Update

Just a little update. Jackson has made quite a improvement in the right knee since the joint injection! The swelling has gone way down and it only takes about 10 minutes in the morning for him to walk on it! Compared to 2 hours before he could walk, which is a huge improvement. We have done 2 weeks of the methotreaxte injections at home, that has been going well. He lays down on the couch really good for me and doesn't even cry! He is such a trooper with all the poking and prodding. We are still weaning off the steriod eye drops so I will be curious on what the opthamologist has to say on the next appt. He still takes the Naproxen 2x a day also, which the plan is he will be on that long term or til he goes into remission. The one toe has gone down slightly in size but is still swollen. All in all he seems to be finally improving. It feels like we have been battling this for months but it has only been about 3 months. I just wonder how long Jackson has had this disease and we didn't even know it!
Jackson has been really sick with a cold the last week and can't seem to kick it so we might be making a visit to the Ped here within the next week if he doesn't get better. I kinda figured with having a immune system proplem plus being on a immunosupprsant drug would make for him catching every single bug but I guess the payoff to get in remission will be worth it!
August will be a busy month with 3 appts schuduled already. Unfortuntaly we couldn't get both the doctors at the childrens hospital schduled in the same day so I have to make the drive twice in two weeks. And Mike is out of PTO time so I will be doing it all alone! Jackson sees the Peds Rheumatolgist on August 12th and the Peds Opthlamolgist on the 18th and his Ped here on the 25th! Busy month!
Thanks for checking in I will update again in a couple of weeks after the next appt.
SARA

New Meds again:(

Yesterday was a long busy day at the childrens hospital. We had 3 appts, one with the Ped Rheumatologist, one with the Ped Opthalmogist, and one in the Peds sedation unit for a injection in the knee. Jackson did very well:) The injection was steriods because the knee was so big and caused a lot of pain and the meds were not doing anything for it. He was sedated when they did because of his age and because the have to the big needle all the way under the knee cap and into the joint. They allowed Mike and I to stay in the room and watch, it looked very painful! He did get some Fentyl for pain which seemed to help quite a bit, he was back up walking within a couple a hours. Dr. Vehe (rheumatolgist) thought they would probably inject his one toe that is really big but decided that it wouldn't help because that one isn't just full of fluid in the joint its in the tendon too, the same with the left ankle. Jackson did seem to be very restless last night and had me up at 1am so I am very tired today. Not sure if he was hurting or what. As of tonight though I have seen a big difference in the size of his knee already which is great!
There were still cells in his left eye which was very disapointing since we have been on the steriod eye drops for over 2 months and initially they made a huge difference. So given that his joints and eye have made no progress since the last appt. they decided it was time to go right to the big drug, methotreaxte. Huge bummer for me this is a pretty strong chemotherapy drug and I was hoping to avoid this option all together. However the risks of not taking the drug are worse than taking it at this point. The benefit of methotraxte is it will help both the eye and the joints and tendons and we can start weaning off the steriod eye drops since takin to long it cause glacoma and catarats. He will still stay on the naproxen though, again I am very worried about all this meds he takes daily being hard on his body! The methotreaxte is a injection that is given every week and I get to do it at home. The nurse went thru it with me step by step and even had me give her a practice shot. I was really nervous but she claimed I did really good and she couldn't feel it. I am also worried about the methotreaxte being a immunosupprasant drug and his immune system is already compromised. I have a bad feeling he will be sick a awful lot this fall and winter. But without controlling the swelling the fluid will eat away at his bones so I guess this is the best for now. Our next appt with Dr. Bothun(Ped Opthamolgist) is Aug 18th and I have to make one for Dr. Vehe (Ped Rheumatolgist) in 4 weeks.
On good note Jackson turned 3 on the 11th! We had a big party at our house with family and friends. Mike even suprised Jackson with getting a bounce ride for all the kids! It was a gorgeous day and the little ones played all day on the bounce ride, pool, slip n slide and the swing set. He is one spoiled little boy with all the presents he got. He had a thomas the train cake. I will post pictures at a later time as my lap top crapped on me and I have to use the desk top in the mean time.
Thanks for checking in!
Sara

Update

We have seen no change in Jackson since he started the ibprofen 5 weeks ago. The last couple of weeks seem to be worse. He is having a lot more pain at night that keeps him up crying and a lot of pain in the morning that he won't walk. The other morning he pulled himself around the house with his arms dragging his legs! By late morning he is usually up walking but if you watch him walk closely his walking is getting worse and you can see he favors the left knee a lot. But he is a trooper always trying to run around and be active. I sometimes wonder if he over does it but I want him to live and play a ''normal life!'' I called the pediactric rheumatolgist last Thursday morning after some pretty rough nights and he switched Jackson's meds to Naproxen which is stronger. He was also thinking he would end up adding another pain med with it to help. I am very disappointed the ibprofen wasn't working because if we keep going stronger on the meds the harder it is on his body when taking it regularly. But the outcome will be worth it. The doctor also wants Jackson to have a injection in that knee sometime soon and possibly the one toe because the swelling has not gotten any better but worse! The injection should have a significant impact on pain and swelling however it doesnt last forever. You can keep getting more if needed however Mike and I are only doing it this once to get the treatment going. Due to the fact Jackson is so little he has to be sedated to get the injection and we don't want to sedate him often for this! So hopefully we can find the right meds and Jackson will go into remission!

We have been feeling bad for Jackson lately so thought it would be nice to make a fun trip to the cities and go to Como Zoo! He had a lot of fun and keeps asking when are going back! He loved all the animals and we even rode a few rides at the Como Park. This coming weekend we are going to try going on Jackson's first camping trip to Holcombe. I have family that has trailers up there and all Jackson's little cousins will be there to play so were hoping it goes well.

Jackson's 3rd Birthday is coming up on July 11th! He is getting so big too fast!

Thank you again for checking on Jackson and all your thoughts and prayers.

May god bless you all!

Sara

Jackson had x rays and blood work done on Monday. The x rays showed no damage to the bones yet which is good. It did show inflammation in the joints affected. In the x rays they saw it in both knees, we have only been aware of one knee. They may cause them to change his diagnois from pauciarticular to polyarticular. His platelet count is back down to normal. He does have a high sed rate in his blood which is normal in kids with JRA. His hematocrit is low, they didn't eloborate on this yet though. But his labs for his kidneys are good, this will be checked on a regular basis to make sure the high doses of meds aren't affecting his kidneys. We still haven't heard back from the Ped regaurding his partial collapsed lung so I called again today and she just left vacation so I guess I will have to keep worrying about that for another 10 days!

Jackson is still having a lot of pain and a lot of episodes where he wants to be carried everywhere. I have been tempted to call the Doctor several times but I am trying to hold out the full 6 weeks. But it is hard to watch him suffer everyday!

We are now having issues with the getting charged double the co pay for each doctor appt. due to the fact the U of M Hospital sends 2 bills. This has been a nightmare for me that I may be forced to switch doctors and Hospitals. I don't want too but with all the co pays racking up I can't afford to be paying double just because they can't put the bill on one bill to satsify the insurance company! So well see what happens Monday.

On a good note Jackson has been enjoying the summer. Playing outside and we went to the circus last Wedneday. He loved it, he even rode on the elephant.

Thats it for now. Thank you again for checking on Jackson!

Sara

The things Doctors don't tell you!

After every appointment Jackson has I get a letter in the mail. Its a copy of the letter he sends to Jackson's Ped here in Eau Claire updating her on Jackson's condition. So last week I recieved the one from Jackson's Rheumatologist appt. on May 26th. Some of the stuff has me very concerned and I don't remember him going over it in the appt. I plan to call Jackson's Ped this week and go over it with her and see what she thinks. One thing is from his MRI that was over a month ago shows Atelctasis of the left upper lobe in his lung, which basically means collopsed lung!!! This concerns me a lot, it does say in the letter that this is somewhat concerning to the doctor and maybe he should have a chest xray. So I will be insisting on a chest xray to be done in the near future. It also says that there is a disease called Common Variable Immune Deficiency that present identically to JRA and is a consideration given his recurrent respiratory illnesses. Jackson has had pneumonia 3 times one of which landed him in the hospital in 2008. He also has adenopathy (enlarged lymphnodes), this is usually seen in systemic JRA which is not the one Jackson has so I don't know if this is something totally different or if its related. Jackson has been diagnosed with Pauciarticular onset juvenile rheumatoid arthritis with chronic uveitis with synechia of left eye. It is possible over the next 6 months he will progress to be classsified as extended pauciarticular or even polyarticular. They will also be testing him for some other diseases as well. His last set of labs show a elevated platelet count, not sure what that would mean but he will get more labs within the next couple of week so well see if its still elevated.

Jackson still has a lot of swelling, although the meds have helped Jackson sleep better it has done nothing for the swelling. I question how well its controling the pain because we still have episodes of Jackson not wanting to walk. We can't not start any kind of therapy until the pain and swelling go down. As of right now he has a swollen knee, ankle with tibal tendon involvement, and 2 toes. The knee is the worst of all of them.

All in all I am feeling a little worse after reading this letter and wonder why all of this was not brought ot our attention at the appointment. His next appt. is July 12th, the day after Jackson's 3rd birthday, we will be seeing both the rheumatolgist and opthmalogist that day. After a lot of talking I got them both schduled in the same day! Which saves us gas and from making 2 trips to Minneapolis.

I also got a letter from the opthamologist who said his eye has markedly improved since the last exam! Which is awesome. Lets hope by July all the cells are gone!

Thank you to all of you who check this site and think and pray for Jackson!

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!

Sara

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.