vent/rant lack of diagnosis

[my4boys]

I have an 8 year old boy born at 33 weeks with cleft lip and palate. Was a very sicky baby. Failure to thrive, aspirated thin liquids, constantly on antibiotics due to chest infections. Diagnosed with asthma. As he turned to toddler age he had strange behaviours. Would get agitated if anything out of ordinary happened even his birthday refused to leave his room and when brought to parks or play areas would not leave my side to play even though his big brothers were with him. Had and still has sensory issues. Hated and still does walking anywhere more than what is normal. Would sit and refuse to move. Fears were a big thing. Refused to play outside over fears of dog poop spiders flies. If in any play setting would sit on floor head down playing with fingers. Hated when people even mum and my siblings would come to house. He started nursery at mainstream school. Would sit under table hiding in cloakroom. He did come round but wouldn't play with the other children. His teacher said he had no sense of danger when outside and would scream out strange noises which he still does. He didn't speak until very late and is still very delayed. Other people can't understand him. He went into mainstream p1. He began to get used to being around people but was not learning in school due to lack of attention span and would be found gazing out windows or playing with fingers. He would still shout out strange noises such as a high pitched scream. He was then sent to a special needs school where he can move at his own pace. He's in p3 now and is still unable to write his own name. He still poos and wees himself and yesterday pooed in my dining room. He smears poo on walls on himself and around his bed. He's fine with people but will really act up if there are a lot of people. He spat in a lady's face last week who we did not know. He kicks bites throws things at people without a care. He says he Hates people. He can't sit in car at peace. He will be standing on his head, lick windows and seats. Chews holes in jumpers. Can't concentrate on 2 things at once. It's hard to put into words his behaviours but I'm just so worried and nobody is doing anything he likes to compare everything 'which ones better' 'which ones stronger' he can't sleep at night and his behaviour is so unpredictable. Sorry this is so long. I'm just so frustrated with docs.

[my4boys]

N.ireland. Thanks for replying. When he was younger I thought from research it could maybe be autism but although he still has some characteristics it doesn't seem to apply to him anymore so now I was thinking more adhd. But just not sure. Because of his cleft lip and palate and the fact he hasn't had genetic testing I thought there might be a syndrome but the 2 related ones on clapa don't seem to apply either. So to me with a lack of knowledge he seems to have a mix. He sees a behaviour therapist who is finding it difficult to find ways to help as when he's not in good form he refuses to listen and just doesn't care about consequences. One appointment he Decided he didn't want to be there so completely ignored her despite all her efforts for an hour and just growled at her. I'm thinking there's maybe a condition I'm not aware of. Pead says sometimes there's just know answer which is fine if other things have been screened and ruled out

[my4boys]

Oops some message was deleted re behaviour therapist. Was supposed to say before consequences he spent the hour growling at her despite her efforts to interact with him

[my4boys]

Atm we don't get any help other than behaviour therapy. He gets speech help in school

[my4boys]

Behaviour therapist has explained that he can't concentrate on 2 things at once which is why he poos and wees himself. He can't cope with heightened emotions which is why he acts out in different environments.

[my4boys]

Thanks polter hadn't heard of it. Will look now. Thank you

[adrianna22]

It could actually be autism and ADHD. So I wouldn't rule out autism. I think it is best to get an assessment/ tests to see what he may have or not. So that you as a parent can understand his needs better.

What help is already been put in place?

[2boysnamedR]

I was told I wouldn't get a dx for my son as he's complex but doesn't seem to fit in any dx. He has been diagnosed was dyspraxia an sensory processing disorder. I think he also has asd and very likely a genetic duplication as his dad and little brother have just been dx with this duplication. So yes complex but not Undiagnosed. His main problem is dyspraxia and we mainly focus on that but most of the sen help techniques help him

[my4boys]

Thanks everyone. The behaviour therapist is there to try and give me different techniques at home to deal with his behaviour. But they aren't working very well. She tried to talk to him about toileting but because of his emotions he refused to listen as he was embarrassed about her talking about poos and wees and bums. She made a story for him but I can't get him to listen to it. He's in nappies at night but sticks his hands in his nappy and gets poo all over him walls and bed. I don't know if he's doing it out of boredom because he can't sleep at night? I did bring him to gp incase there was a medical reason but he's said it's behavioral and laughed about dirty protests not being good. We don't get any help just from the behaviour therapy but even she has tried techniques in her office for behaviour she's seen herself and thought his reaction to them unusual. It's very difficult to find a way to help him when he doesn't care about consequences. I tend to put him in his room as a time out as he will not sit on a stair or chair downstairs. But he will pull off mate Essexempty toy boxes tho tthings about. There was one day that I managed to get him to tidy it up. Wasn't expecting much when I went back but he had thrown coloured coat hangers,100 of them, about the room, bed clothes and toys. I went back to find that he had all the coat hangers colour coordinated on the rail, bed made with his favourite fleece blanket flat under duvet and everything picked up. I was so overwhelmed and really made a big deal out of it because that is amazing for him. He comes across as a lazy boy when it comes to asking him to do anything, he just won't do it even asking him to get his shoes on is a big deal yet he's always moving and talking

[my4boys]

He was tested for autism 2 years ago and they said he didn't have it because he was aware of their emotions and played imaginatively. He can be a very effect iona tell little boy but at the same time he can do and say bizzar things. He told my pregnant sister he hoped her baby died and he laughed one day when he pulled my other sisters nose bar and hurt her. Also i have a friend who's house we would go to regularly to do art on our own but when going he would always ask are there going to be people there. One day she was having an open day so when he asked i said yes. That was it he wasn't for going. I told him we'd talk about it in car and eventually got him in. We got there and i spent over an hour trying to calm him down. He was kicking me biting screaming to get back to car. I'd just love to understand the way his mind works

[Bilberry]

I am wondering about the behavioural therapist. What is her background? Who does she normally provide therapy for? She does sound like she is trying her best but without a diagnosis and therefore an understanding of the reasons behind his behaviour it must be difficult for her to be effective?

What diagnostic assessments has he had? Is he under CAMHS or a developmental peadiatrician? Your post seems to suggest he hasn't been screened for much, if that is the case I would go to your GP and really push to be referred. Even if he was fully assessed at for example 3, he has developed since then and should be reassessed. It could be he has a mix of conditions.

[my4boys]

Tbh I'm not sure of her background or who she sees. He's always seen a developmental pead on a yearly basis but once he was statemented it stopped so I rang to find out why they said it's only on request once statemented so i requested an appointment which ended up being a different person to who he usually sees but i really pushed her for adhd assessment as a number of professionals had said it could be that but they were unable to test before 7. She reluctantly Said she would refer but there was no record of it when i received the letter she had sent to gp. It's all so confusing. Gp says they don't have authority to refer?

[adrianna22]

Has he ever been screened by a developmental paediatrician? You can ask your GP to refer to see one. I'm not disputing the autism diagnosis, but recognising emotions and play imaginatively does not mean he doesn't have autism.

I do think that he has something than just Dyspraxia and I think his sensory needs tie in with big overall issue, rather than a seperate thing. If that makes sense.

He is definitely a complex child and could have a mix of diagnosis. But I defintly think you should see a developmental ped as they would do the genetic testing, other tests etc refer you to the right people.

[my4boys]

Tried uploading pic of him writing his name wee pet. I'm currently chasing up the pead he seen a few months ago to see if she made any referrals. I think she is a Dev pead but she was a different one to who he's always seen and when he was in with her he was a very good chatty boy! She kept saying it's prob down to him changing schools but I kept trying to explain he's always been like this. I'm going to write down everything from he was little as I prob don't help matters when I'm trying to rhyme things off from the top of my head!

[my4boys]

Was just on looking at syndromes associated with clefts and the 3q29 deletion syndrome has really stood out for me but it's very rare. They have both intellectual and behavioural problems with both autism and adhd characteristics. The chest problems failure to thrive and speech and ear problems which he has had all of. I seen a pic of a boy with it has very similar appearance to my Lil boy plus his Lil fingers curve as in description. Think I need to push for genetic testing

[my4boys]

Lmao polter. Yes will do ;-). Thank you all so much for your support. Just waiting on a phone call to find out if he's defo been referred so will keep you posted. Hope we get answers soon x

[my4boys]

There's been no referral. Back to square one :-( I don't understand why she said she would make the referrals and then not.

[my4boys]

Update. He's been referred to genetics. Such a relief. Long waiting list but she's going to chase it up for us.