Maybe another dx? madwoman I might need to pick your brains? and anyone who has used melatonin? (sorry long)

[sneezecake]

DS 1yo ??quad cp saw his disability dr yesterday, also there was the neurologist, orthopod and 2 observers. ds was ace, chatted to the lot of them. he was prev dx with spastic quad (mild) by his disability dr but the neurologist examined him yesterday and said that there is no spasticity in his upper limbs what so ever, but his right wrist is tight (right hand usually a fist but has been coming out a bit lately) So if he has no upper spasticity does this still make him qaud? if not then what? he does have tight legs but not excessive and he dose bare weight.
does this mean that I'll have to change the dla as we were told he was quad so i put it down on his form and recieve the higher rate.
madwomanintheatic (this is where i need your help) I know your dd was re diagnosed to athetoid, (please don't think I'm being nosey just trying to get a few things straight in my head) how long did it take for your dd to start using her hands, and gain some balance/co-ordination? we think this is the hardest thing ds will have to do.
Also they said about his sleeping (which is awful) he co-sleeps with me as he is still BF (which is how i get him to sleep) and keep him asleep, but he dose wake up frequently up to 10-15 times a night, sometimes we have to get up with him and watch night garden just to calm him down. this is not good as I've gone back to work now.
he advised melatonin and gave us a lealet I'd be interested in anyone's views who have used it and have considered using it, did it change dc personality, were they more sleepy during the day, as we do a lot of physio with him I need him to be as co-operative as he is now. any advice please... sorry for rambling on so much!

mealtonin is BRILLIANT
dd has athetoid cp, and is on new meds to decrease her extar movements, sadly it causes insomnia.
she has 3ml(the lowest dose) of melatonin a night and she now sleeps. so I would recomend it 100% I get it in liquid form(called kidnaps) as it is the easy way to get her to take it.

thanks 2shoes, can I ask? I think we are going down the athetoid road, ds doesn't have extra movements as such, but is stuck in baby mode, eg, when lying down he kicks his legs in excitement and goes rigid when particulary excited or frustrated have you experienced anything like this with your dd? sorry I feel like i'm asking really personal questions, and really don't want to offend anyone or think that i'm prying, I know every child is different, but would just like a crystal ball I find this all so frustrating gggggggrrrrrr!

I am trying to remember, dd is 14 now so I know it sounds odd but I don't really think about it much,when excited she relly waves her arms around, so yes I suppose she did, she mainly went stiff when she was anxious, so she woule and still does extend(breaks your back if you are carrying her at the time)

my dd does a gredation of jazz hands, jazz hands & pointy feet, star pose and complete rigidity depending upon the level of excitement. She's 4

we haven't had specific diagnosis of cp yet. Presuming athetoid cp from how she is

how do they cope with the rigidity, at the moment ds uses his to stand but doesn't have the balance to keep him upright. do your dc walk etc. when we saw the neurologist yesterday he was assessing for botox in his calves, he said in around 6 months time when he starts to walk we will give him it? I don't understand how ds would be able to walk if he is going rigid when he gets excited?

dd has never had botox, she hasn't neded it as she has good movement iynwim, she can "crawL" in a w position on the floor, can't walk (except in her walker) and uses a stander to stand, but it can vary so much my freinds dd can't do the crawling part.

has he gets older he could have affos or daffos, which would help with his balance.

oh god whats affos and daffos?

Dystonic cp might be worth considering as well? ds was originally dx with spastic quad which was revised to Dystonic. his muscles are perfectly relaxed until he tries to do something then they stiffen up, his hands and legs were very much like you describe as a baby, fists clenched and using his tone to stand up and the constant waking very familiar, he would sometimes have around 60 muscle spasms in his legs each night, if it is muscle spasms melatonin wont help but a muscle relaxant will.

I don't think he has spasms. TBH i really think its habitual waking he does it for his naps aswell, if i'm there to offer boobie, he will sleep for about 2 hours if i'm not he'll only have about 45 mins
I will look up dystonic he can do things buts gets excited which makes him stiff or frustrated which also makes him stiff. but when physio saw him last week, he was quite annoyed at her and was standing shaking his head and stamping his foot quite funny to watch reall1

I have a son with spastic diplegia CP (legs more than arms/ and he recieves high rate DLA so wouldn't worry about that.

BTW the physio said that my son is more affected in his legs, making him a diplegic, but is more affected on his left side, making him a hemiplegic, but is affected in all four limbs making him a quadiplegic [confused.com] lol

sparklygoth kat- ds exactly the same but right side was talking to another mum at the hydropool today she was saying about her ds, hes diplegic, but also has right hand involvement, but because he can use his hands hes not a quad. how odd?