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Really down... Noone helping

53 replies

shazian · 24/01/2012 10:52

DS is 11 in 2 weeks. He has severe autism, gdd, pica, low muscle tone and doesnt communicate. He used to love going to school and couldnt cope when school on holiday etc. From 9 Nov he was getting really upset in school, we thought he wasnt well. He was getting extremely distressed rubbing sides of head to point where hands are cut, head is bald each side, red, cut, bleeding & weeping. At same time there seems to be a prob with his hips or legs. At times he is limping, legs going away from him , legs twitching. He seems to be in pain and crys constant. So unusual for him he is usually very happy and bounces about constant. Kept him off school then tried to get him to go back, he seemed extremly distressed and head rubbing started again. We thought was prob in school (special school), he was moved to quieter class. At same time he has thing going on with leg, still lots of crying at least 4/5 times per day. He has been attending hospital for possible intermittent dystonia. Had mri of brain which was normal. Hospital said think best bet would be cahms which tells me they think its behavioural, i know my son, he is in pain. See cahms pyschologist who witnesses son at his distressed time, thank the lord someone sees what i do. She calls hospital back i then see neurologist & rheumatologist who are baffled, take along video evidence. On the day ds is normal bouncy self. Rheumatologist say def not arthritis or prob with hips, this is without examine him, Neuro said will take video and show colleagues at meeting and decide next step. That was 2 weeks ago. Meanwhile ds off school 8 weeks, went back 3 weeks ago and is only lasting hour before they fone me and i have to get him. School extremely concerned and get cahms physchologist to come yesterday. Again lots of crying rubbing his head, can barely stand. She is calling hospital to see what to be done next. I feel as though this has been going on forever, 11 weeks now off school (apart from now and again an hour there), he's been crying a lot sat, all day long sun, he looks at me with pleading eyes as though how are you not helping. Crying again on n off all morning from 8am. He is not eating the same, is eating enough to get by, but he has pica so normally eats continual (fridge & cupboard all locked due to this), so far today he not ate anything. His face very pale and eyes black ring. He is sleeping at nights from 8 until 8 in morning which is great, but usually he takes until 1am to get sleep and then up at 6/7. Very worried and noone seems to be able to give me answers. If he could talk and tell the problem then plenty would be done. Sorry for long post, just noone else seems to understand (except my mum who is great and also extremely worried).

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shazian · 31/01/2012 18:21

Thanks TheLightPass, your right thank god they are now listening. He's been a poor wee soul. He was impacted so much after enema it was right up to his chest and to his toes the wee soul, he def a bit brighter today though leg still twisting. Hopefully the dystonia is just side effect of his med and after out of his system he is better. If not the doc said for dystonia he can get a muscle relaxant. Fingers x all tests come back ok. So happy to be home though ds was amazing in hospital considering out of his own house, he's such a wee darling. Smile

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EllenJaneisnotmyname · 31/01/2012 19:41

So pleased you got them taking you seriously. Well done, Shazian, must have been stressful. Fingers crossed for the dystonia reducing. I hope your other DS had a good birthday. xxx

shazian · 31/01/2012 19:48

Thanks Ellen yeh very glad they are now listening, at least if dystonia doesnt stop then all bloods etc have now been done and hopefully will get an answer. Yes other ds had a lovely day even had his birthday cake at 8am lol. So much happier now, ds still not 100% but at least the ball is rolling and all the tests are done Smile x

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