Surgeries, medications and treatments

Share information and support related to surgeries, medications and treatments, for TSC and its symptoms.


We Need Help

  • By TyedyedChick · New reply April 16, 2014
  • 2 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 ...

Afinitor early side effects

  • By jlorvick · New reply April 11, 2014
  • 9 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 ...

Rapamycin cream in europe

  • By ARobert · Posted April 4, 2014
  • 0 replies
  • First I would like to apologize for my bad English. I live in Italy and I have a 14 years old daughter who is suffering from st and problems of facial angiofibromas. I would like to know if anyone knows ...

daughter with TS

  • By Honeybee16 · New reply April 4, 2014
  • 11 replies
  • My daughter honey is due to get brain surgery next week to remove a growth, does anyone know the successes of surgery & have they seen improvements?? x ...

topical rapmycin in uk

  • By dawnydoony · New reply April 4, 2014
  • 13 replies
  • Hi does anyone know if and how to get tropical rapmycin in the UK ...

Interesting article

  • By dawnydoony · New reply April 2, 2014
  • 2 replies
  • ...

disruption of sleeping patterns

  • By shervani · New reply March 31, 2014
  • 2 replies
  • Hi all. Please help. My baby has been on sabril from January last year. About a month ago she doesn't sleep through the night. She wakes up round 2 am and plays. If she doesn't play she moans and cries ...


  • By AndreaDG · New reply March 25, 2014
  • 3 replies
  • Has anyone used Clonazepam to head off a seizure before it starts ? How often can it be used before it doesn't work? Thanks for the input ...

Status Seizures causes and options

  • By KaleighsMama · New reply March 22, 2014
  • 3 replies
  • Kaleigh, 4 yrs old, has had 3 status seizures in the past 6 weeks. All did not respond to DiaStat at home and required an ambulance ride and aggressive treatment in hospital. She had been well controlled ...

Afinitor dosing

  • By jlorvick · New reply March 21, 2014
  • 7 replies
  • Hi, My daughter is about to start taking Afinitor, and from those of you who have some experience with this medication, I would love your feedback on the following: 1. Is it better to give the medicine ...

trexapin (oxcarbazepine)

  • By malka51 · New reply March 14, 2014
  • 3 replies
  • my 22 year old was put on trexapin about a year ago. within the year he has lost about 45 lbs. he vomits a lot has stopped eating most of the foods he loved and is on ensure plus. we have talked to the ...

Essential oils for seizures?

  • By sjd · New reply March 11, 2014
  • 12 replies
  • Is anyone using Essential oils to try to help stop seizures? What ones are you using? Sara ...

Dental Advice

  • By TeamAnabelle · New reply March 7, 2014
  • 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 ...

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

  • By Lantay · New reply March 2, 2014
  • 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 ...

If you've tried the ketogenic diet - 3 questions

  • By lemonjelly · Posted February 13, 2014
  • 0 replies
  • I have looked at past discussions here of the ketogenic diet that have been very helpful. We are considering the diet as part of our future arsenal trying to gain seizure control while promoting the best ...

Does anyone have experience with Onfi?

  • By PbMac · New reply February 11, 2014
  • 7 replies
  • Hi All - Just wondering if anyone has experience with the medication, Onfi? We just started it to see if it helps with seizure control and sleep issues. My daughter, Sarah, is already on Lamictal, Zonegran ...

ACTH or Sabril???

  • By ELeuthold · New reply February 4, 2014
  • 17 replies
  • Hi, My son Kellen is 4 months old and just started having IS within the past week. Right now we put him on prednisolone, while I try to decide what treatment to start him on--ACTH or Sabril (vigabatrin ...

Daughter with TSC and on more meds

  • By Krystie93 · Posted February 2, 2014
  • 0 replies
  • My daughter is coming up to 1 year old on the 8th February. At 8 months old she was diagnosed with a heart condition called Intermittent Wolff Parkingson White Syndrome. She isn't on medication for this ...

Ketogenic diet

  • By AlisonEmma · New reply January 27, 2014
  • 4 replies
  • I am curious to know how your experience with the ketogenic diet? Successes and failures and trials/tribulations? Our daughter has tried three different medications with no improvement of seizure control ...

DOn't know what to do anymore

  • By patruska · New reply January 25, 2014
  • 6 replies
  • I need advice. When is the right time to start treatment with rapamune or afinitor? My son turned 9 . )e was born already with multiple organ involvement. His kidney are full of AML. We don't even count ...

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