Help me, before I go crazy.......

[proudestmummyever]

My Ds, aged 3 has a rare genetic disorder, so rare has no name, he cannot walk, talk, but recently started to get some skills bk after being started on Vigabatrin on 22nd Feb....and his seizures stopped, he hasn't had one in about 10 days, and the Dr's NEVER thought we would ever get control...He is also on Nitrazepam 3.5mls twice a day and Topamax 75mg twice a day and now Vigabatrin, should nw be 15ml's twice a day, but 4 days into being on 10ml's twice a day he started being SOOOO HYPERACTIVE,(ths has happened on previous meds, but not to ths extent!) he has bn in hospital and saw consultant too, who advised to leave vigabatrin at 10ml's until we see him again on the 24th, hwever I have bn advised by the neuro, to also take down his topamax,(as she thinks tht as Jack was on topamax and Nitrazepam before she strted him on Vigabatrin and ths wasn't controlling the seizures, and the vigabatrin is now controlling them, that it would make sense to start reducing the meds tht aren't working, as the combination of the 3 drugs could be causing the side effects and maybe not just the vigabatrin) Jack is still completely hyper nd not sleeping, I am going crazy here without sleep, pls can anyone advise? Has anyone ever had ths happen with their kids? How long does it take to wear off?? He is on 7mls Melatonin going to bed, but consultant said I can up tht to 10mls if he is really bad, and if 4-6 hrs later he is still awake, or wakes up again I can administer another 10mls...it's not working

Sorry, I know I am rambling, I am shattered and can barely keep my eyes open, pls ca nyone advise me

I have no advise,sorry but I'm sure someone will be along with some soon

Bumping for you. No personal experience of this, sorry, but I would be tempted to ring your ds' specialist for more advice if the melatonin isn't working.

Thanku!! Ths is yet another night and Ds is still up!!

Hoping tht once the meds have bn reduced for a longer length of time then we will start to see effects, right now I am delirious with lack of sleep

No idea about the seizure meds BUT my friends ds with epilepsy cannot have any form of sedative/sleep meds as they make him hyper & have the opposite effect.
Drs aren't sure if its reaction with the epilepsy eds or just his brain make up.

Hmm anon, tht IS interesting hey? He slept til half past six this morning, but still hyper, hopefully he will sleep tonight too xx

Hi. Defo. sounds like hyperactivity is caused by meds interacting with eachother. Some side effects of meds include hyperactivity!
It cant be good for your ds to be so hyperactive and not sleeping-let alone you.
Could you ring the Neuro. and explain how bad things are, and is there something you can do until the 24th?
Have you tried differing the Melatonin amount at night? Say, 15mg 1st dose, and smaller amount if he wakens? Check with the Neuro if you can do this.
If your ds cannot sleep at night, and you are exhausted, just while things are so bad, could you put a DVD on for him in living room, and you try and dose on the sofa? Hope things improve soon.

Hi bigpants-loving the name lol, tht should b my name lol

Glad I still have my sense of humour even though I am COMPLETELY sleep deprived, well, Jack fell asleep at THREE ths morning, I am shattered, well I haven't tried differing the melatonin doses, all paed said was to give him 10ml before bed then if he wkens another 10mls, that is SUCH a good idea about the dvd, Jack is "In The Night Garden" daft lol, and I could put it on the "tv on demand" and lie on the couch.

Ths is just awful, he is LESS hyperactive but still hyperactive none the less, good thing is tho, the Vigabatrin has completely stopped his seizures and spasms, Jack has actually given himself a sore throat, with all the snorting noises he keeps making.

I pray I get a decent sleep tonight because I have a meeting at nursery tomorrow morning to talk about Jack starting in August, to get things put in place etc....xxx