Jackson's ICU Stay

My last blog had stopped at when Jackson had been in the er for the second day in row.  He had been diagnosed with lyme disease and got a iv of antibiotics, fluids and morphine.  Then he was sent home.  He was still in lots of pain.   Everytime I tried to give him pain meds, Zofran and his antibiotics he would vomit.  He was up most of the night.  So the next morning  (Tuesday ) we took him back into emergency.   They again hooked him back up to a iv.  They did blood work again and his white blood and crp was extremely elevated.   So at that point they decided to do a spinal tap and ct scan.  Results were that the lyme had gotten into his nervous system and in the spinal fluid and causing swelling.  They call it neuro lyme or lyme meningitis.   It's symptoms mimic meningitis but is not the same as the one you hear of in the public and is not contiguous.   He was then admitted to icu.  He continued to receive iv antibiotics, pain meds and fluids.   He was in the icu for 3 days and then discharged with a picc line and receives antibiotics daily through that at home.  He lost a total of 6lbs, which may not seem like a lot but he is a very small boy to begin with.   I have never seen him so sick in my life and in so much pain.  The spinal tap was very emotional for Mike and I.  Jackson got a concious sedation so he couldn't move but he could see and hear.  And Mike and I both got to stay in the room but it was extremely hard to watch.  Looking back on the whole ordeal I held up pretty well during it but now looking back makes me extremely emotional that he had to endure all that.  He still has the picc line.  He is looking a lot better and has gained 4lbs back.  He is still very tired all time and spends a lot of time laying around.   But hoping soon he will get his energy and back to his normal self.  Hopefully this whole ordeal is behind us.  I never want to experience this again. 

Not so great birthday

It was Jackson's birthday Saturday but unfortunately it was not a great birthday.  Last week on Thursday Jackson got a migraine we alternated tylneol and ibuprofen for 3 days.  He would improve at times for a few hours but then right back to pain.  Friday night he came into our room crying in the middle of the night because of the migraine.  On Saturday he was feeling a little better enough to go to chaos to celebrate his birthday and Fuji for dinner.  Later Saturday night he started getting worse, I was up most of the night with him.  He also vomited a few times throughout Saturday.   Sunday afternoon I took him to the er because he couldn't stop crying from the pain and was becoming very lathergic.  They gave him iv fluids, oxygen, anti nausea meds and pain meds and then discharged him.  His pain was still not any better Sunday night and he was again up most of the night and extremely lethargic.  So this morning Mike brought him back to the hospital.  They ran some blood work and said he has lyme disease and because he immunocompromised his body just couldn't fight it so it made him very sick.  They kept him for most of the today and gave him iv fluids and morphine and then antibotics through the iv.  He is now home and resting and will be antibotics for 2 weeks to a month.  He is still in a lot of pain and very lethargic.  Hopefully he will improve soon.
His uveitis however seems to be improving.  Last eye exam showed very minimal inflammation so we will be decreasing steroid drops over the next few weeks.  His pressures were extremely high a month ago and those are now back down so that is great. 

Complications

Jackson has had some complications since August.  Because of this his infusion he was suppose to get this past Monday has been postponed until we get past this.  Back in beginning of August Jackson got a infection in his upper thigh.  I took him and they gave him 10 days of a antibiotic.  It did clear up.  But then in the end of September it came back worse than it was the first time.  He was given the same antibiotic again for 14 days.  Last week it still wasn't much better so I took him into urgent care one evening and they gave him 2 shots of a different antibiotic and we sat there for awhile to monitor to make sure he didn't have a reaction.  And then we were sent home with another round of the same antibiotic again.  I called the rhematolgist last Friday to discuss if we should even come up for the infusion on Monday.  Jackson's rheumatologist was on vacation but the other one thought we should still go and let Jackson's normal rheumatologist look at him and make a decision and they also fit us in to see a pediactric infection disease doctor there.  Dr. Vehe (rheumatologist) said we should probably hold off on the infusion as it might be like putting gasoline on the fire.  He also informed me that the antibiotic he was interacts with methotrexate by lowering white blood cells to a very low level and the 2 should never be taken together.  When Mike looked up the antibiotic online it clearly states not to take those 2 meds together!  So I am wondering how 3 different doctors and 3 different pharmacists catch this!  Makes me extremely mad as because Jackson is on so many meds I put my trust in these doctors and pharmacist to know what meds cannot be taken with ones hes on daily basis.  We also go over his med list everytime he sees a doctor so they know what meds he is on!  So I guess I will have to be more proactive when they are prescribing a new med.
Monday we saw a pediactric infectious disease doctor, Dr. Sharon.  His main goal is to get this taken care of so that Jackson is not off his remicade too long which will put him at risk for joint and eye flares.  He took him off the old antibiotic and put him on 2 different ones to take everyday for 2 weeks.  We are scheduled to go back to see him on the 20th.  If the infection is not gone they will put a pic line and Jackson will receive iv antibotics here in our hometown.  So we are really hoping we can get him better and avoid the pic line.  However he is vomiting within 10 minutes of taking the new antibiotics so hes not even getting any in his system.  I have a call out to the nurse coordinator at the childrens hospital so well see what to do now.
The older Jackson gets the harder this all becomes for him.  This recent issue has been the worst for him.  He keeps saying things like why does this have to happen to me its not fair.  He even said one day why does everything happen to me, why can't it happen to my sister.  It was easier when he was little and just assumed that this was normal for everyone.  The older he gets the harder it gets for him.  It breaks my heart.

Ear problems and blood work off

Jackson has been having trouble with fluid in his ears and hearing for a few months now.  His rhematolgist wanted the fluid taken care of over a month ago but of course its been a fight with the peditrcian here.  She wanted him on allergy meds first for awhile.  Well he went back in last week for a hearing test and fluid test and guess what theres still fluid!  If only she would have listened to me.  She kept talking down to me like I had no idea what I was talking about and the fluid would be gone.  Unfortunately for her I was right.  So Jackson will be seeing a ENT this Friday to get the fluid removed and possibly his 4th set of tubes!  Dr. Vehe thinks we should dig deeper as to why this keeps happening.  So he did some extra blood test Monday while we were there for Jackson's infusion.  Those tests came back fine however his routine blood work did not.  His albumin levels were low so he is sending some paperwork to Mayo here so he can get further testing on his blood and a urinalysis.  Its always something!
Jackson just turned 7 last Friday.  It is bittersweet for me as I love celebrating my kids birthdays but really feel sad that my kids are growing so fast.  We celebrated the day by going to the Wisconsin state fair.  Jackson had a great time and said it was the best birthday ever!

Eyes and Ears

Last week Jackson had a eye appointment that Mike took him to.  His eyes are improving but his pressures are way up from the steroids despite being on the pressure drops twice a day.  Normal range is 12-22 and Jackson's were 35/36!  So off the pred forte and back to FML.  But everytime we switch to FML the cells get bad.  Its like a bad back and forth game we keep playing.  So today we saw rheumatology and Dr. Vehe said we may just do another increase in the remicade infusions.  Joints are looking good.  The warmth in his knee joints was gone today so the new med, Mobic is helping!  But I had told Dr. Vehe that Jackson just recently had a double ear infection and after 3 days on antibiotics he was still crying in pain and he had a bunch of fluid come out of one ear which I belived was from his ear drum rupturing.  So Mike had brought him back into the doctor who said he was fine and the pain was just from the fluid in his ears.  And one doctor I talked to when I called said he didn't need the antiobitics that ear infections don't need to be treated.  Well Jackson's hearing has been bad since before the ear infection so about 4 weeks now.  Dr. Vehe looked in his ears and said there is still fluid and you can see some damage from where his ear drum burst.  Dr. Vehe was pretty disgusted with the doctors here and said they just don't seem to understand given Jackson's health issues and meds he needs special care and should of been switched to a different antibiotic.  I always say a mother knows best and I knew there was more going on.  So he told me to make a appointment to have his hearing checked so they can see that the fluid is causing him problems and then hopefully we would get a referral to a ENT doctor who can remove the fluid.  Dr. Vehe said be prepared to fight and probably have multiple appointments before someone will listen as they just don't understand Jackson is not a normal healthly child.  So we are scheduled for tomorrow morning for a hearing test and appointment with the ped.  Wish me luck!

Back on track

We had a infusion scheduled for last Monday.  We had switched insurances effective April 1st.  Mike and I had both called prior to this and made sure infusions were covered and we would be set.  We were told they would be covered and we would be ready for Mondays appointment.  Well Thursday the childrens hospital billing department sent of the paperwork to verify coverage with the insurance company and they were told we needed a prior authoraztion which could take anywhere from a few days to a few weeks or so.  Since this was Thursday afternoon by this point we were told we had to cancel his infusion for Monday as it was not likely the prior authoraztion would be approved by then. I had called the insurance back and argued that they said everything was set and I was told I must of been misinformed.  I was very angry told them he has been on this med for 3 years and this med has made so he can live as a normal child and run and play.  It isn't fair for a 6 year old boy to not be able to run and play and be normal because of some stupid insurance not wanting to pay for something he needs for his quality of life!   We still went Monday for the eye appointment and kept our appointment with the rhematolgist.  His eyes are improving not cell free yet but improving.  Eye doctor was pretty concerned about being off the remicade and upped his steroids in his eyes while he is off the remicade.  The rhematologist said his knees still have warmth.  Jackson has a lot of pain in his legs lately that they said is from his hypermobility.  He put him on a new med for pain called Mobic.  So hopefully it helps.  After the appointments we stopped at the Minnesota Zoo.  The kids had fun but halfway through Jackson was having a really hard time walking and needed the stroller.  His body gets very tired easily.  Saturday he had t ball practice and by the time he got home he tried to play outside with the neighbor but just couldn't handle it and had to come in to rest.
The Children's Hospital called this past Thursday and got the approval from the insurance to go back on the remicade infusion.  So we head back tomorrow morning to get the infusion.  Hopefully being a week behind schedule won't hurt!
Jackson finished swimming lessons last week and for the first time he can now swim.  Not great but he can swim.  I will be putting him in next level to help him get better.  He also went off the diving board for the first time!  He was so proud and did it several times!  He also just started tball and has his first game next week!

More pain lately

Last month Jackson had a appointment with Dr. Vehe (rheumy), Dr. Bothun (eyes) and a infusion.  His neurologist appointment was cancelled that day due to doctor having a emergency.  Overall a disappointing day.  We started with Dr. Bothun to check eyes.  Both eyes still have cells and one of his eyes is worse than before.  So we added another drop, one they have been avoiding because it shoots his pressures in his eyes way up but we are desperate at this point to quiet the eyes.  Next we saw Dr. Vehe for the joints.  He said his knees felt warm and was worried there may be a flare starting.  But since infusion was schedueled that day we were hoping that would quiet it down.  He did complain of his knees for a week afterwards but now this week he has been complaining of his left legging hurting.  He did not sleep well last night and I think its because of his pain.
Otherwise he has been doing well and stayed fairly healthy this winter compared to last.  He just started swimming lessons and will start tball in the next couple of weeks.  Hopefully we can get his pain under control by then so he can enjoy playing!

Quick Update

We saw the eye doctor in January and Jackson was still having a flare in his eyes.  He has been battling this current flare since last summer.  So for now he is still on the steroids but his pressures in his eyes seem to be holding so that's good.  We have another eye appointment Monday so I am keeping my fingers crossed for some improvement.  Other than that Jackson has been doing very well.  He has not complained of any joint pain or soreness in the last month.  And he has not had any migraines since January!  He has been fairly healthly for the last couple of months which is so nice since last winter he was so sick all the time.  Monday we have a full day of 4 different appointments in Minneapolis.  First appointment of the day will be the eye doc then the Rheumatologist, then infusion and we finish the day with the ped neurologist!  It will be a long day but beats driving to Minneapolis 3 different times in one month!  We will be leaving early afternoon Sunday so Jackson's uncle who lives near the cities is going to take him to the science museum and then well spend the night.  Jackson is really excited!
Will update after Mondays appointments.

Results of Jackson's latest CT scan

Its been awhile since I have updated.  A couple days before Christmas Jackson had a ct scan with contrast of the brain, neck and chest.  His neurologist said the scan was very reassuring that everything looks good.  He did not find any calcium or plaque in the neck or around the heart.  He still has the spots in the falx of his brain but they now think it is nothing of concern and could be from a old healed injury.  He said it is most definitely not from the methotrexate. At this point we are not going to keep testing but will get another ct scan in a year so December of this year.  He is still going to continue to see Jackson to help with the headaches that he says are migraines.  At this point we are keeping track of the headaches and will see Dr. Raymound in March and talk about where to proceed with helping Jackson's migraines.
We have been having some major issues with Jackson's methotrexate injections.  They make him so sick that all the next day after his shot he vomits and dry heaves.  He does take Zofran but it is not helping.  Even after taking Zofran he still gets nauseated and vomits.  So because he knows how sick this med makes him it is a battle getting him to even let me do that shot.  I hate it so much.  It breaks my heart to listen to him cry and plead no Mom please don't!  We have a appointment Monday to see Dr. Vehe (rhemotolgy) and infusion so I will be talking to Dr. Vehe regaurding this issue.
Other than the methotrexate and the headaches Jackson is doing fairly well.  He loves school and is doing so well this despite missing about 12/15 days already this year. 
I have since finished my 30 days of meds for lyme disease.  Wish I could say I was 100% back to normal but I am not.  While I feel much better than I did in December my knee is still sore.  It is a little sore and stiff throughout the day but the worst pain is at night when I try to sleep.  There is still some slight swelling also.  My neck has been sore often and on again also.  I see the doctor again Febuary 26th but that is a ways out yet.  Just thinking back to when my pain was at its worst and the constant daily pain I have now breaks my heart to know my child has dealt with this for 4 years now.  I remember when his knee was at its worst and so swollen he was just 2 years old!  I consider myself to have a pretty high tolerance for pain (thus the reason I dealt with my pain so long before seeing a doctor) so to imagine that it had me up in the middle of the night sobbing is so heartbreaking to know my child has to endure that pain.  Between the ages 2 and 3 I spent many nights awake with Jackson because he couldn't sleep because of his arthritis.  Remembering the mornings when he couldn't get out of bed without being carried or when he would crawl to get around when the pain was too bad to walk.  Awful disease that he will forever live with! 

Hoping for a better 2014 than 2013 was!

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!!!!!!

Update on Jackson's brain calcification

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!

Eyes are flaring, disease getting worse

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!

Going down the unknown path again

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.

Flaring in eyes

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!

Great Eye Appointment

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!

Possible flare

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!

Uevitis is creeping back

So back in May both Jackson's doctors aggreed that his eyes and joints have been quiet for awhile that maybe it was time to start stretching the remicade infusions out to every 6 weeks instead of every 4.  Well a few months after doing that his eyes have now started to flare.  So disapointing.  I was not expecting this news at all.  Everything had been so good I just thought this appointment would be the same.  He also said one of his eyes was weaker than the other eye.  As far as that goes we will see how it is tomorrow at our appointment and if there is no improvement were going to try patch therapy before going to glasses.  Patch therapy is were Jackson would wear a eye patch over the strong eye for a certain amount of time to see if it will make the weak eye stronger.  If that doesn't work than we will probably be looking into glasses.  If there is still cells in his eyes tomorrow we will move the the infusions back to every 4 weeks.  His last rhematology appointment and infusion was 3 weeks ago and it went well.  No sign of flaring in the joints just some hypermobility and boney overgrowth.  He was suppose to get labs at the last infusion but the nurses didn't get the order so he will get them in 2 weeks at his infusion.  He also suppose to get a antibody for double strand DNA which I am not quiet sure what that test is all about.  I tried googling it but didn't get much.  I plan to ask Dr. Bothun in the morning. 
Jackson started kindergarten this year.  He loves school for the most part but he is very wore out from it.  Its been nice for me to get the one on one time with just Brynley while he is in school.  I am a little nervous as we go into flu and cold season but hoping it won't affect him to bad.  Hoping I will have time to update after the appointment tomorrow.

Big decision to make

Its been a long time since I have updated this blog. Life with 2 kids keeps me very busy! Things have been going very well. Jackson has been doing so well. He has complained of knee pain here and there and some pain in his fingers. But nothing that has lasted more than a day or two. His one toe continues to be swollen and has some boney overgrowth. He is currently sick at the moment and has been for about 10 days now so I am hoping he gets better and not worse. This time a year ago he ended up very sick with pnemonia, so I am praying not to have a repeat. We just had a eye appt last week and his eyes are still clear!!! So awesome. Since we spend so much time in the cities at appointments and Jackson is always getting poked and prodded we thought it might be fun for Mike to take the day off of work and come with to the eye appointment and go to the Mall of America afterwards. It was a lot of fun. Jackson was so brave and went on a lot of the big rides and even the rollar coaster. The rhematology nurse called me yesterday to let me know that Dr. Vehe and Dr. Bothun talked yesterday and decieded that we could either push the infusions out to every 6 weeks instead of every 4 or be done with infusions and do a humira injection at home. This is a very difficult decision for us because there are pros and cons to both. I hesitate to switch drugs when this one is working so well. It would be so much more convient to not have to travel so much but yet I want to do whats best for Jackson not what is convient for me! It also worries me that humira can be a very painful injection and we are really having a hard time giving him his methotrexate injection that I feel humira would be worse and make even his methotrexate worse. So I guess I am leaning more towards staying with the remicade infusions and just trying to stretch them out to 6 weeks. If it works and he keeps doing good then maybe we could consider humira. I just dont know, I hate making these kind of decisions!
Jackson is doing very well in 4K, he loves school. I just can't believe how big he is getting! Next month marks the 2 year anniversary that he was diagnosed with JIA. It feels that we have been on this journey for more than 2 years! Jackson's little sister is almost 9 months old. Brynley has 2 teeth and just started crawling! Life is crazy and stressful at times but I love it!

Great news at eye appointment

Today we had a eye appointment up in Minneapolis. The morning started off really bad. Brynley decided she didn't want to go to bed last night until after midnight. My alarm went off at 4 and I slept thru it for quite awhile which I never do. We got Brynley dropped off at Great-Grandma's house and headed to Minnesota. I always leave about 15 minutes early because of the morning rush hour up there is horrible. Well today it was the worst it ever has been! There was a stalled car, a car accident and then the normal heavy big city traffic to make things difficult. We were in stop and go traffic on the freeway for 35 minutes. Then when we made I got lost at the clinic (new building and only the 2nd time I have been to this one). So we were 25 minutes late to Jackson's appointment, luckily they were understanding and didn't make us re-schedule. This was a great appointment, both eyes were clear of cells! Dr. Bothun gave us the go ahead to stop the steriods in the eyes finally. He has been on them 16 months and prolonged use can cause glaucoma and catarats. we have to go back in 2 months to see if the eyes are still good. If they are then in 6 months from then we can maybe talk about stretching the iv infusions of Remicade out to every 6 weeks instead of 4. Then if everything is still good after that we can start decreasing the methotrexate injection dose. These are all maybes if his disease does not flare up. So I am hopeful but yet nervous. This disease can be so quiet and then flare up with a big boom! Jackson started school recently, 4k and he is still in group speech therapy this year. He loves it and is doing so well. I am just hoping he can stay somewhat healthy this year. Wishful thinking I am sure with having a comprmised immune system. We go to see Dr. Vehe (rheumotologist) on the 10th and have a infusion that day also. I am going to talk to his doctor about some stomach pain Jackson keeps complaining about almost daily. He is also having at least3-4 bowel movements everyday that are not normal so something is going on. Just not sure if its related to the JRA or side effect of the meds or something completely different. I don't think its the meds since he has been on them over a year now. Jackson continues to be a great big brother and loves his sister a lot. Tomorrow is my first day back to work. I have been very emtional about it all day. I am so not ready, I would love to just stay home with my babies. It has been great being home with them and getting Jackson to and from school. Thankfully I only work 3 days during the week and the kids go to great-grandmas so there not at daycare. It would be nice if Brynley would go to bed before 11pm at night so I could since I have to be up at 4am when I work. She sleeps great at night 5-7 hours straight once she finally falls asleep!

Thanks for reading and please continue to pray for Jackson to make it to medical remission sometime in the near future so we can get him off these nasty drugs at least for a little while!

Its been a long time!

Wow it has been so long since I have updated this site!

Jackson is doing very well! His joints have stayed good for the most part. Occasionally he gets some fluid and swelling in his knee but it goes away as soon as we do the next infusion. We see Dr. Bothun on the 28th to check the eyes. Its been awhile since we have seen him so I keeping my fingers crossed that they are clear! He only takes 1 eye drop a day now. The infusions have been going so good since we got the insurance to approve it as a outpaitent treatment. Before Jackson would have to be admitted to the Children's Hospital and get his treatment. Now we go to the Children's Hospital but we go to the infusion center which is outpaitent and it cuts the time in half! When he was admitted we would be there from 8am til 8pm, now were there 7:30am til 12:30pm! Makes life a whole lot easier. If his eyes are good on the 28th we may even decide to push the infusions out to every 6 weeks which would be nice. The summer gave us a nice break from all the sickness. Becuase of the meds Jackson takes his immune system is commpromised so he was always sick. So I am bracing that with fall here and winter coming that this winter will be no different:(.

We had a baby girl on July 28th. Her name is Brynley Elizabeth, weighed 6lb 5oz and 19in long. We are so blessed! Jackson loves her a lot and is very helpful. He is a little jealous of our attention though and has been acting out a lot but were working on it.

Well thats it for now. I will try and update after the appt on the 28th!