Tuesday, December 28, 2010
From the outside looking in, you can't understand it. And, from the inside looking out, you can't explain it.
Our family had the pleasure to join Camp Boggy Creek's holiday party in December. It was here that I read something that I can totally appreciate and it sums everything up. "From the outside looking in, you can't understand it. And, from the inside looking out, you can't explain it." That is how I feel when a friend or family member or school personnel says, "but they look so healthy and are so happy". I find it very hard to explain to someone what JRA is and how it is more than just achy joints! A friend recently asked, "what does Hannah's liver have to do with her arthritis"? I'm getting a bit drained and almost don't have the energy to explain....
Another day in the swamp for Jake on December 14th. Hoping to get another dose of Remicade/Solumedrol to get him feeling good for the holidays. Jake's rheumatologist took the extra time to talk with Jake today. Jake told her on his own that he hurts all over and wants it to go away. Dr. E looks at Jake's joints,hears his jaw and neck popping and listens to mom about his recent chest pains, increased joint pain and CRANKINESS! I didn't have to explain to Dr. E about Jake being miserable-- he was indeed miserable today at Shands. Dr. E even told him to "be nice to his mom, it's not mom's fault and that your mom is trying really hard to help you". So today's game plan was to increase Jake's Remicade and to schedule his next Remicade IV in 3 weeks rather than 4 weeks. Today we also added another pain med (toradol - he got as an infusion). We also got a prescription for Tylenol 3 with codeine (prn)to use on Jake's bad, bad days. . To top it off- we added his Enbrel injections back! I didn't even know you could take Enbrel and Remicade at the same time! Jake was not thrilled to hear he's back to 4 shots a week and continue his Remicade infusions. At this point-- whatever it takes to get him feeling better- I'm willing to try!
But O My.....how much more medications can a little guy take?
Since our experience with the TMJ Doctor was not a positive one-- we will be exploring another TMJ specialist who can do the steroid injections into the TMJ joint for Jake. Jake's jaws are getting bad again- clicking, popping, shifting and locking! There are some days...Jake warns me, "mom, I'm not going to be eating today because my jaw won't open". It breaks my heart to watch Jake grab his jaw and scream "ouch" as it locks on him with no warning!
Jake's recent chest pains are from his costochondritis. The poor kid has no break where his arthritis has affected him! Not as common- but yes Jake has inflammation and severe sharp pain in the costosternal joint. People describe the pain that mimics of a heart attack. He also takes clinoril twice daily which is suppose to help especially with spine inflammation. These are a few of the things people can not see from the outside looking in. So when Jake and Hannah's PE coach didn't want to follow 504 plan-- and Jake comes home talking about significant chest pain and he had to run to play game with friends........ Again, from the inside looking out-- how can I explain it so he understands??? Does he really want to hear that his toes look like sausages? His ribs are so swollen it is causing him severe chest pain? His wrists are so bad that he can't unzip his own pants some days? And he selects which foods he eats because his jaw may be locked during lunch? Or he may have stomach cramps and nausea due to his medications? And he has no appetite and, tired and feels like vomiting because he took his methotrexate (chemo) 2 days ago? Meanwhile- Jake attends school everyday despite how he feels, or how long it takes him to walk without bending over like a old man. He manages to maintain his grades (most all A's) despite how much pain he is in or days he has to miss school because of doctor/medical appointments, infusions. And if anyone asks," How are you Jake? " The answer is fine. My kids have learned already in life- very few people really wants to know how you are feeling, and they most likely don't understand, so why share!!
Hannah...... we awaited to hear from her doctor regarding her abdominal ultrasounds that were done in November. We weren't surprised- her liver, spleen and lymph nodes are enlarged. We did the next step and saw a pediatric GI MD. It was way past due- but as a mom-- I was not wanting to put Hannah through the "work up" at such a young age. We tried no fruits/veggies diet with high fiber foods and a very high dosage of Prevacid for a few weeks- no positive results. Hannah continues to complain a lot about her tummy, and has awoken many nights crying with severe abdominal pain. Next week- Hannah will have the pleasure to have a EGD (upper endoscopy with biopsy) and colonoscopy. I'm not looking forward to a two day prep with a 6 year old. How will I ever convince her to drink magnesium citrate and no foods for 2 days prior to procedure? Won't dulcolax and enema's be fun for her.... Do I even attempt to explain procedure to her or just hope the anesthesia does its job? The GI doctor was outstanding, and truly put me at ease. He believes Hannah has crohn's disease, but none the less systemic JRA affects the organs as well. Dr. K explained that if it is just her systemic JRA or if it is crohn's disease-- the treatment is the same. REMICADE -A drug that we are all too familiar with! Hannah's rheumatologist had just talked to us about starting Remicade or maybe Anakinra (depending upon her eye status and GI results). Not sure what to expect from the colonoscopy and EGD. I have accepted that Hannah will have to start Remicade, too. Trying to keep an open and positive mind- praying for the best of what can be possible! We will wait and see what is next for Hannah in her JRA journey!
Am so thankful for Camp Boggy Creek and my parents (and their home in TN). These are two places where Jake and Hannah can forget about what they have and be a kid! Camp Boggy Creek is a special place-- Thank you Camp Boggy Creek and donors for building dreams for Jake and Hannah and many others with chronic illnesses. I have a hard time explaining to others what a piece of our life is like on a daily basis- but friends at camp Boggy get it without saying a word! Again, "From the outside looking in, you can't understand it. And, from the inside looking out, you can't explain it".
Saturday, December 4, 2010
Fall is for fun festivities not fallbacks...... Trying to make things easier on me, decided to have Jake and Hannah's Rheumatologist appointments at Shands on the same day. Not sure if that was easier on me or not.....my head is just now stopping to spin!
Many of us living each day with a chronically ill child have days or weeks that are overwhelming. This was my week to be on overload! While Jake is hooked up to the Iv pole- getting his solumedrol and zofran- I try to explain Jake & Hannah's past 30 days to Dr. Elder and her nurses. 30 days- that shouldn't be difficult. Meanwhile, Jake and Hannah had special surprise visitors. Their family pals from Camp Boggy Creek came to visit Jake and Hannah in the infusion room. Positive distractions are always nice, but today Jake was in no mood for visitors. He was mad to be hooked up to IV's and not down on the floor playing board games with his pal, Roj.
So after Dr. Elder gathers info, reviews current labs and examines Jake from head to toe, she shares that his aggressive Enbrel/Methotrexate/Solumedrol/clinoril treatment was not affective. We have reached the point to move on and try another biologic agent- Remicade. Thoughts are racing through my head....knowing long term health effects are unknown, the increased risk of cancers, and the toll it will take on Jake's immune system. Besides a miracle and healing from God, we don't have any other better options to help Jake to feel better and try to get this disease under control. He has active joint pain/arthritis literally in every joint in his body (even between his ribs, jaws and his toes). On the positive note, Jake was pleased to know that he will have 3 less shots a week (Enbrel) once he starts Remicade infusions.
Dr. Elder moves onto kid #2- Hannah. She is impressed with a photo of a recent rash, notices swelling on several joints, swollen lymph nodes, sensitive jaw and tummy. She is mostly concerned about Hannah's eyes and the status of her internal organs. Hannah has always had a history of increased joint pain leads to severe abdominal pain. Hannah has been awakening at night, screaming crying about tummy pain. Dr. Elder discusses the need to consider changing Hannah's medications too. Choices include Anakinra (kineret) or Remicade. Both of these are more effective treating systemic JRA. So we decided to wait until next eye appointment ( Hannah currently being treated with Alrex steroid drops and is seen every 2 weeks by ophthalmologist) and have abdominal ultrasound. Meanwhile, we increased Hannah's Enbrel to 75mg a week (3 shots a week) and discontinue Mobic and add Celebrex 100-200 mg daily. Discussed doing a MRI of her jaw, but will wait until she shows signs of difficulty eating or weight loss.
As Jake finishes his infusions, I sit next to him and think about all the things that need to happen within the next few days. I very quickly became overwhelmed! Jake is moving onto Remicade, I start Rituxan myself tomorrow and Hannah increases Enbrel and starts Celebrex as we wait for more answers on her eyes and abdominal issues. Not sure if it is wise to have Jake and Hannah appointments together on the same day. Another day in the swamp...... a treat to see Grace and Raj, our Boggy Creek friends!