not sleeping Dsand me

[Phoenix4725]

my Ds is not sleeping and waking up to give me lots of quality time] with him

how long does it have to go on before you get any help so far itsbeen 6 months and we still seem be on asuck it and see approach by paeds,

sometimes hes woke up byspasms in his legs other times hes justawake but im finding it harder and harder t deal with everything else as im running o average of 4hrs kip a night,

he has dx of MLD.GDD,SLI and hypermoblity and hypertonia

i should have logged on last night and kept you company! i was up umpteen times from 1.10 till 5.30
ds also has muscle spasms which wake him, we've tried calpol, calpol night, melatonin, baclofen, diazepam, nitrazepam, triclofos, phenergan, you name it!
we are at the point now that paed, neuro and consultant are saying we have run out of options ( hes only 4!) so in july we are going for a trial of intrathecal baclofen, god knows what'll happen if that doesn't work!
at his worst he wakes every hour so i get maybe half to three quarters of an hour sleep inbetween...thats if i can get back to sleep, most nights i cant and i'm awake for hours. bit fed up of living on red bull!

and were awake again !!!,tried calpol tried nurofen,Phenergan he climbs up the wall on.

Im not even sure whats causing the spasms.
Talked to hv /gp all they sa is try sleep routine,,Ignoring its not fact thta he wont go to bei ts fact he wakes up,like i have not tried anything i can think of am open to idears.Ped is on annual leave for 2 weeks and is devlomental only we see her 15 mins every 6 months

did consider CC but he bangs on wall/radiotor and wakes other dc up so not option

oooh it was only 4 times for me last night,
he went down no probs as usual at 7.40, then woke at 12.34, 1.34, 3.55 and 6.11, before getting up at 7.33.

i keep a sleep/awake diary as its useful for shoving under docs faces when explaining the situation, seems to make it more clear to them than me just saying hes wakes up.

i agree a sleep routine will not help if its muscle spasms and i also cant do CC as he gets in a state, i really need to go in as soon as i hear him stir, change his position and he will go back to sleep quite quickly, if i leave it a minute or so hes up for ages!

have you tried any muscle relaxants, we found nitrazepam the best but ds has been on it so long it seems hes immune to it now!

have leftpaed message but seems to be wait and see if it goes of approach,were not due to see paed for 3 months ,I am hoping prescries something findinglack of sleep hard or as my older dc would say im slightly on crabby side

know what you mean, im always crabby, ds started having the spasms at about 18months and hes 5 soon!