The Tuberous Sclerosis Alliance Support Community connects everyone affected by tuberous sclerosis complex for support and inspiration... More about this group

White Spots... So confused!!!

Merlin1972
  • By Merlin1972 · New reply 2:39 pm
  • Discussion in Features and symptoms · 8 replies
  • Hello from Spain: My daughter Sandra has a hipomelanotic macule in his stomach what could be like a ash leaf mark, more or less. (About 3 cm. in size) She has it since she was born or shortly after. Also ...

Afinitor early side effects

jlorvick
  • By jlorvick · New reply yesterday at 10:50 pm
  • Discussion in Surgeries, medications and treatments · 10 replies
  • My daughter started Afinitor about two weeks ago. She has sores in her mouth which are bothering her quite a bit and interfering with healthy eating. We are using Carafate rinse. In addition, she just ...

Almost 3 y/o appears to have ADHD

Mason611
  • By Mason611 · New reply yesterday at 10:36 pm
  • Discussion in Parents, grandparents and caregivers of children with TSC · 8 replies
  • Hello. My son will be 3 in June and was diagnosed with TSC at about a year and a half old. He's currently off meds and seizure free for over a year now (Praise God!), and I pray it stays that way, however ...

We Need Help

TyedyedChick
  • By TyedyedChick · New reply yesterday at 10:12 am
  • Discussion in Surgeries, medications and treatments · 3 replies
  • My daughter has been in Ridegview and Laurel Heights here in Atlanta on and off since January. She is being released from Laurel Heights this week and we have NO idea where to go from here. The psychiatrist ...

Kidneys

patruska
  • By patruska · New reply April 18, 2014
  • Discussion in Features and symptoms · 9 replies
  • I need any suggestions. In the previous years my son's kidneys reports was always stating multiple angiomyalapoma and PKD. The biggest angio.... Was around 9mm (that was results from ultrasound) . Now ...

UT Educational Advocacy Trainings

captainhook
  • By captainhook · Posted April 16, 2014
  • Discussion in Announcements · 0 replies
  • Upcoming Events May 2014 Conference: Ogden Transition Mini-ConferenceThe transition to adult life can leave you feeling you are “NO Where” – totally lost! Get to “KNOW Where” by learning about planning ...

Digestion issues? TSC related?

pal2012
  • By pal2012 · New reply April 16, 2014
  • Discussion in Features and symptoms · 2 replies
  • My toddler seems to have chronic issues with diarhea , sometimes mild , sometimes quite bad but seemingly endless. She has also been sick a lot in the last 4 months so it has been attributed to antibiotics ...

PGD for TS

Sweetbebs
  • By Sweetbebs · New reply April 16, 2014
  • Discussion in Genetic issues · 9 replies
  • Hi, Anyone had or having PGD to test for TS? Thanks ...

living with TSC and schizophrenia

c00lbeagle77
  • By c00lbeagle77 · New reply April 15, 2014
  • Journal · 8 replies
  • Hello everybody my name is Becky and I am going to be 37 in a couple of months. I was diagnosed with TSC when I was 4yrs old. Eight years after that I began seeing and hearing things but I had no clue ...

TS and Liver Manifestation

shaseiful
  • By shaseiful · New reply April 15, 2014
  • Discussion in Features and symptoms · 4 replies
  • I have an 11 year old daughter who was just diagnost with Hepatic cysts and hepatic AML's. She has been having a number of stomach issues. I am wondering if anyone here knows what the symptoms are ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

IN Educational Advocacy Training

captainhook
  • By captainhook · Posted April 15, 2014
  • Discussion in Announcements · 0 replies
  • Roadmap to Special Education: Laws and Process This workshop, combining the Article 7 and IEP training, is all day training that offers basic information about special education laws and regulations for ...

CT Educational Advocacy Trainings & Webinars

captainhook
  • By captainhook · Posted April 15, 2014
  • Discussion in Announcements · 0 replies
  • April 29, 2014 Coping with Feeding Challenges in Children with Special Needs Danbury, CT On Tuesday, April 29, 2014, the Greater Danbury Child and Family Network, a Local Interagency Coordinating Council ...

TN Educational Advocacy Trainings

captainhook
  • By captainhook · Posted April 14, 2014
  • Discussion in Announcements · 0 replies
  • Mon 4/14/2014 With Hope in Mind© - A FREE Series of Classes City: Hendersonville County: Sumner Location: Trinity Baptist Church, 840 Forest Retreat Road Time(s): 6:30 PM - 9:00 PM CT Calendar:Other Agency ...

2014 WORLD TSC CONFERENCE - REDUCED EARLY REGISTRATION RATES END APRIL 30!

jisham
  • By jisham · Posted April 14, 2014
  • Discussion in Announcements · 0 replies
  • 2014 WORLD TSC CONFERENCE - REDUCED EARLY REGISTRATION RATES END APRIL 30! The registration fee includes all conference sessions, meals for adults and evening activities/entertainment. Day Camps available ...

MA Educational Advocacy Trainings

captainhook
  • By captainhook · Posted April 14, 2014
  • Discussion in Announcements · 0 replies
  • May 2014 5/1 Lexington, Effective Communication, Lexington High School, Room 147, 251 Waltham Street, 6:30-8:30pm 5/6 Weston, An IEP for My Child, Location: TBD from 9am-11am 5/14 Framingham, Turning ...

Child's focus and TSC - question

StickyNote

Chiari Malformation with TS

jeanalinette
  • By jeanalinette · New reply April 14, 2014
  • Discussion in Siblings of people with TSC · 1 reply
  • Hi, my son has been diagnosed with TS. Though my daughter has had some issues that cause doctors to suspect she might also have TS, her MRI was free of tubers. She was found to have a Chiari malformation ...

Vitamins for parents

gmansmom

No TSC2 mutation

jeanalinette
  • By jeanalinette · New reply April 11, 2014
  • Discussion in Genetic issues · 4 replies
  • My son was tested through Prevention Genetics for the TSC2 mutation. There was no mutation of this gene. The next round will look for the presence of the TSC1 mutation. What happens if they find no TSC1 ...

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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.