Im Really Down..... My poor ds

[shazian]

DS age 11 is dx with severe autism, low muscle tone, global developmental delay, adhd & pica. From november 2011 he has been very unwell. He has only slept an hour last night from 1am til 2am and screamed constant on n off thru nite. He is eating less, legs twisting and going away from him, bending over at waist and getting stuck. Been to hospital from end January they have did mri brain scan all bloods etc which all seem normal. He is now going to Yorkhill Glasgow Caledonia unit (child psychiatric unit) and they are observing him and videoing him constant. I obviously want him better, though he's now to attend every single day . They think it looks like catatonia and also tourettes tic movements. when i told them id googled it and it doesnt seem to me like it they said yes its because your ds is complex and is severe . My poor ds not been school from november no routine, constant screaming in pain and body doing involuntary movements all day long, its breaking my heart to watch this every day and not being able to help. He's on diazepam and clonedine and brufen for pain. Now hospital saying he's on wait list for Prudhoe hospital in the event they dont get answers thats for children with severe learning disabilities though its in northumberland im in glasgow. He's screaming now have to go this is exhausting, heartbreaking........... i just want him back to his normal happy bouncy self. x

I remember your initial battle to get the routine investigations done, am so sorry that the situation hasn't improved. A shame they can't get a more specialist second opinion nearer by .

I am so sorry - for both you and your ds. You must be exhausted - how do you cope in the night when he isn't sleeping? A friend has a ds with severe autism and tourettes symptoms so I have a little understanding of how relentless it can be.

I hope something can be done very soon to relieve his pain

i remember your previous posts too

sending love and {{{hugs}}} your way

Many thanks for your support ladies, he's calm for now and im getting huge smiles ...... long may it last

Hi Shazian, I remember you too, also from your help when I was struggling. I am so sorry the situation is so tough. I wish I knew what to say. I hope it gets better and I hope you keep getting some smiles.

Aww thanx Imogen & Firsttimer. No chance of a kip unfortunately Imogen hospital at 1 before that running about getting shopping, housework etc, did manage a cuppa though . But im still getting those smiles for now, just wish he could communicate then would be so much easier. Im staying positive hope to get answers soon, and do so appreciate that at least he is getting properley assessed now, on a daily basis. for all your kind words everyone, means so much and although our dc all have different problems at least we all have an understanding of what we each go through xx