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After reading all of the postings I am becoming more and more

irritated with the lack of knowledge that the " medical profession "

has with the condition. How on earth does information travel

between the " experts " down to GP's........

I am very lucky .... it looks as though Kirsten has been diagnosed in

record time as opposed to most stories, ( we are expecting her next

episodet his Thursday and already have an appointment for the end of

August to discuss the final diagnosis and to schedule a Tonsilectomy

which I am determined to try.

If Verizon Wireless found a problem within their system they would

make sure all Verizon Wireless distributors knew about the problem -

you would think that the medical profession would have a system to be

able to educate existing pediatricians of this condition. This is not

taking away from my pediatrician who was determined to locate the

problem which indeed he did - but until meeting Kirsten had never

heard of the condition.

It upsets me and worries me that Kirsten will be sick again this

week. She is in pain and I can do nothing about it but be by her side

and snuggle her. My son (2 1/2) gets distressed when he sees his

sister sick and constantly wants to know if she is going back to the

hospital.

Would like input into how we can get this syndrome recognized so it

is as well known as Measles.

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