Hi I'm Barb

[babs0217]

Hi all how is everyone. I'm new to this page and I'm hoping to maybe find some support and info from other people going through what I am. Let me start by saying that my beautiful daughter is the one with epilepsy. She's five years old and a joy to have been blessed with in my life. She was diagnosed with epilepsy at nine months old after her second seizure and a ton of testing. We have gone through so much with her my eldest daughter and I since this journey with epilepsy began. Lauralee has been on nine different meds and is currently on four. The doctor is in the process of taking her off one. I'm a single mom trying very hard to deal with the day to day living of raising two kids and the stress of dealing with new meds, special arrangements at school and daycare. Not just because of the epilepsy but laura is also delayed. They figure she's probably about 2 1/2 to 3 years old mental between her speech and behavior. Well I hope to find someone who can relate and maybe give some input on this subject as I am new to this epilepsy thing and all that comes with it. I'm just learning as I go.

 

[skillefer]

Hi Barb! Welcome to the group. I know there are several parents here on the forum with kids with epilepsy. Feel free to ask questions.

 

[Bernard]

Hi Barb, welcome to the forum. :hello:

Have the doctors described what kind of epilepsy Lauralee has? Have you considered or tried any diets? It sounds like you've been on the AED rollercoaster without much success.

 

[babs0217]

Actually the doctor hasn't said what kind of of epilepsy lauralee has. All I know is she has had partial seizures, petite-mal, and gramal. Right now she is on Keppra, depokene, zartontin and lamictol. However the doctor is currently weeing her off the depokene because we thought it was causing some behavior issues. Now we are not so sure because even though she is almost complete off the depokene she is still having huge behavior issues. Trantrums, hitting, spitting, biting and pinching. So now I'm in the process of getting her into a pyschiatrist per the nero's request. No I haven't tried a diet change. The nero said something about that however he said if we went that route she'd have to hospitalized for a least a week because every time he lowers any of the meds she ends up having lots of seizure activity. Unfortunately with my type of work and being a single mom it's hard to take that week off because I don't get any vacation pay.

 

[RobinN]

Hi Barb - welcome to CWE
My daughter also is having seizures. Almost a month without...:woot:

Has she been check out for celiac disease?
There are some other nutritional ideas that don't involve diet. That is what we are doing, and my daughter isn't on any meds at this time. I think the meds caused more neuro problems than helped.

 

[Dutch mom]

Hello Barb, welcome from another mom!

You wrote the first part my story. My 8-year old boy is handicapped and has intractable epilepsy (Lennox Gastaut syndrome.) He had the same type of different seizures as Lauralee and has tried 10 AED without succes, including the 4 meds your daughter takes now. The only results were many nasty side effects and sometimes even an increase & changing of seizures instead of decrease of his seizures (Lamictal.)

Valoprate was in most med combinations for 3,5 year. We weaned it because of long term side effects.
By then we decided he was proven med resistant. We weaned of Zarontin and started the ketogenic diet on Topiramate and Clobazam.
This diet brought an unexpected succes; immediate significant sz reduction in the first week and a > 70% improved EEG after 6 months!
We weaned Topiramate in the first 3 months on the diet. Clobazam was the last one to wean after 6 months and the most difficult one to wean, it took us a year to get rid of it. Getting him of those meds made such a big difference, we've got a different child: open, active, responsive and most of all, allmost sz free and happy, developing better than ever before.
He's on the keogenic diet for over 3,5 years now and med free.

Seems to me the KD is really worth trying for Lauralee. It's not easy but -in case of positive effect - it can make such a difference and is 200% worth all the effort.

Read more about the KD on www.matthewsfriends.org
My son's story is on the homepage there ("Our Stories", 5th from top of list)

 

[Bernard]

... Right now she is on Keppra, depokene, zartontin and lamictol. However the doctor is currently weeing her off the depokene because we thought it was causing some behavior issues. Now we are not so sure because even though she is almost complete off the depokene she is still having huge behavior issues. Trantrums, hitting, spitting, biting and pinching.

Sounds like Keppra rage. Vitamin B6 is widely reported to help mitigate that known side effect of Keppra. Is she taking any vitamin supplements?

 

[brain]

I agree with Bernard's posting below,
Both Keppra and Depakote - are
problematic AED's.

I was on Keppra and it was fine until
it was titrated upwards ~ until it became
Kep-RAGE, and had to be taken off of it.

And :hello: Barb ... welcome to CWE!

 

[babs0217]

Today was a good day! YEAH!!!!

Wow a day without any problems.....lately those are few and far between. To answer your question Bernard no lauralee isn't on any vitamin supplements. I wasn't even aware of half the side effects until I started researching the medicines myself. I swear sometimes I think the doctors know nothing that they just hear this med works so they give it to you! I will definately look into the vit supp and the diet the ladies mentioned. Thanks so much for all your input. I was feeling so lost I'm so glad I was able to find this place. Thanks again!!!!!:cheers:

 

[Bernard]

Most AEDs deplete the body of some vitamins/minerals. It's good to take a supplement.

 

[Meetz1064]

welcome!

WELCOME TO CWE, BARB!

You'll find lots of good people here, and plenty of information. And you're already getting a good deal. Bernard's built a wonderful site, with lots of great links ... make sure you check them out!


:bigsmile:

Meetz