Appt. with Dr. Bothun

Jackson had a appointment with Dr. Bothun on Wednesday. It didn't go well at all, there is no change in the cells in his eye. Its been 6 weeks since we increased the pred forte eye drops and there is still the same amount of cells. I was very discouraged but Dr. Bothun told me not be so let down that we will keep fighting and we will get the cells out. He did increase the amount of methotreaxte injection and said if there are still cells in 4 weeks we will be adding another med. I hope we can avoid that since Jackson is currently on pred forte 4x a day, naproxen 2x a day, folic acid 1x day, and methotreaxte (chemotherapy) injections 1x a week!
His other knee (the newest infected joint) seems to be getting a little bigger! I am holding off on calling Dr Vehe because we did just increase the methotreaxte so I want to see what that does first. Jackson took a digger yesterday and scraped both knees, no big deal except he was very whiney about it and not wanting to walk. I thought he might be being over dramatic but then today they bruised up really bad. The knees seem to bruise really easily now.
The next few weeks are going to be very busy, we have a appt. coming up with Jackson's Ped here in Eau Claire and then orientation for preschool and speech. I am excited for Jackson to start these things since he has never been in daycare so it will be great socialzation for him and he loves to be with other kids! He will have group speech at the monestery charter school on Mondays and Wednesdays and Preschool at our church on Tuesdays and Thursdays. In two and half weeks Mike and I leave for Pittsburgh for 4 days. We are going because Mike is in a wedding. I am excited but nervous at the same time. We have never left Jackson for more than 1 night and with his disease being so aggressive right now I am a little worried. However he will be in good hands, my Grandma is coming from Chetek to stay at our house. And I took 12 days off total from work so when we get back I will still have 8 days left of my vacation to make up time with Jackson!
Thanks for checking in!
Sara

Appointment with Dr. Vehe today

We had a appointment with Dr. Vehe (ped Rheumatolgist) today at the Childrens Hospital in Minneapolis. It went really well for now know medication changes and the right knee has improved so well from the joint injection and new meds. He did look at the left knee and confirmed what I had thought that it looks like the arthritis has gone into the left knee. At this point it is very minimal swelling that we aren't going to do anything about unless it gets bigger or starts to cause a lot pain or discomfort. If it does we can up the dose of methotreaxte injection and possibly do a joint injection of steriods. Other than that Jackson is doing well. So we will just pray that the left knee doesn't get any worse. We don't have to see Dr. Vehe for another 8 weeks!!! Thats the longest we have gone before having a appt. With the exception of that left knee not getting worse otherwise we will have to back sooner. After the appt. Jackson had to get labs to monitor the affects of the meds on his liver, kidneys etc. He is such a big boy with this kind of stuff. They always send a child life specialist with to help because a lot of kids hate getting poked with a needle. However our child life specialst was quite impressed that she really wasn't needed with Jackson. He wined a little but otherwise he just sat there and watched. Hopefully we get those results soon, I worry about all the meds he takes and the affects on his body. We did not see Dr. Bothun (Ped Opthamolgist) today, we couldn't seem to cordinate it on the same day with Dr. Vehe so we will be going back up again next week on Wednesday for the appt. with Dr. Bothun. I am also very anxious for this appt. because at the last one the eye had not made any improvment and we had to up the steriod eye drops back up 4x a day.

Mike was unable to come with today and he won't be able to make it next week also so it was just Jackson and I today. For those that know me really well know that I HATE driving in the cities, I get terrible anxiety! I freak out even in the passenger seat and 10x worse when I am doing the driving. However today I did very well with maybe 1 or 2 episodes where my heart was racing. I am worried it won't be the same next week as we have a late appt. which dooms us for rush hour :P Since it was just Jackson and I today and we got done at a resonable time we stopped in Woodbury and went shopping. Got quite a few clothes for Jackson for fall/winter and then we lunch and headed home.

Thanks for checking in and I will update next week after the appt. with Dr. Bothun!

Sara

The other knee

Just a quick little update that I wasn't planning on doing but unfortunately we have a new joint affected. Jackson's right knee was the bad knee that he had the joint injection in 3 1/2 weeks ago. Up until now the left knee was not affected but I am disapointed to say now it looks as though this awful disease has spread to the left knee now too! I have been noticing that he has been limping slightly and walking a little funny lately. I just assumed it was the right knee that was bothering him, it is only a very slight limp that probably only I noticed because I watch him very closely now. Tonight I made him lie down and let me look at his knees and sure enough it looks swollen and when I feel it, it feels squishy and full of fluid. My heart sank, we are now up to 4 joints total with some tendons affected. So we are moving further away from Pauciarticular JRA and closer to being classified as extended JRA and possibly Polyarticular JRA. I am just so disapointed, after the joint injection and the start of Methotrexate (chemotherapy) he seemed to improve really well and I maybe got my hopes up to high that we were on our way to remission of this terrible disease. We already have a appt. with Dr. Vehe (Peds Rheumatolgist) schduled for next Thursday in Minneapolis so I can't wait to see him!

We also got the results last week of his last chest xray and the left upper lobe alectasis (partial collopsed lung) is gone! Yay, I was soooo relieved, they think it must have just been from being sedated that day.

Other than taking 2 weeks to get over a cold Jackson has been doing great! This week he is in bible school and loves it! He is so proud and tells everyone he is going to school! It is so cute, but he is going to be disapointed when its over at the end of the week. But in the fall he will be a busy boy with preschool 2 days a week for 2 hours and group speech therapy 2 days a week for 2 hours. For a little boy who has never been to daycare this will be new and exciting for him and me too! I can't wait for him to have the socialzation with other kids!

Well hopefully I won't have to update again til after the next appt!

Please send extra prayers and thoughts for Jackson this week!

Thank you! Sara

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