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

Low Tone

awasserman
  • By awasserman · New reply 12:18 am
  • Discussion in Features and symptoms · 4 replies
  • Just wondering if anyone's child affected with TS has/had low tone as a baby. Our 4 month old son is pretty floppy and is not even attempting to raise his head off the floor. It really seems like his ...

Afinitor early side effects

jlorvick
  • By jlorvick · New reply yesterday at 8:41 pm
  • Discussion in Surgeries, medications and treatments · 13 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 ...

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

jisham
  • By jisham · New reply yesterday at 2:08 pm
  • Discussion in Announcements · 1 reply
  • 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 ...

Topical rapamycin

JAB10405
  • By JAB10405 · New reply yesterday at 9:44 am
  • Discussion in Surgeries, medications and treatments · 2 replies
  • Hi: I just started my 15 year old daughter on topical rapamycin and I am very interested to hear from folks who have been using it or whose children/family menbers use it. How long does it take to see ...

PGD for TS

Sweetbebs
  • By Sweetbebs · New reply yesterday at 8:41 am
  • Discussion in Genetic issues · 12 replies
  • Hi, Anyone had or having PGD to test for TS? Thanks ...

Renal aMLs

Kmarion
  • By Kmarion · New reply April 22, 2014
  • Discussion in Features and symptoms · 18 replies
  • By Kmarion Today at 9:29 am My daughter, age 31, has TS and was hospitalized on 3/1/14 because of a bleed from a giant AML pseudo aneurysm. She has giant AMLs on both kidneys. After a hospitalization ...

Almost 3 y/o appears to have ADHD

Mason611
  • By Mason611 · New reply April 22, 2014
  • Discussion in Parents, grandparents and caregivers of children with TSC · 14 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 ...

VT Educational Advocacy Trainings

captainhook
  • By captainhook · Posted April 22, 2014
  • Discussion in Announcements · 0 replies
  • Rutland: Free Special Education Workshops for parents of children with special needs. Vermont Family Network is pleased to be collaborating with the Rutland City School District to pilot a Parent Professional ...

Sleeping Medicines

gmansmom
  • By gmansmom · Posted April 21, 2014
  • Discussion in Parents, grandparents and caregivers of children with TSC · 0 replies
  • Hello, to you all. I wanted to ask if anyone's child with TS is on sleeping medicine? We found a medicine that helps our 12 year old son's behavior some, but it is making him seizures. We are going to ...

CA Education Advocacy Training

captainhook
  • By captainhook · Posted April 21, 2014
  • Discussion in Announcements · 0 replies
  • The Long and Winding Road: Parenting An Adult with a Developmental Disability. This conference is sponsored by Parents Helping Parents. Date: Sat, May 10, 2014: 9:00 am to 4:45 pm Location: PHP at Sobrato ...

Summer Camp in GA

captainhook
  • By captainhook · Posted April 21, 2014
  • Discussion in Announcements · 0 replies
  • June 9 thru June 13, 2014 9:30 - 2:00 Mon - Fri Samson’s Health & Fitness Center 6400 Woodrow Road Lithonia, GA Camp Tuition: FREE a $20.00 REFUNDABLE Deposit is Required to Hold Your Space Camp Space ...

Child's focus and TSC - question

StickyNote

White Spots... So confused!!!

Merlin1972
  • By Merlin1972 · New reply April 20, 2014
  • 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 ...

We Need Help

TyedyedChick
  • By TyedyedChick · New reply April 19, 2014
  • 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 ...

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 ...

Log in to see more

Don't have an Inspire account? Sign up now!

Forgot password?

Things you can do

Support TS Alliance

Help the Tuberous Sclerosis Alliance reach its goals and support people like yourself by making a donation today.

Donate to the Tuberous Sclerosis Alliance

Advertisement

Advertisement

Discussion topics

TS Alliance links and resources

A personal message from Julianne Moore

Community leaders

Inspire others

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.