Great Good Fortune

I promised more information about my Miracle Girl, so here you go.

Over this past summer, we were dealing with her seemingly enormous lack of focus, and her non-stop talking (as though she was personally narrating her day, moment by moment). She began chewing the skin on her toes again, and continued chewing her fingernails to nubs. To say I was slowly going insane trying to help her would be an understatement. She also often told me that her stomach hurt. I started keeping track, so when it came time for her six year checkup, I arrived armed with info. There was a pattern to MG’s pain reports, usually every morning and at bedtime.

Instead of trying to pursue an ADD or ADHD evaluation (for many reasons, both academic and label-related), our ped recommended that we consult with a nutritionist she has had very good results with. I decided to have both kids evaluated, since Tiny Boy’s dairy sensitivity continues, and he had not outgrown it by age two as most toddlers do.

I completed 14 pages of medical history, behavioral evaluations, vaccination history, and food preferences and aversions for each child, then had a 2.5 hour consult with nutritionist. She saw clear trends for each child based on my reports, and she shared so much information that it felt like a firehose to the brain.

The next step was a battery of tests: blood, fecal, urine, and hair samples sent to various labs. She checked for the markers of celiac disease, nutritional deficiencies, heavy metal contamination, you name it. MG has a severe needle aversion, and got through the blood draw only by sitting on my lap, with me pinning down her arms and wrapping my own legs around hers to keep her from kicking the phlebotomist. This was after 20 solid minutes of trying to reason with her about why we need the blood, how much will be taken, what the doctor can learn from it, etc. NOTHING could calm her, so we had to resort to the mommy restraint. As hard as some of my own infertility blood draws were, I felt so bad for her I nearly burst out in tears as we left the lab that day.

Many of the tests took several weeks to produce results. In the interim, to reduce systemic inflammation, the nutritionist had us commence a dairy-free, casein-free (casein is the allergenic protein in milk), gluten-free diet. We also must ensure that MG gets 28 grams of quality protein per day, and this must NOT include any soy protein. Protein of any sort was at the top of MG’s food aversion list, while dairy and carbohydrates were all she wanted to eat, so it was an uphill battle for a while. We agreed that we would all follow the diet (at least in front of the kids, what you eat for lunch at work is your own business ) to support them through the process.

Implementing this diet had me in a HUGE learning curve, even after doing the dairy-free thing while nursing Tiny Boy. Mr. Fortune is pretty fed up, as there are not a lot of appetizing GFCF bread-like options. Every loaf of bread I’ve attempted to bake tends to fall and become dense, comes out crumbly, and goes bad in three days max. It is a very exasperating diet, and Mr. Fortune feels “the cure is worse than the problem.”

However, we have seen a positive difference in MG since we began the diet seven weeks ago. She is much calmer, and less likely to fly into a tearful rage over very tiny things. She has only complained of stomach pain twice in this time, though we saw a recurrence of the temper symptoms last weekend after we allowed her to eat some dairy and flour-laden birthday cake. It was a very hard weekend.

Tomorrow, I go to meet with the nutritionist again to go over MG’s results. I hope the scientific results will help us tailor the diet to her particular needs, and hopefully allow us to relax some parts of it. I go back on Monday to go over Tiny Boy’s results, and at that time should have a better idea what we can do for each of our children.

If you had told me six months ago I’d be doing this radical treatment option, I would have been incredulous. It is amazing the lengths we are willing to go to not only to have our children, but to also give them the best chance they can have to lead a happy, pain-free, comfortable-in-their-own-bodies life. All I can wish is that neither of my children show signs of celiac disease. I already know we can do dairy-free, but the gluten-free part of the diet is a particularly large and nasty pill to swallow.