A Case of Unofficially Diagnosed Weirdness

     Here’s an update for my family and friends that live far away and close by. Plus for all those wonderfully supportive people that live in cyber space.  

     First off, I cannot express in words how impressed I am, again, with the care we receive. Every time we are in need of care, help or answers, we get exactly that. I am aware of all the horror stories that are out there about negligence, lack of care, and how unaffordable it can be. My family has yet to have a negative experience. My kids are fortunate to have such a caring team behind team, rooting for them and trying to figure them out.

     After the scary allergic reaction my son had, we all felt strongly it could have been caused by the medication he recently started. In order to make sure, we would have to try it again. Since his reaction was delayed (5 days after his injection) it was important for him to be monitored closely in a controlled environment.

     And so we did, off to Calgary we went again. The plan was to check in, bring in an IV, in case a severe reaction occurred, and then my son was to administer his shot of humira. It took a couple of tries , but the IV was in at the third attempt. Hart was monitored and his oxygen levels checked. An epi pen was ready to be used and a big bag full with scary meds was ready, just in case it was needed.

IV is in!

     It was explained to me that once a severe allergic reaction has occurred, the next time the reaction may be faster or more intense. Good to know but not too reassuring! On top of that, my kids have a compromised immune system. Their system is already overactive and the course a reaction can take is not predictable and differs from what is the norm.  If you add the meds my son is on to the mix, it makes it nearly impossible to predict what course this will take or what even triggered it. (I'm somewhat convinced his reaction was delayed and was so slow in its' progression because his prednisone use had taken off the edge of the full blown reaction, but that's just my laymen opinion.) 

     Since my girl is responding so wonderful to Humira, the doc wanted to make sure whether or not it was the Humira that caused this, before we decided to stop using it.

     So…there we go, shot is in and the waiting begins. Every 4 hours vitals checked, checked for any sign of a reaction, fever, blood pressure, the works.

bells  and whistles  

     I am happy to say we did not see a reaction. I am also sad to say we did not see a reaction. I’m glad we can give Humira another try (the way it looks now: we have had 48 hours without a reaction, but the last time it was 5 days before something showed up, so we are not totally out of the woods yet). 

We received training for “how to use an epi pen” and were discharched.

     But now what?

     We will have to consult an allergist to see if we can find out more. The doc forewarned me that we may never find out. That doesn’t sit well with me because I would like to know so we can help prevent future reactions.

There is something beautiful to see everywhere, just look for it!
This is the view from our hospital room.

     For now, my son has to go everywhere with his epi pen. That will take some time to get used to, but no more risks like this for him. It seems to be an unofficially diagnosed case of Weirdness yet again.

To be continued

Never a Dull Moment

     Does it ever stop…?

     Sometimes I wish for a boring week, just an uneventful week where nothing happens. Where you look for things to do because all the chores are done and everything is taken care of.

     Thursday my boy came up from his room and said he had a bump on his forehead. Indeed he did. I send him to take a shower and go to bed, we would keep an eye on it and see how it would go the next day.

The next day he woke up with red spots, hives all over his body , swollen ears and a swollen forehead. Okay, let’s go see the doctor. On our way to my vehicle I found my car doors locked with the keys inside. Spare keys were in the car as well and the other set in my husband’s.  So I phoned my husband and he came to the rescue. When I started my car, a light on my dashboard told me one of my tires was low…We drove to town very slowly. It had started snowing in the mean time as well.

Dropped of my girl at school and went to the ER with my son. He was seen fairly soon. Yes indeed; an allergic reaction. Somewhat relieved (because the rash turned out not to be measles what I was scared of at first) we were send off with some anti histamine. My son wanted to go back to school so I dropped off my car at the tire specialist and picked up my husband’s vehicle. Drove my son to school and off to work I went as well.

some of the hives that covered his entire body

     Coming home I didn’t really see an improvement, but hey, you got to give the medicine some time to kick in. My boy ate a bit, had a shower and went to bed at 7…that is not like him.

     When he woke up today his hands were swollen , his eyes were swollen, his lip was big, his hives were more red and they had spread as well….seemed to me the antihistamine was not working. So back to the doctor we went. Luckily it was Saturday…unfortunately it had snowed about a foot of snow over night. My husband plowed the yard first end then off to the ER it was again.

     Nurses were pretty “impressed” because the reaction was pretty severe. After discussing his medical history and questioning if he had any allergies (well duh…yes he does,  just not sure what!) he was given a room. A lady came to take some blood. She didn't want to use alcohol swabs to clean his arm because she thought the hives looked too painful. So she cleaned it with soap. Also no band aide because it would be painful to take off. Finally the doc came and saw it was not all that good. A shot with something strong (forgot the name!) and a humongous dose of prednisone was given. We were then send home with more prednisone and an epi pen.

crazy swelling in his hands. On the plus side: you can't see his swollen joints!

     Scary stuff….luckily we saw improvement of his hives within a couple of hours. The redness went and he felt a lot better too. Now we wait for the swelling to go down. Phew…another episode of weirdness and more grey hair survived.

     Now we have to find out what caused this reaction…I don’t really want to go through this again and I’m pretty sure my son was not a big fan either. My thought about what may have caused it…? Last week on Friday he had a flu shot and then on Saturday he had his Humira injection…a delayed allergic reaction perhaps? I don’t know but I would sure like to find out. I was told it is going to be tricky to find out what and how because of all the medication he is on. We shall wait patiently.

it's a good thing the snow can be so pretty...

    

     

Here’s to hoping we will have a boring week soon!

Fast Forward

     We are moving forward, Fast Forward in my opinion.

     Ophthalmology appointment went well. My girl was clean and has to be seen in six months. My boy was clean as well and he needs to be seen in a year. The reason my girl needs to have her eyes checked 2 times a year is because she uses plaquenil (or  hydroxychloroquine). This drug can cause toxicity in the eye, especially with long term use.

     My son was approved by my insurance for Humira. That surprised me greatly since my daughter was not approved and receives her shots through the manufacturer’s compassionate program; Progress. After some investigating I found out the reason for this was that their initial diagnosis differs. My daughter is diagnosed with oligoarticular JIA with polyarticular course (oglio: up to 4 joint affected in the initial 4-6months) and my son with polyarticular JIA(5 or more joints affected). What it comes down to is that they suffer from the same disease; my daughter does not qualify and my son does….weird or what. I’m not complaining though, either our insurance or Progress is picking up the bill for this costly drug.

     Drug was ordered and training booked. The nurse came to our house, same lady that trained my daughter! My son is trained for an auto injector because his hands are pretty bad. Where the syringes are perfect for my girl (she likes to go slow, take her time!), the injector pen is perfect for my boy! Clean, aim, shoot, done in 10 seconds! I was a bit apprehensive about it but my son was a rock star. He just did it, no problem. I am not sure if I could ever give myself an injection. You do if you have to, of course, but honestly, it takes a lot of courage. Pretty proud of both my kiddos!

     So….I now have two children using Humira. I hope it gives the same relief to my son as it is giving my daughter. The other day he asked how long it would take for the Humira to kick in because he wanted his fingers to go back to normal. Time will tell.

     What took about 7 years for my daughter, happened within 6 months for my son. That just shows how fast research and practice are progressing. Just hoping there will actually be a cure one day, which would be totally amazing.

     

sadly two of them are mine.

   

     Here’s to hoping!

Fall Findings

     ‘T was another long day for us.

     Up early for an appointment at 10 in Calgary. After a bumpy start ( everybody was slow getting up, a warning light in my vehicle told me my tires were low on air, my car needed to be filled up with gas, coffee was needed and the boyfriend who came along for moral support needed to be picked up) we still made it in time.

     10 am – girl child appointment with the rheumatologist. 10 am - boy child appointment with OT. 11 am – boy child appointment with rheumatologist. 11 am – girl child to the lab for blood work. Noon: time for a quick snack.  12.30pm- boy child going for x-rays and girl child needed to reschedule an appointment for an MRI. A visit with PT was also booked but because of all the running around we forgot all about that….ooops. A short visit to the mall and around 3 pm we were on the road again. A bumpy ride again; an accident on the highway turned a 2 hour trip into an almost 3 hour trip. But the important part is we made it home safe and sound so all is good.

     Findings….I now have to concentrate on two different visits so I have to stay focused and make sure I don’t mix up my kids!

     The girl child was a bit worried the last couple of weeks, her knee was bugging her and seemed a bit swollen. She was worried she was headed back to square one again; however, the doc was not overly concerned at this point. That was a huge relief for all involved! She had some blood work done and the doc took a throat swap to rule out strep throat.  No changes in medication for the moment so my girl is a happy camper! An appointment for an MRI for both of her hands was made for October 21 but that is the date that is scheduled for her ophthalmology appointment so we had to reschedule that. It will be November now, here’s to hoping the snow stays away until Christmas (who am I kidding….?!).

     The boy child was a bit more complicated this time around. We had not seen any changes in his joints; the doc agreed and even found some more worrisome joints that she wanted investigated. She also decided that it was time for him to start a biological drug as well. We kind of saw that coming so it was not the biggest surprise, but still a reality check. The whole circus has to start again: screening for TB to rule out future problems. Not overly excited about that because it brings back memories about the time my girl had to be screened and later had to be treated for TB. That was a big obstacle on our path but it lays behind us now. Besides, what are the odds of both of them having to deal with that….( but then again, what are the odds of both of them having arthritis…oh well, we shall see!) So: chest X-rays were done, his hips were x-rayed ( doc found they were stiff)and we now have to set up an appointment for a Mantoux-test. Also communication with our insurance company needs to take place to see what and if they will cover when it comes to treatment. This is just a formality because we know exactly they won’t cover what the doc wants to prescribe him, but the documents need to be in place so we can hopefully qualify for the compassionate program the pharmaceutical company provides. The hopes are we can start Humira with my son as well. The doc wants him to use an auto injector because his hands may not be able to handle a syringe for long….this makes me sad, but hopefully we caught it in time and can prevent more damage by treating him aggressively. He will need a medical alert bracelet / necklace now as well, flu shots are recommended and no more live vaccines.  Occupational therapist provided him with some pencil grips because his fingers hurt when he has to write a lot and we discussed the potential use of splints in the future. Hopefully we won’t need them. Overall a lot of information to digest again.  Ophthalmologist appointment soon, his first one, I hope his eyes are clean.

sad we still have to worry about this

     While waiting for X-rays, I saw this posted on the counter. It frustrates me; if you have good reasons to not immunize your children, I hope you think twice and I hope you realize by choosing not to immunize you can put others in harm’s way. If my kids with their compromised immune systems were to contract the measles it can kill them so please people, weigh the pros and cons and realize your decision can impact a lot of lives. Down here in Canada we should not have to worry about a measles outbreak in Holland but apparently it is a concern.

     Fall is upon us and it is beautiful. It’s not such a pretty time for kids with JA it seems, there are a lot kiddos struggling at the moment. My thoughts are with them and I hope winter is not too hard on them.

beautiful fall

.

Little Glitches

     School has started and fall is nearing. The routine is back, the seemingly endless summer days are shortening and the leafs are turning.

     We had a wonderful summer and the battery has definitely been recharged.

     My boy child is slowly getting used to his “daily pill routine”. So far to no avail though, I don’t see any change in the swelling in his joints so my guess is something new will be introduced after our next visit to the rheumatology clinic, which is coming up at the end of this month. Also complaints of mouth sores so hopefully we can quit the chemo…. An appointment with the ophthalmologist is planned for the beginning of October. Hopefully that doesn’t provide us with any challenges. Eyes always worry me…

     My girl child has been doing wonderful, up until a week ago. She told me her knee was bugging her and was worried she had to start all over again. Extremely frustrating for her after having had such a wonderful year where Arthritis has been on the back burner. Her knee does look swollen so I’m thinking her fears are legitimate. Hopefully this is just a short lived little set back, with school starting, work, weather changes etcetera being a trigger. I’m keeping my fingers crossed.

     I have found fall is not a good time for our JA kids…I hear and read so many stories of kids being miserable this time of the year. It’s easy to let your head hang low at this time of the year, but guess what, that’s not how we roll; we have so many reasons to be excited and look ahead to a bright future! We’ve successfully dealt with this before, we can deal with it again!

Country Folks in the Big City

     School is done for the year and summer has finally arrived what means a bit of a break for all of us. Both my kids have done well in school this year and they deserve credit for that!

 Also a good time to get as many medical appointments done as we can so both school and work are interrupted as little as possible! With my son recently diagnosed, the whole circus is in full gear again.

     Our first official day of summer holidays was spent at the Calgary Children’s Hospital to have MRI’s done of both hands and wrists. My daughter and her boyfriend tagged along and spend part of the day shopping in the close by mall. 

We left our house at 7:30 am and came home at 9:30 pm. A long day for 2 twenty-five minute MRI’s.  Thankful that it is done though, and thankful for the thorough care we receive.

     I read and hear many horror stories about healthcare and how people are disappointed or let down by it. I can honestly say I am grateful, very satisfied, and amazed by the level of professionalism and knowledge each and every one of the medical professionals we have had the pleasure of meeting with, displayed.  Perhaps the most important reason I am so happy with the care we receive is the fact that we always feel we are being heard, we always are reassured and we are always treated well, with respect and empathy. My kids are two young people and are being treated that way, they are not a case, a number or a file, they are two young individuals , each their own self and I feel they are being appreciated for who they are, not for what they have.

      So, all in all, a long day, but hopefully the results of the MRI’s are positive and give us a good point of reference.

     Next on the medical agenda was a clinic appointment, two days later. The positive thing about having 2 children with the same condition is you can occasionally combine appointments, so that’s what we did and that was a bonus! Boy child had an appointment at 9:45 , followed by an appointment with the OT at 11:00 and the girl child had her appointment at 10:30, so that was all booked very efficiently!

Brother and sister filling out their check lists!

     I have not seen huge improvement when it comes to the swelling in my boy’s fingers since he started medication a month ago. The doc agreed and added another drug to the mix. She started discussing the potential use of a biologic in the future for him as well, but before we get to that there is a certain trajectory that needs to be followed and she needs to give the current medication a fair chance before we can consider another approach. 

 For now he will be using Methotrexate, Prednisone, Naprosyn, folic acid and now Sulfasalazine was added to the mix.  A referral for the ophthalmologist was made and blood work was ordered.

The OT (Occupational Therapist) did an initial assessment, it will be more thorough with our next visit, since we were a bit pressed for time this time around! She did give some helpful tips and we discussed the potential use of night splints in the future.  

     The girl child is doing well. There was a tiny bit of swelling noticeable in two of her fingers, but that was it. Since there were never MRI’s done of her hands, the doctor  wanted them done before she enters adult care so they were ordered.She is starting to prepare to transition to adult care. 

Again, the thought of that makes me sad and melancholic, because I think we will have a hard time when it comes to allowing another doctor in to our lives and saying goodbye to the fantastic lady who’s been treating my daughter ever since she was diagnosed. 

Come to think of it, another advantage of having two children with the same specialist: we get to hang on to her for just a bit longer! Overall a positive visit for my daughter so we will keep on doing what we are doing!

     Next appointment is set for September, for both of them. We shall see what that will bring!

     For the afternoon my kids were asked if they would be willing to volunteer as “guinea pigs” for medical students. Medical students were to practice physical , MSK  (muscular skeletal  if my medical terminology is correct!) exams of the upper extremities in a pediatric patient. From the Children’s Hospital we moved (approximately 5 km, if even) to the Health and Sciences Centre, which houses a Medical Skills Centre.

     If you picture a country girl finding her way around in a big city you can imagine some slapstick like actions and I would have to admit you would be pretty accurate in your assumptions, but that’s a story all by itself and I will spare you that! 

We made it to where we were supposed to be and that’s what matters!

     As it appears, medical students usually practice their physical exams on actors. They were nervous and excited when they were informed they got to practice on actual patients. Both my daughter and my son were escorted to exam rooms, each accompanied by a physician ,who was there to score the formative exam the students were doing and to provide them with feedback. I sneaked in the exam room my son was in, just because I was curious to witness the process. 

It was great to be part of, nice to see what they focus on, and how they interact with patients. It seems to me it is a very valuable part of their education because books and professors will teach you a lot but real life patients and experience are probably what will teach you the most. I can only imagine how awkward it must be to actually touch people, that you have no relationship with, for the first time. You have a couple of seconds to build a relationship, then you have to focus on your findings, ask questions, observe, and stick to what’s relevant! There was 10 minutes allowed for each exam and there were 9 students examining each child ( 18 students all together!).

We were treated to a nice lunch and the kids each got a gift card to Chapters as a token of appreciation.

An interesting experience for all of us, and guess what; we even made it back home to our peaceful homestead in the countryside in one piece! 

Home sweet home!

Double Trouble

     This morning I had the questionable pleasure to make the trip to the Children’s Hospital in Calgary for the first time with just my son and I. Early appointment booked, so an early morning for the both of us

.

     I had emailed a picture of my son’s hand to the rheumatologist and that was enough for her to see things were not right.

     Yes, he has arthritis.

     After further examination it appeared he had about 10 joints affected. Not just his hands, she found some fluid in one of his knees as well and she is suspecting his feet too, since they were stiff. Her diagnosis is Polyarticular-Rheumatoid Factor negative Juvenile Arthritis (Poly articular : more than 5 joints affected when diagnosed, Rheumatoid factor Negative: No RF markings showing up in blood work). I’m not too interested in the particular label, just frustrated we have to travel this road again.

     Blood work done, x-rays of ankles, hands and knees were made, MRI ordered, ophthalmology appointment in the planning, treatment started and a visit to the clinic booked 6 weeks from now. We started with the lovely mix of prednisone(steroid), methotrexate (chemo) and naproxen ( anti inflammatory), paired with folic acid and a stomach protector when needed. 

     I’m happy about the fact I followed my instinct.I'm happy about the fact we caught it early. I’m happy about the fact we have the same doctor treating both my children, I am happy about the fact we know what to expect ( somewhat) and I am happy about the fact my son can turn to his sister for advice and support.

      I’m sad about the fact I now have two kids that have to struggle. More than ever I now realize Juvenile Arthritis truly IS a family affair.

My bunch!

     

     June 9 there is a Walk to Fight Arthritis. Get out and walk, people, it’s important.

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1051773&supId=382250273&msource=2013FBWLK

     This is the link to a page where you can sponsor Claire, she is one of our little friends. Claire and her mom, dad, and brother are Walking for Arthritis. 

Odd

     

     It is May and it has been a while since my latest update, just because life has been well. Busy but well! Now “things” have taken an unexpected turn from an unexpected angle, but more about that later.

     My girl is thriving. I have never seen her this energetic and this healthy. School is hard work, but she gets it all done. She has a part time job, for about 3 afternoons a week in a local restaurant and she thoroughly enjoys it. Both working in a nice team and the freedom the extra cash allows her are a welcome addition to her daily life! Then there’s the boyfriend. I can honestly say they are a great pair. They have a lot of fun together, there is a great mutual respect and they treat each other well. He’s a good guy and he fits right in. He is also the first non-family member that has joined us for a visit to the rheumatologist. Was nice for my girl to see how he truly cared about her life, good and bad.

Playing the Wii while waiting for our appointment.

     A visit to the ophthalmologist in March showed everything was clean so no worries there. A visit to the children’s Hospital also went great. She was given the green light to discontinue folic acid and Dyclofenac. She currently is only using Plaquenil and Sulfasalazine daily and Humira bi-weekly. That is quite different from the 14 pills she was on about a year ago. The one concern her Rheumathologist had was that she is still underweight. She could use about another 10 lbs. that would put her in the bottom of the growth chart. She made it to just about 5” (152 cm) and weighs 35kg (77lbs). Yes; being overweight is challenging, but being underweight isn't easy either!  But I’ll take it, she’s quite healthy at the moment so no complaints from this lady!

     Here’s where it gets weird.

     The fingers in this picture are swollen and different from how I know them to be. They look like the fingers of a person with arthritis. The frustrating part is they are not my daughter’s fingers. This is a picture of the hand of my son, the healthy kid. It's not just this hand, his other hand has a couple of swollen knuckles too. I’m concerned and have seen this one too many times to ignore. Soooo….I guess we will go and see the family doc and see if he thinks what I think.  Blegh. I hope I’m wrong but my gut is not sending me good vibes. Will keep you posted about how this development unfolds itself.

     In the mean time I am going to enjoy the lovely weather that has finally come our way, it was a long time coming!