Re: Lamictal - anybody on it? - long/sorry

[Guest guest]

Mandi,

Seizures have been a problem for my daugher since age 9. Tegretol did little

even with increasing doses for several years. We tried the keto diet during this

time. It helped w seizures but added a self injury/tourettes component that was

new. Thankfully, these both stopped when the keto diet was discontinued. A

change to depakote was a disaster. It actually seemed to provoke seizures,

1-1.5hr after dosing, and changed the seizures pattern to a much more severe

one. The best thing we found for seizure control was gfcf diet. For her, a

nighttime seizure event is usual - as she is responding to the withdrawal of

this foodstuff in her system. My 26y has been on lamictal for approx 4y. For

her, it caused an initial severe rash-her neuro seemed unconcerned and it did

not transition into anything severe. As expected, it has blunted her response to

surroundings, made focus more difficult, and negatively impacted word retrieval.

It has not eliminated seizure response to dietary infraction of either

gluten/casein. The seizures ARE fewer in number. I would not even want to think

about a dose high enough to completely eliminate a seizure response to food.

This warning re aseptic meningitis and lamictal appeared this year.

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm222212.htm Most

of the lamictal products have a milk ingredient - lactose. The 25mg children's

chewable, dispersible form is milk free.

http://www.lamictal.com/epilepsy/downloads/LBP329R0_LamictalPIL.pdf As far as I

know there is no pure powder of this stuff that can be coumpounded. In our

country, it has not been off patent protection long enough for anyone to take

interest in this. At her doc's and dad's insistance we initially trialed a

couple of other dosage forms with the lactose - they provoked rebound seizures

that are typical here. It is horrendously expensive - for about 300 little

chewables per month, the tab is $1200; insurance pd. Like other anti

convulsants, it interfers w the folate cycle. We used these for years and no

knowledgable person ever suggested folates could be impacted/what that meant/if

things could be measured etc. I still don't have a good handle on that but I

know for her, 5methyl folate, MB12, P5P and tons of biotin help keep a more even

keel as does 'mito cocktail.' On ARI group, Willis had info @ tegretol

http://health.groups.yahoo.com/group/ARIsupport/message/2592 and others about

depakote. It seems you have mentioned increasing aggression in the recent past

for Sam. We've seen this time after time w food 'intoxication' and withdrawal -

I'm not sure how else to put it. A sweet, compliant person goes off the wall

nasty/aggressive, pupils are dilated to the max and NOTHING calms the storm.

This makes perfect sense to me if one thinks of what is written about addictive

behavior. Long ago, I began using the 1-10 pain scale to assess 'mood.'

10=seizure. Here, 8-9 is the really nasty stuff and about 50% of the time will

result in seizures during the night. Other foods can result in the high level

neuro irritability for my daughter. I would encourage you to look for

food/environmental triggers esp if Sam is in others care for periods of time.

Sunscreen at camp was one that I had no clue about initially. ? personal

grooming products as puberty comes. There is no amount of redirection, ABA etc

that calms this for us. As difficult as it is for us, I often think how awful it

is for the child. Many times my daughter does not even recall those 'nasty'

days. It's like I'm speaking a foreign language when I try to 'talk' w her about

it after the fact.

When seizures appear en masse, it also helps to keep her in fasting mode for a

day. It seems to reset things. I'm sorry to hear that you are dealing w this.

Hope this helps.

>

> This is the AED/BP drug of choice amongst my old timer buddies but they are

> all US based, anybody have any feedback on this?

>

> TIA

>

> Mandi x

>