Skylers crisis - any thoughts?

[Guest guest]

Dear all,

This letter is going out to the Stills Disease list, the JRA list and many friends. Some know what is happening and this letter is partially redundant, others may be surprized. Please forgive me if this does not give all of you the whole story, as it is just me scrambling at straws in the wind looking for some miracle or connection to help out.

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It has been a grueling week. Things have gone bad to worse. Skylers condition is worsening and by recommendation of all 4 Dr's we have undergone a search for a pediatric rheumatology specialist, which has been proven void here in AZ. The insurance co. did not belive this need was valid but after threats, tears, pleas and written proof the insurance co. conceeded and accepted that there is no local specialist that can help, agreed to our choice of Dr. in California then proceeded to put restrictions on us such that it is again jeopardising Skylers health. The Certified Pediatric Rheumatologist we are scheduled to see is Dr. Rowlings at UCLA medical Center in Los s. All of Skylers current Dr's have spoken to him and they agree that Skyler is to be immediately admitted to the hospital at UCLA and be seen by a full team of specialists, thus bypassing initial Dr. visits. This is to happen on Tuesday of next week a mere 5 days.

The insurance co. is insisting we wait for some director to review the paperwork he has had for three days now. He does not return calls and can not be reached even by inside sources. Mind you we have been waiting to get this doctor arranged and delayed by them for over a month. They also insist that any needed tests be done locally prior to the trip. Consider the time needed to accomplish this when the Dr. has not even had an opportunity to see his patient to decide what tests to perform!!!!!! Then consider the time required to process the tests.

As of last week, Skyler can no longer walk, sit up, hold a cup or spoon or even rub his eyes when tired. He is prone 24 hours a day, stills rash is constant covering 20% to 100% of his body. Fevers of up to 106 are exceeding the ability of combined Prelone, Tylenol, Ibuprophen, Methotrexte & Enbrel. The nausea is exceeding the treatment by prevacid and zantac, the ferros sulfate was delayed by the pharmacy and his hemoglobin has dropped dangerously low (5 or 4 when it shoud be 11). Ferrous sulfate induces nausea and has compounded the vomiting, inhibiting the other medicines. Hemotologist sais his ability to develope new blood cells is severly diminished and he is severely anemic. His white cell count is over 25,000 his sed rate is likely around 70 to 90. In the last six months skyler has ceased growing due to the medicines (that equate to chemo therapy). He has medicine induced and pain induced insomnia. He eats less than one meal a day and suffers from mild tremmors. Picking him up to just hold him is too painful.

My assignment is ending in two weeks and I must search for a job, yet the Dr.'s estimate a 5 to 7 day hospital stay. The two weeks will be negated by the fact that I will be gone due to this trip so my income is nil. and I will return to no job. His mothers job is in jeopardy due to all the Dr. visits for both herself and Skyler.

The insurance co is refusing to pay any travel or housing and since we are acting without their authorization we will likely have to front medical fees at time fo service. I have exhausted the possibility of possible charitable resources as the time is just to soon (Tuesday) for them to process (Mc House, Make a Wish, Angel Flight, etc.). Round trip air fair for us will total near $1000 on this short notice and Skyler is not in any condition to drive 8 hours. The periferal expenses will also be a challenge while there.

I am out of ideas and free of pride. If you have any thoughts to offer you will find me open to any help. If you have a contact in the Airlines, hotel, rental car, medical field or perhaphs childrens rights advocates, please write me here or call directly. I can be reached at (602) 246-9902. If you get my voice mail please leave a message as detailed as possible. I will try to return long distance calls as cost permits. Please note I will not be available after Monday afternoon.

Thank you all for being friends enough to read this.

V.

aka Sylvanus

aka Sylvan_luvr@...

P.S. A local leading talk radio station (with connections to a TV news advocate) has taken an interest in Skylers story and what we are experiencing with the insurance co. I expect to be interviewed tomorrow. We also have a leading childrens rights advocate on the case now who takes great pride in confronting insurance companies like this. Let see if there is justice in the world.