Soccer yesterday was much better. Jacob was kept on defense and there wasn't as much intense running. At times, he was still limping a bit or skipping. The skipping he does reminds me of how he handled the pain when he was first diagnosed. If you remember that was the first sign we had when he was 5 and started this disease. This morning he woke up not doing to badly. Last week the day after the game he was extremely stiff and sore in the morning. I think he will be okay playing as long as he isn't pushed too far and is allowed to rest frequently. He had a great time playing yesterday! His team also won the game!
On Wednesday this week, is Jacob's appointment with Dr. Foster. We are about 7 or 8 shots into the Humira. I am worried for some reason about the appointment. I read a lot on the support boards on http://www.uveitis.org/. I read all the posts that other parents write about their child's fight with the disease. It just seems like every child has ups and downs with the disease. You never read much about the child's eyes staying clear once and for all. It seems like such a rollercoaster ride. I keep trying to stay positive but each appointment my fear of Dr. Foster seeing cells in his eyes is very real. Each time we get a clear bill of health, it is peace for another 8 weeks. Then it starts all over again.
Speaking of the Humira, there was just a new FDA release on the side effects of Humira. More to worry about. Anyone who is on any of the TNF blockers should be aware of this new risk. You can read up on it at http://www.fda.gov/bbs/topics/news/2008/new01879.html
Parker’s Medical Marathon
5 years ago
2 comments:
I've read your blog from time to time and sympathize with you in your frustrations dealing with Jacob's JRA and uveitis.
I have two children battling uveitis with a complicating condition of cystoid macular edema (CME). This is a swelling of the retina with cysts within the swollen retina. This puts their vision at risk - anywhere from not being able to drive to blindness.
I know that uveitis is an added complication of JRA and our kids don't exhibit any signs of JRA, even though they both had slightly elevated JRA markers. We have been dealing with this for more than a year and even took the kids to the National Eye Institute for evaluation and being seen at UCLA.
I appreciate your comment about the Humira and the dangers. My daughter is on Methotrexate and we're not even comfortable with this medication and any long-term effects not fully understood or disclosed. I have told my wife we will not place her on any anti-TNF pharmaceuticals. Our discomfort with pharmaceuticals has led us to seek out complimentary alternatives. We have been seeing both a Naturopath doctor (ND.) and an Integrative MD (along with our retina specialist and ophthalmologist). Beginning with an anti-inflammatory diet, we have added supplements and our results have been remarkable. Both children are off Pred-Forte and our son's swelling is at the lowest point, with our daughter's also being lower with a ways to go. (Her swelling was more severe). Zyflamend is one of the first supplements we used. I've seen advertisements in the Arthritis magazine too.
I hope this encourages you to seek out complementary choices which may help alleviate discomfort for Jacob and might even help reduce some of the pharmaceuticals. For an anti-inflammatory diet check out http://www.drweil.com/. The site has numerous suggestions for various ailments.
I wish Jacob and your family all the best.
Larry
So glad to hear that Jacob had a great pain and little stiffness afterwards. Hurray!! So nice for him to be able to play like all the other kids. I will be thinking about you today while you are at the appt.
Post a Comment