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.

31 comments:

  1. Hope Rachel gets much better soon. She looks just like you, Susan!

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  2. Thank you for your kindness, Barbara.

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  3. I have been thinking about you, Susan, and praying that Rachael is doing OK. I hope her new medication works and her symptoms subside. I can imagine how worried you all area. Just know that lots of good wishes and prayers are coming your way. I hope you have a very happy birthday weekend and treat yourself to a big slice of cake. If you lived close I would bake one for you.

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  4. Thank you, Cathy. Not sure about the cake yet, Cathy. But it will be a good meal for sure.

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  5. Susan, your Rachel is beautiful. I'm so sorry to hear such a precious child has had to go through so much. I know it's been hard on her parents and you as well. I'm praying (right now) that the medicine works well and that the course of treatment will be successful.

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  6. Susan,

    It is so difficult when a child is ill. You and your family are in my prayers. I hope this drug is the answer.

    Carol

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  7. Thank you. Chris. Being a nurse, you can understand what this is all about. Thanks for your prayers.

    Carol, thank you so much for your concern. I appreciate it.

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  8. Susan: So sorry to hear that your sweet Rachel is going through this. It is so hard when this happens, especially when a child is involved. I do hope the medication gives immediate relief and that she will be on the way to a rapid recovery.

    Best,
    Bonnie

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  9. What a beautiful child! A granddaughter is such a blessing to a grandmother!
    Your Rachel has already gone through an awful lot and it will all end up giving her maturity beyond her years. Thank goodness a diagnosis has been made and that there will be some relief. Susan, of course I will pray for your Rachel - that she feels much better soon and that the treatment will bring about lasting results.
    Hugs to you from me.

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  10. RA is awful at any age, but it must be unimaginable for a child. My dad suffered from it when today's med's weren't available - let's hope for a cure for Rachael, not just management. I will keep your sweetie in my prayers.

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  11. Sorry to hear that Rachel has been so sick. I hope and pray the meds help bring her relief.

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  12. I too have been praying for Rachel. I cannot imagine how painful it must be for a child, but amazingly they take it much better than some adults. Big prayers and hugs for you and your family soon. I hope she is on the road to recovery.
    Sam

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  13. My thoughts are with you and your sweet granddaughter. I hope the drugs will work for her and she will be better soon. Big hugs from me.

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  14. My heart goes out to Rachel and I hope she goes into remission soon. It's so hard for a child to deal with issues like this. A prayer and hugs to you all, Susan!

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  15. Rachel is a beautiful young lady! You are right when you think of arthritis you don't normally think about children. Thanks for sharing this with us and prayers that this drug will help her back to feeling good again.

    Velva

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  16. My heart and prayers for Rachel and the family. It is so difficult to have dealt with the unknown for so long and then to learn of the challenges facing everybody. Prayers....

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  18. She is a beautiful little girl and I am praying for her and her parents and you and the Trout and everyone who loves her. It is so difficult to watch someone we love suffer. I hope the medicine will work. I only knew of a kind of juvenile rheumatoid arthritis because of reading many books by Rosemary Sutcliff who has Still's Disease, also called systemic juvenile RA. She was born in 1920 and I am sure there was not much in the way of effective treatment. She lived until 1992 and wrote many wonderful YA books set in Roman Britain and other early historical times. May this treatment work only for Rachel's good!

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  19. Dear Susan,

    How very difficult this must be for all of you. Know that Bob and I will pray for Rachel's recovery and have asked our son-in-law to have his congregation join us in those prayers. We will be thinking of her and hope that medication will control her symptoms and allow her to once again be a child.

    Affectionately,

    Mary

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  20. I'm so sorry to hear of the worries your family has been through, Susan. Your granddaughter is adorable and I hope she can start it feel well again soon. Thank you for bringing awareness to this form of juvenile arthritis.

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  21. Poor child! Thank goodness you know what she's up against, and I am so sorry she is burdened with this at such a young and tender age. My prayers to her and her family and thank you for the awareness.

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  22. Oh, I have so had you and Rachel on my mind... and heart... and prayers. The simple words, "I love you, Rachel. Hugs from Grandma Susie," just squeeze my heart 'til tears slide down my cheeks. Oh, that we could take their hard times on ourselves... so willingly we would. Keeping your little precious one in my prayers... tanna

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  23. Prayers go to Rachel and her parents, and you. I am so glad you have a diagnosis so she can get the proper treatment.

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  24. I hope the meds do the trick and that she is soon totally recovered. It's so hard to see children ill.

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  25. Hello Susan...popping in to say hello and see what's happening over here.
    To my surprise to read about your grand-daughter. Wow, sorry to read about her health issues. Praying for her healing and treatments etc. My heart is with you my friend.

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  26. Oh, Susan! I am so sorry for what Rachael has had to undergo, and finally having her difficulty diagnosed has to be such a burden unloaded.

    We pray for continued healing for Rachel and the family. She looks like a tough gal and with our thoughts and prayers, she'll be sure to rebound.

    We send our love!

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  27. Dear Susan. I am so moved by what is going on with your beautiful Granddaughter. I hope and pray that all goes well with the treatment. Rachel is so precious. Hopefully the treatment will work. Our kids should not have to suffer. My prayers are with you and her. Hugs, Penny

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  28. Susan:
    I was so sorry to hear about Rachael..and thank you so much for sharing with this post. So important for us to have information like this and to stay up to date when it happens to one of our own. Keep us posted on her progress, will you?
    I am praying for her and for your family and hope this is the answer you've been hoping for.
    Hugs, Barbara

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  29. I've never heard of this... How sad and awful that it took to long to sort out.... Hopefully, she will be back to feeling healthy again soon. She looks like a little darling.

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  30. Susan... I keep you and Rachel on my mind and in my heart and prayers... sending hugs to you... miss you. t.

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  31. How very sad for one so young. I hope the treatment helps and our best wishes and prayers go to her. Hope that you are both well Diane

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