What is juvenile arthritis?
Juvenile arthritis is a disease in which there is inflammation (swelling) of the synovium in
children aged 16 or younger. The synovium is the tissue that lines the inside
of joints.
Juvenile arthritis is an autoimmune disease. That means the immune system, which normally protects the
body from foreign substances, attacks the body instead. The disease is also
idiopathic, which means that no exact cause is known. Researchers believe
juvenile arthritis may be related to genetics, certain infections, and
environmental triggers.
Not all symptoms are
shared by all children with the disease. Moreover, the symptoms of JIA can
change from day to day.
The type Malachi has:
·
Oligoarthritis, also called pauciarticular juvenile rheumatoid arthritis, affects fewer than five joints in
the first six months that the child has the disease. The joints most commonly
affected are the knee, ankle, and wrist. Oligoarthritis can affect the eye,
most often the iris. This is known as uveitis, iridocyclitis, or iritis. This
type of arthritis is more common in girls than in boys, and many children will
outgrow this disease by the time they become adults.
Back in
February, Malachi was playing and hit his left knee on a metal bar on one of
his kid’s chairs and his knee immediately swelled. He cried for a few minutes,
but then didn’t complain about it. However, he limped on it and the swelling
didn’t seem to go down. A week later, he and I were headed to Michigan to visit
my parents. While there we visited a
walk-in clinic, who sent us to the local hospital, who finally sent us to a
pediatric orthopedic surgeon. From what he could tell he thought it was a
sprained MCL (ligament) and
that it would heal up within a month, but if it didn’t we should get an MRI. Malachi
was slightly limping, but not really complaining about pain. We were hopeful.
In March he
was still limping, but because he seemed to be doing fairly well and the cost
of travel is so expensive we held off for a bit. In April, we were in Washington and were able
to get an MRI at Seattle Children’s Hospital. We called a month ahead to schedule an
appointment and there was only one opening available for the time we were there.
That was just for the initial “meet and greet appointment”! They were busy. We
were very thankful that they could squeeze us in for a visit two days in a row
since our schedule was to leave WA to head back home and we were running out of
time! He also was progressively getting
worse and not wanting to use his hurt leg at all and was crawling around
everywhere. The MRI showed the arthritis and we met with a Rheumatologist to
see what the next step would be. (Again this was an answer to prayer since they
squeezed us in.) We explained to them the cost of travel, especially the leg
from King Salmon/Naknek to Anchorage which is normally $400+ per person. We
told them that if possible, we would love to be able to continue things in
Anchorage if it was needed. However, for certain reasons, they said we should
come back down to Seattle.
In May, just
a few short weeks later, Malachi and I went back down to Seattle for a week.
We’re so thankful for a place to stay with family and people to visit with in
between appointments. At Seattle Children’s he had steroid injections (while
sedated thankfully!) into both knees
which seemed to help a lot! They decided to do both knees as they thought he
probably had some arthritis in both even though he only had an MRI on the one
knee. He was doing really well and a few days later was finally walking just
about normal which hadn’t been the case since February. Unfortunately, after we
got home, to make things even crazier he fell on the hard floor and fractured a
small part of his lower femur…on the same leg! We brought him to the local
clinic here, but they have limited resources. So, ANOTHER trip the first week
in June, this time thankfully just to Anchorage. God worked the timing out so well
for that flight as Jeremy was flying the Cherokee 6, the AFLC’s six seater
airplane in to pick up some of our summer team folks. Malachi and I were able
to catch a ride rather than flying commercially, which is pretty crazy during
the summer months. Malachi got a cast on
for 5 weeks. He was such a trooper with it on and rarely complained even with
his lack of mobility. He sure is getting heavy to carry though! The beginning
of July he got the cast off and began to get mobility back.
You would
think the story would be over by now, but it’s not. It’s been such a whirlwind,
so the days get kind of mashed together. Once we got home we enjoyed being able
to do more things outside and I enjoyed not lugging him around everywhere! But
wouldn’t you know that just a short time later he was walking/running around
the coffee table and bumped his ankle. We don’t know if he was nervous or going
through a sort of “PTSD”, but he immediately cried and it seemed to hurt him
quite a bit. He refused to walk on it for a week and a half. Some x-rays showed
nothing, so it may have been a sprain of some kind. We were curious if kids
with arthritis tend to be more “fragile”, but it’s so different for every kid’s
arthritis story that it’s hard to know. We are hoping and praying that he just
keeps getting better and better and “mishaps” don’t happen quite so often.
In the
beginning of August we again headed to Anchorage. There are two rheumatologists
who come up from Seattle every two months. They are only there for three days,
but it’s easiest to try to work with our schedules and go there when it’s just
a follow-up appointment. We had three (with a surprised 4th) appointments while
we were there. The first one was a follow-up with the orthopedic surgeon and it
was all good news there, so we hope to never see him again. Haha. The second
appointment was with the rheumatologist. We weren’t sure what to expect since
Malachi had had two injuries since the injections back in May, so we thought
that would change things. He still favored his left leg and when he did things
like run, he had a bit of a hobble. Or if he would jump he would lean more on
the right leg. Overall, that appointment went super! The Dr. we saw was one we
had not met before, but she was very friendly and great with kids and made it
fun for Malachi! And it was pretty short, which he is always a fan of. She said
that his arthritis for now seems to be doing well. The inflammation was a lot
less and it didn’t seem like there was any fluid build-up. When she had him put
his legs straight his left leg was at a very slight angle, so she mentioned
that she would like to see that completely straightened. This actually led to
the surprise appointment with a physical therapist that we got to see 10
minutes after we left there and we just had to walk down the hall! And of
course that’s all just fun stuff for kids, so Malachi would have played there
all day if she would have let him. She was able to give us a few little
exercises to do at home to work on his left leg. The last appointment was with
the ophthalmologist. With the type of arthritis that he has, they very much
encourage you to see an ophthalmologist every three months. As I included at
the beginning, there are a small number of “cases” where they can have
inflammation in the eyes. This is nothing that can be seen by just looking at
the eyes and at the very beginning stages you wouldn’t have any idea they have
it unless it’s with their fancy equipment at the appointment. If not treated,
it can lead to serious problems, including blindness. So, what we are doing
right now to treat it is that we had given him eye drops six times a day for
two weeks, and are now on four times a day. We also have weekly injections that
we do at home. Thankfully, it’s a tiny needle right in his thigh and he doesn’t
feel a thing. Also, thank the Lord that there hasn’t been any side effects
since common ones are fatigue and nausea. Please pray with us that his eyes
will be clear of inflammation! Since the eye inflammation was discovered, we
actually will be headed back in next weekend, September 9th with an
appointment on the 12th. We also have a tentative mid-October
follow-up with the rheumatologist. Goodness, we never in a million years we
would be traveling in and out so much!! Malachi doesn’t mind because he gets to
ride the elevators! Maybe he should start taking monetary tips for pressing the
elevator buttons for people.
Last week he
started Kindergarten and seems to be liking it! He has a very nice teacher and
I think he is getting comfortable being there since he already got in trouble
yesterday. He’s used to being the only child, so this will be good for him! They
are also very understanding with the trips in and out, but they’re pretty used
to that because of where we live. He is also doing well and we haven’t noticed
any limping and he loves running!
Thank you so
much for your prayers! Of course we’ve been concerned at times, but we are so thankful
for how he has been doing so far! There are kids out there who have it far
worse. Pray for a cure!
April June after getting the cast on
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