This is an excerpt from a recent post on a thread I put on the JDM support page on Facebook. Since this is my own private blog, I feel free to elaborate more, here in my own space.
“I have been waiting for the right moment to talk about this on here, because I know everyone has such strong opinions, and here I humbly offer mine.
But, let me begin by saying this: I insisted that my two doctors who had very different opinions communicate and work together because I am such a firm believer in the body’s ability to heal itself when given the right things it needs. I know that may sound weird to some, but to me, it is as common sense as it gets. And I am NOT (even though my name may sound that way-lol-) some free-spirited tree-hugging hippy. I am a mom, with 2 extraordinary children each with extra-ordinary conditions, which necessitated me to rise to the status of extra-ordinary.
That being said, we have not put all of our eggs in one basket so-to-speak (with steroids, IVIG etc), because the statistics on conventional medicine is just as scary, when you research it. So, we also looked into, and have been treating Vivia (right alongside the conventional stuff) with many different natural methods as well- which also has studies, and research, and scientific evidence to back it up. I created and am managing our own Integrative Path, if you will, bc my integrative doc whom we now/also see on a regular basis, had never treated this specifically, although he had treated it in a few adults, and successfully gotten them into remission without ONE drop of Prednisone. So, I had them talk to each other, and she (our rheumy) is very open to the additions that I insist upon, and whether she was skeptical or not, she can’t argue when she looks at Vivia’s progress month after month now- RAPID progress.
THAT BEING SAID: When first dx: Vivia was at the height of flare! Rashes all over her face for YEARS, papules on her fingers and toes FOR YEARS, weak and lethargic. We were told by rheumy it would be at least 2 years before her pred was tapered, and to expect a 2 year (at least) road to remission. Here we are, 6 months in, and she is doing remarkable. Her blood levels were back to normal after three months of our natural regimen, then ONE IVIG infusion (3 months in). Even my rheumy has to agree that her healing is happening fast. And her strength is amazingly increased. Some may say here “well, she obviously didn’t have it that bad” but that would diminish the amazing recovery we are witnessing, and diminish all the hard work she, and we have put in place to create an environment conducive for her body to balance her immune system. We are not doing any weird voodoo, or heebeejeebee stuff, just integrating several all-natural things into her meds regimen.
I know every child is different, therefore treatment is not a formula- but I believe with all my heart that there are other options, not just one. And through the exploration and research we have done, and utilized- my daughter is herself again, in only 6 months. We are still tapering her off the ‘roids, being anally vigilant about her sun exposure, and are proceeding carefully with the rheumy’s guidance and blessing. And I am not saying it was ONLY the natural stuff that worked, but I am saying in our case, it was/is the COMBINATION that is achieving this.
I have found through this journey that there seems to be this “Great Divide” between what we in the US call “Conventional” medicine, and “Natural” medicine which is an integral part of medicine almost everywhere else in the world. So, to answer your question, I do believe that there are other options to going back on steroids, but I am not a doctor, and if you feel that his current condition is at “emergency” level, then you may want to consider it, to get the “emergency” back under control. Then sustain with natural lifestyle changes to support long-term remission, because there are many things that our kids (and us) have to endure, and are told are “normal” in this modern world that could be sending their little immune systems into overdrive.
I’d be happy to talk with anyone offline about our personal regimen, and what revelation I have had through our journey. And also to share specifics that we have worked with our natural MD pediatrician, and specialist to achieve her current and ongoing victory over this nasty condition. I even hesitate before hitting “send” bc I so do not want to be taken the wrong way. I believe every family must deal with this in their own way. But I wanted to be a voice for “options.” Again, in humility, just sharing my experience. ”
Let me add here now, that this road of questioning, educating myself, researching, and really just plain believing sometimes is the road less traveled. It has been really hard feeling like I would/could potentially be harming my child if I was “wrong”. But I don’ t know how else to explain it other than I JUST KNEW this was/is what’s best for her. I do believe I have also had some major divine direction given which has fueled my ability to break “standard procedure”, and several integral people were placed in my life, and already were in my life to guide me towards building the strength to follow through with it.
Here’s what I saw…
I call it: Vivia’s Wheels Of Healing. This first wheel represents her at the center, and this intruder called JDM. Now, through much research I found that JDM, as other autoimmune diseases, are caused by several things that all have to be present, all at the same time, to begin to “manifest”, which is really just the point at which her body begins to breakdown in its ability to heal itself, the way it was designed to. A “perfect storm” if you will.
Then, I saw this:
It showed me her healing and different components (things we could actually DO) to heal or manage each individual area that was leading to that “perfect storm.”
Most people, except extreme atheists, believe we are triune beings, made up of 3 parts: Spirit, Soul, and Body. And I believe Autoimmune Diseases include and attack elements from all 3. So, peeling the layers and seeing what needed to be healed and fixed, and what to do to manage it, or correct it, so that my daughter has as much possibility for success- was a necessity for me.
Again, there are other things on this wheel, such as another spoke entitled “Emergency Management” which did/does include: conventional medicine (but I only view it in a very “ER” fashion. To be done long enough to get the emergency under control, and no longer. Another “spoke” on the wheel was/is swimming falling under the “body” category. She regularly swims either at indoor pools or in the evenings in the shade. I had this crazy thought, “What if she became an olympic swimmer, in the face of this condition where she shouldn’t be outside in the sun, and shouldn’t be strong enough?” I can tell you one thing… SHE ABSOLUTELY COULD if she wanted to!
SO, WHAT ARE WE DOING, THAT ANYONE COULD DO?
We got back to the basics. What are the fundamental things that we should do, be doing, or should’ve done to create a firm foundation for even a healthy body, much less a diseased one?
1. BARE-BONES, EVERY ONE SHOULD BE DOING THIS: A STRONG PRO-BIOTIC (We do the Garden Of Life brand, RAW Probiotics WOMEN (not child strength) bc of the severity of her condition). See them HERE. You can also view the brief informational video that describes the product. (Doctor recommended to us.)
2. BARE-BONES again, Making sure Vivia has her necessary daily needs of fruits and veggies. How did I do this with a very picky 5 year-old eater? JUICE PLUS. Awesome awesome product that gives me peace of mind. My kids eat 4 gummies a day. 2 fruit, and 2 veggie. This, plus my food that I prepare for them, ensures that they are getting what they need. I took the cost of this right out of my FOOD BUDGET, because I knew we’d be getting way more bang for our buck here compared to wasting loads of money on foods devoid of any nutritional value of punch. READ ABOUT JUICE PLUS here. (Pediatrician recommended to us after dx.)
3. Ninxia Red Wolfberry: UNBELIEVABLE. THIS IS A KEY, so don’t let me lose you…If I didn’t just see the difference this stuff makes with my own eyes, I would be completely skeptical- And I WAS, at first! Everyone in the conventional medical field tells us that with autoimmune conditions, you have to be careful of stimulating the immune system. Autoimmune conditions appear when an Immune System is Confused, and Overactive. It doesn’t know who are it’s friends and who are it’s enemies, so, it just attacks them all. Therefore, when several different people in my life approached me about trying this, I was like, “NOPE, too much vitamin C!” I was afraid it would have the adverse affect on Vivia, and cause her to flare all the more.
Something I have grown to realize is that there is a see-saw happening inside the body where, when it is too enflamed, it sets off a chain reaction which leads to, eventually “flare”. Figuring out what contributing factors are leading your particular body to become inflamed, is a huge key to your success in personal health. W/ an autoimmune person who has a confused immune system- friends of the body, such as Vitamin C- are translated as “enemies” instead and can cause inflammation when it shouldn’t, normally. Even though the testimonies I was reading of people being cured of things as serious as cancer and other chronic conditions when taking this, again, I had that nagging argument in the back of my head- “But what about the vitamin c boosting effect?” As we know, we can’t have that, right? or maybe not…
SO, all that to say, is this: I dug and uncovered the studies that were done in China SPECIFICALLY ON AUTOIMMUNE PATIENTS. Basically, This Wolfberry has the highest antioxidant level on the PLANET. It is so high- (meaning it is so ANTI-INFLAMMATORY, it actually bears the ability to REDUCE inflammation in the body with only small amounts). That accomplishes two things at once: BALANCE of the immune system, and REDUCTION of current issues/symptoms caused by inflammation- (which causes the imbalance, and the vicious cycle goes on). In other words: 1. Take arrest the offender, and 2. Restore balance in the galaxy. UNREAL! As soon as I read that, I had the confidence to give it a try. Or for Vivia to give it a try, rather.
She’s been on it for 3 months now, regularly, and we have seen miraculous results. HER STRENGTH IS BACK FULL FORCE. HER ENERGY IS BACK FULL FORCE. HER ARTHRITIS IS GONE. HER SKIN INFLAMMATION is COMPLETELY GONE (rash). WE HAVE BEEN GIVEN THE GREEN LIGHT TO BEGIN THE TAPERING PROCESS. IT HAS HELPED SUPPORT AND MAINTAIN her blood levels at “normal”. I could go on and on.
You can read some more about it HERE, and here; and if you want to try some: CONTACT ME (at the top of the page, click “CONTACT: , I’ll hook you up. That’s how much I believe in this stuff. One bottle goes a LONG LONG way.
4. We went “non-processed” with our diet. Basically switched from dead foods to living foods. But that’s a whole ‘nother post.
5. Essential Oils: “Our Missing Link”. SO much to say here, but it’s 2 am. Will come back and share this HUGE piece of our puzzle. But in the meantime, feel free to get a sneak-peek here: But keep one thing in mind: Amazing Science to back this stuff up! But that’s for later…