16 year old son/Juvenile Rhuematoid Arthritis

[Guest guest]

Browsing through the newgroups, I came across this posting. A father

worried about his son's arthritis. A couple people have written back, so

far. Thought I'd post it in case anybody here feels like responding to

his concerns.

~Georgina

Subject: 16 year old/Juvenile Rheumatoid Arthritis

Date: Wed, 20 Jun 2001 11:02:21 GMT

From: " TIMOTHY CRIPE " <tcripe@...>

Newsgroups: misc.health.arthritis

Approximately 2 years ago my 16 year old son was diagnosed with JRA.

We noticed it when his class ring came in and was too small so he sent

it back for resizing, when it returned it was again too small. So far

it is only attacking his joints in his fingers and hands. We saw his

regular doctor who sent us to a rhuematoid specialist. At that time his

xrays showed no sign of permanent damage. We tried Sulpharsalizine for

about a year. He's been on Hydroxychlor for about 5 months now. His

last xrays taken 3 months ago show erosions on his knuckles. His doctor

has now prescribed Diclofenac.

These medicines seem to be doing NOTHING. I am worried about all of

these medicines taking their toll on my sons body. I'm looking for some

sort of alternative treatment to get this under control. Change in diet

maybe? Eliminate sugar maybe? Maybe a doctor that used traditional and

non traditional methods of treatment. Any REAL ideas?

-----------------------------------------------------------

Hi,

Sorry about your son having JRA. I was lucky and did not get RA until I

was in my late 30s. What I am going to say to you is only my opinion

after having inflamitory arthritis for over 25 years and reading and

posting in this newsgroup and news:alt.support.arthritis for less than

10 years. You doctor has done part of the right thing to do when a

young person has JRA. He started a disease modifing drug to try to

control what your son has. Sulfasalizie and/or Plaquinel are both mild

modifing drugs and sometimes (most of the time) are not strong enough to

control what is taking place. Have a talk with your RD about wanting to

be agressive about your sons treatment because as you said,,,,you can

see changes in his X rays. Ask the doctor about Methrexate, Arava,

Enbrel, or Remicade or his/her suggestions about a stronger drug.

You would not be normal if you did not worry about the side effects of

taking medicine for what your son has. IMO you should be worrying about

controlling the expansion of JRA which will take more and more from your

sons ability to live his life like a normal person. The changes that

JRA make cannot be changed back and it effects more than a persons

joints. Talk to your RD about this,,,all of this. Your son is getting

to the age where he is a young man and not a boy any longer. What he

thinks and understands matters and will have a great deal to do with his

attitudes and the choices he has coming up about education, jobs,

family, ect,ect.

I hope that you read and post in news:alt.support.arthritis where others

are that have or had JRA or children that have it. Good luck with it

all.

----------------------------------------------

... and from a parent ...

That was a great response. , I know exactly what you're feeling

right now. My daughter has had JRA for 5 years now and I have been

scared all of those 5 years for her. The disease and the changes it's

making to her body frighten me, and the medications and what they do

frighten me. However, I am so thankful that those medications are there.

Without them I think she'd still be in a wheelchair, and maybe stuck

there for the rest of her life.

Harvey's right--talk to your son's specialist and tell him all of your

fears. Maybe make a list before you go so you won't leave anything out.

If he's a good doctor he (or she) will listen to you and talk to you.

I'm one of the people who feels that conventional medicine is the most

successful route for treating these diseases. I've done a lot of reading

and research about all of the alternatives I could find, as well as what

are considered " conventional " treatments, and my conclusion is that I

want my daughter to benefit from the results of the scientific method.

Your son is lucky that you care so much and are willing to look for help

for him. Good luck to both of you.