Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Juvenile spondylitis

Hello, my KickAs friends! It has been a long time since I was back here with you. Thankfully, my AS (officially: undifferentiated spondylarthropy) has been giving me a break, so my life is very busy: homeschooling 3 boys, Boy Scouts, karate, music lessons, field trips, new home business, etc. I've missed y'all but have sent many people your way.

I have come to ask for some advice. I am fine experimenting on my own AS with Low Starch diet (TOTALLY works for me), Pilates, chiropractic, etc. But now my 8 y.o. very active son is having more severe join pains. My family is already gluten-free, so I hate to take all those treats away and make him Low Starch. My rheumy has ordered 2 blood test for me that should confirm that I should be eating low starch. Has anyone else heard of the new blood test like that? I didn't write down the name and the test isn't back yet, but I think it is an IgA. I'll be asking for that test for him at his appointment Monday.

Please tell me what has worked for knee, ankle, back pain for your child with AS. I was thrilled to have something on hand that worked for severe knee pain: wintergreen and peppermint essential oils. I have just started using and telling others about Young Living (www.youngliving.com) oils and have had many people with AS and other arthritis pain tell me that wintergreen works. We applied it before bed, but didn't use enough, I think, so he had a painful night. In the morning I put much more on and added the peppermint to help absorption. In an hour, "Look, Mom, I can walk normally again." In 2 hours, "Look, I can run!" We have reapplied 2x/day and the pain has not returned. I am SO grateful to have something that works without side effects.

Would you pursue a diagnosis, or just treat on your own so he isn't burdened with that on his medical record until it is necessary?
Any other tips?

I look forward to chatting with you all.
I have a quiet house with my husband and boys camping this weekend. Woohoo! That is why I have time to see y'all again.
Hope everyone enjoys a great weekend!

Ann
mom to three boys 8, 10, 12
Diagnosed with spondylitis in 2004
pharmacist who now seeks natural therapies including NSD & essential oils

What a handsome family you have, you look like nice folks.

I sure hope you figure out something for the little guy. When I was a kid, my complaints of joint pains were dismissed as "growing pains" by our family doctor. I suspect that spending my whole life "sucking it up" is what put me in the horrible shape I am now in. Your son is lucky to have you looking out for him.

and welcome back!

Chris

Hey Ann;
My advice is, if your son doesn't like a certain treatment/herb/oil/diet/exercise, don't force him to do it. If he says something doesn't work, BELIEVE HIM, and if he says it DOES work, even if you don't think it does, BELIEVE HIM. It's hard as hel1 to be a kid in pain, he needs to know his parents are on his side.
As far as pursuing a dx, I've always found that having pain without a dx means nobody believes you and you get no bennies, no handicapped parking, no breaks. I went 11 years without a dx and I hated it, and getting my dx was a blessing. I've never tried to join the military or the police force, so having a dx has never been a burden to me. Also, I kinda thought I was crazy for those 11 years and I might have been making it up . . . after all, people TOLD me I was making it up . . . even doctors told me that . . . it screwed my head up pretty bad.
If you get to where you think you need more help for controlling the pain (i.e. pharmaceutical/prescribed therapy, stuff like that) then please do take him to the doctor. Mostly, just listen to HIM, and if he wants to go to the doctor, take him, and if he doesn't want to use capsaicin because it hurts, stop using it . . . my folks didn't listen to me enough.
-Bridget

Thanks, Chris. They are good guys! I, too, was told I had "growing pains." Now I know a lot of them were costrochondritis. My oldest son has had some of those pains. :-(

I hear you, Bridget. I usually try to tie the added pain of eating wrong to the food recently eaten with the celiac disease. Hopefully, I can make the connection with NSD so we have more cheerful compliance. I won't do anything that isn't really necessary--the alternative drugs have plenty of side effects! BTW, he loved the wintergreen/peppermint. Not only because it worked, but because he smelled like candy. ;-)

Some people feel hemmed in by a diagnosis. I was glad to know that it wasn't all in my head as well. If I have a diagnosis, then I know what I am dealing with and can more effectively research treatments. My youngest son might want to join the military/become a fireman, etc, so I hope he isn't mad at me later if we pursue a diagnosis. I do listen to him, especially because he isn't a whiner.

Doctor appointment Monday.
Thanks for your input!

Could he be having a growing spurt they can be painful in some children.

Thanks, Yoly. Did you ever have growing pains so severe you couldn't walk? It just doesn't seem likely. Hopefully the doctor will be able to figure out something on Monday.

Hope you enjoy your weekend.

Hi again. Here is an update: pediatrician says his pain is "episodic" so no referral. She ordered some lab tests which I'll get soon, but she left a message and said they came back "normal."

Knee pain is back again today and impairing his movement. It is frustrating to not trust the course a doctor is taking. I'm glad the wintergreen/peppermint oils are helping and he is able to move better again.

I would love advice for parenting a child who is HLA-B27 positive and has had joint and back pain periodically since he was 3.

Good to see you all again!

Hi Ann

Eric was diagnosed at 9...his issues were his knees.

I dont know what you want to know, but please feel free to give me a holler. I will try to answer you as best as I can.

Great to see you again, Sassy! Cute pictures! Who's the sweet babe?

Woud just like advice on what worked:
What would you do the same? What would you do differently?
How was he diagnosed (with only knee pain)? Would you not pursue a diagnosis and treat with the means necessary without a prescription first?

It is easier to experiment on my AS than his. Trying not to be the hysterical mom many doctors think we all are. LOL

Thanks,
Ann

Hi Ann!
So good to see you posting here again!
Gianna was dx with Juvenile RA at age 11. She had knee pain since she was a wee one. I told her pedi several times but each time by the time I got her in..the swelling would be gone. He would dismiss them as growing pains.

When she turned 11 my family doc saw her after I explained her knee was very swollen and her pedi was out. He immediately red flagged it. Her knees were filled with fluid. They ordered blood work and her sed rate was high and most of all her ANA was off the charts. He immediately called a pedi rheumy. There was a 3month wait but my family doc called him personally explaining the urgency. She began to have back pain soon after. The rheumy got her in asap. After 3 visits of lab work ruling everything else out..she was dx with the JRA. Her new rheumy suspects JAS...but we may not know for sometime.

Write me when you can! Glad the oils have helped him!
You pal ...Angie We are LONG overdue for lunch!!!