SPD growling , hurting himself and negative talk (i wish i could die)!!!!!

by Elaine bellford
(Uk)

Hi im in need of some help/ advice.




My lovely smart little boy turned 5 on 29th april, on 15th april he changed.

He became very angry, growling slamming doors screaming as hard as he could hitting us hitting himself, telling me his clothes tap exploding if he heard me lick my dry lips ! Licking all things smooth , sticking sharp pencil into skin (not breaking skin) tells me he wants to stop breathing when he's in full meltdown and that his brain isn't working properly and so on.

It is very scary, i took hime to an excuse for a GP who told me he may have brain tumour but then referred me to an allergist as i had mentioned allergies but has not had the consideration to refer me to neurology but im dealing with that.

It is now august and we have seen some slight improvements when we remove dairy and some e numbers .

Has anyone else experienced changes by removing e numbers if so which ones did you find were the biggest culprits.

Can i go private in the uk to an OT DOC WONT REFER ME UNTIL I HAVE BEEN TO ALLERGIST - allergist is packed due to it being hayfever season !!

Any help at all would really be appreciated.

Thank you
E



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Apr 09, 2023
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starstarstarstarstar 		PANDAS
by: Anonymous

As the lady before me mentioned check out PANDAS Disease. My son is awaiting diagnosis. He has different issues to what you have written here however his only form of communication was growing for almost first 3 years of his life. Hence how I came across you post. Searching for growling. I have read alot about PANDAS Disease and it does sound alot similar to your description. I hope you find some answers and understanding of what is going on. Best wishes
Oct 03, 2014
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starstarstarstarstar 		Son changed
by: Pat

Hello,
I have custody of my 7 year old grandson and I have experienced the same thing you are going through. Last fall my sweet grandson turned into a raving lunatic. He became aggressive- not only attacking me and his Godfather for no reason, but sometimes his playmates and his cat. He also turned his rage on himself sometimes- hitting himself and banging his head. He was pacing the floor and up til midnight- manic and delusional at times. It was awful. His anxiety was sky high. He also developed motor and vocal tics. I had him fully evaluated by a Neurology team- EEG, Neuropsychological testing and everything,and the issue is very, very complex.

It was discovered that my grandson has a learning disorder- he cannot read- this I knew. He was given a Diagnosis of ADHD, OCD, and Tourette's syndrome, which I am not satisfied with because this is not possible. Initially it was suggested that he might have PANDAS, which I still believe is possible. This was my suggestion to you- has your son had a Strep throat in the last year, or any other infection that may have caused this change in behavior? Please research PANDAS- Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. The Strep bacteria can bring on rapid behavioral changes in children overnight. The problem is that many physicians do not believe in this disorder, despite the National Institute of Mental Health recently recognizing it as real.

All of these neurological disorders are closely linked, and my grandson has always had some underlying issues- sensory problems and anxiety, etc. His mother has some anxiety issues as well, which I believe made my grandson vulnerable. Please do not give up on your son and keep seeking an answer. I sought a second opinion, which gave me a possible Asperger's diagnosis. That makes more sense to me. But I am still convinced the two Strep illnesses my grandson had last year were the trigger for his behavior change.

Best of luck. You know your child best and you are his only advocate.
Pat
Sep 24, 2014
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starstarstarstarstar 		Sound
by: Anonymous

Have you ever considered that you licking your lips might be an annoying or in his case an incredibly aggravating sound?

It could be a trigger for the meltdowns.He might have very good hearing.You might want to talk to him when he is in a good mood and ask him if certain sounds are a problem.

I'm no expert by any means but some sounds make me really angry without any reason why.At least asking about it would be better then doing nothing and you might want to invest in some lip balm.

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