New here too!

[alyssasmom]

Just wanted to introduce myself! I just learned about this forum from another one I visit! My daughter is Alyssa and is 12. She is in the sixth grade, and has been diagnosed with TLE with right mesial temporal sclerosis. She has only had one T/C, but has many CP's and SP's. We are fairly controlled right now with only a few a month, and just were diagnosed with migraines, and started amitriptyline at night. She hasn't had a headache since.... Knock on wood!!

Glad to have found this forum.

 

[RobinN]

Hi Alyssasmom!
Welcome... I am glad that you decided to join us.
When did Alyssa start having seizures? My daughter Rebecca is 16 and in the 10th grade.
There are some wonderful suggestions here at CWE.

I had migraines for 30 years and two years ago it was suggested that I try magnesium and COQ10. Guess what? When I am religious about taking it, NO MIGRAINES... and it is natural.

 

[alyssasmom]

Hi Robin,
Alyssa started with Epilepsy 9/1/05 with her one and only T/C. We went to the ER and they put her on Trileptal right away. I immediately learned about seizures from The Epilepsy Foundation, and until Jan. we continued to see partial seizures and continued to up her medication. At the end of Jan, we finally did an EEG, and what the tech saw scared her. She was generalizing all the time, but was not outwardly manifesting the seizures, besides a twitch here and there.

I did not like the Dr. he did not listen to me. We added more Trileptal, added Topamax, and I found a Pediatric Neuro about an hour from me. Alyssa was not controlled when we started with him, but when he lowered the Trileptal, dropped the Topamax and added Lamictal, we had several days seizure free. Her EEG was good, but the MRI showed the lesion in her right hippocampus.

Last year about this time, we stopped the Trileptal completely. We see seizures about two or three times a month, usually simple partials. Once every other month or so we see a Complex partial.

Her migraines are quick, ice pick headaches typically, with all day ones that require sleep about once a month. At this point, we started the Amitriptyline a little over a week ago.

It has been a journey, but isn't that what life is all about?!!

 

[RobinN]

I prefer journeys to exotic places.

Rebecca is also on Trileptal, and I think it causes her seizures, so I am hesitant to continue raising it to the desired level. Guess you could call me a bit of a rebel.

I am working on nutritional changes, supplementing her vitamins and minerals, and hope to start with Neurofeedback after the first of the year. Rebecca has a focal in the right frontal lobe.

 

[Bernard]

Hi Alyssasmom, welcome to the forum. :hello:

 

[brain]

3 Major Keys

:hello: Alyssasmom!

Glad you found us here at CWE! I'm
sure you're full of questions! And
unfortunately your story is all too
common; one of the most difficult
thing in Neurology field is finding the
Doctor with a Heart of Gold. The one
who listens, cares, and so on; for such
are difficult to find!

Honestly, there are many people out
there who have been wandering (and
Caretakers too) looking for such Neuro
or Epi; sometimes it takes years to find
such individual! It can be downright
frustrating! And whenever you do find
one - cherish that person (whether he
or she)!

But one thing about Neurology is - it
IS a slow process - as I've stated many
times; no two people are alike, and like
a snowflake, every one of us are unique!
So you can imagine the burden upon the
Neuro / Epi's shoulders having to figure
out and sort out what works and what
does not work. Everything becomes a
trial and error. It would be lovely if every
single person would be like a 'text book'
case - which would make it all too easy
to treat everyone, but it's not the case
or issue unfortunately. Patience is the key,
and sometimes it can wear thin on the
Caretakers and the Patients.

The only thing I can say is - if you are not
comfortable or happy with what you have,
talk with your Primary Doctor and begin
a search for a better Neuro or Epi.

From my years of experience I've learned
that there are 3 MAJOR KEYS (I've grown
up with Neurology):

1) Communication is a vital key between the
Doctor, Patient and Caretaker (especially if
a minor is involved).

2) Teamwork is the second key of importance.
One cannot do without the other. There is no
"one-man show" in this area.

3) Cooperation is the third key. Lack of it
is like building a house without a foundation.

<---- getting off the Soapbox

:soap:

 

[Birdbomb]

Welcome to CWE, nice to meet you! Make yourself at home.

 

[alyssasmom]

Thanks for the welcomes, Bernard, Brain and Birdbomb!!

The ped. Neuro that we work with now is really pretty good. I always print off a copy of the seizure log for him to add to his notes, and I also go in with comments and concerns that I have. I do feel like we are partners in her care.

Many people have told me that our Dr. doesn't talk to them, he doesn't ask them things, or tell them the why's he is doing something. I tell them they need to ask the questions, they need to provide details and do a little research on their own. Geesh at least know the possible side effects of the meds your child is on!

Ok, off my soap box too!

Have a great day!

 

[Meetz1064]

Hi Alyssasmom!
Welcome... I am glad that you decided to join us.
When did Alyssa start having seizures? My daughter Rebecca is 16 and in the 10th grade.
There are some wonderful suggestions here at CWE.

I had migraines for 30 years and two years ago it was suggested that I try magnesium and COQ10. Guess what? When I am religious about taking it, NO MIGRAINES... and it is natural.

Robin........

What's the COQ10 supposed to do to help the migraines? Mine are coming back with a vengeance after the med change from Depakote ER to Topamax...don't get me wrong, I had NO breakthrough szs (A FIRST EVER) while doing the changeover, and have no problems other than the migraines with the Topamax....but there's plenty of them. I already take 1000 mg of magnesium a day, the most you can for muscle issues....

 

[RobinN]

Let me see if I can find some documented info....

Here are a couple of articles, and if you do a search of COQ10 & Migraines, there is a lot to read.
I have read that it has to be taken with oil. I have posted that info at the bottom. My supplement has it in the capsule.

Coenzyme Q10 is a naturally occurring substance and essential element of the mitochondrial electron transport chain. It has been the most extensively studied agent for the treatment of mitochondrial disorders and has been shown to have almost no identifiable side-effects in humans. There has been a recent interest in the role that mitochondria may play in migraine pathogenesis ... The objective of this investigation is to assess the efficacy of coenzyme Q10 as a preventive treatment for migraine."1

http://headaches.about.com/cs/prevention/a/coq10_prev.htm

Energy production in brain cells is impaired in migraine sufferers, and as CoQ10 can enhance energy production, it has the potential to correct this defect and possibly to prevent migraines. Research has shown two other nutrients that play a role in cellular energy production—riboflavin and magnesium—to be effective for migraine prevention. CoQ10 was also reported in a preliminary trial to reduce the recurrence rate of migraines; however, in that study the possibility of a placebo effect could not be ruled out.

http://www.bastyrcenter.org/content/view/846/

CoQ10 works better if taken with fats and oils. Many CoQ10 supplements contain oils in the base and are sold as liquid filled softgel capsules. All forms of CoQ10 will work better if taken with a meal containing fats or with healthy supplements providing fat, such as fish oil, flax oil, coconut oil, etc.

http://www.nowfoods.com/?cat_id=1845