Wednesday, July 16, 2014

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!

Thursday, May 29, 2014

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!

Sunday, April 27, 2014

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!

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!!!!!!