Side effects of Meds

[Mom2HeathandKynzer]

On the tegretal...how long does it take the side effects to show up if they are going to?
THis is only day two of taking the meds...so I wasn't sure how long it will be before I can breath a sigh of relief.(thinking positive here)
Thanks!

[forr2grls]

What kind of side effects are you thinking about? If you're thinking of a rash/allergic reaction i believe it should have happened by now. as for other side effects-ie mood/behavior issues-takes my daughter about 3 weeks to show slight signs of those. Hope this helps.


Paula

[kathleenandjoe]

Becca started on carbatrol/tegretol when she had her second. . . and third . . . and fourth. . . simple partial seizure. She had one status and then none for 8 months (we decided not to medicate after first one in hopes that it was a fluke).

Anyway - Becca was two and a half and I remember hating that I had to give her medication. We started at a low dose and worked up . . then up further at every seizure thereafter if her blood levels indicated we could go up. You have to get the levels taken every 3-6 months or as needed.

Well we did not see anything major change at the time, and none of the allergic reaction stuff either. It also kept good control of Becca's seizures for ONE YEAR WITH NO KNOWN SEIZURES. Then she found a way around it and eventually had another 2 status episodes and then the complex partials entered our world despite "maxing out" on the dose. So we moved onto keppra.

Here is the thing though - though I did not see any pronounced side effects, Becca did need more sleep and seemed just not as sharp. . . kinda dulled. This was sooooooooooo.... obvious as we weaned her of tegretol and onto keppra. It made me kinda sad that it was obvious that the carbatrol/tegretol had such an effect on her and we did not even know it. Perhaps it was the slow upping the dosage combined with her having a long seizure and still recovering that skewed our "baseline" of where she was before starting. I don't know.

I do know that as the dose went down and keppra went up she was much more inquisitive, did better in school, and seemed more "with it." She needed much less sleep and FINALLY made it through the night without wetting at 4.5 years old even though she was potty trained at 27 months old. The night dose I believe just zonked her into too deep a sleep.

I know that is not exactly what you want to hear - and EVERY KID IS DIFFERENT. This could be his drug for life.

I would love to say that keppra was ours, but Becca found a way around that one much quicker than tegretol. Plus the behavioral side effects we saw with every increase of keppra were/are horrible. Now we are titrating up on lamictal and then will start weaning keppra away at the end of the month. A long month of too much medicine in her. It has been horrible. We only ever went 3 months seizure free on keppra. Now there are some that keppra is the ONE for too. Again - it's different for everyone, no matter how similar the diagnosis.

So now we pray Lamictal is the one as you pray tegretol is yours. Do make sure you find the form best for him. We started on liquid - went in too fast to system and she was zonked fast and then not covered mid-day. We went to the time release sprinkles and that worked well for our year of no seizures. Just be aware it comes in different forms.

Best wishes. . . and do keep us posted.

hugs,
Kathleen

Mom to Becca - age 5, born 7/25/01 - severe hydro at birth - possibly aqueductal stenosis or stroke in utero - epilepsy - right side hemiplegia . . . . a walking, talking, smart girl full of attitude.

[Firewing]

Tehya had a allergic reaction to tegrotol. She had been taking it 10 or 11 days before it showed up.

[Mom2HeathandKynzer]

I gave Kynzer all three of his doses yesterday....he had 50 mgs. each time and did fine. THis morning took it and did fine(these are the chewables) then...when I gave him his afternoon dose within 30 minutes he couldn't even sit up! He was talking and seemed alert...just couldn't control his body at all!! Scared me to death! I called the pharmasist and she said not to give him his night dose until we talked to the neurologist...which by the way I have found out that I have no way of getting ahold of him after hours!! So we called our NS who was furious that we couldn't get him at all...and said other than finding a new neurologist...we needed to not give him the night dose and just watch him since he is coming around. Could this just be that Kynzer doesn't need tegretal and that we need to try something else...or is the dose too high? What do ya'll think?:confused:

[kathleenandjoe]

Unless he's super tiny - 50mg is not a big dose at all. . . .odd that he has you giving that 3x per day.

You are absolutely on the first choice drug for partial seizures. BUT if he had that reaction to it. . . than you definately need some attention before continuing. There should be a peds neuro on-call or something. If not, seek a new peds neuro for sure. You need to be able to get ahold of someone in instances like this. I prefer neuros associated with big children's hospitals personally. At least there is a resident or someone there to speak with until the real doc calls (which can be days later sometimes - esp. on Sunday/holidays).

Since this happened after several successful doses, other things might need to be ruled out as well. Weird though that it was just his body and not mind that seemed affected.

Hang in there.

Hugs,
Kathleen

[Mom2HeathandKynzer]

What other things do you think need to be ruled out? Just curious.
He seems alot better right now...still a little clumsy...but not near as bad as he was. I have found a new neurologist for our ped. to get us in to...but have to wait until tomorrow for them to call. Hopefully it won't be too long of a wait. In the meantime I'll be giving the one we are using now a call and see what he says in the morning. And I thought the hydro was enough to drive me crazy...these seizures just might push me over the edge!:eek:

[kathleenandjoe]

Oh you do not know how many times I have wished it were a shunt thing and that surgery would just make it all go away. Seizures suck. It has been the source of much frustration, saddness, a rehashing of the why and how her/us mode I was in after dealing with the hydro, and depression as of lately for me honestly.

I do not deal with seizures and meds well at all.

Other things to rule out. . . I really do not know. I would say seizure - but he was alert and responsive you said. Though complex parital Becca still is able to answer me a bit. So who knows. I do know that you want a neuro that will give it every bit of a try as possible before moving on to the next med - - - -because there are only so many med options good for partials. We are onto another now and as I mentioned she went through the keppra quick - and our neuro put the surgical option bug in our ear to think about (finding focus and taking brain part out).

So in other words, make sure that this one is a no go for you before giving it up already. You do not want to catch yourself wondering later if you gave it a fair try as you run out of options.

Hang in there. I hope you get a call tomorrow from the neuro even though it's a holiday.

Good to hear that he's okay. Why is he on 3x per day by the way? Isn't that a pain? Usually it's 2x per day.

Hugs,
Kathleen

[langansmom]

We always saw little signs after every increase and then before we knew it the side effect was bigger and more permanent. I would think clumsiness on that low dose is a bad sign, unless there is something else going on.

(((hugs)))

Hope you get some answers soon!