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).

sorry your son is so poorly, I hope the docs come up with an answer soon. Have they done any blood tests on him, just that my friend's child was a bit anaemic, and was very pale/had rings round their eyes, and that could explain the lack of eating. It must be very difficult if medics are assuming behaviour is part of the autism, when you know as a parent that it really isn't normal for him

Is there any chance you could take him to your local A&E?

They would arrange x rays/blood tests etc as a matter of course IME.

So sorry he is ill - you know whats normal for him and what isnt. He sound from your description like he is in pain, poor kid.

As I see it his problems are:

Pain
Sometimes unable to walk/stand
Not eating
Hyposomnia (Sleeping lots)
Pale
Distressed

Is that right?

I would take him to A&E. It could be something as "simple" as a UTI but he needs checking out. Good luck x

How shocking that he hasn't been properly examined (I have a severely autistic son as well and know how often medics will back off from proper examination).

Does he have a paediatrician he is under? Could you ring and ask to speak to them and ask them to co-ordinate some tests. It sounds as if he could do with some tests (blood tests, x-rays etc) however difficult they are to carry out.

Can he use a choice board at all? Can school work with him on that? About age 10 my son started being able to indicate between poorly and tired (which helped) and then showing me where was sore. It's incredibly difficult before then - I initially used big pieces of paper. Where hurts? Your LEG (written on piece of paper) or ARM (written on other side of piece of paper). Of course you can use PECS etc as well. It was quite sudden in that ds1 couldn't do that, then suddenly he could and it definitely helps. He was able to indicate via paper before he could point accurately to the relevant body part if that makes sense. I think. IIRC.

I really feel for you and your son please keep pushing.

Thanks for the replies. Yes Becaroo thats right, keep saying to dh
(especially today cause he's still crying) im going to hospital and not budging until they do something, however i know from previous experience they will feel his stomach and a quick look over and send him home. So hoping to hear from cahms psychologist she is calling hospital today and at least she is on my side, she said need to get him well physically before can assess mentally. Due to his various disabilities and severe learning disability hospital will only do any tests under sedation, so cahms physcho is hoping they will take him in and do all tests at same time. The thing is i know its a prob with his legs or hips, he is def in pain and ongoing problem with leg twisting, unable to walk at times, sometimes seems to be stuck. Apart from that he never walked until he was almost 5 and didnt sit up until 18 months. For me it's all connected and another problem. So need answers now hate watching him being so sad and upset.

Thanks saintlyjimjams for your reply. DS is not able yet to use pecs to say how he is feeling he is working on them in school but so far only motivated by food. You'll think im mad but i keep talking to him,, cuddling him and saying oh ds just tell mummy even one word and i'll help you. It is heartbreaking becuase he looks at me with tears tripping him and big puppy eyes as though to say why arent you helping me. He is under a paed, though she's not great never does anything very quick and takes forever to get hold of her. At mo i know lots of mums dont have any faith in cahms (and i dont blame them after reading their posts), however for me the psyhchologist there is the only person at present trying to help and seems able to get me seen at hospital etc. She saw distressed ds yesterday and is getting back on to hospital today. Hope she calls me today, if not think i'll try her in afternoon. This is exhausting for us all as family, though obv very distressing to have dh, 2 NT ds and we are all worried sick.

Oh shazian it sounds very difficult. Definitely get in contact with the CAHMS psychologist if she is on side. Can anyone at school help? Do you have an onsite nurse?

Your son is about the right age to be suffering from Perthes disease here. Have they investigated that at all? If it is that he needs proper treatment to prevent a permanent disability. I would go to A&E and insist that he is x rayed

hi shaz sorry to hear your ds is poorly, have you tried phoning pals? (patient advice and liason service) they might be able to get some butts into gear to help you,worth a try, have all medical ppls names ready to give them, and they should get things moving, sending hugs for all your family

Saintlyjimjams, will call camhs back this afternoon, hope by then she has been onto hospital. School are worried too, 2 of the staff were actually in tears yesterday as well because he was so distressed. His head is an absolute mess he is so stressed he has rubbed it that hard he is bald each side all cut n weeping. Yes there is a nurse, again knows something wrong she sat in on the meeting with camhs psycho told her that there is something wrong. Though we could all hear him crying from our room, through the gym hall and a bit up the corridor, its not rocket science something defo wrong. Thanks insanity, read the link will mention this to, awaiting a call to see when hospital will see him again.. So far no bloods or x rays been done, only a brain mri which was normal. The hospital were saying oh we'd normally do x ray bloods etc but because of your ds problems its a bit more difficult , oh ok then will i just watch him in pain. For x rays etc he needs sedated so need to wait for appointment. He wasnt even examined by rheumatology he just looked at him and said because he got out of his wc ok he's not got arthritis. I said what about the physio report she did examine him, measured legs, hips etc. Right side was 15% different from left (dont know what it all means), he said oh she's maybe not got exact measurement she'd have needed a thing like a protractor, i was like yes she used that and there were 2 physio's doing it. Then he said aww it's only 15% dont think too much to worry about . They are all bloody useless, if he had no disability he would get help no problem. Wish i had lots of money would go private in a second.

Oh shaz

Yes, phone paed and ask for emergency appt...am so very sorry for you and your son x

Thanks Davidsother, Pipin & Becaroo. Dont know if we have pals in scotland, never heard of i will check. Waiting until 2 then phoning back camhs, to see if she called hospital yet. Pipin, i initially thought problem was in school because thats where it seemed to start. He goes to special school there are only 7 kids in class. It all started in november and i was thinking it was due to them starting rehearsals for xmas show etc. However though he is def a lot calmer at home, and not rubbing his head he is not himself. His legs is twitching, going from him at times as though he cant stand up and he is limping (not always), a lot. He has had a prob with his legs for years where it either twists like in a cramp and cant move, other times he seems to not be able to get up etc. Hospital said possible intermittent dystonia. He didnt sit up until bout 18months and didnt walk until almost 5, so im thinking it's all connected. He is def in pain and has wee episodes up to 4/5 times per day where leg is going wierd and he's crying lots. shool moved him class because they thought he was distressed due to 2 kids that screech, they said that may be sore to declan. I feel as though he is not well, in pain and not himself really and that is why he doesnt want to go to school. He usually loves school, cant cope when not there. Blooming nitemare noone seems to help and its all just aww thats just part of ds condition. Eh, no its not this is completely new.

So sorry, Shazian, it sounds like it's getting worse. Hope you get some arses kicked soon.

Well, IMO he would be worse at school....I was sent to school a few times as a child when I was ill and it makes you feel 10 times worse than if you were at home.

I could cry for you shaz

Keep on at them...its exhausting and infuriating but IME the only way to get anything done/help

Aww thank you, each and every one of you lovely ladies, my ds problems still there lol, but you have helped me today just by being there. Many thanks x

DS1 had a sudden unexplained hip pain and limp... paediatric A&E arranged same-day blood tests, xray, ultrasound scan and took a sample of fluid from the hip itself for the lab to look at. They even listened when I told them how his odd pain thresholds and inability to explain things, were making him look ok when he wasn't. This was despite the fact he was chatting away quite 'normally' about football and making eye contact with all and sundry.

Once you know he's had the same urgent work-up as a NT child with this symptom, then you'll feel ok about looking for challenging behaviour explanations.

Oh and for the xray, bloods etc I just held him in position. Now I appreciate that a 7 or 8 year old is smaller, also he's verbal and responds to bribes, but if the xray is important, then being on some interminable waiting list is dodgy.

We didn't manage to get an x-ray of ds1 aged 8 when they thought his ankle was broken despite us and extra bods trying to hold him down (one even donned a lead apron and stayed while the x-ray was taken) so I can see why they might want to wait until sedation but they need to prioritise it, poor little chap :(

Oh, poor little lad.

I wonder if it's worth having blood tests to rule out anaemia.

My children both have autism and my younger son had some terrible problems- didn't grow for several years. I was going back and forth to doctors saying look, it's not RIGHT. A child doesn't stay in the same shoe size for years! But they said he was in proportion and there was nothing wrong. He had had pica since being a toddler, which they said was because of his autism.

He would come home from school, fall onto the sofa and cry. His skin was grey and dry, he would grab his head. In the end he just stopped eating and we had to force feed him complan. He was skeletal. You could see every bone. He looked like a famine victim.

We went back to the dr and my husband came the closest I have ever seen him to losing his temper. The dr agreed to do some tests and lo and behold - they showed that he was severely anaemic. He can't absorb iron properly.

He went on suppliments and we saw a dramatic change in him. He became more aware of his surroundings, gained weight (too much now, actually!).

some of the symptoms of anaemia can be HELL for a child with autism. They already struggle with sensory overload so you add in the other things and it can be torture for them!

Some symptoms (bear in mind there are different types of anaemia and symptoms can be different)
being tired and lethargic all the time
breathless and palpitations
feeling itchy
headaches
tinnitus
pica
altered sense of taste/touch
sore tongue and difficulty swallowing
pale skin
smooth tongue
ulcers in the corners of the mouth
dry flaky / spoon shaped nails
tingling in the hands and feet
muscle weakness
problems walking and with coordination
leg pains

If you google it, there's loads of symptoms that you really wouldn't think of!

I am not in any way attempting to diagnose your child. I am not qualified to do so. I am just saying what was wrong with my child and the syptoms he had. You should insist that the doctor does tests to find out what is the matter with your child. Don't allow them to fob you off with that old 'it's because he's autistic' pile of shit!

Tried phoning camhs, surprisingly (not), answer machine noone to take my call. left message asked for call back. Pipin i really want to keep him home every day, but your right need him to go so at least they can assess. Also school can see there is a problem and they are talking to camhs and my comm paed at same time. However, he's only managing an hour and i have to collect him then when i get there and see the state he's in i get upset and wish i'd just kept him home. Kept him off today, just couldnt do it. Maria did you get any answers after your tests? Dont think they would do anything without sedation, because he has little understanding, doesnt communicate and would be extremely distressed. And, yes he has the strength of an adult lol. Saintly you will know how frustrating it is due to your ds having severe autism as well, soooo wish he could tell me even one word. Pipin i'm going to health shop tomorrow to try a vit d supplement, cant do any harm and might help thank you. JustHectate, he certainly could have some of these symptoms so think i will try iron supplement too. He could be rubbing head because he has headache, def got pain in legs and problem walking, pale skin, pica (though had for years), sleeping great which is so not him, could have altered taste and difficulty swallowing because he is not eating the way he normally would, it's like he wants something then puts to his mouth, touches with his teeth then shoves away. (though he's still eating a good amount). Thanks again you wonderful, wonderful ladies xx

you might be better off with a bogstandard multivitamin containing iron, just on the off chance his iron levels are OK, you dont want to risk him having excess iron.

I'm sorry to hear that they've not done a lot of the basic investigations that an NT child his age would have had. As saintly has said, they need to be prioritising getting these done

Oh thanks TheLightPassenger, wouldnt have thought of that. I have never used vitamins so dont have a clue lol. Will it be safe and ok to give him multivitamin and will that contain vit d and iron? Ive read somewhere before about sending off a hair strand and they can test for what you might be deficient in. Think i will google and see if possible.