Been at the Hospital today

[Lougle]

DD1 was started on Clobazam in April, had to come back off because she was very drowsy and wobbly.

Two weeks ago she started Ethosuximide. It made her sleepy but not wobbly. However, the sleepiness didn't improve, so I kept her at the starting dose a bit longer (Paed told me to).

On Tuesday, DD had an odd pin-prick rash.

By Wednesday, she had wheals on her thighs. I took her to her GP, who decided (after she said 'yes' to rolling around on the grass - erm NO!) that it was insect bites.

Yesterday it was much worse, so I took her back, and another GP said it was a response to something ingested, but not sure what. She gave DD a different anti-histamine, and said it would be long term until it went!

Today, her legs were covered. Horrible hot raised patches, on her thighs, knees, ankles, arms. So I phoned the Children's ward.

After a loooonnng wait due to a neonatal emergency, the doc came and saw us. She thinks it is the Etho, so stopped that.

She now needs to start Lamotrigine, but the pharmacist wouldn't give it to me

Oh what a rotten time Lougle Why wouldn't the pharmasist give you the Lamotrigine?

Ethosuximide is one of the few we haven't tried - high carb content so not suitable for ketogenic diet. Hope you have success with Lamotrigine - that was the worst for DS out of all his meds and am sure that he became toxic once he was on a high dose of it as that's when it all went really really wrong!

Might be the right one though for your DD?? (here's hoping!)

The script said "Lamotrigine dispersible tablets. Give 2 mg once per day."

Pharmacy didn't have any in stock. But I asked to double check that they were ordering 5mg tablets, because that was on the discharge summary. So, dissolve the 5 mg tablets, then draw up 2mg worth of liquid.

The very-lacking-in-customer-service-skills pharmacist, said "no, they do do a 2 mg one. It is a chewable tablet" and walked off.

I explained to the dispensing assistant that I needed the dispersible tablet, and the discharge letter said '5mg tablet, give 2 mg'.

Me: "It says 'dispersible tablet on the script', that is what I need.

Her: "We can only give you a chewable tablet"

Me: "But taht is no good. That's why the script says 'dispersible tablet'

Her: "But they come in 5 mg, and you only need 2"

Me: "yes, you dissolve it and draw up 2 mg worth"

Her: "But it is really hard"

Me: "I'm a nurse

Her: "Sorry, can't do it".

So I have to wait until Monday, when I can talk to my lovely local pharmacist.

Oh dear We've had so many conversations like that with the dispensary which is part of our GP practice. They're a really lovely staff, but sometimes get it all very wrong!

I know, I should just sigh and remember that this is my life now

oh ffs that is plain daft.
DD is on lamotrogine and she has the dispersible ones.
there would be no probs doing what you say(although they are very hard to disolve

what a pain. good luck with the lamotrigine; have been taking that for about five years now without any trouble (or any seizures ) fingers crossed it is the right one for your DD.

I am glad you two have used lamotrogine - once I finally get it, I shall ask for advice