to alleviate sleep disturbances in children with neurodevelopmental disabilities Study Site: Kennedy ...

Reaching out to Idaho and Montana TSC Families

Kenash
  • By Kenash · New reply February 28, 2014
  • Discussion in Parents, grandparents and caregivers of children with TSC · 6 replies
  • I am headed to Washington DC next week for the March on Capitol Hill and I will be representing TSC families from Utah, Idaho, and Montana. I am in need of some letters/ pictures of some families from ...

Just after some help & information about having a baby when I have TSc

Tia29
  • By Tia29 · New reply February 28, 2014
  • Discussion in Adults with TSC · 7 replies
  • I was diagnosed at 23 with having TS and have married since. I want to start a family and have spoken to a specialist which left me a little disheartened and confused. I don't know much except there are ...

Feb 28th Global Rare Disease Day

StickyNote
  • By StickyNote · New reply February 28, 2014
  • Discussion in Parents, grandparents and caregivers of children with TSC · 2 replies
  • February 28th is Global Rare Disease Day. Haven't seen anything about it on here. Just letting everyone know so he/she can do something special for our loved ones who have this and any other rare disease ...

Vaccinations

EmAU08
  • By EmAU08 · New reply February 28, 2014
  • Discussion in New to TSC and need help · 11 replies
  • Hi, I'm 35 weeks pregnant and my unborn son has been diagnosed as having a "likely rhabdomyoma" at 28 weeks. After doing lots of research, I think my 4 1/2 year old may have TSC and possibly my husband ...

ADD and TS Kids

Chinamama
  • By Chinamama · New reply February 28, 2014
  • Discussion in Parents, grandparents and caregivers of children with TSC · 4 replies
  • My 7 year old daughter is scheduled to be evaluated for ADD in a few months and I'm wondering about the helpfulness of various meds used with ADD. I have found out in the non-TS affected world there is ...

1yr checkup

Ashers_Parents
  • By Ashers_Parents · New reply February 28, 2014
  • Journal · 1 reply
  • March 3rd we travel to Children's Memorial Hermann and UT Physicians for our second check up since resection was done. It will be around 16 months since surgery and no seizures that we can tell. Intellectually ...

Today is RARE DISEASE DAY!

jisham
  • By jisham · Posted February 28, 2014
  • Discussion in Announcements · 0 replies
  • Today is Rare Disease Day! Tuberous sclerosis complex (TSC) is one of approximately 6,800 identified rare diseases. Affecting around 50,000 in the United States and 1 million or more worldwide, TSC is ...

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