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!

1 comment:

  1. Hi, Laeta! I absolutely love reading your blog. I am sorry to hear though that your kids’ childhood is being hindered by rheumatoid arthritis. I do hope that they get to the point where it is manageable, and where they can do what they want without worries. Your blog is very intimate, and I thank you for sharing those precious moments of you and your family. Take care!

    Terry Roberson @ MedCarePediatric