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ADHD diagnosis-inconclusive

2 replies

headache898 · 07/12/2022 00:27

Sorry long! Looking for some advice!
My DS is almost 10. Diagnosed with ASD when 4. I think he shows some traits of ADHD/ADD: limited attention, lack of focus, frustration, impulsive, refusing to do school work, hates queuing,doesn’t listen to instructions. I understand he doesn’t meet ALL the classic adhd/ADD symptoms but I was so desperate because he can be so challenging at school and home. He’s deeply unhappy and self aware .
so I applied to CAMHS and after 2yrs waiting we were accepted on the neurodevelopment panel. Prior to being accepted I had a long interview over the phone with the triage Nurse? Describing DS history, concerns, examples. This was 5 months ago! In between the phone call back then and the panel today, my DS was also diagnosed with DCD (dyspraxia)
So finally at the appointment today they observed him on his own ( paediatrician and OT). The paediatrician said twice (start and end of session) that they didn’t need to discuss his behaviour/traits with me as I’d done this over the phone (5 months ago). I was troubled about this because I did prepare lots of examples as I felt the phone call was such a long time ago etc. and lacked context. but I was weak and they didn’t give me a chance to.

So later on, the paediatrician called me after meeting with the panel. He said that it was not clear cut if DS has ADHD/ADD and so they were not going to give DS a diagnosis. He thought it might be the DCD that was causing his frustration and attention challenges. He finished off with saying my DS performed well in the puzzles and even beat him at jenga implying he couldn’t possibly have ADHD. He said we can re refer later if need be. I panicked because I sensed all avenues closing to us as he was about to discharge my DS. So I started to blurt out what I wanted to say face to face earlier at the clinic, about how he’s behaving very erratic at school, close to being excluded, his rages, frustration and lack of focus, impulsive, his intense boredom etc.
I said I understand if he didn’t meet the criteria for ADHD but I was desperate not to be cut loose and have to re-refer back to CAMHS and wait another 2years. He cut me off by saying he’s still with the panel and they will discuss with his colleagues and call me back. They didn’t. I don’t know what to do. I think what is tricky to the professionals, is that DS can perform well especially when it’s a new exciting situation but when it’s day to day stuff, he really kicks off, I feel he’s always searching for that ‘high’ if that makes sense. I was wondering whether to pay for private just to get a more in-depth assessment, not just for ADHD.
TIA!

OP posts:
BiscoffAnythingIsTheWayForward · 10/12/2022 21:03

I can’t help you much but I do understand your frustration. Our children’s traits, needs and behaviours expand far further than the information that you can provide over a phone call. I don’t think a short interaction with a paediatrician is definitive either. After all your son has ASD and so traits of that will clash with traits of the ADHD/ADD. Also, has the paediatrician even heard of masking 🤦🏻‍♀️🫣 of course they have. At least he’s not been discharged. All I would say from here on out is document everything. Keep voice recordings of any outbursts etc if possible. I had to do this with my middle son as school said he showed zero traits of ADHD/ASD in school. Until I asked about his stims, all of which he did display on school and also had a lot of anxiety around social situations. The only thing that got them to back me with CAMHS was then hearing a few voice memos I was essentially forced to record to show them the child they just had leave them at school, wasn’t the same one that got in to my car and emotionally burst in front of my eyes. I’ve also recorded videos to show his emotional and often violent outbursts. The problem is, when put on the spot it’s hard to sometimes recall everything because it all becomes such an integral part of your life and becomes the norm so to speak. We are going to seek private assessment for my son because of the wait. He starts secondary next year and I’m dreading it.

Ifitsmeanttobe · 21/01/2023 20:33

we are in a very similar situation with ds who is 11. he has always had anger outburst and conflicts at home and school but they only raised concerns with us re adhd last year. He is very academic and is able to focus (when he wants to ) but his impulsiveness and inappropriate behaviour has got him into trouble over and over again.
we took him to a private psychiatrist last year who after 30 min told us he wasn’t adhd but possible could assess for Autism. We didn’t pursue this as with spring and summer he always improves. this year things got worse again and school is now really pushing for an assessment and have a paediatrician app next week. He is so articulate and in tune with his feelings when he is talked to that people often think what a well adjusted child he is which could not be further from the truth so worried that the meeting will end up with another we don’t see concern. Hope you are managing to progress your son’s case

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