Piecing the Puzzle

It’s getting old, I have to admit.

My son and I went for another check up with his rhuematolgist yesterday, to see where we were at and to find out whether or not the changes made to his drugs regimen have made a difference in his overall well being. You would think that after dealing with this disease for 10+ years things would get easier, but just when you think you’ve got this arthritis thing figured out, boom, here’s another plot twist you haven’t dealt with before.

At home we haven’t seen a lot of improvement when it comes to him feeling well. Despite the relaxing Christmas break he is still missing a lot of school and he really cant afford that at the moment.

It’s like a complicated puzzle that we are trying to figure out. So many components and so many different ways to approach it, but so far we haven’t solved it yet!

I have to give big credits to our wonderful doc. I know it is her job, but she goes above and beyond to push, puzzle,figure out, pull strings and think outside the box to help us make my guy’s life easier when it comes to getting him well. Today she phoned me at home at about 7.30 pm, just to follow up with something we had discussed yesterday. I so appreciate her.

To summarize: he has a virus plaguing him. The virus makes him feel sick. It is bearable but when he has to take his Methotrexate he gets so sick he can’t function for at least a day (Enbrel goes better, but is also bugging him). For this reason some other drugs where also discontinued. He has had two rounds of heavy antibiotics to try and get rid of the virus, but they were not successful, he still is testing positive for it. Now the doc has decided to discontinue MTX as well, to see if he will feel a bit better or at least does not have to miss that much school. He is referred to a G.I. specialist to try and get to the bottom of his stomach problems.The waiting time is 4-6 months. In the mean time we will try one more round of slightly different antibiotics to hopefully come one step closer to kicking this virus to the curb. In the mean time, this path he has to take is compromising his arthritis treatment. His joints have definitely been worse, but they are not great either at the moment. So….long way from being where we want him to be.

He is getting frustrated and understandably so. He’s 17. He wants to hang out with friends, be normal, not having to feel sick and not always having to take medication. Here is to hoping we can soon turn a corner and things are getting a bit easier for him.

And they girl child you may ask? She is doing wonderful! It’s wonderful to see her doing her thing!

Long Haul

December already….and this is only my second blog post of the year.

Not because  nothing worth mentioning has happened, just because life is hectic and it has been a while since I’ve had the time or the energy to write an update!

Our family has moved from an acreage to a nice new house in town. At times I miss my acreage but the convenience of living close to work and school, plus our beautiful new house totally makes up for that. No more scary drives home, no more maintenance to our cute but older house, just a nice clean convenient fresh start. Moving from an acreage to a house in town meant purging,purging and purging. You would think after moving an entire  household to a different continent would have taught us not to accumulate too much stuff….but it didn’t!

My beautiful girl has graduated from high school and is now just wrapping up her first semester in college. Her goal is to become a teacher, bachelor in education, with social studies as a major and art as a minor. She’s living in residency and she is made for college. She loves it, works hard and does great. Her health is stable so that’s wonderful.

My boy, he just turned 17 last week….he’s not quite where he would like to be when it comes to his health. He has an after school job, his social life seems to be busy, he played football for the season and seemed to really enjoy it. No issues there. 

He misses about a day a week of school because he feels miserable. Over the summer we have been doing a lot of digging to see what the underlying causes for his physical discomfort may be. He has been examined by an immunologist,we tried eliminating certain foods from his diet, blood work, urea-breath tests and re-tests, he has had a dexa scan, he has done a breathing test, has had MRI’s done of his wrists, has worn a splint for his wrist, a check up with the ophthalmologist,luckily his eyes are clean...probably a bunch of more things that I can’t even remember. 

His blood work showed he has a bacteria in his system that can cause nausea and discomfort. He has been treated for that, twice, with no success. He starts to now be physically sick after he takes his Methotrexate ( Chemo). His specialist is worried that the bacteria is impacting him more than the chemo is, but another round of antibiotics is not recommended ( and it is a nasty cocktail, 3 different pills, twice daily for a week. those pills look like horse pills.) but losing this much school is also not desirable. It is also impacting the treatment options: in hopes of preventing some nausea the doc decided to lower the Methotrexate dose and discontinued the Sulfasalazine. A bonus for him, because he hates taking his pills with a passion, but potentially not so great for his arthritis, but we shall just wait and see. At his last visit his joints were fairly clean so lets hope we do not get a set back. His hands still look bad, but there is no fluid in his joints.The swelling that is visibly there is permanent; his knuckles are deformed. It bugs him but for now there is nothing they can do about it. Maybe in the future if and when his arthritis is controlled, and he is done growing, surgery may be an option. The doc has referred him to a gastro-intestinal specialist to see if there are options to tackle the bacteria that is wreaking havoc on his body at the moment. In the mean time; school is hard and demanding. Being sick so often and always having to come from behind and having to catch up is starting to take its toll. Long story short: not good.  

Christmas is coming up and a new year is approaching, let’s hope next year will be the year we find a solution that works for my boy, he sure deserves a break.

In the mean time: have a wonderful December month and may the new year bring nothing but good!

Summary

First blog entry of 2015, wishing you all a healthy and happy year!

The Holiday season was a nice break to recharge and we were all spoiled pretty good!

I always love it when routines turn to normal again though, I thrive best with a regular routine!

My daughter is in the middle of writing her exams. Working hard and stressing much, but putting in loads of effort. Next semester will be a bit easier for her!

My son and I went for his check up yesterday. He has not been well for months and is missing a lot of school so we were hoping for answers and change. We spend 2 hours discussing his issues with his specialist and she agreed changes were needed.

When your summary sheet is not providing enough room and when you need two pages of new prescriptions, I guess you can say we all have work to do!

Trying to accurately remember all we are going to do:

• Almost 2 years on prednisone without much result. Time to try and wean him, because in the case of this drug, if it doesn’t help; it can hurt him. He needs to do a DEXA scan, where they check his bone density. Prednisone is known to decrease bone density so we need to make sure he won’t have to deal with that.
• Oral chemo ( MTX) makes him sick, nauseated to the point where he misses a lot of school. The doc suggested that if it is the MTX that makes him sick, we may have to consider the injectable form, it seems to cause less nausea. In order to rule out other potential causes of his nausea, he needs to have his bowels checked to see if he is not constipated. They have already taken a bunch of x-rays yesterday, to see if that is the case.
• A lot of stuffiness and respiratory discomfort is also one of his complaints. The doc found his septum is crooked and the passageway is very narrow. Also, as a young child he has dealt with a lot of reflux issues. Newer studies now show there may be a relation between that and respiratory issues. He may be predisposed to asthma. Another visit to an allergist is recommended, if that does not give us new information, an ear nose and throat specialist is next. He also has to do a special blood test that will show something about his reflux and acid levels, and how they currently may be impacting him negatively.
• His fingers still look horrible, they have not gotten worse but also not better, since he started biologics more than a year ago. New x-rays were made of his hands and MRI’s are ordered as well….3rd set in 2 years. The biologics he is on now are TNF blockers, (tumor necrosis factor) they basically try to trick the immune system so it stops attacking itself, by blocking these TNF, and at the same time practically shutting the whole immune system down. This approach seems to be not working for my son, so a whole different strand of drugs may have to be introduced. But before we make that change, we will give this type one more solid chance. Creating as much opportunity for success as possible,we have to up all his meds again, add some discontinued ones back in to the mix and be very rigorous and consistent with the administration of them. 
• The OT lady mentioned again we may have to start considering splints he can wear at night, to keep the range of motion in his hands as good as it can be.
• If we see improvement with all his issues, we may stick with this for a while, if we don’t we have to start from scratch with a new approach. Our next clinic visit will be in April, in the mean time we can hopefully get most of the other appointments done.

For the first time my son has acknowledged that in fact No,he is not doing well. The doc asked him very direct questions and he really had to think about how to answer them. It must be frustrating to have to deal with all this stuff right when you hit puberty, high school and all these life changes that should be fun and exciting. He is exhausted, mad and frustrated most of the time. In the mean time he’s amazing me with all he does.

While we were discussing all our possible options I asked if we could do something similar to what we have done when my daughter was in such a rough place. I learned something about her that I didn’t know before. Sometimes it’s good to not know everything, because knowing too much may have freaked me out. Maybe it was shared with us or not, maybe I just have blocked it out or simply forgotten about it, but apparently when she was doing so bad , she had systemic involvement. Systemic arthritis means that the vital organs are inflamed, which of course can be very serious. Since her IV treatments it has not ever reoccurred so we have passed that station, luckily.

All this is wearing me out, but I am an adult and I don’t even have to physically live it. I love solving puzzles and mysteries, figuring out tricky scenarios, but I have to say I’m kind of over this whole arthritis thing. I can’t believe how my kids always keep their heads up. They must be so tired of explaining and accepting, I believe half the time they don’t even bother trying to explain. Still after all the 10 years we have lived with this as a family , the misconception and the misunderstanding bugs me immensely. Every time we have to fight for simple things. Most days are great and we are mostly approaching this positively, but some days I wished my kids’ struggles would be validated and acknowledged by someone other than their mom and dad!

Lets make 2015 the year all of those suffering from whatever rare or unknown disease will be a little more understood, receive a little more empathy and a little more respect for the struggles they live through every day of their lives!

Moving Forward

     December is less than a week away. Quite some time has passed since my last blog post. A lot has happened too, which is probably why it took so long to update.

     My son has had a clinic visit in October, not a lot has changed.

 His fingers look bad, I try not to stare at them every time I see them, but sometimes I can’t help myself. 

     A couple of weeks ago we were discussing the institute of marriage and how people usually exchange rings to show their commitment.  My son was wondering how he was ever going to be able to find a ring that would go over his knuckles without it looking like a bracelet around his finger…the things you worry about.

     Still many drugs…slowly we are trying to wean him from prednisone but we have a long way to go yet. Enbrel is his new weekly routine, he seems to be used to it, but I’m not sure if I see results yet. We shall be patience and see!

     He had the opportunity to play volleyball with the seniors team of his high school this season. Being a rooky and being the only grade 10 boy, he did not have that much play time, but he trained hard, played some games and had a fantastic time with his team and his coach. The whole team showed fantastic effort and great dedication, and completely unexpected ( for most of their opponents) they team became zone’s champions and they got to represent their school at provincial championships. I’m pretty proud of the entire team and thankful he did get this opportunity. It did show him that; yes, his arthritis is hindering him but will not stop him from doing what he loves. Now on to basketball, try –outs are on their way. Here’s to hoping his knees and fingers will be cooperating and he can enjoy a great season.

number 9

     Both my son and my daughter had an ophthalmology appointment the beginning of November. Thankfully they both had no issues, and since my daughter is no longer using plaquenil, and my son doesn’t need to be seen more than once a year, we are good to go for the next couple of months!

     Today my daughter and I made a trip to the Children’s Hospital again. Bittersweet, because it was her last official visit there, before her transition to adult care.

Last time walking these halls as a patient for my daughter.

     She is doing fantastic, no inflammation to be found, her back is doing much better, and another med is discontinued, good stuff! All she takes now is one shot of humira every other week…what a way we have come since she started her journey with Arthritis, 10 years ago….

     She’s working so hard and making me so proud. She has been conditionally accepted to the college of her choice, enrolled in the education program. She has her school, her job, her social life, and what most people don’t realize is that she has to work twice as hard as anyone else. She does it with grace and most days with a smile on her face, no matter what obstacles she encounters! ( Like almost rolling her vehicle and now having to drive with mom again...) 

     My “little” girl is as tough as they come, with all of her 156 centimeters and her 41 kilograms. She picked out her graduation dress already, it’s pretty stunning, but it will have to be altered!

I’m very excited for her to start the next chapter of her life, I’m sure she is going to embrace it with open arms and give it her all…..just not sure if momma bear is ready for it yet!

Plan D

     Summer is over, time to get back to school.

Looking forward to the routine, but am a little sad this summer has gone by so fast. Also a bit disappointed we got so little accomplished on the health front.

     After communicating back and forth between researchers, specialists and the pharmaceutical company, the trial my son was partaking in was terminated.  A mistake was made, not one person was to blame, just a couple of circumstances combined, some fine print that was overseen, some misinterpretation, some lack of supervision, whatever it was: we had to stop. What it comes down to is that the trial has not been performed according to the guidelines that were set and is therefore invalid. We can not start over because he has already been exposed to the drug; it’s in his system, so again, a “contaminated” baseline. Too bad, so sad, but we have to move forward.

     The hopes we had to get a good start and see some great improvement is my son’s joints were crushed too. A lot of our time, our doc’s time, a lot of people’s time just wasted, unfortunately.  We made 7 trips to Calgary over the break and we have not made any gains. In fact, we are back to the drawing board and have to start from scratch.

     On to plan D.

     We decided we would give Enbrel a chance. It has never worked for my daughter, therefore we initially skipped it, but now with Humira not doing what we would have liked it to do, and the Certolizumab  being discontinued,  we thought we may as well give Enbrel a chance, who knows!

"Hop on the bed and let's check out those joints."

     So….in the process of getting that going. Insurance has approved it, the syringes are waiting in the fridge, and now we are waiting for a nurse to come and give him training. A less painful injection than Humira, but the down side is that he has to take it weekly. 

  

     Next week school start. First day of school there are volleyball try-outs. He is really looking forward to that. I am not, with his hands looking the way they do….but I’m not going to deny him this. We shall see how it all goes. 

     There is no need to look back; we do need to look forward. I have to admit though, that I would have hoped this summer would have given us some positive energy to start the new school year off on a good note.

 

     This too shall pass and we will tackle the beast somehow, we will even do it with a smile on! We've

done it once, we can do it again!

6 down...

     August has arrived, don’t even know what happened to July! Summer break they call this; I am exhausted!

     The weather is nice, hot and toasty, with the occasional down pour and thunder storm.

     Since the beginning of July we have made 6 trips down to Calgary, with today being the most recent one.

     My girl had a checkup. She is getting really close to her transition to adult care. We found out today her current doctor will be following her to the “Yard” ( young adult rheumatology department) to help familiarize her with her new team of medical professionals and to help the team get to know her and her history. Again I am very impressed with the thought that is put in to all these facets. Hopefully this will all make for a smooth transition. Plus we are excited we don’t have to say good bye to our beloved doc quite yet!

     She was found completely clean (that’s what we say when there is no swelling found anywhere in her joints!) and because of this, yet another drug was scratched off her list! No more Plaquenil for her, all she takes now, to control her arthritis is Sulfasalasine and Humira. Nice deal, because since she was on plaquenil she needed to have her eyes checked by the ophthalmologist twice a year and now she will only have to go once a year! Still some stomach issues but we have a plan for that too.

In the mean time; I’m proud of my girl, she’s as strong as they come, in the cutest little package!

the pile of paperwork is my daughter's file, and I'm afraid to say this isn't all of it yet....

     For my son it’s a different story, we are not where we want to be yet.

     Our first appointment in July was to establish a baseline, from where we could start this “new” drug. Full body examination, all affected joints were registered, checked on range of motion, swelling and pain. Blood work was done, urine samples taken. Questionnaires filled in by both my son and me.

     Three days after this we went to Calgary again, for a visit with the allergy specialist.  He was tested for probably about 80 common allergies. None of them triggered a reaction so that is good to know. The specialist had a plausible theory for the reaction my son has had. 

Since his immune system was “in a bad mood” at the time, with the arthritis being so active, adding to that a flu shot and on top of that his first doses of Humira ( and secretly I am also thinking he may have had an insect bite on his head as well) his immune system got out of control and reacted in the way it did, with the welts and the swelling. 

Basically all the triggers worked like gasoline on a fire and made for a big reaction.  So not really an allergic reaction, just all the symptoms! Chances are he may never react like this again, chances are he may, only time shall tell!  Somewhat reassured.

     Another three days later and we went back to the rheumatology clinic for day 1 of the trial. Again: a complete physical exam, blood work, questionnaires and the whole shebang. When we were “all clear” we went to the medical day unit where he received his first injection of Certolizumab. We stuck around for a bit to see if he had any signs of an unwanted reaction, but he seemed just fine so off we went!

     We were off for a whole week before we had to go again! ( appointment number 4!) Just a check up this time, full exam, blood work and questionnaire, no shot this time! Easy breezy!

     Appointment 5 was another week later. Full exam, blood work, questionnaires and this time it was time for shot number 2. So off to medical day unit,to get his shot and we were out of there.

     Appointment 6 was today. We were able to bring the girl child too so it was two for the price of one today! Again a full exam was done. To be honest; so far I don’t really see improvement, but we shall stay positive and allow it more time! Blood work, urine sample, questionnaire, and off to medical day unit again. Today he did his own injection: man what a trooper! He had done the injector pens before, but never a syringe. No big deal for my guy; let’s just do it and get it over with. Also one to be very proud off! We were send home with his next dose, we actually have a month off! Maybe...

impressive looking labels

     After our long drive home the phone rang. The doc phoned with some disappointing information. The representatives of the pharmaceutical company that give the (very strict) guidelines for the proper execution of this study, have failed to let us know we were to discontinue a certain drug before we could start this study. No Sulfasalazine…. He was supposed to discontinue before the start of the study. We have stopped using them as per now and we will have to wait and see if they will allow us to start over, with today being the baseline….I’m not sure what to say. I have to admit that I am rather disappointed to potentially see all this effort from both our medical team and ourselves be in vain….

6 down…..the drain? 

We shall see, to be continued! 

"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.

http://www.arthritistoday.org/what-you-can-do/arthritis-stories/growing-up/merel-morskate.php

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

http://www.arthritistoday.org/what-you-can-do/arthritis-stories/growing-up/merel-and-koen-morskate.php 

 

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 2^nd, 7^th, and 10^th. 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?!