Saturday, February 1, 2014

This is our Rachel

The last few months have been worrisome.  Since last spring, our 9 year old granddaughter, Rachel, has been feeling ill.  It started out with a rash on different parts of her body and just feeling punk.   The rash would go away and there would be a few weeks with no symptoms.  Rachel was diagnosed with a severe peanut allergy when she was 2.  So thinking she was getting another food allergy, foods were eliminated, added back, and nothing seemed to fit a pattern. 

The pediatrician seemed baffled, tried her on Prednisone, Tylenol, antihistamines, and nothing seemed to make the rash stay away.  In December, symptoms seemed to escalate.  It started with a stinging pain in her index finger.  She had ankle and wrist pain and thought it was from sledding.  She looked pale, itchy scalp, lost weight and was not hungry.  Not only was there more of a rash, stomach pains and leg pains, but also Rachel was spiking a high fever.  She started having more anxiety because of being different because of the rash on her face.   Going to school was difficult, not only because of the pain and not feeling well, but because she attracted attention because of her rash.  High fevers and pain kept her up most nights.  It was always worse at night. 

A visit to Emergency found a new doctor who also was not quite sure what was going on.  He thought perhaps it was arthritis, but the test results did not confirm this.

Again, back to the pediatrician who suggested a visit to a pediatric arthritis specialist.  There was a wait to get into Mayo but a friend of my daughter has a son who was diagnosed with the juvenile arthritis several years ago and she suggested a doctor at Children's Hospital.  They were able to get in fairly soon.

Blood work was taken, information was given and absorbed and then a wait for more blood work the following week to see if there had been an improvement.  Blood work had not stabilized.  Forms of treatment were discussed.  The drug chosen by the doctor was Actemra.  Two injections a month for 1 1/2 to 2 years.  Usually, usually, children go into remission quickly with this drug.

Weekly blood draws were the worst for Rachel.  Now she takes them like a pro.   Rachel's mom, Erika, is a nurse, so the injections will rest in her able hands.  Today was picked for the first injection so she can be closely watched at home for any side effects.  She will still need weekly blood draws since this is an immune suppressant drug.  There are risks.  We simply can't pray hard enough or long enough for success with this drug.

Rachel has gotten a lot of support from her mother's friends, her godmother, Kamber, and family sending gifts and cards, her school counselor and teachers.  Today is a new month and hopefully a new normal for Rachel.  

Juvenile rheumatoid arthritis is something you hear little of.  There are only 300,000 children in the world who developed this autoimmune disease.  I personally know of one other child who has gone into remission from this disease.  To our knowledge, there is no one on either side of the family who has ever had arthritis.  It is not known if it is inherited, but that is always where you first look.

I just want to bring some awareness to this childhood disease.  I know I have learned a lot in the last year, reading all I can about juvenile rheumatoid arthritis.  It is simply amazing to me how the drugs for this disease have improved in the last 10 or 12 years.  Let's just pray that Rachel will improve and be able to adjust quickly to the changes in her life.  I love you Rachel.   Hugs from Grandma Susie.