Update on Kara

[Pam]

Still fighting with the school to get her back part-time. Doc called today...he wants to keep her on her current meds for another week before he makes the decision to scope her. They are working a bit so he wants to give them time to work since it has a cumulative affect.

Also said the medication isnt a narcotic and wont cover up the pain, whether it works or not gives him an idea of what to look for.

That was about it.

[jack]

Hang in there. Battling with the medical profession is almost as bad as curing the illness. I know how it is with a sick child. My thoughts and prayers are with you and Kara.

[fish]

What reading I have done on this takes me from a list of certain symptoms and spins off to so many possible answers, including they don't know.

Have they discussed the brain scan piece mentioned in the article to eliminate the polio type afflictions ?

Best wishes,

fish

[fish]

Pam,

On the school thing, give the state bar association a call and ask for a child advocacy atty. or org. to get some advice. Also there should be some child ad groups statewide.

There are a number of issues in this area, possible contagion being key, but schools have a financial interest in being re-active rather than pro-active in areas of children's rights.

Sometimes you have to be in a position to threaten them . So you have to have some knowledge of school law, both fed and state, which info should be available on the web.

Lemme know,

fish

[Pam]

Fish, a couple of things, looks like they are leaning towards her having had a form of the kawasackie virus...I may be spelling that wrong. Not sure if I'm glad or not that I didnt know that before after reading about it...scared the heck out of me. But after talking to another doctor...jack not sure I told you this...and her gastro...they think that whatever it was she had it is not the cause of her stomachaches and that the reason they are so wishywashy is because her blood work kept/keeps coming back normal...she never had the internal markers of the virus or any of the serious symptoms at all. Did that make sense?

Also the medication she is on is not covering up the pain, and whether it works or not or to what degree it does will give me an idea of where to go in finding whats wrong.

Thanks for the advice on the school stuff. I was talking to a neighbor and mentioned some of the stuff you said and she said there is a group called PACER that she thinks could help me. She said most of the time if I jus mention that i will be calling them I will see some action. I have a call into the district office and if I dont hear from them today will start to take further action. In the meantime it looks like I have more research to do.

[fish]

Pam,

I'm a little familiar with Kawasaki. Was guardian for a child who was diagnosed with it.

Is not your child somewhat old for Kawasaki ?

Never the less they should be treating aggressively, or you should know the reason why they are not

Kawasaki can be treated. If not, there can be serious heart conditions later on.

Keep the faith,

fish

[Pam]

Fish, here are the major symptoms of kawasaki:

Red, bloodshot eyes, without pus or drainage.

A red body rash that varies in size, shape, and consistency. The rash rarely blisters.

Swelling of lymph nodes in the neck.

Red, swollen, cracked lips and a reddened ("strawberry") tongue and lining of the mouth.

Firm, swollen hands and feet, with reddened palms and soles. The skin begins to shed and peel between 1 to 3 weeks after the fever starts. Peeling starts beneath the fingernails and toenails, slowly spreading to the palms and soles.

Fever that has lasted 5 days


The AMA says that a child has to have 4 out of 5 symptoms. All kara has was the pealing hands and feet and lips.

Whatever it was she had the doctors are convinced that her stomach aches now are not from that but probably precipitated by whatever she had. I know that sentence didnt make any sense...what I'm trying to say isnt coming through the keyboard at the moment.