Wednesday, April 9, 2014

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!

Friday, March 7, 2014

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.

Wednesday, January 22, 2014

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! 

Thursday, December 19, 2013

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!!!!!!

Thursday, November 7, 2013

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!

Wednesday, October 30, 2013

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!

Friday, September 20, 2013

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.