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Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Sunday, March 6, 2011

To Each Their Own

Since her diagnosis nearly three years ago, we have heard numerous alternative therapies to treat Jenna's diseases. I appreciate that people think they are being helpful, I really do. But in all sincerity, do they really think that they know more than the doctors? In the beginning I would be intrigued when someone would offer something to try and I would research it. But, I never really felt safe or secure in the ideas. 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. Is it maybe just that people don't understand that this is an autoimmune disorder? Maybe they don't even know what an autoimmune disorder is. I know that it can be confusing, heck, nearly three years in and I'm still learning! We can't simply treat the inflammation and the pain. We need to treat the disease. Your immune system, that thing within your body, designed to protect you against illness and infection actually attacks your body therefore making you sick when you have an autoimmune disorder such as juvenile arthritis. One specific alternative therapy that I have heard of a few times but never paid attention to is antibiotic protocol. It's come up a couple of times in my arthritis family circle (love them!). I never looked into it because it simply didn't sound sensible to me. For one thing, you use antibiotics to kill a bacteria making you sick, there IS no bacteria making these kids sick. For another, how many times have we heard that antibiotics are being over used in kids and therefore a great many of them no longer work?! Most pediatricians refrain from prescribing antibiotics anymore unless for serious infection because of this. So why would I treat my child's autoimmune disorder with antibiotics? I doesn't make a bit of sense to me. Well, there is a group that has made frequent visits to my blog. I keep seeing them pop up but never thought to look into who they are or what they are about. The name of their site didn't ring any bells, but it possibly should have. Antibiotic protocol is right in the name. Finally, the other day it registered with me so I went to their site and looked around. They are of the belief that antibiotic protocol is the ONLY route to take and basically we are all fools for thinking anything different. As the title of this post says, "To Each Their Own". Treat your child's disease however you like, it's not my place to judge you, shame you or mock you. Shouldn't we get that same courtesy? And why hide out in the shadows? If you are going to visit our blogs, our discussion boards, etc., Why not speak up? You see what they are doing, and there is only a handful of them, they visit our blogs and boards, not to help us, not to educate us, but to gather information about us and our kids to share amongst themselves. WE make our lives, our stories, our information public because we want to reach out to people, have people reach out to us and all be there together for on another on this really crappy road. Why are they hiding? Not only is my blog public but I also don't moderate comments. I have been told that I am crazy for doing this. I have nothing to hide, I'm only here to help. On their site, not only do they keep certain areas under lock and key, it states clearly, "Don't mess with us. No exceptions. The WTF Management Team.". Well now, isn't that just a warm and fuzzy welcome? So basically if you don't agree with what they say, don't bother registering, becoming a member and voicing your opinion. I can't even find anything on their site or on another that they recommend that even says how AP works. What do you take? How often? For how long? They talk a lot but don't actually say anything. I plan on asking Jenna's doctors at Duke Children's this week about AP because I like to be educated and well informed. I'm actually very eager to hear what they have to say about it. My blog will continue to be public and comments will continue to not be moderated. I have a lot of people finding this blog by searching key words. If I can help even one person feel as though they are not alone then it's worth it. And if you have something to say? Say it. I won't delete your comment. Just be prepared for the comments that follow. I've been attacked once already on here, we Moms stand STRONG and UNITED.


Kelly said...

Excellent points, Amy.
Intellectual honesty has been a popular topic lately and I can't wait to pass on this great post.

Amy Cunningham said...

Thank you SO much Kelly! That really means a lot to me. I have been mulling this post over inside my head for days now just trying to figure out how and what to write. Then, like always, I had that moment of clarity and it all just came out my fingertips :)

Living AutoImmune said...

I think this is awesome too but you already know that ;)

justsaynoenore said...

Well, you delete posts you don't like. I just searched our site and the word "Jenna" shows up nowhere. You really are a piece of work.

Amy Cunningham said...

Here is Cathy's 1st comment that SHE deleted before I had a chance to get on and respond to.

justsaynoenore has left a new comment on your post "To Each Their Own":

Well, why did you visit our site and not any contribution or comment either? Your blog is here too, if you don't want people talking about it, why are you complaining people visit it and talk about it?

1) There is a whole section on how Antibiotic Protocol works, its history, and the science backing it up.

2) We are harassed by other posters who don't share our beliefs like this thread) and we ban anyone who comes on and harasses us. We are very welcoming to you and anyone else who wants to enter in and post in a mature manner. We ban trolls and other nonsense. You would too.

3) We have been watching you too come onto our site, gathering information, so you could write up this disparaging blog about a group of RA patients who treat with a DMARDS antibiotic approved by the American College of Rheumatology, which is not recommended for small children. What is your beef?

I suspect that the person who shows no tolerance to other's personal health choices is you, not us.

Take care ~~ Cathy Harris

Amy Cunningham said...

If you actually read the post Cathy then you would know why I didn't bother commenting. Your board makes it very clear that you are not interested in anyone else's opinions and you will ban anyone that disagrees with you. So why bother? Also, read the title, "To Each Their Own". Why do you judge?
To respond to your 2nd comment, What post did I delete?? And when and where did I say that your site used my daughter's name???

Lentini Family said...

I am so glad that you share your story and your concerns. I have learned so much from you.

Amy Cunningham said...

Not sure why you keep posting and deleting, but I'll just keep putting them back up for you. Because I'm friendly and welcoming in that way. And I saw your sticky, there just wasn't a whole lot of info. Which is why I felt it would be best for folks like yourself to post well thought out, educated, kind comments. Not attacking people and judging them as you have done in your comments.

justsaynoenore has left a new comment on your post "To Each Their Own":

Amy, I posted it, it appeared and then it disappeared. I assumed you deleted it.

Here is your quote from this thread:

" ... they visit our blogs (a crime? it's also public Amy, lock down what you don't want the general public to see unless you are a registered member, like we do), not to help us, not to educate us, but to gather information (like you did with our site?) aboout us and OUR KIDS (HELLO) to share amongst themselves."

Amy, Minocin is a recognized DMARDS by the ACR. It treats mycoplasmas, not bacteria. The thread WHAT THE HECK IS AP is a sticky to the top of each page and explains AP, suggested reading, tells the history and the science behind AP, plus alot more.

Your 3/06/10 thread:

"I never looked into it" - that is obvious.

"I can't even find anything on their site or on another that they recommend that even says how AP works" - its stickered to the top of each page.

If you had bothered to look at the signatures of some of our members, you will see they are also on other DMARDS, so your lofty pronunciation that we only believe in Minocin is a lie.

If you cannot even write a honest blog and tell the truth about another's website, I suggest you stick to this one. Nobody made you come over to our site.

I hope your daughter finds a cure and remission.

Posted by justsaynoenore to Jennas JIA & Uveitis at March 13, 2011 5:29 PM

justsaynoenore said...

I don't know why your site keeps posting and deleting either. Thanks for putting them back up.