This hurts my heart

[Sparksy72]

Originally Posted by inky1

Thanks for posting this I haven’t had a chance to look at the links.
Coincidentally DS had a CAMHs appointment yesterday and is about to start medication for his anxiety as he won’t engage with softer therapies .
As a parent it’s pitiful to see and I can’t imagine how awful it is for the young people suffering.

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I’m so sorry to hear about your DS, I hope that the medication offers some relief. Xx Take care

[Button17]

Originally Posted by Floridadreams

It’s heartbreaking. My dd’s anxiety has manifested as Misophonia (a hatred of sounds - usually eating sounds) and although the anxiety seems to have lifted, this has remained. It is currently manageable with many coping mechanisms but if anxiety is up it is unbearable for her. I truly believe this has been brought on by the lockdowns and it breaks my heart!

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Wow, this is so interesting. My DD14 suffers with Misaphonia. I have a phone call with her GP this morning to ask for a private referral to audioligy. Shes really struggling in exam conditions but the school won't help unless she has a diagnosis.

Do you have experience of this please? Best wishes to your daughter, I hope things improve for her. xx

[inky1]

Originally Posted by Sparksy72

I’m so sorry to hear about your DS, I hope that the medication offers some relief. Xx Take care

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That’s very kind thank you.
Fingers crossed .

[xXxSammi88xXx]

Sadly this doesn’t surprise me. My 8 year old suffers from anxiety. To the point that he hasn’t been able to attend school since September. In fact he now barely leaves the house at all
CAMHS rejected our referral,paediatrian also rejected us. Sadly we are very much on our own

[inky1]

Originally Posted by xXxSammi88xXx

Sadly this doesn’t surprise me. My 8 year old suffers from anxiety. To the point that he hasn’t been able to attend school since September. In fact he now barely leaves the house at all
CAMHS rejected our referral,paediatrian also rejected us. Sadly we are very much on our own

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I was told that CAMHS rely on evidence either from school or gp
The fact that an 8year old cannot go to school due to anxiety should be enough .
I would keep trying and hope common sense will prevail

[Sparksy72]

Originally Posted by xXxSammi88xXx

Sadly this doesn’t surprise me. My 8 year old suffers from anxiety. To the point that he hasn’t been able to attend school since September. In fact he now barely leaves the house at all
CAMHS rejected our referral,paediatrian also rejected us. Sadly we are very much on our own

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Sammi, I am so very sorry for both you and your son. Is there any Dr (for a second opinion) that you could find that would see your son? It feels unacceptable that he can’t get access to the support he needs. 💖 xxx

[xXxSammi88xXx]

School are 100 percent supportive and fighting to get us help too. He is also autistic. His school have said they cannot meet his needs because his anxiety is too high. We had an urgent meeting with local authority in November stating he needs a specialist provision. Still waiting to hear from them. Nobody seems to care that he isn’t in school🤷 The longer its going on the worse his anxiety is getting.

[Floridatilly]

Originally Posted by xXxSammi88xXx

School are 100 percent supportive and fighting to get us help too. He is also autistic. His school have said they cannot meet his needs because his anxiety is too high. We had an urgent meeting with local authority in November stating he needs a specialist provision. Still waiting to hear from them. Nobody seems to care that he isn’t in school🤷 The longer its going on the worse his anxiety is getting.

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Thats just awful! I am lost for words

[inky1]

Originally Posted by xXxSammi88xXx

School are 100 percent supportive and fighting to get us help too. He is also autistic. His school have said they cannot meet his needs because his anxiety is too high. We had an urgent meeting with local authority in November stating he needs a specialist provision. Still waiting to hear from them. Nobody seems to care that he isn’t in school🤷 The longer its going on the worse his anxiety is getting.

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They have a legal obligation to provide something for him in the same way that if you didn’t send him to school you could be fined.
Please don’t rely on the LA to sort it without promting
I learned all this too late .
The school are supportive because there is nothing for them to do they can’t meet his needs because he’s not there and so they don’t have a problem .
If your LA has an inclusion officer get in touch with them .
All the official bodies are very busy and he could easily slip through the net.
If all reasonable steps don’t work - go to your MP and I’m sure that will help .
Don’t leave it nobody will do it for you

[Floridadreams]

Originally Posted by Button17

Wow, this is so interesting. My DD14 suffers with Misaphonia. I have a phone call with her GP this morning to ask for a private referral to audioligy. Shes really struggling in exam conditions but the school won't help unless she has a diagnosis.

Do you have experience of this please? Best wishes to your daughter, I hope things improve for her. xx

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I’m based in Ireland so not sure about how you can get a specific diagnosis for Misophonia in the UK. We haven’t managed to get one for dd, but haven’t had to try too much yet as it doesn’t seem to be affecting her at school.
We did visit an audiologist with experience in titinus and an interest in Misophonia. She confirmed our suspicions and we tried some little aids that went in her ears (like hearing aids) that could either play music, or pink noise to disguise the sounds. She tried them out and initially they were brilliant but then they began annoying her. She now just uses an ear plug (in the side next to the family member eating) and she has a speaker on the other side playing music when we have family meals.
A few tips would be to ask the GP for a referral to an audiologist with experience in Misophonia (might not be possible). Ask the school if they’d allow your dd to wear ear plugs during exams (I’d recommend the reusable ones from Boots - 3 in a pack) even without a diagnosis. And if you’re on Facebook there is a group called Misophonia - Parents of Children with Misophonia that are mostly based in the UK and might have other ideas for diagnosis and treatment.
Sending hugs - it can be so hard for them and the families xx