thinking of e-mailing our neuro about reducing ds2's lamotrigine

[mummypig]

I posted a while ago wondering if ds2's bowel incontinence was linked to the lamotrigine. I am now fairly sure that it is. Furthermore he seems to be really sensitive to small changes e.g. when he went from 5 x 5mg tablets bd to 1 x 25 mg tablets bd, or when the pharmacy gave us generic lamotrigine at the same dose but made by a different company, or when we miss a dose and give it a few hours later than usual.

I had hoped that his body would adjust once he reached the 'maintenance' dose but he's been on the same dose the whole summer and we still are lucky to have more than a couple of days without any 'soiling' episodes. There's also the daytime drowsiness/hyperactivity and the aggressive or impulsive behaviour. It hasn't been the easiest summer, especially with an 8wk old new baby in the family too. (As an aside, I know that many of you deal with much worse all the time so I won't grumble too much about my lot.) And once he starts Reception in a couple of weeks the school will also have to deal with the incontinence/behaviour/energy changes.

Anyway when we were gradually ramping up the lamotrigine dose his seizures stopped when he was only on 1 mg/kg/day and he's now on about 3 times that. I've read that the maintenance dose can vary from 0.5mg/kg/day to 8 mg/kg/day when taken in conjunction with sodium valproate. So I am thinking that we could slowly lower the dose towards a point where the seizures are still under control but we have fewer, or less frequent, side-effects.

I want to e-mail the neuro about this - it seems quicker than snail mail but also gives her the opportunity to give a considered response rather than having to answer on the spot if I phone her.

How much would you suggest I put in my e-mail? Last time we saw her she dismissed my query about the incontinence by saying 'he's still on a very low dose'. I would be inclined to put in lots of information to try to back up my argument, but I don't want it to be too much.

Thanks everyone.

[Seuss]

Hi, sorry, don't know anything about seizures and meds but your OP made quite a clear argument to me. I'd agree with e-mailing, it will also give neuro time to consider your points before answering.

[2shoes]

dd is on lamotrogine. before I forget to mention it. never allow them to give you a different make. my gp puts the brand name on the prescription, as it can affect the child.

I would copy and paste the post tbh(changing bits)
dd is 13 and on 230 mg aday.

[mummypig]

2shoes I asked my gp to specify brand name last time I went for a repeat prescription, and she said she couldn't. Then I asked the pharmacy if they could make sure it was from a particular company, the one we usually get. I went to collect the drugs they said they had phoned all around and they couldn't get any from that company this time. I took the drugs as we were really close to running out...

Anyway I haven't contacted the neuro yet (finding it hard to get child-free computer time) but will probably try to cover the same bits as I've put in my OP.

thanks for your replies

[mummypig]

quick update, neuro happily agreed to try to reduce the lamotrigine and gave me a schedule for gradual reduction. Now I just have to get the GPs to prescribe 5mg tablets again instead of 25mg ones and I shall see how it goes. I wish I'd contacted her earlier. Thanks for the advice.

Will also try to stockpile tablets of the same make so that I don't have to take whatever they give me.