Henoch-Schonlein Purpura -- MARY

January 30, 2005

Read in a response that your daughter had/has this....going through

this with my 4 year old daughter right now (non-mito) and we are

really having some BIG problems.....would love to chat with you

regarding your experience with this. Not sure this list is

appropriate...could you email me at ryan4me@... Thanks!!!

>

> Tamara,

> I don't know much about celiac, but my daughter was worked up for

it

> (later ruled out). She had petechiae (never sure of that

spelling!),

> joint pain, abdominal pain, vomiting, and blood in her stool and

> urine. At the time, my son was diagnosed with LCHAD, and my

daughter

> had tested negative for LCHAD. We had similar experiences to

yours.

> Doctors said it was in her head (I had the same response as you -

how

> can you make that stuff up?). I ended up taking her to a

Nephrologist

> who diagnosed her with Henoch Schonlein Purpura. She went on

> Prednisone and the symptoms immediately subsided, but have come

back

> (many times). In the meantime, my son's LCHAD diagnosis was found

to

> be incorrect, he actually has Mito. It appears my daughter has

Mito

> too. Nobody is quite sure how the HSP relates but whenever she is

ill

> or stressed (it even happened when she had a bunch of mosquito

> bites), these symptoms come out. She is on the cocktail now and

not

> on any prednisone, doing overall much better. I was interested in

> your post as the symptoms of your son sounded SO familiar. You can

e-

> mail me off list if you like.

>

> Mm to Jimmy 17 and le 15, both with Mito

January 30, 2005