I don't need to worry, do I? (medicine related)

[lou031205]

DD1 has been on Clobazam for just over 1 week now. She started on 2mgs twice daily, and on Weds went up to 4mgs twice daily. Next week she will increase to the full dose of 6mgs.

Today, preschool SENCO said that she was so wobbly that she didn't dare leave her side for even a second, and that she was generally dopey, very vague, wandering, etc. I explained that Clobazam was a diazepam related drug, and that it would take her a while to adjust.

Tonight, DD1 said "I don't like my new medicine. There's something problem with it..."

It just takes time to get used to, doesn't it? I shouldn't worry, should I?

DD doesn't like the taste, but it is bound to make her feel a bit odd. Or should I be taking it more seriously?

well I don't have any experience of seizure meds, so take this with pinch of salt, but I would be inclined to speak to consultant and see if you need to delay the increase to 6 mgs if she's still struggling to adapt to 4 mgs.

clobazam takes a wee while to work properly and get in the system son[36] has been on it for 20 odd years along with other E drugs
he
was on 10mg for a while and was great for years and years , then he started to be sedadted slightly by it.anyway about 6 weeks ago consultant decided to cut dose in half to 5 mg with imed affect.no cutting down slowly. BUT after 3 days on short dose son started to have withdrawl seizures this lasted about 3 weeks and now settled down again.
moral of the story. watch if you have to take her off it.

myra

My dd aged 4 has been on it for over 2 years now and has 15mg before going to bed. If she wakes in the evenings she sometimes seems a bit groggy and wobbly ( but can't seem to sleep..ho hum..)

She absolutely hates the taste and even now occasionally retches when I give it to her.

We were told that she would eventually adjust to it and in fact that it's effectiveness would eventually reduce too.. And as you say as it's a benzodiazapine drug it's addictive so the body will protest if not carefully withdrawn.. or I suppose carefully introduced. May be worth checking re the increase as said by TotalChaos above.

My daughter almost non verbal really so can't tell me what it feels like but I sense it doesn't feel great..

Having said that with sodium valproate as well we have got pretty good control of seizures for now..( she says touching wood!)

I really hope your dd settles down and it proves to be a really helpful drug for her..

Thank you. She really doesn't like it, she says it makes her cough. I suspect it is pretty grim. But I guess a jump from 2 to 4 mls will affect her quite a lot, because she is so tiny! I think I will keep an eye, and if after a few days of the 4mg dose she doesn't settle, I will phone and ask to delay her 6 mg dose.

I don't know, Riven. DD's behaviour has really deteriorated over the last few months. She also has been flooding the bed at night (gone from pull-up at night containing everything, to weeing through the pull-up and flooding the sheet, with no increase in fluids and us making sure that she wees straight before bed). Also waking with nightmares, but often can't tell us what happened (although she does have S&L delay).

When we went to see the Paed, and he saw new tremoring of DD's arms. He said that he wants her to have a sleep deprived EEG and in the mean time started the Clobazam.

She doesn't see a neuro.

My other concern is that by the time she has the SDEEG (June 3rd) she will have been on the full dose of Clobazam for 2 weeks. So the SDEEG could come out clear (although it will presumably show the background of a generally not-quite-right brain). But I presume then, that the Paed won't know if she never had night-time activity anyway, or if she had it and the Clobazam is doing the job?

In which case, she could either be on the right drug, or being medicated unnecessarily. It is all a bit worrying.

Don't know really. Her paed has a 'special interest in neuro-disability and autism'. Perhaps he thinks he is neuro-enough?

I know her MRI scan was discussed at a neuro-radiology meeting, but our Paed said they were put on the screen, everyone mumbled a bit because they didn't know what to say, and then they moved on They might want another MRI at some point.

Apparently because her abnormalities are subtle, they don't really know what it all means, but the radiologist is insistent that they are definite abnormalities, and they are widespread.

Where that leaves DD is anybody's guess.

Everything is slightly asymmetric, bits rotated down a bit, other bits a bit thin, some a bit thick. I think some grey matter where white matter should be and vice versa - Geneticist said it was the vaguest report she had ever read. DD is affected globally, so I guess she is right.

Lou go back insist on referal to neuro ds was under a paed long time who insisted ds was Gdd just one of those things and his absent spells just daydreams

ds now under neuro and turns out ds has Cp which was missed by paed as ds does not have spastic version so not obvious if do not know what looking for mind Glittery got it right
oh and neuro insisted dome tests and those daydreams were absent seizures

Least now when I say ds has cp there's bit less of the well he might catch up

Lou - i agree with roundthebend i'd ask for a referral to a neuro. I know that there are paediatric neurologists at Southampton, which i believe isn't too far from you.

After 3 years with a paed, i went to GP and she pushed her consultant for a referral to GOS.

Re the drug- i would listen to your DD. My DD has had strange reactions to several AEDs, particularly Keppra, where she was really wobbly, couldn't stand up, having hullucinations etc. When we've had reactions we've weaned her off the drug for couple of weeks and then weaned back on to see if side effects re-occur. Good luck.

Ok, so I need to get assertive - thank you both.