Catatonia neurological movement disorder.... Anyone know of this?

[shazian]

DS age 11 has severe autism, GDD, low muscle tone, pica. He doesnt communicate. From Nov 2011 he has been quite unwell. Really lethargic, sleeping a lot more than usual, no appetite, his legs keep twisting and he gets stuck sometimes when trying to get up, he is extremely anxious covered in bruises with nipping himself and his head is bald each side due to him continually rubbing and pulling his own hair. He has been in hospital for 5 days a couple weeks back now seeing psychologist from Camhs, we are waiting on bloods results coming back the few that have show hes low vit b12, zinc some other vits. Muscle blood test was high. Doc said these tests not too much to worry about will sort them out, and they are not what is causing his problems. He crys sometimes screams and seems to be in pain. Doc has said taking him back to hospital next thu/fri to reassess they now think could be catatonia (not the schizophrenic type? whatever that means). Have googled but dont really understand it. They also think as well as this he could poss have epilepsy.

shazian Lorna Wing has written a paper about catatonia and severe autism:

bjp.rcpsych.org/content/176/4/357.full

I vaguely remember seeing some videos posted by a mother on Youtube.

Oh sorry

bjp.rcpsych.org/content/176/4/357.full

Link should be clickable now

Thanks saintly for the link. PipinJo to see docs again next week about the blood tests, think theyve checked for just about everything, was over phone wouldnt go into it but i said are any back yet thats when they said low vitamins cant remember what ones only b12 and zinc.... think there was a few. She said his muscle test was high (blood test) but not enough to worry about. The camhs psychologist doctor saw him a couple of times (it is her that is arranging hospital appointments and the tests etc), when she last saw him she was talking about him staring which he does constant and this is where she thinks epilepsy, though dont know how he could poss have eeg, having it while asleep wouldnt be any good i dont think. She said think catatonia but not the scizophrenic type, that it is very rare but can now come from neurological disorders never went into it too much he is to be reassessed next thursday and friday in hospital again. Yes ds still off school cant take chance of making him worse, he is certainly calmer at home than in school though not great does go through a lot of crying spells in the day. Nipping they think sensory, but rubbing his head they think to do with whatever else is going on. I am so glad all tests and him being assessed are now getting done. Hope to have answers soon. For now he is on lorazepam which the doc said would be used for epilepsy and also the muscle spasms. His legs still twist a lot however he doesnt seem to be in so much pain. Will ask about mitochondria disorder (will google too lol, not heard of before). Think the doc scared to mention anything to me, she knows i look up everything though i know not always good idea. Quite positive now that will get answers, the camhs doctor said if we dont get answers when in hospital next week the next step would be another hospital in Northumberland (I stay Glasgow), the hospital is for patients with severe learning disabilities. Doc put him on wait list for this hospital just in case so hopefully wont need to go, though if we do then will be about April so not too much of a wait

Oh PipinJo meant to say, the camhs doctor is also arranging speech and lang therapist in the hospital to see him she cant understand either that he has no way of communicating.... this is thanks to you cos i kept going on and on about it

Pipin dont worry im not alarmed a tumour had crossed my mind too cos he's that unwell. Though he had an mri before any of the other tests this was done under GA came back normal. Neourologist said was normal cos ds in sleep mode, ideally though not possible be done whilst ds awake cos then he would be having different thoughts and the pattern would have been different. He did have xray which showed he was severely compacted so had enema.... after massive clearout he seemed slightly better for couple of days before going back as bad as he has been, though suppose stomach being so full would have made him under the weather. Its a neurologist he is seeing in hospital it is her that has done all the blood tests and xray. Think they have tested everything she was amazing too (DS seen her a few times before), and she said would get to bottom of problem. Did urine test not sure about thyroid tho im sure would have been tested. They have did genetics too though still waiting results, camhs doctor is determined to get to bottom of his severe learning disability and thinks its more than autism, imagine her getting speech therapist at hospital onto it too lol. She is the best doctor ive ever came across would you believe she is off on a thur/fri she called me last fri to say im off my holiday next week just phoning to check ds is ok before i go... im like well no he's not been screaming all day worse thasn ever. Give me an hour will call you back, phoned me back to say take him to hospital sat and sun for meds to calm him then i'll see you monday (meant to be on hol). Saw her monday at hospital she went over the possibilities and arranged for him to be reassessed this week, even thinking ahead to get him on wait list for other hospital if all else fails. I feel very fortunate that at last someone is helping.

Lol im laughing to myself Pipin, taking note down of all ive to ask when get to hospital no wonder the camhs doctor scared to tell me anything she must be wondering how i know so much and wonder how i know what to get them to check she must think im highly intelligent when im like and have you or will you check for A,B,C lols. Cant thank you enough for all your information i knew posting here someone would have been in much same position. Your right ds school is adding to his regression. How is your ds now? Hope he is well.

Pipin not reaching puberty yet thank god, just 11 last week, though i know all kids are different. no noticeable changes but the docs have asked about that too. DS is more crying than screaming but will do sometimes, last friday he was screaming the roof off but after getting meds he is a lot calmer. He seems to be in pain at times though at other times just bursts out crying for no apparent reason and cries really hard with huge big tears n puppy eyes at these times i can tell no pain but very emotional. Your right will keep fighting only when you shout do you get heard i've learned that over time , especially recently. Im assuming when i go to hospital nxt week they will go over bloods and give me the supplements needed. Your poor ds hope you get answers soon too, nothings ever simple is it?

will ask about serotonin levels 2 lol thats a week he's had med now so dont know how long would take to work at other times like right now he is killing himself laughing again no apparent reason. he's just sitting on sofa dh watching tv, me on here... sitting laughing to himself and staring at ceiling . OMG your poor ds been through so much as well, you feel so helpless dont you as if they have not got enough problems but all this on top. Your ds foot twisting inwards and very weak soun ds exact same as my ds. Yes wonder if saintly ds has had these issues you two seem to have ds a lot the same as mine. saw ds blog and her ds video doing surfing actually made me cry n gave me sooo much hope for the future, hopefully one day my ds will have an interest too.