Really down... Noone helping

[shazian]

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).

I would at the very least speak to a pharmacist about it, if noone else medical is easily available (re:multi vit safety). Am pretty sure that hair testing isn't considered accurate (if it was surely the NHS would do it rather than bothering with blood tests!).

Yep Pipin, dentist last week had thought of that. Took him gp too to check ears, throat etc. Your right about communication, being going on forever the service here is shit tbh. He's been working on PECS for about 2 years now and not getting any further. Would you believe he actually had to go back on wait list for speech therapist because she said they work with children for certain amount of time, at same time work with teacher who then knows what to do. When child not making any progress they go back on wait list to be assessed at later date... helpful eh!! DS has had pica for as long as i remember. But do agree school a huge problem because he is calmer at home, and doesnt rub his head. Having said that he trys, but i dont let him distract him and take his hand away. School must just let him. Camhs psychologist said she can only assess him mentally once sorted physically. How do i know if it is sensory. OMG this is such a nitemare. will defo start vits 2morro.

Always thought his school was great, as in staff were wonderful so much patience etc. There are 2 special schools here, he goes to the one for children with complex needs and severe learning difficulties. Never had problem before now and he was always happy to go. As for communicating, the speech therapist came out before xmas and left me with some symbols, grapes, juice, crisps, choc buttons and banana. I have to work with 2 for moment getting him to give me the symbol for say; crisps he gets a crisp when he gives me it. He is managing this but when i try say 3 symbols, i think he would just give me any ine iyswim cos they are all food. Have to say due to recent happenings i am now wondering about school. My mum has always said basically its king of like sending him to just get a break, because he's not really learning anything. He's still in nappies, cant dress/undress himself, can only just feed himself using cutlery though still not great and will use hands if you dont stand over him. Though as he has severe learning difficulties i just thought this was normal and perhaps he cant really learn much iyswim. Though i always say, never say never.

Agree with Pipin - one blood vial can test for loads of different things - they may as well test as much as possible from the sample, not just iron but e.g. thyroid, kidneys, blood glucose, liver etc. Please double check with pharmacist when you go for the vitamins, btw I always thought that Vit D did have an RDA.

about PECs - I know someone (a parent) who got paid for to do the PECs course themselves (run by pyramid), it might be worth you doing it yourself if you can, see if you can get any further. My child's language is mostly OK now so not gone down this route, but possibly some sort of computerised aid/ipad app could be useful to help him communicate?

That's not necessarily unusual for a school taking the most complex kids Shazian. His progress i mean. It can be worth doing the PECS course yourself if possible.

In terms of getting him going with PECS the key is to use something h really really wants. If all food that's fine if food is what he's interested in (all our early PECS symbols were food).

If he's having trouble discriminating symbols you can use photos or reference objects (magnets, or packaging for example) to help him understand that what he gets depends on what he exchanges iyswim.

Def blood tests can also rule out infection
Are they even doing normal things like monitoring temperature etc to rule out infection?
Also ask if they have a LD nurse who can help with assessments, symbols etc

Agnes did take him to gp who did 1 quick check so he doesnt seem to have any infection. plus this been going on from 9 nov. Saintly, many thanks for your input very much appreciated i know you have ds with severe autism too so can well understand. Pipin, i dont think your being harsh at all and am very happy for different inputs on my problem especially when you yourself know what im on about as you have severe autistic ds too. I think you are def right about its just trying to get proper help to sort and also for my piece of mind check that he is ok physically due to him seeming to have prob with legs i feel as though cos he didnt walk until 5 and has had intermittent dystonia he could have ongoing problem. Have an ipad (well nt ds 12yo has lol), ds2 (with autsim) has not got clue i have seen a few things in paper regarding can help etc however i have left it lying to see what he'd do, sat with him showing him it etc and he just has balank look as though what you doing, then pushes away, he doesnt have ability (YET), to use it. Kept him off today, so far he's quite happy and calm long may it last. Wll be phoning camhs this morning hopefully to see what is going to happen now. Many thanks for al your inputs it helped me enormously on a very bad day

shaz

My Ds1 takes;
Floradix Kindervital liquid - 20mls per day - amazon £8
Floradix Saludynam Liquid - 20 mls per day - amazon £8
Eye Q omega 3 liquid - 15 mls per day atm - Boots 3 for 2 so £22 for 3

They contain; Iron, zinc, magnesium, vits a, b, c and d.

They dont taste great but you could hide them in food/yoghurt/whatever he will tolerate.

Ds1 has only been on them for a month but he has gone up 2 reading levels and is doing well.

Very worrying report on BBC news yesterday re; vit D deficiency

Are you on the phone today being a pita forceful???? Its the only way IME......

DS1 doesn't like the iPad either (uses a computer and now his talker quite happily).

I hope you get medical things checked.

We're having an issue with ds1 at the moment at respite - he won't go in the kitchen or dining room. Away from the building he thinks this is really quite funny and tells me it's silly using his talker. In the building he gets extremely anxious and will not walk in those two room. A member of staff was with him when he last went in there - very sudden change. He says he hurt his tongue. All we can guess is that he bit himself while in the kitchen and that he somehow over associated (very autistic) so now can't go in the building. Of course that might be completely wrong.

He has previous for this with a friend's house. I was with him when the sudden refusal anxiety happened, but have no idea what it was that scared him. It took us about 9 months to get him back in her house (used to go there all the time).

Then he did the same with the CDC. The nothing for years until this sudden respite centre thing.

If health checks comes back clear (and I would want a full medical check) that might be worth considering? Have a look back as well on previous threads as there was someone on here years ago who was having a nightmare with their severely autistic child - eventually they discovered the child had something lodged in their mouth - must have been in agony poor thing, but of course no way of communicating that.

Becaroo, Pipin & Saintly many many thanks, cant thank you all enough. Got more forceful demanded something be done.... guess what to go hospital 11am tomorrow for xrays, bloods etc. Now im freaking lol because i know it will be a nitemare for him however i also know needs must. The camhs psychologist arranged it all after seeing him on school on monday, so she is wonderful. Pipin will look into more about him communicating as soon as i know he is ok physically. Never started vitamins today because thought i'd wait and see what bloods etc show, then i will hopefully have clearer picture. Dont think they are checking genetics yet Pipin (was done years ago but nothing showed, however camhs had already said they would get this retested), though hospital checking bloods something to do with muscle, so i'll have to wait until tomorrow to get full idea of what they will be doing. What a shame eldest ds birthday tomorrow 13 he was near in tears at fact i might not be here to give him his cake lol, think will need to give before school. Oh im so glad things moving, heres hoping for answers and if they all come back normal at least i'll know its all then caused by anxiety and hopefully get help there.

i've been following this thread (but not added as not sure what to say) but wanted to send you good luck, your story has moved me to tears.

spoil your eldest DS before you go, he'll understand x

{{{hugs}}}

Well done you!!!! Bloods and x rays are absolutely the priority IMO atm.

Its v v hard when they have to have tests done...we went through a really bad patch with ds1 when he was younger (nothing like what you have been/are going through though!) and I remember crying to my mum that "since he was 4 days old all I do is hold him down whlst they hurt him!!!" I vivisly remember it took 5 of us (me, mum, and 3 nurses) to hold him down to get a canula in when he was 2.5 I sobbed and sobbed the whole time!

So.....yes its not going to be nice to witness BUT what you have been witnessing since November is also not nice so lesser of 2 evils maybe???

Very best wishes, let us know how you get on?

Maybe plan some little treats for the others when you are home? Dvd and popcorn?

aww thank you JaneMare & Becaroooo, will post when get results etc. Thank you all so much for help and info without it i'd probably still be sitting here doing nothing. The other 2 ds are great and understanding they just want there brother better. Will keep you update, so dreading tomorrow now lol after all the moaning to get it.... us women, lol, never happy

Any update OP???

Hi lovely ladies, thats us home from hospital last nite. Turns out ds is severely compacted and needed enema wee soul. He seems much brighter today, though they think could be only part of the problem. When they felt his stomach it was soft and they thought he was ok, so xray wasnt done until yesterday which showed he was severely compacted. As for his legs he is still twisting them a lot initially the thought was due to pain, however after a massive clearout lol, it still going on. Doc said could be dystonia which he will get a muscle relaxant for, however he is on risperidone which could be making worse, this is getting reduced each day and have to wait for few days after last does tonight to see how he is then. All bloods have been done no results as yet, they are doing everything mentioned above i think, but some ie genetics take weeks to come back. So glad they realise there was a problem and he will be much better soon i hope. Thank you all for the advice, was that good to sleep in own bed last night i slept in this morning for first time ever never woke until 8.40 best sleep ever

last dose* tonight

glad you are out and have some home comforts, and that the impaction has been resolved. hope they get back to you soon re: the non-genetic tests, but at least the docs have taken it more seriously now.