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.
