...Spring..? Are you there?

     It's been a while....May is fast approaching. March has come and gone and now April is nearing its end. Let's hope May brings us spring...it sure has been a looong winter this year!

     My son has not seen much improvement after his joint injections. My guess is that a med change is on the brink of happening....It would be a monthly infusion. He also has had an MRI done of his hands and we will hear the results of that at our next clinic visit, which is coming up shortly. I'm really hoping we can change his drugs regimen soon because he is not feeling well at all. He has to stay home sick almost once a week. That's a lot of school he is missing. He's been playing badminton lately and doing pretty good. Just sad to see him hobbling around like an old man after a practice or a tournament. Hoping for some positive changes soon because this is getting really old really fast!

     My daughter is doing pretty good. She's been having some stomach issues but other than that, she's in great shape! Her bi-yearly ophthalmology appointment just lays behind us and her eyes are clear. She has also had an MRI done. For the first time in ten years I was unable to accompany her to a medical appointment and that was not fun at all. I'm very thankful that some great people stepped up to help out. I hope I will never have to let either one of my kids go to any medical appointment "on their own".

     Our next clinic visit is coming up in the beginning of May, double date with both the kids AND their momma!

     I was approached by a local journalist to share our story to spread some awareness about JA. My daughter and I were interviewed by Jeffrey Heyden-Kaye, from the Ponoka News. I'm proud of my girl for starting to advocate for JA. I'm thankful for people like Jeffrey Heyden-Kaye to help raise awareness. It seems to me the awareness is slowly growing so that's super!

     I will post the content of the article on my blog, courtesy of the Ponoka News. Some beautiful pictures were also shot by Jeffrey Heyden-Kaye! We have also been approached by another person to help raise awareness, probably more about that in one of my future blog posts! For now I'll leave you with this fine article!

my girl and I

Family stays positive while dealing with juvenile arthritis

By Jeffrey Heyden-Kaye - Ponoka News

Seeing a child bent over and unsteady on their feet is not an easy sight for a parent but an estimated 24,000 Canadian children and teens live with the disease known as juvenile arthritis (JA).

In an effort to raise awareness, the Arthritis Society of Canada has designated March as Childhood Arthritis month. There is no cure for the autoimmune disorder and those afflicted with it have to change their whole lives around.

For the last 10 years, one Ponoka family has dealt with the issue and they took some time with Ponoka News to explain how they managed. Laeta Morskate said most people attribute the disease to old age arthritis, but when children have JA it is something different.

“In juvenile arthritis your over-active immune system is attacking healthy cells in the body and they can cause inflammation,” said Mrs. Morskate.

Her daughter Merel, 17, says her disease gets mentioned at least once a day.

“Everybody always asks me, ‘Really? I thought only old people got it.’ But they don’t,” said Merel.

JA is an aggressive disorder that needs to be treated in an aggressive manner, explained her mother. The disease is so invasive and treatments are strong that the family has a cabinet stockpiled with pills and syringes.

People suffering with JA take some of the same drugs used for cancer treatment. Doctors can administer steroids, anti-inflammatory drugs, biological drugs and disease modifying drugs.

It can last a person’s entire life but may go into remission. Mrs. Morskate has been told if it goes into remission by time a youth reaches 16 years, then it most-likely stays that way. In Merel’s case, she is in medical remission but must continue her drug regimen.

“She is now basically complaint free,” said Mrs. Morskate.

When Merel was first diagnosed she had to take steroids along with up to 20 pills a day. After almost nine years a working drug cocktail was found and Merel now takes three pills a day and gets a shot every other week. She administers a needle herself into her leg.

One of the reasons she took so many drugs is so doctors could find the right cocktail for Merel’s immune system.

To ensure her system is healthy, Merel goes for checkups every six months and blood tests every six to eight weeks. Mrs. Morskate says the drugs try to trick the immune system, but they also suppress it, if Merel gets sick, her immune system cannot manage a basic cold.

“We have had a full year where we had to go every four weeks,” said Mrs. Morskate.

Merel gets taken to the Alberta Children’s Hospital in Calgary and she has found the experience to be positive. “I don’t want to go anywhere else,” stated Merel.

Fighting JA while going to high school

Grade 9 proved a challenging year for Merel, who spent a lot of time at the hospital. She missed out on school days and struggled with her schoolwork, especially math.

Swollen joints, back pain and constant fatigue make learning a challenge, Merel was not only physically tired but mentally drained as well. Because of the disease, Merel has one leg that is shorter than the other.

“You can’t even learn, you’re just so focused on that,” she added.

An even bigger challenge for Merel was her mental discipline and focus during tough times. While this proved difficult, it made her stronger.

“I feel like I can understand people a ton better than the average 17-year-old, I’d say. Just because I’ve been through so much,” explained Merel.

She feels there is a mutual understanding with other people going through difficult situations in their life as well.

At some point in their lives, Mrs. Morskate said they had to accept the reality of JA but she commends her daughter for having strong mental capacity to deal with these issues while leading a relatively normal teenage life.

“She has a job. She has a boyfriend. She manages her own medication now. She tries to lead a bit of a social life,” explained Mrs. Morskate.

Passing on her experience

Merel’s brother Koen, 15, was diagnosed with JA in May. He is in the first phases of finding a drug cocktail that will work on him.

Koen takes eight to 10 pills per day and takes steroid shots, chemotherapy drugs and non-steroid anti-inflammatory drugs. It’s a big list that should get smaller as doctors narrow down the right group of drugs for his immune system.

“He’s doing alright. He’s exactly the way I was,” explained Merel.

She understands the everyday challenges Koen faces as a teenager. Now he must deal with his physical health as well but Merel is confident in his abilities.

“He’ll be fine with age, and once he gets more knowledge on it,” said Merel.

“It sounds weird but he needs a bit of time to grieve over what is not to be for him,” added Mrs. Morskate.

Raising awareness of JA

Both Merel and Koen have had fluids removed from swollen joints and steroids injected into their system.

“There’s just a lot of misconceptions. People do not know,” said Mrs. Morskate.

“Arthritis is not sexy at all,” she added.

The Juvenile Arthritis Society recently started to focus on how to help a young person cope with the disease. Mrs. Morskate says JA is constantly in the back of Merel’s mind and support groups are starting to sprout up around the country.

“When I was growing up with this, I didn’t know anybody else that had it,” said Merrel.

Mrs. Morskate suggests parents dealing with JA should find a healthy support group. She advocates a positive attitude in dealing with the issue. Being negative will not change the situation, she explained. “If you have to deal with a crappy situation, you may as well make the best of it."

“Merel has learned things and lived things and met people that she would never, ever have the chance of meeting if it weren’t for her disease,” she added.

Trusting their doctor has been integral in getting better. Merel suggests anyone dealing with JA should not leave anything out when talking to their doctors.

Mrs. Morskate has heard of home remedies and herbal fixes but has not seen the merit in those suggestions. She politely smiles and says thanks when people offer the advice but suggests trusting their doctor has proved the best for them.

Merel was not eligible for insurance

At the time of her diagnosis, she had four joints diagnosed with JA and insurance covers a determination of more than four. Shots given to Merel, and now Koen are called biologicals, or tumor necrosis factor blockers, which trick the immune system.

“The shots they take are $3,000 a month,” said Mrs. Morskate.

Merel’s doctor ensured she received help under a compassionate program where a pharmaceutical company must spend a portion of their budget on patients not eligible or who do not have the funding.

Koen’s drugs are covered by insurance because his initial diagnosis was different

Using Blogger to deal with the issue

The Morskates moved from the Netherlands in 2003 and one year later Merel was diagnosed with JA. Keeping the family overseas updated on their progress became cumbersome. Mrs. Morskate took to Blogger about four years ago to write about their challenges and as a means of stress release.

“To keep my own brain organized…And to try and raise a bit of awareness,” said Mrs. Morskate.

Merel and Koen have grown to accept their mother’s writing and she always respects their wishes when taking pictures. For Merel the challenge was wanting to keep her privacy, while at the same time raising awareness and keeping her family overseas updated.

her eyes....

Venture in to February

     Off we went to Calgary again.

     Joint injections were on the program this time around.  A good thing because my son was really bothered by the way his finger joints were feeling. His feet and ankles are bugging him too. Pretty sad to see him walking like an old man after a basketball game.

   

      With some snow in the forecast we left early so we could take it easy in case we had to. Arriving half an hour early with pretty good driving conditions made for a decent start to our long day.

     Since there were quite a few joints they wanted to inject, it was decided to do it under general anesthetic. That meant no food and drinks for my teenage boy…don’t know if you've ever dealt with a hungry teenager; let me tell you, it’s not a walk in the park! 

hungry little big guy

     Drugs were ordered and picked up from the pharmacy. My boy changed into his fancy hospital pajamas and the waiting began. About two hours with nothing to do and nothing to eat!

the bringer of relief?

     He was wheeled to the “holding area”. The doc and the anesthesiologist came and marked off his joints and talked about the procedure. He was asked if he’d prefer an injection or gas to “put him under.” He chose gas. And off he walked, and my heart skipped a couple of beats.

x marks the spot

     I went to the waiting room and watched some Olympic speed skating, even caught a heat were the Dutch females placed for the finals in the team pursuit so that was kind of neat. Waiting wasn't fun though, not liking the fact I couldn't be there with my boy. 

     The wait was over, procedure was done and he was rolled back on to the unit to recover. A chalk white face and pink washed hands and knee were lying in a too small bed, with his feet sticking out. Poor groggy guy.  His knee, both his wrists and 8 finger joints were treated. His already big joints now look gigantic because of the injected medication.

pretty in pink

     A long journey home again and finally, at 7 pm my hungry person finally got to eat!

     Whether or not it was successful, time will tell. For now we’ll just wait and see. If it works: great. We can just keep doing what we are doing now. If it is not successful: the next drug will be introduced. No more humira, the next one will be a monthly IV. We shall see what the future holds.

     Next on the agenda: MRI of both hands for the girl child, MRI of both hands of the boy child, clinic visit with both the girl and the boy, ophthalmology appointment with the girl child, appointment with an allergist with the boy child, AND the dentist for both….hope to fit all of this in somewhere!

Rough Start

      2014…I’m hoping all of you will have a fantastic year, a better, more positive, and more healthy year than 2013 was! Being a little tired of all the medical trials we endured during the past year,we were hopeful to be off to a good start. It turned out different though.

      All is better now but my husband started the year off with a nasty pneumonia, was admitted to the hospital for five days and stayed home for 9 more after that. It seems he is on the mend now, but it was a stubborn bug that hit hard.

     Not just health wise, Mother Nature  is also not helping out! We have had more snow in just December than we usually have in a whole winter. We've had extreme cold temperatures and crazy winds, where semi trucks were blown off the highways. The crazy amount of snow has caused many barns to collapse, what is a big catastrophe for our local farming community. We've had above zero temperatures where the snow starts to melt and freezes up overnight, to create ice rinks in our yards and on our roads. Wicked weather. But: we do see a bit more sunlight already and we are nearing the end of January, so there is light at the end of the winter tunnel!

it sure is pretty though!

     Today was another day of driving to Calgary, to have my girl and my boy checked out. Luckily this was one of the very beautiful days so the driving conditions were great. It almost felt like spring was in the air!

     My daughter’s joints were clean, Hooray! She has been having back pain lately and the doc did some further exploration as to what may cause that. Since she has a leg length difference from about a centimeter, chances are her hips are slightly tilted or she may compensate it with the posture of her spine, this can cause back problems .An insole to correct the difference is prescribed, we will go and hunt for that at some point in time!  When the doc was examining her back, she also found there was a curve in her spine: scoliosis. It is a very mild curve and usually scoliosis does not cause back pain, but it definitely is something we need to keep an eye on. Also a question my daughter had was if she had developed an intolerance to dairy, the fatty dairy in particular; creams, ice cream, whipped cream etc. because she can have severe cramps after she has eaten it. The doc is investigating this further and is also wondering if she maybe has developed celiac. Blood work ordered and done and also x-rays ordered and done to finish off her appointment!

     My Son….he’s not quite there yet. He’s been on Humira now for 4 months, plus on prednisone, MTX, Naprosen, sulfasalasine, folic acid ; the works. There is no improvement in his finger joints and that is a bit worrisome. The treatment has been aggressive and we should have at least seen some improvement. So now it’s time to bring in the big guns. The doc had a couple of scenarios and this is what we chose to do first: do joint injections* in all his affected joints (more than 10), give it two months and we will evaluate after these two months if we see enough improvements. If not, we need to move on to another biologic, she mentioned two, and both of them would be monthly infusions.  Since he has so many joints that need to be injected they will put him under general anesthetics, so he will be out completely!  So…blood work ordered and done and x-rays ordered and done to finish off his appointment!

     After that mommy, boy child and girl child were all hungry and in need of some shopping therapy! Red basketball shoes, a Pink hoody, and a grey winter coat were purchased; I’ll leave it up to you to figure out who got what!

red, pink , and grey

*Joint injections are injections done in the inflamed joint, where fluid is retracted and medication is injected.

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

.