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Mono update

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So sorry! Praying the steroids work!

~Pattie~

" What matters is not great deeds, but great love. " ~ St. Therese of Lisieux

Family website: www.shwachman.50megs.com

_____

From: [mailto: ] On Behalf Of

Becky McClure

Sent: Saturday, May 13, 2006 7:30 PM

Subject: Mono Update

Well- thought she was having a heart attack today-she was having

terrible chest pain-called the doc-sent us to er-wanted us to go to one of

the two children's hospitals in our area-both about 30-45 minutes away-did

not make it that far-ended up at one of the satellite hospitals. She has

reactive arthritis-the virus has settled into her joints-especially her

fingers, toes and chest wall-

They started her on major steroids-so we will see. It was very scary-

Becky in IN-mom to Maddie the PID-and the sickie

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Becky,

so sorry to hear of 's complications... for the chest, have they

considered pleurisy? When before got so sick with her mono year, she

came out of a race at a swim meet having severe pain and difficulty

breathing....the urgent care dr (pa) thought it was stress (haha) but when we

returned next day, her own doc recognized it right away as a severe case of

pleurisy (an inflammation of the lining of the chest wall and lungs.. from the

virus settling there, causing sharp pain with any attempt to inhale or

exhale...this year, for 2 months now she has had costal chondritis, an

inflammation of the ligament between the lungs/rib area and sternum, causing her

chest to hurt each breath but pain not as sharp as pleurisy) For some reason

the mono has left her with an added vulnerabiity around her chest and

lungs...course, CVID probably has something to do with that also...

It is so scary - especially when the pain is so acute. I feel badly for all

that is experiencing...didn't she seem to be doing a little better, able

to do school work etc? Do they think the reactive arthritis is something

transient that will disappear when she is over the mono ? It's just my

opinion, but if infectious disease doc finds nothing else obvious, I would

really push for the antibody levels tests again now...if she is CVID or

something, wouldn't IVIG help her fight this?

weighs especially on my heart as she seems to have many similarities to my

amanda last year..and our girls are basically the same age.

I will keep in my prayers and please keep us posted as to her progress.

nancy

mom to amanda, 16 next week, cvid, chronic daily migraines

Becky McClure <beckymcclure825@...> wrote: Well- thought she was

having a heart attack today-she was having terrible chest pain-called the

doc-sent us to er-wanted us to go to one of the two children's hospitals in our

area-both about 30-45 minutes away-did not make it that far-ended up at one of

the satellite hospitals. She has reactive arthritis-the virus has settled into

her joints-especially her fingers, toes and chest wall-

They started her on major steroids-so we will see. It was very scary-

Becky in IN-mom to Maddie the PID-and the sickie

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Holy Cow!!!

Poor kid, I hope she is doing better soon. I have to say I have a bad

feeling about her immune system.........it just doesnt sound right,

does it, for it to get this out of hand? I hope you get some answers soon.

valarie

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Becky:

This is probably wayyyy off base but I felt I should mention it. I have had

three or four occasions in my life where I had terrible, horrible, awful chest

pain, the first time I did think I was having a heart attack even though I was

only 22. It was gas!! Ohhhh the pain is terrible. And it does not feel like

it's in your stomach, you aren't burpy or farty at that time. I learned to

always have simethicone on hand in case that happens because you are in too much

pain to move, let alone go out and buy medicine.

Just a thought. Hope she's better no matter what.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

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