DONT WAIT FOR THEM TO RING YOU

[Guest guest]

I have read all your e-mails and know how frustrating it is waiting

for an answer or a phone call or appointment.

I think that until recently i was very reluctant to pester the

doctors and scared to be demanding, i was always curtious, obliging

and following the correct procedures, waiting to go through the

channels of the medical system. I live in the UK where we have the

NHS a social medical system which is funded by tax payers and the

government. resources are minimal and get worse every year.

Waiting lists are long and very frustrating.

But not as frustrating as not knowing what is wrong with your own

child, watching them suffer and knowing when they are going down

hill, and there is nothing you can do about it, is quite unbearable,

as you all know im sure. Being told its a virus, cold and many

other things time and time again, they tell you they are fine when

you know they are not, is patronising to say the least.

I was told that on Friday by a Rheumatologist in clinic, i told him

that Fyn was about to have an episode and he just told me he was

fine, in a patronising manner. Like i was a neurotic mother, That

was on Friday the 27th, Fyn went in to hospial on the 28th with an

episode and was discharged today the 2nd, it was the worst episode

yet rygours, fitting, temps of 40 vomiting, ulcerated mouth, could

not be touched, heart rate up to 210bpm and other symptoms, what can

i say, life is hard for us at the moment, And i belive he is going

to start the Anakinra soon on a three month trial, they have been

trying to ween him off the steriods and got down to 7mls alternate

days which has took two months. However they are now saying that

has caused it to activate and he has now got to go back up to 9mls

so we will wait to see. This is the second bad attack in two weeks

and i just pray fyn gets a diagnosis soon and the drugs that can

control these attacks.

We now are being seen at Great Ormond Street and the NIH who are all

helping with solving Fynleys case, But i had to scream to get to

GOSH and over step boundaries in this country to go to america for a

second opinion. i think that if anyone wants there child to go to

the NIH or a peadiatric rheumatologist or get a second opinion you

should just keep on, and dont stop phoning and e-mailing and

insisting until you get an answer, or an apointment.

DONT WAIT FOR THEM TO RING YOU

that is what we did and now they listen and help, good luck to you

all and take care lisa

fyn;s mummy, 22 months, unknown periodic fever