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Inna  
#1 Posted : Wednesday, October 17, 2018 9:32:35 AM(UTC)
Inna


Rank: Newbie

Groups: Registered, SCN8A Patient/Caregiver
Joined: 10/5/2018(UTC)
Posts: 2

My daughter is 15 and we got genetic test result. She has seizures started at age of 12 and serious learning disabilities. Now identifies with ID. I am looking for treatment.
There is research with 4 drugs identified. One of them amitriptyline. Anybody tried this?
What about TMS and tDCS elecro stimulators? Any experience? Anybody?

Inna
Inna  
#2 Posted : Friday, October 19, 2018 8:10:32 AM(UTC)
Inna


Rank: Newbie

Groups: Registered, SCN8A Patient/Caregiver
Joined: 10/5/2018(UTC)
Posts: 2

amitriptyline, carvedilol, nilvadipine, and carbamazepine

Those are drugs identified for SCN8A by researcher using cell line. Search is based on particular mutation. Can they be used for other mutations mutations?
Ayse Akpak  
#3 Posted : Thursday, November 08, 2018 5:57:16 AM(UTC)
Ayse Akpak


Rank: Newbie

Groups: Registered, SCN8A Patient/Caregiver
Joined: 11/1/2018(UTC)
Posts: 1

Originally Posted by: Inna Go to Quoted Post
My daughter is 15 and we got genetic test result. She has seizures started at age of 12 and serious learning disabilities. Now identifies with ID. I am looking for treatment.
There is research with 4 drugs identified. One of them amitriptyline. Anybody tried this?
What about TMS and tDCS elecro stimulators? Any experience? Anybody?

Inna


anyone searched for stem cell option. ı am so desperate to improve my daughters life and would try anything. she doesn't have seizures but epileptic activity with speech problems and intellectual disability with balancing problems. mild hypotonia and ataxia. she is 9 yeras old.
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The information provided in this forum is for informational purposes only. The purpose of these topics is to promote a broad understanding and knowledge of SCN8A in an effort to support parents and guardians in the care of patients with this rare genetic disorder. It is not intended to be a substitute for published data, clinical practice guidelines, professional medical expertise, diagnosis, or treatment. The information may be useful when corresponding published data are not available. Always seek the guidance of physicians with any questions you may have regarding treatment and before beginning a new health care regimen. Never disregard professional medical advice or change treatment course solely because of something you have read within this forum. The user assumes all responsibility and risk for the use of the information provided in this forum. Under no circumstances shall The SCN8A Community Website, the University of Arizona, its volunteers, sponsors, or any contributors to this forum be liable for any DIRECT, INDIRECT, INCIDENTAL, or CONSEQUENTIAL damages that result from the use of the forum.