Newly diagnosed

[Guest guest]

Hello everyone,

My name is Barb and my 2 1/2 year old daughter, Ava, was diagnosed with

about 2 months ago. It has been a frustrating journey which began about 16

months ago and has been filled with too many doctors and too many tests. When a

specialist finally mentioned that all of Ava's symptoms seemed to match those of

something called I was relieved to have a name to put to this but very

discouraged when he told me that there isn't much known about and that

there isn't any " cure " for it.

After doing research on the internet, my husband and I were able to educate

ourselves about and the treatments that others have used with some

success. We have given Ava prednisone now four times and each time it has

stopped her episode within 4 hours. It did increase the fequency of her

episodes to every two weeks the first three times we gave it to her. After the

third round of prednisone we saw a specialist at Children's Hospital in

Philadelphia who recommended that we place Ava on an antibiotic for 30 days to

possibly kill any bacteria that may be causing the episodes. Ava had another

episode 14 days into the cycle of anitbiotics. We stopped the antibiotic

and gave her the prednisone which again worked immediately. That was yesterday.

She is happy, healthy and playing hard with her two big sisters today.

I was very interested in the information posted this morning by Dr. Lierl

about using Singulair. I think that we will speak to our phyisician about that.

I am both happy to have found this group and sad that it has to exist.

Everyone keeps telling us how we should be grateful that this illness is not

life threatening. I agree and I am grateful, although what no one else

understands (except all of you) is how life altering this illness can be for our

entire family.

Barb Kolo

mom of Ava, 2 1/2,

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