We've certainly had the run around with doctors. Most people we've met seem completely unconcerned with Charlotte's food allergies and intolerances, since she is so chubby and developmentally fine. We've been told countless times that "most kids grow out of their allergies" and "she'll get better with time." Sure, that's fine in theory- but in practicality, when you're the one responsible for feeding and caring for that child, that doesn't work. What exactly do you do at mealtime? You feed her what every other kid eats and you're left to deal with eczema, sleeplessness, hours of crying, clinginess, and a very sad baby crying, "hurt, hurt, hurt." (See if that doesn't break your heart while not being able to soothe or console her from 3-6am.) We've been told we're over-exaggerating, "skin rashes are normal," and "try this" (yeah, like we haven't tried that already...) I've been given the guilt trip many times over that it's my fault and she is reacting to my breast milk and we should go back to another elimination diet. Our allergist wrote us two separate prescriptions for formulas, both of which contained more than three things Charlotte is allergic to. Our pediatrician threw up her hands and referred us to a GI doc. (Not that I blame her!)
Two weeks ago we took Charlotte to see her pediatric gastroenterologist. This was our second visit with this doctor. We left the first visit with a prescription in hand for a drug that is used to lower stomach acid (NOT a good idea when the body is already struggling with digestion...) and lessen inflammation (a band-aid fix that would not get to the root of the problem). We didn't get any answers, but were simply told to try the medicine and then attempt to add in grains.
This visit I came armed with all of Charlotte's medical files (which hadn't arrived for the first visit) and all her allergy test results. We reviewed her symptoms and history extensively. I explained that we had ditched the medicine he had prescribed after 6 weeks since it was not working and that we had started the GAPS diet. The doctor was very concerned that she was only tolerating meats.
The recommendation was to do a scope- an endoscopy and flexible sigmoidoscopy- to see what things looked like internally and to take biopsies. He was concerned about EGIDs (eosinophilic gastroenterological disorders). Basically, this is where there is an abnormally high amount of a certain type of white blood cell (eosinophils). When there are too many of these cells, they create toxins which cause inflammation, pain, erosion and damage. Foods (some, many, or all) trigger these cells, so when the patient is exposed to these foods, the body creates too many white blood cells to "attack" something that otherwise would be harmless.
This sounds a lot like "leaky gut," doesn't it? But somehow, scarier, since it's scientifically backed up by biopsies and recognized in the medical community. So if Charlotte has an EDIG, what then? This would mean a lifetime of avoiding all of her food triggers, elemental formulas, repeated scopes and biopsies, experimental steroid drugs with detrimental side effects... there is "no cure."
I reluctantly let them schedule the scope and then went home to stay up all night yet again, researching, praying, and thinking. Neither CJ or I wanted to put Charlotte into a hospital for an invasive procedure- which would be traumatic for her (and us), exposing her to germs, putting her under general anesthesia, and muddling up her gut flora, which we have been trying so hard to improve. Yet at the same time, we didn't want to be irresponsible parents. Decisions like this are what make parenting so hard.
Where would this information lead us? Would it give us knowledge that would help us make better decisions about her care? If we learned she did have an EGID, what course of treatment would we choose? If it ruled out an EGID, would we be any better off than we were currently? Would we learn something to help us move forward, or potentially take unnecessary steps backward? Of course, it would be helpful, at least mentally, to know WHY she is like this and to have an answer, but is it worth that risk and cost?
Here's what I learned- all these roads lead to GAPS. Where the medical community could not offer us hope for complete healing for Charlotte, the GAPS diet CAN. I posted on my Facebook GAPS community group and got an overwhelming response- parents chimed in to say that their child no longer suffers from these diseases since the GAPS diet. I read the positive responses about all of these sick children being healed, and I once again breathed in hope.
We may not seem to be making progress on GAPS right now. But there are kids I know of personally that have healed over time- some after months, some after years. I want that for Charlotte. She is already avoiding almost all foods, and it's horrid. This is not the kind of life I want for her. I want her to heal and thrive; to be able to eat a variety of healthy foods and be nourished instead of getting sick. Regardless of whether or not she has an undiagnosed disease, I feel confident that we're still on the right track. I will cling to the hope that the Lord will heal her through this diet. We'll keep moving forward (or attempting to) one meatball at a time.
So, if you're reading this, please know that this road is a challenging one, and it's not one we are embarking on blindly. We are doing all we can to make the best, most informed decisions. Thank you for joining us along this journey and for trying to understand and support us.
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