My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Wednesday, April 18, 2012

The Latest & Greatest with Sloan Siblings...


So>>> I jumped with my excitement about "dumping methotrexate" and within minutes of posting on Facebook....I received many private messages. Arthritis friends from all over wanted to know if kids were in remission, why did we "dump Methotrexate"?  Neither Jake and Hannah are anything close to remission. I simply needed them to have a break of feeling like CRAP for 2-3 days after EVERY Methotrexate shot EVERY week.  It was already on my notes to ask doctor if we could decrease dosages...but as he explained there isn't much more we can do for mouth/nasal sores but swish water in  mouths and add folic acid daily. Then he noticed Jake is thinning and losing hair. I just said, " I'm ready to  "dump Methotrexate" . This isn't the first time I've dumped MTX. We took Hannah off Methotrexate for about 2 years because she was vomiting week after  week and so sick! We never saw a difference either way- on methotrexate or not.  At least now I don't have to expect headaches, tired, nauseous, vomiting, no appetite and feeling like total crap from a medication! So for those of you are in awhhhh that I did it...... I simply needed a break for Jake and Hannah and entire family. I'm sure kids will be back on it one day, but for now we are celebrating and happy dancing that "methotrexate is dumped" for the time being. I apologize if I got some of you concerned or worried that I'd discontinue a medication without doctor's recommendation.....but they'll be ok and ENJOY the break!

Jake loving his "Wish Spa" from Make A Wish.
Jake's jaw injections were delayed due to surgeon had to cancel due to a personal emergency.  It is now scheduled in 2 weeks- April 30. Jake will also be having 5 teeth extracted at the same time while under anesthesia. We are hoping it will bring Jake relief and improve his jaws and increase his appetite. The surgeon has talked to Jake and I about him needing  jaw surgery as he gets a little older. It would involve them removing one of Jake's ribs and replacing it with his jaw.  The good news is arthritis doesn't seem to attack the new "rib-jaw". But that's down the road.....we are wanting to buy as much time as possible so he can continue to grow.  Surgeon has asked us to keep the aggressive treatment and hoping injections bring relief. Just don't know for how long????

We are still are struggling with Jake's weight. He has not gained any weight in 2 1/2 years but has grown in height. He is getting thinner and thinner and losing muscle mass. We have tried a few simple approaches; shakes, protein pills, extra vitamins and encouraging high calorie, fatty foods. Jake continues to have diarrhea daily and throws up here and there and his appetite is up/ down.We were thrilled Jake's upper/lower scopes were good and only indicated he is lactose intolerant through his GI work up.  Jake has had additional  liver tests after a few liver levels were abnormal. He has been referred to a pediatric endocrinologist at Shands Hospital. We are trying to put our finger on if it's just the disease itself, medications or something else ( liver related). Jake is back in Physical Therapy and aquatics 3x weekly. He was disappointed today to see he has lost 2 lbs. and Mom has gained 5 lbs.  I'm leading by example....food is good! lol

" Happy Hannah"
Hannah...... HOPING her eyes are healthy with no cells. Today, her pediatric rheumatologist noticed her eyes??? She has a appointment in 2 weeks, but am calling in the morning to be seen ASAP.  I DO NOT like the thought of eye involvement!!  We tweaked Hannah's medications slightly today. We increased Celebrex to 100mg 2x daily, added folic acid daily to help with mouth/nasal sores, decreased Enbrel to 1x week, and increased solumedrol- steroids to 500mg.  Ohhhh...and "dumped methotrexate". Hannah got orders to start physical therapy and aquatics. Her knees and wrists/ fingers were warm/swollen today when MD looked at her. He asked if Hannah is dancing? Then, recommended Hannah only dance one class and let it be the least impact on her joint.  NOT-- Hannah has her 'Big Show" in a few weeks and would never quit at this point. I love her spunk....it carries her through most everything.  She so enjoyed dance class last night, but then hopping throughout the house and crying in knee pain afterwards. Pictures show a happy girl.....but she hasn't been felling well lately. Discussed "steroid rages" with physician...... I'm thinking they need to give caregivers and siblings meds to COPE with these rages! My heart breaks for her..... Hannah has a endless heart, but boy O boy there are days I wonder if we both will survive! Hannah was hoping for the past week, we'd come home with a solution or prescription for her mouth sores that HURT badly. Disappointing..... but Mama bear helped by "dumping methotrexate". YEA!!
Nothing crazy going on, just same ole...... Jake and Hannah continue their weekly massages and LOVE them. Am supposed to be pursuing acupuncture.....haven't decided who to try locally?? Horse back riding lessons are FUN and gives kids something special to look forward to at end of each week. Just 3 more weeks until our family is participating in Tampa's Arthritis Walk.  We have not been as involved as previous years.... not having it locally has been different and more challenging for me to recruit sponsors, donors, walkers.  Time has been a issue too-- not enough hours in a day! Homeschooling continues to ROCK!  There is plenty of time to register to walk with our family or make a donation.  EVERY donation gives us HOPE for better medications for kids and HOPE for a CURE! Visit: http://awtampa.kintera.org/myjraheroes.  No matter where you live across the country- there are local Arthritis walks happening in May. Hope there are a few more walkers across the country taking the time to walk and think of these 300,000 children who deal with arthritis everyday and need a CURE! 



4 comments:

  1. Your blog really hit home for me, I was diagnosed with JRA at 18 months, the same kind your son has. So I can relate to what you are going through. How brave to have injections at such a young age!! You seem like such a loving mother and are doing all that you can. I have recently been helping a family whose daughter was diagnosed with JRA two yrs ago. We are doing the JRA walk in June in PA :)
    I am posting my blog and am following yours to help as many families as possible. :)
    http://princessintrainingmylifewithjra.blogspot.com/

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  2. About dumping MTX... obviously you know that it is a matter of time before you're going to want it back. Doctors must have went berzerk.

    My daughter used to get fairly nauseated for 24 hours after MTX. She is on a fairly high dose. When we switched to a low-carb, low sugar diet, the next day nausea disappeared completely, in fact it no longer even matters what time of day we give it to her (we used to do it at night to at least avoid 10 hours of nausea while she slept.

    My daughter is severe SJIA as well.

    If this does interest you, I warn you to do the diet switch gradually over a couple months. The microbe die-off that will result if you go too fast could spike symptoms, and even elevate liver numbers.

    With so much inflammation in your family, I hope you are considering a microbial cause. Of course you know SJIA has been shown to not be genetic or familial. Rather than insist that it is, consider for your children's sake that it may not be, and that fact points to a common link that is external. Did you know that babies are born with microbial population already in their gut, and that the mother has a role in passing on that footprint. Combine that with early heavy antibiotic usage, and you might have a reason to start looking at something other than symptom control.

    I wish you luck. You're children are beautiful. Things are going to get tougher and tougher while they get older. Look into diet control and alternative stuff, while they are still compliant.

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  3. Mayo clinic paper linking gut dysbiosis in the micriobiome to arthritis. All these supposed autoinflammatory and autoimmune disease are gut dysbiosis. Anyone but a rheum will tell you that. You need to get your kids in the hands of an integrative doc..... TODAY

    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0036095

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