swallowing

[Guest guest]

Hi All

It has been an ongoing battle with the complications my 8 year old

boy has. He has had 10 v.p shunt revisions. Last year the MRI report

showed he has tonsillar ectopia of 3.7mm. The NS here will not

address it because it does not reach the 5mm criteria. He also has

an enlarged 4th ventricle.

Last week he started to complain about

difficulty swallowing and it has been on a daily basis since then.

The NS will not address it because he says it cannot be the tonsils.

Please understand that these complaints come form a boy who never

admits o feeling unwell. He does not want to end up in hospital.

We

are on day 7 now and yesterday the difficulty during the day was so

bad he asked me for swallowing medication. This morning the same

request. I give him tylenol, even though I know it does not help

much but I do not want to discourage him from telling me when he

feels unwell.

He was diagnosed last year with mild sleep apnea and

it has gotten worse. When we saw the NSin clinic on Wednesday he

said he would order another sleep study. When I aagain mentioned the

swallowing he just looked at me and I told him I guess I would have

to follow my mother's instincts and take him to emerg if I get

scared. He shook his head. I thought he would at least order

another MRI to look at the tonsils. Nothing and right now I am

getting upset about the neglect. I think the swallowing is not as

bad when he is lying down. Does that make sense. He does not say

either way...I get the silent treatment when he is trying to sleep.

Any questions I ask he begs me to stop and tells me he is fine. Don't

bug me mom....

Please advise me...should I just take im to Emerg?? Does he get

relief when he lays down???

Thanks

Marilou