A few months before Jackson's 3rd birthday he was diagnoised with Oligoarthritis Juvenile Idiopathic Arthritis and Uveitis. Our lives would be forever changed and I could have never prepared for what we were about to go thru!
Well the end of 2013 just hasn't been a good year for us! We are still trying to figure out Jackson's brain issues. We have gotten a 2nd and 3rd opinion and all but one doctor said it is not from the methotrexate and said it isn't even calcification but plague in the arteries in the brain. They suspect it might be in the heart area too. He is scheduled to have a CT scan and angiogram with contrast Monday afternoon in Minneapolis. The new ped neurologist was very good and promised we would get to bottom of this. He is going to be doing a bunch or tests. He is looking for heart problems, metabolic disorder or maybe another autoimmune disorder. Still all very depressing and worrisome. And Jackson was hit with another bad headache that lasted for a few days with some vomiting and kept him at night. It is so hard to watch your child endure such pain and be so helpless you can't do anything to take the pain away. I am just so fed up with his suffering I can hardly stand it anymore!
I have had my own set of problems on top of all this. For a few months now I have been having on and off joint pain that comes and goes throughout my body. Prior to that in the summer I had some swollen lymph nodes in my groin and a strange rash on my leg. Well in beginning of November my left knee got sore and a little swollen. I wore a knee brace for a while and it get better. But the day after Thanksgiving it got really swollen and sore again. I thought I probably injured it at some point so started wearing my knee brace again. About a week and half ago my whole left leg swelled up from my knee to my calf to my ankle to my foot and toes. You couldn't even tell I had a ankle. I couldn't bear much weight on that leg. So I finally decided it was time to see a doctor. They did some blood work and my d dimer (blood clotting) was elevated so they sent me straight to er for a ultrasound thinking I had a blood clot. Ultrasound came back good, no blood clot thank god! My lyme disease test came back positive so they thought this was the cause of my leg pain and swelling. They sent it to Rochester for further testing because I had lyme 10 years ago. That test showed positive for new infection not my old lyme from 10 years ago. So I was diagnosed with late stage lyme disease. Doctor said I have probably had it for quite a few months for it to get this bad. They gave me a splint to wear and took me off work until it got better. They also referred me to orthopedics. I saw orthopedics last Friday and they wanted to drain some of the fluid out since there was so much and do some testing on it. The first try didn't go so well. He couldn't get the needle in the joint so he kept having to jam it in there and oh it hurt so bad. So they finally gave up and sent me to radiology so the doctor could see the needle through the ultrasound while getting it in knee joint. They took 3 very colorful tubes of fluid, one of which was pretty bloody. This week the pain is getting better and swelling has gone down quite a bit in my ankle and foot but still quite a bit of swelling in my knee and calf. I am getting around much better this week but after a hour on my feet I can feel I need to sit. So hopefully it continues to improve from here and the test results on the fluid don't show anything other than the lymes. I guess this will teach me to wait so long before I see a doctor when I am not feeling well!
Jackson had a infusion this past Monday and we went early and brought gifts for him to hand out to the other sick kids in the infusion center. He was great and so happy to do it! After being there so many times and seeing all these sick kids some with cancer, some with same disease as Jackson, blood diseases, kidney diaylis etc. I felt the urge to do something for all these poor babies suffering! We also brought gifts for the nurse. They are awesome people to work with sick kids every single day and show such compassion! It was a great day and I am so happy we could do something to give back for Christmas. We ran into quite bad winter weather there and back but made it. Its only been a few days since the infusion but enough for his body to already get sick and he has a ear infection but finally feeling better today. So hopefully we can all be well for Christmas.
Hope you all have a very merry and blessed Christmas!!!!!!
I spoke with Jackson's rheumatologist on Monday regarding where we are at with a 2nd opinion with a neurologist. He still has not received the copies of Jackson's MRI or ct scan so has not been able to look at them. I have requested copies be sent to him twice now. So I went and got copies myself and will send it or hand deliver it to Dr. Vehe as I am so frustrated. Because of this Dr. Vehe was saying we might want to switch Jackson's care over to mayo in Rochester since they are affiliated with the doctors in our hometown then there won't be any issues with getting records. I don't want to do that at this time as I love Jackson's doctors and they have been with him since the very beginning of his diagnosis and know him so well. Dr. Vehe sent a letter that he gave me a copie of to the neurologist we saw in Rochester stating he does not agree with her diagnosis of the calcification in the falx of the brain being from the methotrexate. He asked if he could speak with her or if she could provide him specific information to support her statements. He stated that there is no child with JA that has ever had this. And that the only people with calcification from methotrexate (chemo) is leukemia patients who were also getting radiation and much higher doses of methotrexate and in those patients the calcification was in a different area of the brain. He told me that if theres evidence to back her statement up that Jackson would go in the medical books as being the very first patient ever with brain calcification due to methotrexate. Pretty much meaning this is not from the methotrexate. Unfortunately she will not return the calls to Dr. Vehe or respond to his letter. He is very frustrated and said it is very critical to get to the bottom of the cause. He said the next step is a second opinion either with a neurologist at the u of m children's hospital or to see a pediatric rheumatologist in Rochester for a 2nd opinion. He was leaning towards getting a 2nd opinion with rheumatologist in Rochester due to the fact they have access to the MRI and ct scans where the neurologist in Minneapolis would not. But now that I have the images myself I want to get the 2nd opinion with a neurologist in Minneapolis. This whole situation is so very frustrating to me! I just cant believe the first neurologist would say its the methotrexate without having any evidence or even having any other documented child having this. I feel like we have wasted time and money with her! We could have seen someone else and gotten to bottom of this by now. Not to mention the time off work Mike and I took to go to Rochester. The gas and money for hotel. So hopefully we can get another appointment sometime soon and get some answers.
Jackson had a infusion at the children's hospital in Minneapolis Monday also. It went well, he slept the whole time as usual. His dosage was increased at this infusion and will stay that way for awhile. He also had his pressures in his eyes checked and they were still holding out good which is great. We go back to see eye doc December 6th. I am praying theres at least some improvement but not counting on it as last time he had a big flare it went on for months and months. Jackson's next infusion is the week before Christmas. So Jackson and I have been picking up little gifts here and there like movies, crafts, coloring books etc. We will continue to do that until his next infusion and then at this next infusion we will go early and Jackson will hand out these gifts to the other kids in the infusion center. It is just something I felt the need to do. Every time we go I look at all those sick kids and it breaks my heart that we just wanted to do something for them for the holidays. The kids in the infusion center range from kids like Jackson with autoimmune diseases, kids on dialysis, kids with blood diseases, kids with cancer etc. We will also be bringing little gifts for the nurses. We have gotten to know all of them well and they are the most caring people to be caring for sick kids every day.
Will update again soon! Thanks for all the thoughts and prayers!
I should have updated after Jackson's neurologist appointment and I didn't. We still don't have answers for that. The neurologist in Rochester said the brain clacification is from the methotrexate but when talking Dr. Vehe (Jackson's rhemotolgist) about it he does not agree. He was waiting for images of mri and ct scan and report from Rochester and from there he was thinking we should get a 2nd opinion. Jackson has a appointment in Minneapolis to see Dr. Vehe and get a infusion this coming Monday so I will talk to him then to see where we are at. So I had been feeling better but now I don't know.
We saw Dr. Bothun a couple days ago and there has been no improvement in his eyes since being on the steroids. Very disappointing news!!! So we increased the steroids and will increase the remicade at infusion on Monday. He also wanted to increase his dose of methotrexate but I am not willing to do that at this point until I know if it is the methotrexate causing the brain calcification. Dr. Bothun was very discouraged about his eyes. I love how he is so caring and really feels for these kids! He remembers every detail about Jackson's case all the way from the very first time we met him. He is the doctor that finally made a diagnos. Jackson was sedated and in pre op ready for a spinal tap because we didn't know what was wrong with him when Dr. Bothun came in and said he has uveitis and JA. I asked if maybe we needed to try a different med and Dr. Bothun said its not the med not working its his disease getting worse. So heartbreaking to hear. I really wanted to hear oh lets try this med or this or that but not his disease is getting worse. Since last time Jackson was on steroids for so long his pressures in his eyes went up so we will be watching that closely and checking pressures weekly. And we will re check eyes again in 4 weeks.
Jackson has also complained about a lot pain lately so he is back on pain meds which seem to be helping. The negative is we took him off daily pain meds last time because his stomach was being ripped apart so this time he is also on zantac to hopefully help with that.
Thanks for checking in on Jackson!
This week has been a emotional roller coaster. Sunday morning Jackson woke up complaining of a headache. By evening time he was crying and falling in and out of sleep. We finally got him to sleep Sunday night only to have him wake up twice screaming and crying in pain. I got up and was going to take him to the ER when Mike got him back asleep and he stayed asleep. Monday morning he vomitied once. So I took him to urgent care. After waiting forever to be seen the doctor barely looked at him and said he has virus. So we went and got some breakfast and then went home to rest since we didn't get much sleep the night before. Later that afternoon Jackson started feeling better and was playing and acting normal. By evening time he had fallen asleep on a chair and when he woke up he was crying again in pain. We could not get him to settle or stop crying so I called the hospital and asked for a nurse to call me back. A half an hour later nobody had called and Jackson was very sleepy and had vomited again. Nurse finally called back and said to take him to ER. So we went to ER. They put in a iv to give him fluids and meds. They then took blood work and did a CT scan. White blood cell came back a little high and the ER doctor had told me the CT scan was good. So after the fluids we were discharged. We didn't get home until midnight so I decided Jackson would stay home from school again the next day to rest. Tuesday morning he woke up feeling much better. In the morning I got a voicemail from a different ER doctor saying that the doctor from the night before was wrong when he said the CT scan was fine and that the radiologist read it Tuesday morning and that there was a abnormal spot on Jackson's brain and we needed to come in asap for a MRI. It felt as if someone had punched me in the stomach. Mike was 2 hours away for a presentation he was suppose to give that afternoon for work but as soon as I had talked to him to headed home. When Mike got home we took Jackson to hospital and checked in. They had to put another iv in so they could do a MRI with contrast. We had to wait forever because we were not on the schedule for radiology that day but had to be fit in. When we finally got in Jackson freaked out and refused and cried to get on the table. So we got bumped back while we waited for doctor and nurse to come and do a conscious sedation. This is when I totally lost it and couldn't keep from crying. I had been trying all day not to loose it but seeing him like that was hard. Its like he was there but not there. And even with the conscious sedation he was still moving a lot so they covered his eyes and Mike and I leaned in tube and held his hands and talked to him to calm him. He still makes comments about it and I would prefer to never have him go through that again. We found out Jackson has calcification on his brain which should not be there. The doctor thinks it may be from his methotrexate injections but is not sure. We are seeing a pediactric neurologist Thursday in Rochester, MN. I am anxious for the appointment as I was relieved that he didn't have a brain tumor but I am feeling nervous of what it is and what the treatment is. So next week will be very busy as Wednesday we have to be at hospital in Minneapolis by 7:30 am for infusion and to see rheumatologist and eye doctor. Then Thursday we have to be in Rochester by 7:45 to see neurologist. I pray that I have good news come Thursday! Please keep Jackson in your thoughts and prayers. He is such a great little boy and it isn't fair that after all he already deals with that we have this now. My heart just breaks for him.
I haven't updated in a while. Everything was going fairly well except for a few complaints of pain here and there. Jackson had a eye appointment the last week in June and his eyes are flaring up. Not the news wanted to hear, so disappointing! We had just pushed his infusions out from every 4 weeks to every 6 weeks 5 months ago and apparently it wasn't a good idea. We were given the choice to either start coming every 4 weeks for a infusion again or stick with our 6 weeks and take steroid eye drops 3xs a day. Very hard choice as they both have disadvantages and side effects. For now Jackson choose the eye drops. The following week Jackson had a infusion and appointment with Rhematolgy. Dr. Vehe had said if there are still cells in his eyes in beginning of August he is going to up his dose of remicade. I hate that idea but the steroids can only be short term use due the damage they can do in the eyes! Upping the methotrexate just wasn't a good idea right now as Jackson has hard time with the methotrexate (chemo) making him sick. So I am praying his eyes will clear up soon!
Brynley has also had her own set of problems since June. In beginning of June she got extremely ill with high fevers going all way up se was very lethargic. I brought her into clinic one day, urgent care another day and er on a sunday night each time being told she just had a virus. I had even mentioned her breath smelled really funny like she had a infection or something in there. Still told she was fine just a virus. Well as a mother something kept telling me something was just not right. So for a 4th time I brought her back in. When we left the house her temp was 101.5 by the time the nurse checked us in it was 104.9! Very scary. They were all running around and going to give her a tylneol supposortory. This time the doctor was very thorogh and after some tests we found out she had strep throat. She had been suffering through it for at least a week if not longer. After being on antibiotics she didn't really seem to get better. She was still whiney and her knee started swelling. So back to the doctor we went for a 5th time. They were very concerned and did a lot of blood work, exam and ekg. She was diagnosed with streptococcal reactive arthritis and put on prophlax antibiotics for 2 months. She started to get better but then on a Saturday spiked another high fever. So again back to the doctor for 6 time. This time the doctor did more blood work and she had some blood work that was not normal. Some proteins and white blood cell count were high. Brynley was diagnosed with a heart murmur when she was a baby and they did a ekg and diagnosed it as a innocent heart murmur. Well due to the rececnt infection that went on for awhile before being caught and a change in the sound of her heart murmur they thought she should have a echocardiogram and see a pediactric cardiologist to make sure her heart is ok. We are hoping it is nothing and that the strep didn't spread to heart and that the heart murmur is still innocent but need to know for sure. I don't know that I could handle another child with her health problems! I will update after echo is done and results are in! Please keep our family and especially my children in your thoughts and prayers!
A couple weeks ago we had a eye appointment with Dr. Bothun and everything looked great! He had one cell in each eye but Dr. Bothun was reassuring that this was nothing to be concerned about and is ok for someone with this eye disease. The only thing that makes me wonder is when we saw Dr. Vehe last (Rheumatolgist) he didn't think this eye exam would mean too much because it was so close to be right after Jackson's last infusion. He thought it would be much more telling if we schedule the next eye exam right towards when his next infusion is due to see if the 6 weeks is ok inbetween treatments or if we should go back to every 4 weeks. Every 4 weeks makes me cringe so I hope the next eye exam is good but Jackson's eye disease was our biggest battle so far. After his eye appointment we went to the Minnesota Children's Musuem. He had a great time there. Thats something I have wanted to do but never was brave enough to try and find my way to it until now 3 years later. Afterwards we stopped in Woodbury to eat. It was nice to spend time just the two of us. Other than that he has been doing so much better than my last post. He has been fairly healthy (knock on wood) lately and has not had any complaints of his shoulder or wrist hurting again! Big relief! So overall the last month has been great for him it almost makes me forget he even has this god awful disease! His next IV infusion is this coming Wednesday which he is already begging me not to have to go which of course breaks my heart but it is what is best for him. It is what makes him seem normal even though its no doubt he will be sick shortly after the treatment as always. I have a lot people who tell me how strong I am for having to do this all the time but I am not strong. I do what I have to do for my child. Inside this hurts me but I have to be strong on the outside for Jackson's sake. I have many times were I break down when I am alone, this never gets easier it just becomes a way of life. I worry most of his future. I have no idea what his future holds with this disease and I pray for the best. I just want him to live a normal life! It has been almost 3 years since Jackson was diagnosed. It feels like longer. I am so proud of how brave he is and everything he has overcome. Life can be so hard sometimes and I always try to remind myself that there are much worse things and to be thankful for everything I have!
Its been awhile since I have updated this site. Jackson has had a rough last few months. He has been quite sick a few times. I think this year has been worse because he is in school now and exposed to so many germs that his body can't fight. In the begining of December Jackson went 7 days without eating. He did vomit twice during the 7 days but it didn't really fit the symptoms of a stomach bug. But thats what the ped said it was. Thank goodness he finally started to eat again as I was getting worried. He went from 40lbs to 36lbs during this time and still hasn't put the weight back on. He stayed healthy for a few weeks and then got really sick a couple weeks ago. He had high fevers and was very lethargic for 4 days. We were extremely worried about him. I was so worried he slept with me the whole time so I could keep checking on him. At one point his fever got as high as 104.9 and his o2 stats were 93 percent. He took 5 days of tamiflu and a antibiotic and finally back to feeling good again the following week. Because of all this he was 2 weeks late getting his infusion so I am a little worried on how that will affect his arthritis!
A couple weeks ago Jackson started complaining one of his shoulders hurt. I brought it up to the rhemotolgist last Thursday while we there and he felt and noticed when he asked Jackson to run down the hallway he held that shoulder funny. He said that joimt is hard to feel and harder to pin point if its the arthritis causing the pain. He told me to watch it and if it gets better after the infusion but then hurts again closer to when the next infusion is due we can pin point it better to being the arthritis. Last night he started complaining of his left wrist hurting so I am wondering if he is flaring. I wonder if because he was so late with his infusion it is causing all this pain all of sudden. I am sad about all of this and would like it all to go away! It gets very hard to constantly deal with a sick child. To date he has missed almost 20 days of school due to appointments and illnesses. Its just not fair! He does not take a daily NSAID anymore because it was causing a lot of stomach problems so we stopped it but I am going to ask if maybe we could try a different one for now until we get the pain under control.
Last eye appointment was the end of December. Overall good appointment. Left eye had trace to 1+ cell and right eye no cells with scaring. So not perfect but I will take it. His vision has greatly improved since having glasses. When he first got the glasses we were told it would only be temporary but now the doctor said to wear them at least 2 more years and then maybe we can talk about not having to wear them. So that was a little disapointing.
As Jackson has gotten older I have tried several times to explain his disease to him and what it all entails. Until recently he assumed this was normal for all kids, so sad. I bought a couple of kids books off amazon that take about JIA. We have read them a couple times. He seems to understand very little which makes it hard but he is young yet.
March marks 3 years since we first noticed something was wrong with Jackson but it took them until the end of May to get a official diagnois. I can't believe its only been 3 years, it feels like it has been years.
Well thats it for now. Thank you all who send thoughts and pray for Jackson. People often don't think to ask how Jackson is doing with his disease and for those that do it means so much to me that you care enough to think of him!
My name is Sara, I am married to wonderful guy named Mike. We have a 7 year old boy named Jackson who was diagnoised with Oligoarthitis JIA and Uveitis when he was 2 years old. Getting to this point has been a hard road and I am sure more to come. We also have a 3 year old little girl named Brynley.