Sunday, November 3, 2013
An Update on the JA Journey…
Update on Parker… last Friday, Michael took him to his rheumy appointment as I was told I really shouldn’t travel due to my Grave’s Disease. His doc is about 2.5 hours away. I phone conferenced in. The good news is that his joints looked less swollen and his hands had better color. Parker shared that he is working hard with the physical therapist and that he also thinks that the acupuncture is bringing some relief.
The not so good news is that he is living with a chronic illness and it is by definition, chronic. It is a daily battle. The doc paid some extra attention to his left ankle and foot and even called over their PT to look at it too. She believes that he needs to now see a podiatrist because his ankle has turned in so very much that it is almost hitting the floor and his foot turns out. It makes me so very mad that no matter how hard we continue to fight that this disease rears its ugly head.We do believe, however, that we have slowed it down. The doc said that his blood work looked ok. Only his vitamin D is still very low (this can cause pain in itself…the symptom is feeling like bones are breaking and anyone who has broken a bone, I am sure you can relate). So we are doubling his D. His pancreas is not processing correctly and his insulin is high, most likely due to long term steroid use. But his other organs seem to be doing ok. We are thrilled that this disease is not attacking his heart or lungs anymore. And because the combination of Hizentra (IVIG), Prograf, and Rilonacept are likely the reason for this (in addition to so many positive vibes, prayers, and hard work on Parker’s part) we are not willing to stop Rilonacept yet…it is not stopping the disease but it is doing the best yet as slowing it down. So Parker’s doc is going to work on the “over-ride”, once again, to get this drug approved for him. We love her for persisting for him. He is the only kid in Florida being treated with this drug for systemic on-set juvenile arthritis. Thank God it has been approved for him.
So, now that he is officially out of school, we are working hard on focusing on what he needs. This is quite the balance between our work schedules and medical appointments. But we feel strongly that we must focus on Parker’s health…and we will never give up.So, the new game plan is to up his physical therapy to three times a week, continue acupuncture, add massage therapy, get new orthotics to help his ankle/foot, increase vitamin D, continue to work with his ten amazing docs, get his wheelchair adjusted, and work with a new pediatric pain management doctor to try and continue to decrease his pain meds. He is almost off of his tramadol…what a huge step… and he is down to 3 mg of predinose. We are so thankful for the baby steps forward that he is making.
Michael and I are aware that this disease is going to be a lifelong journey. We discussed this a bit with his doctor. And we are all truly happy for his bit of progress. She is now trying to get him into the National Institute for Health (NIH). We are fortunate that she knows the lead doctor there and she is personally calling him. She will be the doctor continuing his treatment but NIH may help lead us in needed directions through genetic testing; again, another huge blessing for our purple playa.I know this is Parker’s blog for updating…but we are now watching Logan’s JA progress a bit. It seems that if he does a lot on his feet then his ankles swell. He is also getting more migraines and the rheumy thinks that it might be one of his meds; so we are making a switch. We are hoping that the switch helps with not only his migraines, but his swelling as well. He has needed two infusions these last two weeks.
So it’s a balance…between both our children’s medical needs, along with my own. My husband is an amazing individual and helps us all. I love him dearly for that. So our hope is that NIH may not only help Parker, but our whole family because we have such a mix of autoimmune issues. Thank you to each of you who continue to check in on us and support us through this journey!Much Love!