Adding More Medications?

[CJR]

I put in a call to my Neuro's office today because of Shan's recent increase in seizure activity. Unfortunately, our Doc is on vacation so the file was given to her Partner. From the research I've done on him, he has an excellent educational background and he is running the Epilepsy Program at our hospital. But I've never met him and I don't know him. So when the nurse called back and said that he felt it was time to add Keppra to her medicines I was a bit taken aback.

Do I really want her on Keppra (or Kepp'rage' as I've often heard it reffered to)? Do I want to risk those side effects? Do I want to try yet another drug therapy just before school begins? Yet, can I really let her go on having absence seizures everyday? Especially when they effect her comprehension for hours afterwards?

I've heard so many horror stories I wonder if I'm over reacting. Has anyone ever had a good experience on Keppra? Should I wait for OUR neuro to get back or should I trust that the partner has my daughter's best interests at heart? What to do...What to do...:dontknow:

 

[brain]

Here's a painted canvas that will make you think about Keppra:

Keppra is a wonder drug and a nightmare.

But I've learned several things here:

1) Keppra should be titrated SLOWLY

2) Vitamin B should be considered

Both of these should be discussed with the
Doctor - for individuals who have wonderful
Neurologists / Epileptologists that I've read
on the boards / forums ~ I've found that they
have underwent the above two steps and in
turn, Keppra worked for them.

Unfortunately it wasn't the case with me,
even though I was titrated slowly, but I was
never considered on vitamin B which should go
hand-in-hand with Keppra.

It's worth the shot.

For me - if it were possible, I would give Keppra
a try again, the RIGHT way in spite of what I
underwent the "KepRAGE", now that I've learned
more about the drug.

I believe now - most of the problems are due to
the fact that the patient was titrated too quickly,
no vitamin B was considered, and in turn - it resulted
the unwanted side-effects of the drug.

I am not defending Keppra or promoting it, but rather,
after reading up and studying it and gathering on all
the conclusions from everyone who was on it and
still on it and thereon ... I have my personal OWN
conclusions and judgment of it's how the patient is
placed on the drug properly and monitored carefully.

I'm sure you've heard the old adage of
" For want of a horseshoe, the battle was lost "

I've begun to see, that this was the case with me
on Keppra, all because I was missing a horseshoe
(the vitamin B that needs to go alongside with it).

 

[CJR]

That is definitely more information than I had and it wasn't offered by the Neuro. I've called my family physician and he wants to wait a couple of days. He feels that she may be experiencing allergy symptoms and that a mild allergy med might help her. He also wants a blood test to see if the Depakote is at a good level still. I'm willing to try these solutions first before going to Keppra.

 

[RobinN]

He feels that she may be experiencing allergy symptoms and that a mild allergy med might help her.

ARRRRRGH... so why not do extensive allergy tests before adding still another medicine, Doc? Why not begin with extensive, drastic, change in diet and eliminate any and all foods that could make her allergic. Including cleaning up shampoo, lotions (sun screens), chemicals from swimming pools. Clean out her system from the inside out... and this could take quite a few months.
(forgive me if you have already, honestly, have done this)

He also wants a blood test to see if the Depakote is at a good level still. I'm willing to try these solutions first before going to Keppra.

Sounds like a good idea.

Personally... I would never allow a second drug for my daughter at such a young age. My daughter was having 6 tonic clonic seizures a month. Now in the last month and a half she has had just one. This is med free, with nutritional changes, supplements, and neurofeedback. Conventional medical thinking is just not up to date.. in my opinion.

 

[Bernard]

Seems like Keppra is all the rage these days (pun intended). Stacy saw a epileptologist at UTMB just recently following up on her last trip to ICU and guess what was the first thing suggested (before he even really understood her condition)? *Sigh*

 

[RobinN]

*double sigh*

Of all patients who achieved six-month remission of seizures, 80.1% of those on Keppra and 85.4% of those on Carbatrol did so at the lowest dose. Among those who had one year free of seizures, 86% in the Keppra group and 89.3% of those on Carbatrol achieved this freedom while on the lowest drug dose.

******
UCB SA, maker of Keppra, funded the study and was involved in its design and conduct, as well as data collection, management, and analysis, and manuscript review and preparation. Dr. Brodie and co-author Emilio Perruca, M.D., of the University of Pavia, Italy have received grants from UCB Pharma exceeding $10,000. All of the authors have also received honoraria from UCB SA.

http://www.medpagetoday.com/Neurology/Seizures/tb/4995


one of these days my house will probably be egged.

 

[Bernard]

:egg:

 

[RobinN]

Happened to you already?
Should have warned me I would have been there to help make a souffle.

 

[brain]

*laughing* @ Robin & Bernard

=============================

In addendum - as Robin had posted, I have to agree with
her as why the Physician isn't treating the allergy, UNLESS
if that allergy is triggering the seizure(s). I have several
food allergies that will provoke a seizure in me and I have
to be so careful with this; otherwise it will trip me off,
and alcohol is NOTORIOUS for tripping me off into a
'migralepsy' (migraine and epilepsy together) or an acute
classic migraine or a epileptic seizure.

So I strongly recommend to ask a lot of questions!

 

[CJR]

My family physician (who suggested the OTC allergy med) said that the past two weeks have been in the high or dangerously high pollen rating (our news sites rate the air quality with our weather info). So he is wondering if the sudden jump in her seizures might be associated with seasonal allergies. He did suggest that we could do allergy testing but...by the time we got that scheduled the problem could've aleviated itself. Hubby has a horrific time with seasonal allergies. While I haven't noticed any sneezing or other allergy symptoms her eyes are red and puffy. So I'd much rather try OTC allergy meds than Keppra for a few days. Especially, since I've done a bit of research and found that Keppra is often used in JME cases for children over the age of 12. Shan just turned 11. Just another reason (IMO) that we should try other options first.

 

[brain]

Allergies "can" trip off seizures, would be extremely
helpful if you keep a log.

If it does - then you'll have it all recorded and it may
very well not be necessary. However ...


YOU JUST IMPLIED SHE JUST TURNED 11...

Females with Epilepsy are often PRONE to puberty earlier
than normal and the hormone factor can be an issue here,
and it's highly possible her seizures may be changing! She
could be entering into "womanhood". That itself can be
seizure provoking right there.

I'd have a serious talk about that right there with the
Doctors - her Primary & Neurologist; it might be also a
time to visit a Gynecologist.

(I began when I was only 9½ years old and had been
premium irregular cycles since and seizures DID change
when I began to mature into Puberty.)

That's another area to look into smack right there!

 

[RobinN]

For the most part I too would try an OTC medication than a much stronger med like Keppra. However there are issues with OTC meds too.

Do however go backwards a bit... something to think about for the future. Why is her body (and your husbands) reacting so strongly to the allergens. It usually is the body that has immune issues pushed to the limit that can't deal with the additional stress. So it seems to me that this is the issue that needs to be addressed first, to achieve overall health.

 

[CJR]

Again I agree with both of you great ladies!

Robin~Hubby's allergies have gotten worse as he has aged. If you ask me (you'd have to because he won't!) the increase goes hand in hand with a number of other issues he's having...blood pressure and stress. We've also adjusted our diets recently to provide Shan with the high protein low carb diet she requires. We did this as a family to "ease" the tradition for her so that she doesn't feel any more "different" than she already does. However, this may not be a good diet for my high blood pressure husband. Eventually, I hope to look into his issues a bit more but for now focus has to be on Shan.

Brain~I continually tell our team of Doctor's that she is pubescent. She is developing and I can see other hormonal indicators. However, she has not start menstrating yet, so they consider her to be pre-pubescent. Talk about splitting hairs! Her first tonic clonic was only days after we bought her first bra! HELLO! I instantly saw the hormonal component here. Yet the doc's don't seem to think that she'll have a problem with seizures related to menstration, etc. Yeah, right!

Also, I know she is getting stressed about returning to school and I know that stress is a huge factor. We're adressing her stress levels with yoga, walks, and open dialog but... Middle school is daunting for any child. Throw in the fears that Epilepsy presents to a kid and it's no wonder she's feeling stressed. I know I am!