Hey, supplement gurus

[peglem]

Took Allie off lamictal @ 2 weeks ago. She improved immediately and for the first week and 1/2 it was like a miracle! After a week and 1/2 school started reporting aggressive events (lots of them) and crying spells. Still great at home until...Friday we had an IVIG, which went very well, especially-she DID NOT get stuck on the elevator, coming or going, but had a 3 or 4 spells of throwing herself on the floor and banging her head in the store on the way home, very much like what the school was reporting. Gave her more ibuprofen and it seemed to help, but the rest of Friday was touch and go. Oh, must mention that we have, while she was on lamictal given 30mg of valium (yep, that's a lot) to get her calm enough to get to IVIG. Well, this time, after giving her the 1st 10mg, she was loopy as all get out, so we stayed at 10. We hadn't needed ANY valium during her time off lamictal- she was that good!

 

Anyway, Saturday started out really rough, but I stayed away from the valium, thinking maybe coming down from it had caused a prob for her. Gave ibuprofen which only helped a little- gave taurine (which we have not been using lately) and that seemed to really help. But, it almost seems like she's having some sort of muscle and/or joint pain that's revving her up- She's doing this "claw hand" thing, where she stares at her clawed hand and cries/whimpers. Having a bit of the old photophobia as well and that dang rash across her nose and cheeks is back, this time its sand-papery.

 

My sense is that most of this is related to coming off the lamictal (has a rep. for affecting other meds, so the valium reaction is a clue for me). So are there supps that will help her kinda detox the lamictal and repair whatever it did to her?

[dut]

hi - sorry no idea on the supps front but thought I'd mention lupus 'cos of the nose/cheek rash (malar/butterfly rash) and the possible joint pain.. but I guess you're aware of those already but thought it worth a mention....

[wornoutmom]

when I hear rash and Lamictal in the same sentence I think Steven Johnson syndrome, but that's supposed to happen going ON lamictal, not off I thought? Would it be worth looking into?

[peglem]

hi - sorry no idea on the supps front but thought I'd mention lupus 'cos of the nose/cheek rash (malar/butterfly rash) and the possible joint pain.. but I guess you're aware of those already but thought it worth a mention....

The last time the pediatrician saw this rash (like 9 months ago) he did not think it was a lupus rash- I think it looks different from that now. But, I do not want to go see the local pediatric rheumatologist about it because he really just thinks everything needs to be treated by the psychiatrist. But also, not sure any testing for lupus will be acurrate because of monthly IVIG. So, I guess I'll give it some time. Some online discussion groups say that joint/muscle pain is a withdrawal side effect w/ lamictal. I guess if it comes down to it we could go see an adult rheumy since my daughter is 16. Its so hard to get any doctor to take us seriously when my daughter is so hard to examine and has such limited cooperation in her own care.

[peglem]

when I hear rash and Lamictal in the same sentence I think Steven Johnson syndrome, but that's supposed to happen going ON lamictal, not off I thought? Would it be worth looking into?

No, its not stevens johnson- I thoroughly looked at that when we started lamictal. This rash was there previous to going off lamictal- its getting worse though. It could also be sun sensitivity from other meds she is on. Lamictal is one of those meds that really, really affects other meds, so maybe going off has caused some symptoms that it was suppressing. I hate that there is so little information about how lamictal works and what interactions it has...but when we 1st started things were so terrible and we were impossibly desperate, so we had to try something.