Did you know children get arthritis?
This picture of Ryanne, was taken by another of my grandaughters, Sherry, she hand-colored the B&W picture,
and won 1st place in a local photography competition..
Ryanne wiggle's her toes in the sand. She rarely goes barefoot because of arthritis.
The treatments are very expense and include;
Our Ryanne is one of the faces... Ryanne has Juvenile Rheumatoid Arthritis when Ryanne was 6 months
old her mother noticed Ryanne did not seem be progressing normally, after convincing several doctors
she was not a hypochondriac, Ryanne was diagnosed at 18 months as having Juvenile Rheumatoid Arthritis,
more tests revealed that Ryanne had it in 25 plus joints.
The only treatment is to try and prevent permanent damage to the joints in hope that some day there
will be a cure.
Juvenile Rheumatoid Arthritis is an autoimmune disease that among other things attacks the joints
which would eventually become immobile.
(From an Arthritis Foundation hand-out)
- Intense physical therapy, which Ryanne underwent, for four years, 3 days a
week, two hours a day.
- Orthonics (inserts in her shoes) for her feet, splints for her wrists that she wears
as much as possible during the day and splints she wears at night for her hands.
- Serious medications such as Vioxx, Methotrexate, etc.) which work to suppress
the immune system, but they are hard on a growing child and can cause liver damage,
they also make Ryanne very susceptible to any and all infections...
- Because Juvenile Rheumatoid Arthritis can also cause blindness she has to have her
eye's checked four times a year.
- Ryanne started a new medication in November of 2002 called Remicade the drug requires her to spend a full day in the
hospital every 6 to 8 weeks where she receives an I.V. as long as the drug works she will do this the rest of her life
although the treatment is very expensive ($2,500 to $3,000) so far the results are nothing short of a miracle she still
does not have normal strength or endurance, and probably never will, she is able to do most of the things that a normal
child her age can do
- Because of the serious nature of the various medications that help Ryanne live a normal life,
we have to watch her very closely because the medications she takes to help with her
arthritis suppress her immune system, and any virus like a cold, flue or Chicken Pox can quickly
become very serious if we are not careful, the medication is also hard on her organs because of this
she has a battery of tests regularly.
Although to most people Ryanne looks normal, just like any other 6 year old, she has a great
outgoing personality but she also lives with more pain then most people will ever know, she does have
her bad days, she does not complain, and to all that know her, she is a joy to be around...
- Ryanne is now 10 and is doing great...although she had a little setback last summer the medicine she had been on (Remicade) that had allowed her to
lead a relatively normal life quit working, and the symptoms returned, and she had to start therapy again but then in the fall, the doctors started her on
a wonderful new medicine called "Embreal" we give her 3 shots a week, through all this she has been a real trooper, now she is back to normal, off therapy
and is able to do most of the things a 10 year old (going on 13) can do....
(Sweet 16) update........
- Ryanne is now 13 doing great...Embreal is still working and they have been able to lower the amount of medicine she needs, she's now down to just 2 shots a week,
she still is not able to participate in regular PE but she has 1 1/2 hour swim lessons 5 days a week, she is quite the swimer and should be able to be on the high
school swim team next year....
- Ryanne is now 16 and is doing great!! although she still is not able to participate in regular PE...She has been off Embreal for several months, but has had a flair
up so she may have to go back on Embreal, otherwise she is able to be active and enjoys high school where she is a 'IB' student (International Baccalaureate) with a 4.0 GPA....