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Child mental health

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Constant banging and self talk

10 replies

Salwa89 · 24/08/2023 17:38

My son regressed two years ago (at age 6 years). He changed dramatically! Symptoms started with self talk, whispering, running back and forth, severe anxiety (especially separation anxiety), hallucinations, constant biting on absolutely everything all the day, lack of sleep, hypermania with unstoppable laughters, severe depression episodes and rages, misophonia, tics, mutism for one year, avoid eye contact for a couple of months, stopped playing with brother or friends, cognitive decline, deterioration in hand writing (used to be artist but now cannot draw a single line!) and the list is so long.
Now he is communicating better, less anxious, less rages, but he spends most of his days banging toys and other stuff on the floor and the wall while generating sounds (seems like compulsions). He is fully occupied with this and cannot stop it!

He had autism assessment 2 years after this onset, and it was ruled out. Symptoms appeared at age 6 and wasn't there before. It's very painful to not knowing what he has! And how to help him! He still doesn't have any diagnosis. All tests, MRI, WGS..etc came back normal.

Please share your thoughts if you have any 😔🥹

OP posts:
itsgettingweird · 24/08/2023 17:49

Had he had a sore throat?

Have a look at PANDAs.

Salwa89 · 24/08/2023 19:01

@itsgettingweird It was an option (possible diagnosis of PANS PANDAS) but they declined it, and referred him to autism assessment! Now, he is without diagnosis 😔

He used to have alot of sore throat and ear infections, frequently!

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itsgettingweird · 24/08/2023 21:09

I would ask them to re visit that diagnosis.

I found when we were searching for ds diagnosis (he has a rare neuromuscular genetic condition) I would ask them why they ruled out certain diagnosis' rather than asking them if it could be X (iyswim?)

So I'd bullet point a timeline.
Bullet point tests and results.

And then ask "at the time was considered that ds met the diagnostic criteria for PANDAs. It was decided to assess for autism as an alternative diagnosis. It is not autism. All brain and spinal scans are clear. Can you outline why you still don't consider that this could be PANDAs?"

Salwa89 · 24/08/2023 21:20

@itsgettingweird Many thanks for your support. It's not as easy as you think!!! I just wonder will he ever improve! Will I have my child back one day 😔

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chocolateisavegetable · 24/08/2023 21:22

I also thought PANDAS. It is a condition recognised by the WHO, but not widely accepted by the NHS. There is a Facebook page with some incredibly knowledgeable and helpful people on it.

itsgettingweird · 24/08/2023 21:54

Salwa89 · 24/08/2023 21:20

@itsgettingweird Many thanks for your support. It's not as easy as you think!!! I just wonder will he ever improve! Will I have my child back one day 😔

Oh I know how difficult it is.

My ds is 19 now but we only got a diagnosis when he was 15. He started showing symptoms at 6 ish. His is degenerative.

Just getting people on board to realise that a diagnosis matters to you and your child is hard.

I think the consultants see things medically rather than the emotional turmoil that goes with it.

Even now they are very much "he will get tired because of his weak muscles".

But it's very hard watching your young for 19yo ds play badminton for 45 minutes and need to sleep for 3 hours to recover (that's been todays fun!)

I really hope you get some answers because despite a diagnosis not being a prognosis it really does go some way to knowing what you're dealing with.

You can ask for a second opinion if you aren't happy. Or search online for a consultant who deals with these types of behaviours and email their secretary. You do have to fight but at some point you'll find someone who will fight with you Flowers

Salwa89 · 25/08/2023 06:37

@itsgettingweird Many thanks for your support. I'm sorry to hear about your son 😔 I hope he will receive the proper intervention and recover 🙏 ❤️

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Salwa89 · 25/08/2023 06:39

@chocolateisavegetable many thanks for the information and link 👍

OP posts:
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