Sunday, May 30, 2010

Update on the last 2 appointments

So I dont even know where to begin, there is so much to say! We had quite the week last week. There were a couple of days where Jackson would not even walk because his knee hurt so bad, he would just yell for me when he wanted to be carried to a different room. He is now taking a high dose of ibprofen 3x a day if it doesn't seem to work for the pain and swelling we will have to try a stronger med which is something we would like to stay away from because the prescriptions meds are harder on the body and one of them includes injections that we would do at home. But so far the ibprofen has been good for pain control but not the swelling. As of right now his right knee, left ankle and one of his left toes are swollen. All last week Jackson would wake up frequently thru out the night crying in pain, it was hard to see him like that and the lack of sleep was not fun! Since the increase in ibprofen he has slept all night in his own bed except 1 which has been a treat for us!

We had 2 doctor appts in Minneapolis last Wednesday, one with the pediatric Opthalmolgist and one with the pediatric rheumatolgist. We saw the rheumatolgist first, he did a whole history on Jackson and our families and then did a exam. He did confirm the diagnois they had already thought, Pauciarticular JRA. JRA is nothing like the adult form of arthritis, it is completely different. It is a autoimmune disease and there is no cure for it. The cause of JRA is unknown but some research indicates that it may be in the genes. His knee is the worst joint right now, it is very swollen and squishy when you touch it. It is filled with fluid, feels kinda gross. This fluid will eat away at cartilage and bone and disturb normal growth of the bones. So I am kind of not like the idea that we don't see the rheumatolgist for 6 weeks, if the ibprofen doesn't bring the swelling down I don't like the idea of letting it go that long before seeing the doctor to try a different med. He did give me a great book that he edited called ''Raising a Child with Arthritis.'' Its been a great book for me to learn more about the disease. The rheumatolgist also wants Jackson to have xrays and more blood work done in 2 weeks. He did have some blood work done last Monday and his white blood cell count was lower than normal.

We saw the opthamalogist next for his uveitis and that appointment went well they only saw 2 cells in his left eye which is less than it was 3 weeks ago. But because the cells aren't completely gone we have to continue with the steriod drops. We can hopefully be done with this drop after our next appointment in 6 weeks because prolonged use can actually cause cataract. But not treating uveitis can cause him to go blind so if his eyes are clear of cells in 6 weeks we can go down to see the opthmalogist every 12 weeks.
This has been very emtionally hard for me and I try to tell myself everday that thank god he doesn't have a tumor or some terminal disease but I still wish he didn't have to go thru all of this! It breaks my heart, every parent just wants there child to be healthy and normal and to know your child will have to live with a disease the rest of his life his hard. There is a quote in my book from another mother of a child with JRA that really sums up some of the feelings you have as a parent. ''Sometimes when I am alone, I cannot help but think about what it must be like to start a life with arthritis. And to never know a life, thus far, without pain.''
Yesterday was Jackson's ''Papa'' funeral, which was very hard. He will be missed so much but we are thankful for the bond that him and Jackson had. And we know now he will be always watching over Jackson!
I guess thats it for now. Thank you to those of you who check this site and for your thoughts and prayers. Hopefully we can find the right medication soon and Jackson can be pain free!

Tuesday, May 25, 2010

The last couple of weeks have been hard with Jackson. He seems to be more uncomfortable and in pain. We had almost a week straight of him waking up in the middle of the night in pain and crying. He has been complaining his knee hurts and the last couple of mornings he has been limping and not wanting to walk. It is very swollen. I had been debating on if I should bring him because his appointment with the rheumatolgist is tomorrow. But finally yesterday I brought him in. They did a xray and some blood work. The xray didn't show anything so that means the knee is related to his JRA so I am anxious for tomorrow I can't stand to see him in pain anymore. For now we are giving him ibprofen 3x a day to make him comfortable.
On a sad note Mike's Grandpa, Jackson's Great- Grandpa, had a massive stroke on Friday and passed away last night. Jackson called him ''Papa'' and spent about 3 days a week with him while Mike and I worked. So they were very close and best buds. Jackson is named after him, his name is Jack. He was a great man and will be greatly missed. Unfortunately Jackson does not understand where ''Papa'' is and still asks for him and when he sees a van that looks like Papas he thinks its him. Above are Pictures of Jackson and Jack. Thats it for now please keep thinking and praying for Jackson and for our loss.

Monday, May 10, 2010


So today I recieved a copy of the referal letter the Opthalmologist sent to the rheumatologist that Jackson will be seeing in Minneapolis. After reading the referal it sounds like they are pretty sure Jackson has Juvenile Rheumatiod Arthritis (JRA). After trying to define all the medical words and doing my own research I am convinced he more than likely had JRA. He has a lot of the symptoms. JRA is a auto immune disease that is chronic that damages and destroys the joints. A autoimmune disease means the bodys immune system mistakenly attacks the tissues its suppose to protect. So I guess we will see and deal with it as best as we can. Thank you to those that pray and send thoughts to Jackson it is so appreciated!

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!