Discussions

Topical rapamycin

JAB10405
  • By JAB10405 · Posted yesterday at 6:41 pm
  • 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 ...

VT Educational Advocacy Trainings

captainhook
  • By captainhook · Posted yesterday at 8:20 am
  • 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

CA Education Advocacy Training

captainhook
  • By captainhook · Posted April 21, 2014
  • 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
  • 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 ...

Low Tone

awasserman
  • By awasserman · Posted April 20, 2014
  • In Features and symptoms · 3 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 ...

Kidneys

patruska
  • By patruska · Posted April 17, 2014
  • 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
  • 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 · Posted April 16, 2014
  • 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 ...

We Need Help

TyedyedChick
  • By TyedyedChick · Posted April 15, 2014
  • 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 ...

Almost 3 y/o appears to have ADHD

Mason611

IN Educational Advocacy Training

captainhook
  • By captainhook · Posted April 15, 2014
  • 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
  • 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
  • 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
  • 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 ...

MA Educational Advocacy Trainings

captainhook
  • By captainhook · Posted April 14, 2014
  • 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 · Posted April 11, 2014
  • 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 ...

IN Educational Advocacy Trainings

captainhook
  • By captainhook · Posted April 11, 2014
  • 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 ...

Arizona - Step Forward to Cure TSC

Gryphon
  • By Gryphon · Posted April 11, 2014
  • In Announcements · 1 reply
  • If you are in Arizona April 26th and would like to participate we would love to have you join us! It is a fundraiser but there is no minimum to participate and meet other people living with TSC and working ...

Things you can do

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A personal message from Julianne Moore

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