Thursday, May 6, 2010

I have decided to create a blog to keep everybody update on Jackson's recent medical issues. It wasn't working very well on Facebook and I have spent too much time on the phone and not enough time with my little boy!
Jackson's problems started out with a droppy left eyelid (medically called ptosis of the eye). Something we assumed would be minor and has been nothing but. I took him his ped when I first noticed it in March he blew it off as nothing to be concerned about. However it didn't go away and bothered me so we saw a different ped who refered us to a Optimalogist. We saw her the first week in April she first tried allergie eye drops which didn't work. So she wanted to do a exam with his eyes dialated. They gave me drops to dialate them myself before the appointment, when I did that the right pupil got very big but the left did not. It freaked me out so I know there was something a little more complicated than allergies going on. While doing the exam she noticed a nerve in the back of the eye was inflammed. Her first thought was Juvinelle Rhematoid Arthritis, that scared me! She refered us to a specialty clinic in Burnsville, MN. Its part of University Of Minnesota Childrens Hospital. We went there Monday April 26th. Wow what a long day, that place was so busy and they are very slow. We were there almost 3 hours with one crabby toddler! They dialated his eyes and did another exam but before dialating his eyes the doctor noticed his left pupil was always smaller than the right. She also saw the inflammed nerve, however her opinion was Horners Syndrome and possibly a tumor. We then schduled a MRI to be done 3 days later at the U of M Childrens Hospital in Minneapolis. He was sedated and had a breathing tube for the procedure which was very hard for me. He woke up pretty well but threw up all over in my car on the way home! Thank goddness we were only about 15 minutes away from where Mike's brother lives in Hudson so we had somewhere to stop to clean up. The Doctor called that night and said they didn't see anything to worrie about and didn't see any tumors, thank god! But that they needed to find out what was going on with his eyes and nerves so we then made another appt. for detailed imaging and lumbar puncture (spinal tap) which he would have to be sedated again for. We had that appt. today and by this point Jackson had had enough of all of this. The minute they brought us back to the room and started hooking him up to everything he got scared and started crying. He cried a lot until they gave him some med to calm him down and I rocked him to sleep. There was a optalmolgist, a fellow, and resident all looking in his eye. Guess thats what happens a university hospital. They all agreed that his nerve was inflammed but the problem was actually coming from his pupil and iris. They said his iris is stuck to his lens and his pupil is stuck to his iris, weird! They had put quite a few eye drops in throughout the morning to dialate his pupils and the left pupil was not circular, it was jagged. They saw a bunch of white blood cells pooled in his eyes which led them to the diagnois of Iritis, which is inflammation of the iris. Which is caused by a autoimmune disease, which one they aren't quite sure yet possibly going back to the Juvinelle Rhematoid Arthritis again. So we go back to Minneapolis on the 26th to see a Rhematologist to hopefully give us the last piece to the puzzle of what is wrong with Jackson! One strange thing that we really didn't think was related is one of his toes is really swollen which the doctor today said because its a joint and joints have to do with autoimmune diseases that he thinks it is related to his eye. A autoimmune disease is when the body actually attacks it own cells, sounds scary. The doctor said with treatment most kids still lead a fairly active and healthy life. It does compromise the immune system so he could get sick more often and worse than a healthy child. For now we are treating the left eye with steriod drops 4x a day and dialating the eye with drops to relieve pressure and help with pain.
So hopefully this site will help keep everyone in the loop and more time for me with Jackson!


  1. Sara~ so glad to have a way to stay updated. It's a relief, I'm sure, to finally have some answers even though this will require lifelong management. You are such a great mom to Jackson, the way you stayed on top of what looked like a "minor" issue, is going to help him in the long run. Your maternal instincts were right! Always trust that. Jackson is lucky to have you!!
    Thanks for taking the time to make this website (even if it was kind of a pain!;) ) and keep us all in the loop! Love & hugs to your fam~

  2. Thank you Jackie! You have been a awesome support person for me! I am so lucky to have you as a friend:) And I hope that I can be of support for you with Nashy.