Disapointing appointment today

Well we headed to the U of M Childrens Hospital today for a appt. with Dr. Bothun (Ped Opthlamologist) to re check the eyes to see if the increase in meds 4 weeks ago had gotten rid of the cells in the eye. Unfortnately there was no improvement. I was very let down. Dr. Bothun had said the last time if there was no improvement by today that he wanted to add another med. Today he was going to but called Jackson's Ped Rheumatolgist Dr. Vehe to discuss it with him and he didn't agree with adding another med at this point. He wants to give it another 4 weeks first. As much as I was completely against adding another med I feel that at this point we have waited a long time and there has not been any improvement. The only thing that has really helped at this point was the joint injection. So at this point in time I am with Dr. Bothun and would like to add the other med if its going to help. The longer the cells stay in the eye the more damage it does! For the meantime we did increase the Pred Forte eye drops and he is already on the max dose for the Methotrexate and Naproxen so those will stay the same. What a disapointing day, the whole ride home and tonight I couldn't help but feel so depressed.

As far as the episodes he had a couple of weeks ago, I am waiting for his Ped to get back from vacation to talk to her and see what she wants to do. I choose to wait because I have become very particular with who Jackson sees just because of the history with other doctors not listenig me. I love the 3 doctors he has now and don't care to see anyone else.

I had a old high school friend, Keely, in town this week from Oregon. Keely and her little boy and another friend Liz and her 3 kids came over last night for supper and to play. Jackson loved it and had soo much fun! The picture above is all the kids.

Jackson rode the bus to speech today. He was so excited before the bus came but when he got on and I went to leave he looked terrified. But when he got home all he talked about was getting to ride on the ''big bus.'' It was cute!

He has another cold, he just had one last month too. But we can thank the wonderful Methotreaxte for that. He seems to be doing just fine with it but given his worthless immune system I will watch him closely and I am sure it will take a good 2 weeks to fight it off! I am bracing for a long winter of illnesses with him being on methotreaxte which is a immunosuppressant drug. And now that he is in school 4x a week there will be no avoiding all the germs!

Well thats it for now, next appt. is Oct. 13 with Dr. Bothun and Oct. 15 with Dr. Vehe. Thanks for all the thoughts and prayers!

Sara

Never A Dull Moment!

It feels like its been forever since I updated this site but I think its only been about 3 weeks!

Mike and I just got back from Pittsburgh. It was nice to get away, it was our first vacation without Jackson! I missed him a lot but he had a great time with my Grandma!

Jackson has been doing well. He just started Preschool and a speech group (which he refers to as school). He is goes 4x a week and loves it. Wednesday he will start riding the bus to speech, which he is sooo excited for! On memorial day weekend Jackson had a couple of ''episodes'' that freaked me out. He would just all of sudden zone out with this blank stare,possibly a seizure. It would last for a minute or less. It happened about 4 times in 2 days. I called urgent care and talked to a nurse she didn't not think they could see him, she didn't think they were equiped given his disease. I then called the on call ped and he said to give him tyneol. Not sure why because he didn't have a fever and he wasn't sick. But this was the same Ped who said there was nothing wrong with him before he was diagnosed with the JRA. So given his past with Jackson I decided to call the on call Rheumatolgist at The Childrens Hospital. She said he needed to be evaulated and that he could be seen by someone here so we wouldn't have to drive to Minneapolis. The next day was Memorial day and then we left for Pittsburgh so he hasn't been seen yet. And his ped is out all week. So I called and left a message with Dr. Vehe's nurse to ask him what we should do so just waiting to hear back from her. We have a appt. in Minneapolis with Dr. Bothun to look at the eyes on Wednesday. So its been 4 weeks since we increased the methotreaxte to see if the eye would get better. I am soooo anxious because if there are still cells we will be adding another med. So please pray and cross your fingers we get good news Wednesday!! As far as the other knee it is still the same, no improvement but it hasn't gotten worse either.

Thank you for checking in and I will update after Wednesdays appt.

Sara

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