Arachnoid cysts in children

Posted by mildred1708 @mildred1708, Dec 13, 2024

In January this year, I noticed my 7 year old was “ignoring me” whilst speaking directly to one of his ears. I was told he probably had a viral infection. My gut was telling me something different. They decided to send him for a routine audiology exam which took 5 months.
In that exam, I was told my son was profoundly deaf in his right ear. This was SNHL. Which means it’s a damage to the cochlear. He then started getting dizzy spells even when asleep, he woke up one night screaming in pain and clutching the back of his head telling me he couldn’t see anything and was sick once.
The same thing happened 3 weeks after this too but someone passed comment on the way he was walking, his legs looked bowed, he was very slow and not straight. I took him to hospital where they requested an urgent MRI.
This showed a 1.6cm arachnoid cyst.
This was in August, and since then nothing else has been done yet his school has said he’s changed, his behaviour and personality has changed since June, he complains every day he has a bad belly and feels sick along with headache. I rung paediatrician and was told they will repeat MRI in a years time which I don’t think is right. I just want him to be seen by a neurologist. Is that too much to ask?

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You need a referral to a pediatric neurologist to begin with.

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Thank you, I have tried to contact a paediatric neurologist myself, but they need a referral.
I’ve asked my doctors; I’ve asked the consultant who seen him in childrens ward and Tuesday we see ENT consultant where I’ll push again, they all seem to pass the buck unfortunately

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