Hi im new :)

[stacey]

HI

Im stacey i am a 27 year old woman who was diagnosed with tuberose sclerosis complex at the age of 6 months old and i have been put on a few meds during my life but i was lucky enough to find that TEGRETOL CR tablets kept my seizures at bay.

I am lucky in the instance that i have been off meds now for 6 years since before i became pregnant with my kids and i havent had any trouble, however i still have to get yearly doctor certificates to be able to stay driving.

i have two boys 2 and a half year old and a 5 year old,my 2 and a half year old has high blood pressure from the epilepsy and at one point had myclonic jerks but that has stopped.

My 5 year old has ADHD, AUTISM symptoms and has anywhere between 4-10 seizures a day and he is on frisium,tegretol cr and keppra.

I AM SO FRUSTRATED RIGHT NOW!!

I believe that 3 medicines for a 5 year old kid is not right and he is a very challenging child to deal with , with his various behavioural and intellectual problems and then to add seizures on top.

FRISIUM is his 5th medicine and i am looking into alternative meds and therapies because i am at my wits end .....help!

 

[Chaz1]

Hello Stacey,

Yes, that’s a lot of meds for your little man :-(

My Son of 26 has Epilepsy.

He takes one med valproic (which he hates) a low dosage for his weight. He recently had monthly T/C break throughs but we just passed a milestone of a month free today, with no med increase, he wanted to make more lifestyle changes to see if he could avoid the increase…and we added Magnesium.

Seriously healthy diet (organic where possible) and regular sleep pattern.He takes Vit D, VitE, Omega 3, B Complex and Magnesium (introduced after last break through and he is sleeping like a baby and waking up fresh), all fully researched by me as no doc we have been to recommends supplements…but all of which he says help beat the med affects (my Sons words and I can see it to) plus the meds can deplete vitamin and mineral levels. Have you ever had this checked for your boys? Glucose levels?

He is in Neuro/bio-feedback therapy (brain training, its well documented in use for autism) It’s helped him tremendously. Concentration, memory and over all relaxation and well being. He says he can call upon the training it when out there in the world and its becoming stressful.

Anything in their diet you could cut out to see if it helps? Additives? Processed foods? Drink lots of milk? Sweet drinks?

Here is a great list of alternatives.
http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

warm welcome to CWE!

 

[Nakamova]

Hi Stacey, welcome to CWE!

You will find a lot of sympathy here regarding meds -- they all seem to suck in one way or anothe. 3 is definitely an awful lot for anyone, let alone a 5 year old. With that many it makes it very hard to evaluate the meds individually for their success or side effects.

If you can track down a neurofeedback practitioner, you may be able to get some help there -- neurofeedback has a decent track record in treating ADD/ADHD, and can also help with seizures. I know at least one other Aussie member found an NFB practitioner -- perhaps you can find one near you as well.

And I agree with Chaz -- there's very often a nutritional link to neurological disorders, and if you can do the tough work of making dietary changes and closely moderating the results, you may find that some non-medication treatments may help.

Best,
Nakamova

 

[stacey]

hi,

thanks guys for replying i rarely feed my kids any sugar where i can help it and i have been informed to stay clear of grapefruit and certain types of oranges which exacerbates the tegretol tablets but apart from that nothing else has been thought of.

a friend of mine recently told me about the neurofeedback and gave a phone number of someone nearby who deals with that so i think i might even just give the lady a call and see what comes of it. I definately feel out of my depth here as my epilepsy was controlled more or less by the first medicine.
thanks guys

 

[jyearta]

Hi Stacy,

Welcome to CWE.

Was your son put on one med. at a time?

I have found keep a diary of EVERYTING helps me and my Neur. I used to think Oh I won'g forget this, but I always did.
I note any meds. that was added, sleep disturb, any illness, antib. stress, mood changes.

It was after I joined CWE did I read about keeping a diary.