Friday, May 8, 2009

Two different kids, from two different states: One rare disease

Yesterday Jacob had a follow-up at Dr. Foster's. The appointment was all but routine for one special reason. Yesterday we met our blogging friends Amy and Jenna. Jenna is five years old and is fighting uveitis and Jra just like Jacob. Jenna and her mom come from Maine to see the same eye doctor that we see here in Massachusetts. We have both been seeing this doctor but had never had coordinating appointments. Amy and I have become friends online, as we have supported each other through our children's illnesses. It was great being able to meet them finally!!
Jacob's eye's continue to do well. There is no sign of inflammation. His cataract remains stable. The only change this visit is that his eye pressure in his left eye is 20. His right eye continues to be around 17.

I called about his blood work yesterday while there and all was normal but his sed rate has gone from zero to 28. The sed rate is a marker for inflammation in his body. For whatever reason it is up this time, I hope it goes down next month!

Please check out The web page of our friend Mia, who went in for cortisone injections and knee draining yesterday. Mia is in an awful flare up and hopefully will get some much needed relief from the procedure yesterday.
Please check out Jenna's and Mia's updates on their blogs. The links are on the left.


Lesli said...

Hi there!!

I just saw your reply about Ayla's mouth sores...I appreciate the advice and I will definitely ask the doctor about that. They said there was a mouthwash that they could prescribe but they thought she was too young for it. They told me to try oragel if I wanted but it might burn.
She actually seems like they are not bothering her so much (right now) so I think I will just hold off on that right now. We have an appointment coming up so we will see what they say then.

Thanks so much!! I hope Jacob is feeling well!!

Alka said...


I have JRA too. I was diagnosed at age 5 as well. I'm now 18. I just wanted to say, my wishes are with you and your doing a great thing by being so open and supportive of this, it will really help him later on. I don't want to leave m y email on this cause its open to general public, but if you would like to say anything, and could some how leave a comment below on this page or some where i can see it, i will check back soon.

best of luck hopw for the best and hope to hear from u soon?