Uveitis is on the attack...

Our son is currently battling a terrible flare up in his eyes. It hit suddenly and fiercely. I got him straight into the eye doc yesterday and it was confirmed that he had many "live cells" in both eyes and a large amount of inflammation. We started Pred Forte eye drops 5 times a day now to try to get things under control quickly. I talked to his Rheumatologist and we are going to be adding Humira along side of his weekly injections or we are going to have him start monthly iv treatments. The arthritis in his joints has been controlled over the course of the past few months, but now we are an uphill battle to save his vision. Wesley's rheumatologist and Opthalmologist are discussing our treatment plan this morning, so I will keep everyone posted as we get more info. Please keep Wesley in your thoughts and prayers as he fights his own little body...

Rheumatology update!

We just got back on Jan 6th from seeing his rheumatologist in Cincinnati. The doctors were very happy with the way his joints looked. They said that there was no fluid and they looked "perfect" right now which brought the biggest smile to our faces! The down side is that they are still very concerned with his uveitis and in fact, they squeezed us in there at the hospital in the Opthalmology department to get a good look at what has been going on. The good news is that he currently has no "floaters" but the bad news is that the cells that were active a little while ago have now "died" and are just hanging out in his eyes b/c is immune system isn't quite strong enough to absorb them. If that doesn't happen by our next appt in 3 months, the OP doc said after he keeps flaring it will just continuously build up and can cause a lot of visual issues. So, in the mean time, we pray for healing and no more flares! Uveitis is such a scary thing. I can't believe that after 3 years of dealing with his arthritis that suddenly is attacked his eyes, it's just so unpredictable and I absolutely hate that. The best way I know how to deal is to just get through each day, b/c we just don't know what tomorrow will bring. Wesley is my hero for going through all that he does and still manages to smile. He takes it all stride and he never forgets all of the small and meaningful things about life. I have learned more about myself by being his mommy and I am very blessed to have that sweet little angel in my life! My children are what make life worth living.

A new diagnosis...

First off, our visit to the Rheumy in Cincy back in Oct went very well! Wesley's limb difference in his leg has caught up to the other and we were able to get the lift out of his shoe! Who hoo! He still must wear orthotics of course, but it's not nearly as bothersome for him now. There was also very little fluid remaining on the joints. Dr. Sikora said it maybe also be from his hyper mobility, he is going to keep an eye on it and see how it progresses. The only "bad" thing that was said basically was that his little legs are tightening back up, esp the ham strings, so we needed to treat it more aggressively with more PT stretching at home.

Now, onto our past two weeks... a complication suddenly showed its ugly face. Wesley's eyes became bright red off and on and then stayed that way over the course of two weeks. I new something wasn't right. Everyone else had noticed and said that it was probably allergies and not to worry, but once his teacher brought it to my attention and it never went away with visine or benadryl, I went with my gut instinct that something clearly wasn't right and got him in early with our Opthalmologist. After a slit lamp test, it was confirmed... Wesley now has uveitis. Uveitis is a complication of JIA where the arthritis actually starts to attack the eyes causing inflammation and can lead to total blindness. It was and has been a scary time for all of us! Wesley started on steroid drops in his eyes, but had a bad allergic reaction, so we had to switch to another drop for awhile. After two weeks of being on steroid drops, we are pleased that his body responded well and there seem to be no "floaters" at this time! We will follow up back in Cincinnati on Jan 6th!

PS- If you wouldn't mind, say a little prayer for our family during the holidays, as it is a very rough time for us right now. My mom, Tamara Smiens-Long, lost her battle with Cirrhosis of the Liver on October 5th at 10:53am at the young age of 51. Life is so precious and never take one moment for granted!

Another appt coming up!

In about two weeks, we are heading back to Cincinnati for an appointment with Wesley's Rheumatologist. I am anxious! Wesley just recently got over a nasty virus that plagued him for 5 days, in which, caused a bad flare up in his joints. I put my hands over his knees and I could feel the heat just pouring off his little legs. Every step that he took, he tried to do carefully so that he didn't cause himself that much more pain. It's a terrible thing to see your child suffering like that knowing that there isn't much you can do to allieviate that for him. He got through it though and overcame it and is now on the mend and back to all smiles! I am SO frustrated with this disease! I want so badly for there to be a cure! It haunts me when I think of Wesley's future and his quality of life. The meds he's on now are toxic to his body and the majority of them can cause cancer, renal failure and liver failure... but if he isn't medicated, there'd be no way that my sweet little boy could even begin to try to live a normal life. The arthritis has already caused excessive bone growth and calcium build up in his joints and his legs are "in-turning." It's crazy how quickly this disease progresses. Sometimes I get so frustrated that there's so much attention on other diseases and hardly any on arthritis. Our children are just as important and just as desperate for a cure! I take it all in stride though and I make sure to not take each day for granted. I am so thankful that we took him to Cincinnati Children's Hospital for care. The staff and doctors there are amazing! I can't even put into words my gratitude for them! When he was sick last week, they ordered a battery of tests and THEY called every day for updates on him. They treat him not as just a patient, but like a child of their own and that says A LOT! His Rheumatologist is so good at what he does that he flies in every Friday clear from Baltimore, MD where he works at John Hopkins during the week for his expertise! I am just in awe of him and the impact that he is making on Wesley's quality of life. His next appt is on Sept 30th, so I'll write more afterwards! Wish us luck!!

One step forward... two steps back.

Wesley's arthritis is back. He goes to physical therapy 3 times a week for an hour at a time and the physical therapist noticed fluid coming back in his right knee. Wesley has complained the past three mornings and seemed stiff, but I really didn't think much of it since he was considered to be in medical remission. I sure was wrong. It's so frustrating and sad to see this disease ravishing his body. We go back to Cincinnati on the 29th for his July 1st appt, so I am really eager to see what his rheumatologist will say and do now. I put a call in yesterday and he wants him to start back on anti-inflammatory medication until we get there.

On a "good" note, last night was injection night for Wesley. For the first time, he asked me if he could give himself his shot. I agreed and he did an amazing job! I helped him to prep his injection spot and I filled the syringe and he stuck it right in his little thigh with no hesitation! I almost started crying, but I held it in. I had gestational diabetes that was insulin dependent when I was pregnant with Wes and Leigha and I couldn't even give myself my shot and there was my 6 yr old little boy giving himself a dose of chemotherapy. He amazes me with his strength and determination to try to beat this disease. We will never give ip this fight until a cure is found and my little boy and all of the other sweet little kids stop suffering.