Larson

[Guest guest]

Hi everyone,

I don't post often anymore but read a lot and pray for our new comers.

Just a brief script is 12 1/2 and was tentatively diagnosed with SoJRA a

month before his 3rd birthday after only 3 weeks. The whole kit and kaboodle

came on fast and strong.His SED was over 120 and WBC over 30,0000. His first

visit he was contracted in the chair position,burning up with a fever and the

description of the stills rash was nothing compared to his whole body being

covered in hives and welts.

Fast forward to age 4 you could't get Enbrel due to such a high demand and a

huge shortage.From this list I heard of a phase 4 clinical study at Cincinnati

Childrens and went for it.He met the criteria and got to start Enbrel when

thousands could not. After 9 days the miracle happened. Maxed out on the anti

Malaria drug Plaquenil we dropped it, a long 18 months of pred very slowely

discontinued.His maxed out dose of NSAID weaned away and then the 25mg MTX

slowly tapered. He made it to 2.5mg MTX sub q for 2 months and 2 weeks and both

wrists lost almost all ROM and some ankle involvement.OH,the resistant lft ankle

got drained and injected twice in 2 1/2 months before Enbrel.

We started our journey all over again putting once again in the hands

of Dr. Lovell at Cincinnati Childrens.Never left him until Dr Graham from

Cincy came home to Nashville.After about 2 yrs Dr. Graham had see a PA and

once dad found out it was NO MORE we are going back to Cinci.Vanderbilt did get

him off the MTX so last July we thought Dr.Lovell woul'd take him off the

Enbrel. Should have known Dr. Lovell is always in charge of some sort of

research through the NIH and sure enough there was a study on the better

understanding of TNF " S. The study is looking for any kind of markers in the

blood that willl someday let doctors know if a child can come off a TNF

inhibitor or not.We had to wait 6 more months due to protocol after being in a

medicated remission for almost 5 yrs.

Well today was the day. no longer has to take Enbrel shots,he looks

great and feels great and to top it all off I noticed how dirty his jeans were

at the appointment.I questioned him about it and due to having to get up at 4am

he went out side and did summer salts(SP) in the front yard to wake up.He ALSO

gave up 9 vials of blood for research,pictures to prove it.

Please pray and knock on wood because we could no longer pay the $856 a month

for insurance knowing come April 1st it would be over $1000 a month. It is not

Medicaid but TN has a program called Cover Kids BUT you have to be without

insurance for 3 moths.We have until March 31st and it's through BCBS of TN. We

will not have to pay premiums but there are co pays but nothing like the $40 to

see a Dr and the lab demanding $500.

WE have to go back in March,April,May,June,Sept and November and it's a hard

trip at 314 miles each way.

Love to all and always remember things can get better but IT takes time.

Becki and 12 SoJRA aka The Barefoot TN Flash.

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