UGH...nurses at neurologist office

[lorilou]

First I must say that I've never had a a problem with Noah's neurologist's office in the past. I've either gotten a call back from Dr T himself or his PA who I really like.

Today a nurse called me back. I told her the whole story...3 weeks, 3 seizures, no sleep, etc.. Her first comment is "3 seizures isn't that bad". Okay, I know compared to some kids it probably isn't such a horrible thing, but it's the most seizures Noah has EVER had in that amount of time. Not to mention the last one went on for over 20 minutes and took two Diastat to stop.

Then she says "I'm sure Dr T will want to increase his Lamictal". Obviously she wasn't listening to a word I said. She said his dose was "low". I asked her about the sleeping problems and she told me they didn't matter???

I hesitated about calling today because I know it's clinic day at the hospital. But hopefully I'll get a call back from Dr T later today...because I am not increasing the Lamictal unless he has a plan for getting this child to sleep.

[Tracy Sheppard]

(((Lori)))
That so burns my crawl, when you call for a question to the doctor and some nurse chimes in with her two cents worth. I agree 100% that I wouldn't increase anything either until I spoke directly with the doctor. ARGH!!!!! For her to say that 3 isn't that many and the sleep doesn't matter.
I so feel your frustration deary. Hoping Dr. T calls back soon and you get the answers for little Noah soon.
Tracy

[lorilou]

Thanks Tracy -

I almost forgot my favorite comment that she made...she said that "they increase the medicine until the seizures stop". Don't we all wish it were really that simple??? :mad:

[Tracy Sheppard]

ARGH!!!! If it were only that easy! Hope you hear from the doctor soon deary.
Tracy

[LeighB]

Lori,
I wonder if Dr. T's promotion is challenging his time. I know Dr. Brunstrom can get very busy and time gets away.
LeighB

[langansmom]

Can you ask him about melatonin. Langan is on lamictal and the only way we can get her to sleep is melatonin. She takes 2 mg each night. Her lamictal dose is 50 mg a.m. and 87.5 mg p.m.

(((hugs)))

[lorilou]

We've tried Melatonin...it didn't seem to do a thing. However we were using 1.5 mg so the nurse said to try a whole tablet -- 3 mg. I gave it to him tonight so we'll see what happens.

I just don't think Lamictal is the right drug for him. Everytime we go up in dosage his behavior gets worse. For one thing, we've also gone from toilet trained to needing pullups again. He gets bad "giggles" (not seizures because something always starts his laughter, he just can't stop) and wets his pants. We are told this is NOT a side effect of Lamictal but why does it get worse every time we increase his dose??

I HATE seizures....

[RathyKay]

she said that "they increase the medicine until the seizures stop".
Thanks for the laugh! Actually, my Mom used to work for the state mental health hospital coding medical records. (Very boring work, she doesn't recommend it.) She said for the state mental patients, they hit them hard with high doses and then start backing down on whatever drug they're using until the side effects are more manageable... kind of the reverse of what we do - start low and increase slowly hoping side effects don't catch up.

I just don't think Lamictal is the right drug for him. Everytime we go up in dosage his behavior gets worse. For one thing, we've also gone from toilet trained to needing pullups again. He gets bad "giggles" (not seizures because something always starts his laughter, he just can't stop) and wets his pants. We are told this is NOT a side effect of Lamictal but why does it get worse every time we increase his dose??
When I first read this, my thought on the "giggles" was yeast overgrowth... which Tom tends to get and we're working on. It also seems to affect his bladder control, but it's more of a not noticing he needs to go until the last minute, so he ends up with a wet spot on his underwear... annoying, but no need for pull-ups.

Anyway, I looked up Lamictal's info... just wanted to see if there was any "incontinence" (spelling?) listed or "yeast infection" which I didn't find. But, I did find something that might be of interest: http://us.gsk.com/products/assets/us_lamictal.pdf. If you look at Table 7 (which lists *all* the side effects seen in their tests on pediatric patients, as opposed to the most common side effects) which starts on page 32 and continues on page 33... Under "Nervous System" is listed "Emotional lability." When in doubt, look it up...http://en.wikipedia.org/wiki/Emotional_lability An individual may find themselves laughing uncontrollably at something that is only moderately funny, being unable to stop themselves for several minutes.
So... to me this sounds like the "bad giggles" could be a side effect of Lamictal. And, it's easy to have an accident when you're laughing hard enough.

Anyway...just something to think about it.

[lorilou]

KATHY!!!! Thank you, thank you for finding that for me. I have been telling Noah's neuro that Lamictal was causing the giggles and he acted like I was crazy (okay, maybe I am but that's a different subject!). But we knew it didn't start until he started taking Lamictal and it got worse with every increase.

I just sent the neuro a lengthy email (never talked to him yesterday, just his nurse twice). I think our only choice is to stop Lamictal and try Keppra.

Thanks again -

[Denae]

Oh man! I am so sorry that you Dr.T is pulling a feather out of our Dr.P's hat..

One of my close friends suggested I tell them I do NOT want to talk to a nurse.. Which I don't. Even though they have not said anything like yours did "3 isn't that many" ~ but the way they have handled our current situation makes me feel like they think it is not big deal to start having drop seizures, and have several a day when she had only been having one to two a day.

I hate it when I have to call and tell the nurse something, then she takes her time asking him and getting back to me, which leaves me with more questions that she can't awnser.

(sigh)