New To Website & Very Happy To Be Here!!

[DTScott]

Hi! I am Tahya's mom. Tahya is my beautiful 8 year old who has epilepsy. She had her first seizure at the age of 2, which lasted for 55 minutes. Her next seizure came three weeks later, lasting for 35 Minutes. She Was Put On Pheno And Was Taken Off Two Weeks Later For Behavioral Problems. Next Was Tegratol And She Had A Horrible Reaction And Was Hospitalized For 1 Week. Tahya Was Then Put On Keppra For Two Years And Had Less Than Ten Seizures A Year. When Keppra Starting Failing, She Was Put On Zonegran. The Doc Than Added Lyrica And Last Week She Started Lamictal.

I Still Can't Believe She Is On Three Meds. It Makes Me So Sad Because There Are So Many Side Affects. I Would Love To See What She Is Really Like Without All The Meds. She Is A Trooper Through It All And Is Always A Joy To Be Around...through Good Days And Bad Days!!

I Feel Blessed To Have Found This Site. I Can't Believe I Didn't Do This Sooner. I Always Reasearched Her Meds And Thats It. So Much Great Info. I Am On The Right Path To Learning More About Epilepsy And Ways To Help My Daughter. Better Late Than Never.

I Also Have Three Other Wonderful Blessings...james 12, Kyla 2 And Shayna 8 Mnths. I Homeschool The Older Two While Having Fun With The Younger Two.

My Main Concern Right Now Is The New Med She Just Started....lamictal. I Am Keeping A Lookout For The Rash. The Doc Started Her On 1/2 Pill And Increase Every 2 Weeks. She Is Already Starting To Have Tantrums Where She Will Cry For 45 Minutes Straight. All I Can Do Is Hold Her And Try Not To Cry Myself. She Still Has 6 More Increases. We Will Take It One Day At A Time And Continue Prayer For God's Will.

 

[alivenwell]

Everybody is different. I've had excellent results with 400 mg of Lamictal taken daily.
She may need to adjust more gradually to the drug.

Have you tried alternative diets? If you're homeschooling her, that is an ideal situation for you to closely watch what she eats. RobinN and Bernard are very knowledgeable of alternative treatments/diets.

Lamictal may be giving your daughter really bad headaches. At least that's what it sounds like to me. Is she able to verbalize that?

 

[RobinN]

Hi DTS - Welcome.

Nothing worse than watching your baby hurting. I can't even imagine a 55 min seizure.
I would be bonkers, and it takes a lot for me to go crazy.

My first visit in my search for answers was to a vets website. He has found ways to eliminate seizures in his animals. I found more solice in reading his website than the pharmaceutical information sheets that I got at the doctors offices. His site is:

www.dogtorj.com

I thought so much of what he says to be helpful in my understanding of this disorder.
Do they know why Tahya is having seizures?

Of course we have so many different threads here at CWE that might bring a glimmer of hope back into your life. My daughter is now med free. I use a combination of therapies. Nutritional changes, nutritional supplements, bio-identical progesterone, and for the past month...neurofeedback. She has not had one seizure so far this month, where in the past it was up to six. I doubt I would have known about neurofeedback if it wasn't for Bernard leaving his trail around the internet. I did my research and decided it was worth a trial. I am over joyed at this point. So you just might find something that leads you to helping your little one.

I hope you find this house a place of peace and comfort.

 

[Bernard]

Hi DTS, welcome to the forum. :hello:

Make yourself at home here.

 

[DTScott]

Thanks so much for all the info and support. I am so ashamed to say that I don't know much about why Tahya is having seizures or where they are in the brain. I just put my trust in the neurologist and meds for the last five years. Instead of beating myself up, I am on the road to all these awesome discoveries that Robyn was telling me about. I am contacting the doc and getting her medical records. I heard about the kn. diet and the doc said he would not go that route with her.

Neurofeedback sounds great. I found someone who does this about 15 minutes away. I am going to contact them tomorrow and do my research on this Doc. Are neurologist usually against neurofeedback or for it?

Robin, how long did it take for your daughter to be medicine free? I think that is so awesome. What a wonderful mother you are to your daughter....I'm sure she knows how blessed she is that you are putting in 110% to help fight her epilepsy!!

 

[Bernard]

Are neurologist usually against neurofeedback or for it?

Most don't know much about it from what I can tell.

 

[RobinN]

We spent the first year and a half trying out meds. Nothing was worth the side effects. She had no seizure control, and the side effects were awful to put it mildly. I knew the neurologist would not be up for us just stopping without a plan. I looked over her calender of events and saw that the one month and a half that she was seizure free, I had increased her magnesium level to 1000 mg. I believe the RDA for most adults is around 400 mg, so this was rather high. However, it was at this level that her intestinal tract started moving and being normal. I knew that if it was too high that she would have D (the runs) so I monitored her closely. When the neurologist raised her eyebrows at that amount, I became nervous and brought it back down. Over the next few months we were trying out another anti-epileptic drug without luck, so that is when I mentioned to the neurologist that I noticed that she was seizure free on the higher dose of magnesium. She said "Do it again."

Her seizures reduced down to two that month, but we were still not on the best schedule with it. Rebecca would sometimes take the evening dose and sometimes forget. At this time was when we made the decision to try Neurofeedback. I continue with the nutritional supplements, and nutrition as a whole.

I believe it is the neurofeedback that is rounding out the health of the brain. I do think there was an imbalance of sorts. Obviously I believe it is the whole body that I am healing, but what is keeping Rebecca seizure free right now is the neurofeedback therapy.

Our neurologist at USC wasn't very knowledgeable, but was willing to support anything that was going to help Rebecca stay seizure free. I personally don't ask approval for something like this. It is my child, my money, and my choice, as to whether or not my daughter receives this therapy. Of course it is icing on the cake that the neurologist wrote us a prescription for it, but she also knows that I am doing a lot of homework, and that I come to my decisions with intelligent thought behind it. I gave her the DVD to watch, and a few names of books that she might be interested in reading.

I would question the ketogenic diet. I know that it has been researched more than other diets that are suggested. However, it seems to have its side effects too. That is what made me look at alternative nutritional choices. Many groups that are talking diets for neurological disorders are centered around reducing the simple carbs, more often then not staying gluten and casein free, upping the veggies, organic proteins, and limited fruits.
Seems like no doctor could be opposed to that. Also no high fructose corn syrup, or MSG related additives. Reading those labels is a must.

Sorry I didn't mean to write a book. I am just quite excited that my daughter is having such a great month.

 

[brain]

Neurofeedback sounds great. I found someone who does this about 15 minutes away. I am going to contact them tomorrow and do my research on this Doc. Are neurologist usually against neurofeedback or for it?

:hello: DTScott!

Welcome to CWE!

Neurofeedback is gaining recognition now in the
Neuroscience & Neurology Specialty.

However, just because it's gaining recognition does
not mean that all Neurologists, Epileptologists,
Brain Surgeons, Neurology & Epilepsy Clinics &
Specialty Clinics recognizes it, unfortunately.

In the light of this perspective, there IS a move now
being made to make it being accepted by Insurance
Companies for all these times, it's been "out of
pocket" expense, and very, very few Insurance
Companies out there will cover this Neurofeedback
Program and if they do, it's only to a degree.

The conclusion and findings have been exceptionally
POSITIVE in the Neuroscience and Neurology! They
have found that the results have been excellent.

So there IS good news which was announced last
year and there is progression and advancement
in this area - so it will all take time for it to fall in
place in the Neuroscience and Neurology field for
them to gain acceptance.

HOWEVER I MUST PUT EMPHASIS ON THIS:

Just like not all Neurologists and Epileptologists
are up-to-date with latest technologies and
current events, et cetera (doesn't matter if they're
young or old), some are pretty set and stubborn
in their ways.

It's been stressed numerous times by many
individuals of their frustrations of finding an
Epileptologist / Neurologist who are up-to-date
and open-minded ... IF YOU EVER RUN INTO ONE,
You've landed a GOLD MINE! Cherish Him/Her,
because such are very difficult to come by!

 

[CJR]

DTScott~

I wish I could offer any advice but truly I'm so new at Epilepsy that I have nothing of any worth. But as I read your post I was struck with how sad you seem to be. I think as parents we feel a wide range of emotions when our child faces long term challenges. From anger, resignation, humor, courage, sadness, and joy. But the two emotions that are always present are fear and guilt. Fear of the next seizure, fear of the future, fear of the medicine, fear of the side effects, fear of just about everything. And Guilt. Guilt over the diagnosis, guilt over the lack of seizure control, guilt over not recognizing the symptoms, guilt over everything.

Here's the good part of the "rollercoaster of emotions": While the ride never ends along the way you become a one person Crusader. And in the heart of every Crusader is a well of emotions that is never ending. It pushes you onward until you reach victory. And in this case, victory is a single seizure free day. And upon rising the next day you begin crusading for yet another victory.

I hope you have a chance to see that while not every day is victorious (yet)...you're daughter has you as her Crusader and for that she is very lucky and more than anything else probably very thankful.

Keep up the good fight!:fight:
CJ