Our world has recently been turned upside down, but not so suddenly as it may appear. The Lord had prepared me for what was coming and in many small ways I was prepared and saw it afar off. This long online saga will serve as both a place to share our story as well as record it for ourselves.
I. Diagnosis and Research
At the end of August our baby girl L was diagnosed with juvenile rhuematoid arthritis (JRA). The most recent name for this autoimmune disease is JIA, juvenile idiomatic arthritis. Idiomatic is just a fancy word for "we don't know what causes it..." It started with a constant limp on her right leg at the end of July. After a physical exam, x-rays, lab tests, and discussing family history L was diagnosed with JRA. Arthritis simply means inflammation of the joints. This form of arthritis is an autoimmune disease, which means it is the result of the body's immune system erroneously attacking the body's own tissue as if it were a foreign body, resulting in constant inflammation, pain and possibly joint deterioration if the inflammation continues unchecked.
We met a pediatric rheumatologist and a ophthalmologist to determine how widespread the inflammation was. The rheumatologist determined that only two joints were swollen, her right knee and left thumb, although her inflammation markers were systemically high.
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| L's lovable legs |
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| L's thumbs, and yes, she does regularly ask me to paint her nails. My diva. |
Because she is a child (not even 2 years old yet at the time of diagnosis) one of the concerns is how this effects her growth. So much inflammation and blood flow around the joints allows the growth plate at her right knee to grow faster than the growth plate on her left leg, possibly resulting in permanent imbalance. (Five months after the diagnosis, that is exactly what has happened. Her right leg is now about a cm longer.)To avoid this the inflammation must be reduced as soon as possible. The recommended treatment was to put her under general anesthesia and inject steroid shots into her two joints. This was recommended to be done every year for the next 4 years. I never felt peace about this recommendation and asked if we could wait until I got a second opinion.
We waited, I applied many of the healing methods I know and tried to reduce the inflammation without many drug interventions. We eat a lot of anti-inflammatory foods, applied homemade turmeric pastes to her knees (which helped; she frequently asked for them), upped her cod liver oil supplements and probiotics, gave her infant ibuprofen, later replaced it with meloxicam, juiced a lot of fresh vegetable juices that reduce inflammation, did energy work, removed
nightshades foods, lots of physical therapy, etc.... We tried a lot. She returned to her
chiropractor who offered invaluable insights and still aids in L's general well-being. We prayed and received
Priesthood blessings. I asked my sister (who also has RA as an adult), my anesthesiologist friend, my adult neighbor who was diagnosed with JRA, I collected everything I could about this condition. I read "Raising a Child with Arthritis" and "Clean." I attended an online Autoimmunce Summit, a week-long set of interviews with doctors, researchers, healers, and recoverees. I preordered a copy of "The Autoimmune Solution" by Dr. Amy Myers. We even attended a conference of the Arthritis Foundation's local chapter (The Family Rheum) where doctors, researchers and families educated and encouraged. I've been ravenous about collecting information.
In my research I found this:
"It’s really frustrating to me that so many people’s Rheumatoid Arthritis is caused by food allergies and a leaky gut, yet no rheumatoligist that I’ve met nor the Arthritis Foundation will admit this. I have read in many books of the link between leaky gut syndrome and autoimmune diseases but I will only quote from one, Fasting and Eating for Health by Joel Fuhrman, M.D.:
'It has been shown in scientific studies that many people with rheumatoid arthritis and other autoimmune diseases have increased intestinal tract permeability. Because of genetic or other insults to the digestive system earlier in life, autoimmune disease sufferers have an abnormality of the digestive tract that allows incompletely digested foodstuffs to pass through the intestinal lining and into the bloodstream.
Proteins in food are the chief culprits that can excite an abnormal immune response. A protein is typically made up of thousands of amino acids linked together. The digestive enzymes cleave the bonds between the amino acids during digestion, allowing the individual amino acids to pass through the wall of the digestive tract. When isolated amino acids enter the bloodstream, they do not excite an abnormal immune response. During the process of digesting a protein however, if a piece of partially broken-down protein, known as a peptide, is able to pass through the the digestive tract wall by mistake, this peptide can and will excite the immune system to react against it.
The peptide, containing perhaps a hundred amino acids, is now recognized not as a nutrient like an individual amino acid, but rather as a foreign substance that needs to be attacked and removed. Thus, the immune system produces an antibody to this antigen, and an antigen-antibody complex is formed.
These complexes are present in the blood in increased quantities in individuals with autoimmune illnesses. [because a leaky gut is usually present, allowing more incompletely digested proteins through into the blood] When these complexes are not effectively cleared from the bloodstream, they can become lodged in various tissues, where they cause inflammation.
In rheumatoid arthritis, for example, these complexes are deposited in the joints, and redness, swelling, stiffness, and pain develop, followed by destruction of the joint as the inflammation continues. The amount of immune complexes deposited in the joints corresponds to the severity of the arthritic symptoms.' -Joel Fuhrman, M.D.'
Doesn't he explain it so much better than me? Not to mention he clarifies the missing link that mainstream medicine is ignoring: the WHY and HOW. This research and link between leaky gut and autoimmune diseases should help remove this title "idiomatic". It is frustrating to me as well that the rhuematologist and everyone at the Arthritis Foundation meeting neglected to even mention this to all the parents present, searching for ways to help their children. I asked parents if they had tried anything else other than heavy drugs to help their children. I did not find one, but then again I didn't talk to everyone there.
II. How were we prepared for this?
So, why do I claim to have been prepared in advance? She was a colicky baby. She has had digestive disturbances off and on her whole life. Her behavior changes with certain allergen foods. Long before her diagnosis I looked into healing her gut. I attended the Food Revolution Network's online educational summit, I've read many books and articles on healing and nutrition and I learned about the GAPS protocol. It comes from a book called Gut and Psychology Syndrome: Natural Healing for Austism, ADD/ADHD, Dyslexia, Dysplaxia, Depression, Schizophrenia by Dr. Natasha Campbell McBride. It is the protocol that has aided an acquaintance defeat her Lupus (another autoimmune disease) and my sister come really far in her RA. My sister is currently on no medication, which is such a miracle considering her original prognosis of living in a wheelchair at such a young age! I read this book and was prepared to give this healing diet a try in my whole family before L even received her JRA diagnosis. I had Jared's support to try it from April to August of 2014. We were doing really well for about a month, and then my own food addictions got in the way and I fell off the train. I was really disappointed in my lack of discipline and own personal challenges getting in the way of helping my children. But I feel much more prepared to live a healing diet now then ever before because of all I've read and experimented with before she even received this diagnosis.
Not only did these recent events prepare me for this, but when I was 19 I began learning about my own digestive issues and experimenting with healing through diet. Four years ago my mother-in-law's battle with cancer encouraged me to research more and continue experimenting with eliminating dairy, using fermented foods, making bone broth, and attending more educational classes in the community.
III. Recent Improvements
Two months ago I took L to a holistic M.D. who was a pediatrician before she switched over to functional medicine. I wanted a second opinion on how to deal with JRA. Ideally I wanted to know how to heal her leaky gut, her diet deficiencies, allergens and common stressors. This new doctor,
Margaret Gennaro, explains on her site "how the body works." Her explanation falls exactly in line with the general conclusions I have come to over my 5 years of personal experience and research: It all comes down to toxins and the body's ability to eliminate them. However, she has a better explanation too:
"I compare your body to a bathtub. The size of the bathtub is your genetics and other hereditary/acquired tendencies called miasms. If your ancestors have had certain health issues or toxic exposures or genetic glitches, your bathtub will be smaller. (There is evidence that genes are affected by the environment in the science known as Epigenetics.)
The 3 faucets coming into the bathtub are:
- The foods that you eat
- The environment you are exposed to i.e. toxins (chemicals and heavy metals), infectious agents, electromagnetic frequencies, vaccinations (in those susceptible), environmental factors such as pollen, dust, animals, etc)
- Emotional traumas, issues and stress, personal and transgenerational
The drain in the bathtub is composed of:
- Intestines, liver and kidneys
- Immune system, lymph system, sweat glands, menstrual blood, acid-alkaline balance, hormones, vitamin/mineral/amino acid/antioxidant/nutrient balance, proper sleep, structural integrity
- Mental, emotional and spiritual healing, a positive attitude and support from loved ones.
If the drain is plugged up and the faucets are going strong (or one gets turned on more than usual), then the “water” in the bathtub will overflow. This causes you to experience symptoms. These symptoms can be anything from a runny nose to cancer.
When the body doesn’t get rid of the toxins through those usual routes or if the toxins are suppressed, the body will need to do one of two things with those toxins:
- Store the toxins. Examples of this are tumors (benign and even malignant), cysts, fibroids, enlargement of the organ or gland such as the prostate or thyroid, endometriosis, fat cells, excessive fluid, and “mental” illnesses.
- Choose an alternative route out of the body. Examples are skin rashes (eczema, psoriasis, or even excessive sweating), an increase in menstrual flow or frequency, lung problems such as asthma, sinus problems/allergy symptoms, and diarrhea.
Substances that suppress the elimination of toxins (and also create more toxins coming into the bathtub because they need to be detoxified) are steroid drugs, artificial hormones, anti-inflammatory drugs, birth control pills, long-term use of bio-identical hormones, illegal/legal drugs and excessive use of antibiotics.
The goal for ultimate health is therefore to decrease the toxins coming into the body and maximize the drain." (source)
I LOVE THIS APPROACH TO MEDICINE! Love it. When L was seen by this new doctor I learned a WHOLE lot about her body. Among the contributors to the JRA we found bacterial infections, heavy metal toxicity, parasites, emotional trauma, food allergies, and miasms. Since we've created a plan with Dr Gennaro and also done more energy work I have seen noticeable improvements in many areas, but still the joint inflammation remains. The improvements over the last 2 months include increased mobility, less fear and anxiety, better sleep, more laughing and smiling, more consistent bowel movements, and overall improved affect and cooperation.
The rheumatologist put her on a chemotherapy drug (Yikes!) and said it could take up to 3 months to bring the swelling down. The was a big pill for me to swallow, figuratively speaking. But I know synthetic drugs have a time and place in recovery. Although many symptoms were clearing up (like her whiny moods, fear and miasms were cleared, her sleeping improved, morning stiffness decreased, her walking improved to a near run, her bowels hurts less, and she even tells me "mommy, my knees is getting better") some blood work showed her inflammation had actually increased. Because of this the Rheumatologist recommended adding a heavy steriod to the already heavy chemo drug. I did not feel at peace about this immediately, but eventually did feel that peace. For whatever reason, this is a temporary aid that I believe her body needs right now. Thank goodness it was only for 3 weeks! I am very encouraged with the improvements, at peace with the direction we are going, and know everything is going to work out, no matter what that might look like in the end.
IV. Where do we go from here?
From here we continue many of the same methods that have been helping, and have added Total Body Modification (
TBM) with our chiropractor. I made a complete list in L's journal of all the methods we have/are trying. It is long and eclectic. I approached each method purposefully, systematically and prayerfully.
During this intense detoxification, the body is flushing out a lot of toxins, causing it to get worse before it gets better. That is both Dr. Gennaro's explanation and mine for the increased inflammation during the detox.
Although there are ups and downs during this time of healing and learning, I have great peace that everything that is supposed to happen will happen. I trust L's intuition to her own body. As long as she tells me "me getting better" I will trust that. After all this little body is hers. It was given to her for eternity and with it came challenges that I know she chose and needs in this mortal life. She is brave and strong and very selfless. This trial is helping and healing the whole family and we have her to thank for making the sacrifice for our learning and benefit. She is an angel in my life and I thank God for both sending her to us and for allowing me to learn by her side.
