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Nancy Sagui
Recovery Story
No eye contact, severe stimming, severe self injurious behaviors, significant developmental delays (including gross motor, fine motor, speech, & social interaction), multiple ear infections, sensory issues, foul stools, severely distended belly, and more.
Formal Diagnosis:
We heard everything...Developmental delay, cerebral palsey, PD-DNOS, sensory integration dysfunction, and my favorite: "He's just developing slowly...he's fine."
Helpful Therapies:
Top winners for us have been GF/CF diet, chelation, hippotherapy, and DAN! protocol (including B-heavy miltivitamins...specifically Super NuThera & SNT Everyday Companion by Kirkman, probiotics, enzymes, yeast control, cod liver oil, methylcobalamin shots, zinc, TMG, colostrum, L Glutathione both in pill and transdermal forms, CoQ10, taurine, lipoic acid, epsom salts, iodine...a lot of DAN! supplements!!!). Our guy had massive yeast growth, so Nystatin helped that, which helped his behaviors a lot, too.
Helpful Clinicians:
DAN docs. DAN docs. Did I say DAN docs? John Cucera in Colorado Springs was very good to us in the early years when we lived out that way.
Lost diagnosis (months):
I don't think we have all of the answers yet, but I'm relatively sure vaccines played a role. Too much regression immediately after the MMR, and too much mercury in his system.
What Happened:
Tyler is not yet "recovered." We started out with a child who was so severely low functioning we were advised to seek institutionalization. We are very happy with the dramatic improvement we have seen. When we started, he lost all but about 10 words ("cracker," "cookie," "bread," "NO"...), had constant goose-eggs from banging his head, bit holes in his arms, did not interact, had severe gut issues, and basically could not function in any sense. We went 3 years without going to church or out to eat. Once we found a DAN doc and put Tyler on the vitamin protocol, 20 hours or so of therapy a week, and a GF/CF diet, he began to improve steadily. Chelation therapy followed, and we saw improvement in his behavior, eye contact, and word use every round. It was a slow process, but worth every bit of blood, sweat, and tears (literally!). B-12 shots gave us our little miracle story. The night after starting them, Tyler brought me the bottle filled with the shots and said "Medicine Please." He only had about 20 labeling words at that point, no phrases. I was shocked. Two days later, that milestone paled in comparison when he came out of his room in the morning, sat on my lap, looked me in the eye and said "Love you mommy." Worth every minute of work, and every dime on the vitamin therapies. We're still working for more improvement, and it keeps coming...slowly. Don't be discouraged if improvement is slow. We know that not every child can fully recover, but that doesn't stop us from continuing to try to help him reach his full potential, and it doesn't stop us from celebrating every small step forward.