Sunday, March 6, 2011

What works for us

If you have a child with a chronic disease you of course will do anything to help them get better. Like most parents when J was diagnosed with JRA we had no idea what we were in for. Honestly, I don't even remember what I thought was wrong with her but I know arthritis never ever crossed my mind.

When Dr. S told me he was 99% sure it was JRA I did what most people would do.... I turned to the internet. I came across stories that broke my heart and others that gave me hope that a JRA diagnosis wasn't the end of the world like I had thought. I read that treatment was often naproxen and physical therapy for simple cases, like what we thought J had. The more severe the disease the stronger the meds. I never imagined my daughter would need long term treatment for arthritis.

Another JRA family came across a forum that is dedicated to only using what is known as Antibiotic Protocol, or AP, for several autoimmune diseases. If you do a search you will find several site that will explain in detail the treatment and results. Several people have had good results using AP. I read a few studies on AP when J was diagnosed but with as fast as her JRA was spreading, we didn't have time. She was in constant pain and the inflammation had reached her eyes. If we didn't do something quick she would have lost her vision at the age of 3.

Amy says just about everything I would about AP, "If it were me? Heck yeah I would try alternative therapies! But for my child? Is it really worth the risk if that therapy fails? Especially when you consider that her arthritis isn't only in her joints, it's in her eyes! Would you really, I mean really risk your child's eye sight just to try something that may or may not work? And before you say it, YES, I knooooow that the meds that we inject her with are dangerous. I know that, believe me I know and I hate it. But for us, when we look at everything and weigh it all out, the risks balanced with the proven success of these meds wins out hands down over anything else."

What is different about Amy and I is the fact that I DO have RA along with a few other autoimmune diseases. I have been on long term antibiotic therapy with no improvement in any of my symptoms or disease activity. My pain had got to the point where it was taking over my life. I couldn't do anything. I was not the mother or wife I needed to be. There was a 3 month period in 2008 where things were so bad my husband had to take medical leave so he could take care of me and the kids because I couldn't do it. There were days when I couldn't leave my bed. Last night Rick and I were talking and he was telling me things that happened during that time that I never knew about.

I know there are more stories like mine just like I know there are stories about AP working. I have lived with chronic pain and fatigue for most of my life. My mom says it goes all the way back to when I was about 18 months old. I've done physical therapy, been on countless meds for just about everything you can think of but the only thing that has helped me has been the TNF blocker, Enbrel. I am well aware of the risks associated with the med. (We had to decide what to do when J's arthritis running wild through her little body so I researched the hell out of biologics.) For me, my quality of life sucked. I couldn't go grocery shopping without using a scooter. I was missing Matthew's t-ball games and events at school with the kids. That was not what I wanted my kids to remember. I was severely depressed and beginning to think my kids would be better off without their sick mom. I don't think anyone knows how depressed I was.

These meds that so many people think are evil have saved my life. They've given Jordan a change to be a normal child who can run and play and SEE. I don't force my treatment plan on anyone and I don't talk about people who try something different in a negative way. If you ask me I will tell you what has worked for us and what has not. I know people who do not agree with our decision to put J on these meds but we did what we had to do to give her a shot at a normal childhood. Yes, she is different and always will be. But you know what?? Because of her arthritis she is the amazing person she is. How many almost 9 year olds do you know of that want to help other girls like herself? She offers advice to kids her age who are just diagnosed on meds, doctor visits and how to tell friends they have JRA. She writes about her experiences with arthritis because she wants people to know how it feels to be a kid with "an old persons disease."

So, you do what you have to do for yourself and your family, I'll keep doing what's best for mine.


Amy Cunningham said...

See? I knew that you could put your own spin on it :) Another great post. I loved the part about it all making Jordan who she is. SO true!!! While on the subject, I have been meaning to tell you that Bean and I watched, I think ALL of Jordan's videos one night. Bean picked up on a part in one of them where Jordan's shot hurt, where normally it didn't. Daddy pointed out to Jordan that she flinched her muscle and that's why it hurt. She got mad and told him no she didn't, love that spitfire attitude. But, it was either in that one or another that Jordan says herself that as long as she doesn't flinch, IT DOESN'T HURT. Bean has been holding onto that ever since :) She works at it so hard each time to , not flinch, just like Jordan says ;) Tell her thank you, please?

Living AutoImmune said...

I am so glad J was able to helped Jenna! That makes me so happy :) I have to remind J not to flinch too. I've tensed up and flinched before and it does hurt more. I've learned so much from these kids :)