Tuesday, July 1, 2014

"Summer Break"


     With the school year having come to an end, now is the time for a well deserved summer break.

     My daughter had a really good year at school and is now ready to move on to grade 12; her final year of high school. Exciting and scary, a year with a lot of lasts and firsts is laying ahead for her. She will have her last visit with the pediatric rheumatologist, and the first one with her adult specialist. She will start her last year of high school and her first year of college and so many more milestones are in her future. Pretty proud momma here, she’s accomplishing so much and seems to let arthritis get in her way of doing whatever it is she chooses to do. We have just finished off a study about how arthritis affects teenagers, she put quite a bit of time into that. She also wrote an essay that is featured on this site, for the world to read.

     We were approached through this blog and I’ve written a little entry as well:
 
My bunch!

     As for my son… He has had a great year in many ways as well. He has ended his 9 years at our little country school and is now ready to move on to the big high school in town.  A new start with lots of great opportunities to explore for him. Arthritis wise it hasn’t been a super year. Joint injections, starting with humira, scary allergic reaction…and no improvement to show for it.
 Hence the start of yet another new therapy.

Certolizumab.

      Just recently approved for pediatric use. He is enrolled in a study and as of tomorrow we will have to make many road trips to the Calgary Children’s Hospital. So truly; the “summer break” is really just a break from school. So far we have our first 3 appointments booked: July 2nd, 7th, and 10th. Many will follow; we shall see how to keep up with them.  Here’s to hoping this drug will work for my son. I’m hoping he will play sports for his high school, keeping my fingers crossed the frequency of his medical appointments and the arthritis itself won’t be an obstacle that prevents him from doing this.


     Tomorrow is the first step on our new road, our alternate route, but if it leads us where we need to go, any route will do! Besides, are the back roads not the most beautiful and surprising ones we can travel?!  


Monday, May 12, 2014

Oh May, Oh My.

     Off to Calgary it was again, for a “regular” check up at the rheumatology clinic in the Children’s Hospital.

     My daughter is still doing great. She is having some stomach issues and her back is bugging her at times, but her overall health is good. Her MRI results were as good as to be expected. Sad but true: her next clinic visit may be the last one at the Children’s Hospital. Very mixed feelings about that…. Grateful for the care she has received over the years and at the same time anxious about the upcoming changes for her.            The transition to adult care is a graduate one, with the pediatric clinic and the young adult clinic working closely together to make this transition as smooth and painless as possible. The unfortunate part is that this clinic also is in Calgary so traveling will be in my daughter’s future for the next couple of years at least.

entrance of the Children's Hospital,
 a hallway we have walked many many times

     Travel….unfortunately that will be a key component in my son’s near future as well.

      As expected we found that Humira was not doing enough for him. With his finger joints still extremely swollen, decided was that the time for yet another drug change has arrived. A few options were discussed.

     The road we are going to travel is an unknown one. He is to start a drug that just recently has been approved for pediatric use. It will have to go through a clinical study.  That’s where the traveling comes in…The first few weeks we will have to travel to Calgary once a week, if all goes well, we can then go to bi- weekly visits, followed by monthly visits and bi-monthly. The study will take a year, if all goes well.

      For now; his system needs to be flushed, so no more Humira as of the end of April. The new drug can be started in the first part of July. Hopefully we can get the bulk of the weekly visits done over the summer break. Both his schooling and my work would really benefit from not missing too many days…        
Because his joints are already so swollen, I’m scared that two months of no biologics can wreak havoc on his hands. If that’s the case, we will have to start with plan B: try Enbrel. Since it has been unsuccessful with my daughter, I’m not too hopeful it will do much for my son, especially since Humira isn’t doing the trick either.

     The name of the new drug is Certolizumab. I have yet to find someone who has experience with this one. If by chance anyone who reads my blog has some input about this biologic, feel free to share your thoughts with me!
 
     In the mean time my son will have to continue his prednisone, MTX, Sulfasalzine and Naproxen, let’s hope that does the trick for now. If anything I was really hoping the pred and MTX could be discontinued.  Those two I really hate with a passion, they impact my boy’s personality greatly in a negative way.


     For the rest; my son just wrapped up a pretty successful badminton season ( even though he walks of the court like an old man after a game) and is almost ready to move to the big high school in town, a couple of weeks left and then he will have his grade 9 farewell and is moving on.
 My daughter is doing great, almost done grade 11 and will graduate next year. Spring is finally starting to show itself and the days are getting longer and warmer. Hopefully summer will be upon us soon!

Friday, April 25, 2014

...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


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....




Sunday, February 23, 2014

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!


Monday, January 20, 2014

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.




Wednesday, November 27, 2013

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

Saturday, November 16, 2013

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!