I am starting to feel truly lost, mired in the confusion of not my own, but my daughter’s invisible, confusing problems. This I know: something is not quite right. I also know: many things are right, more than right. But illness does not define the person, it influences some but not all and sometimes in subtle ways. So while my daughter is a wonderful, growing, living, thinking, loving, energetic, imaginative, kind, thoughtful, difficult being and all of that is at some level normal, I also need to trust my gut when it says: something isn’t quite right. Especially when it’s not just my gut, but also my daughter who is telling me this.
She complains frequently of belly pain. She says it’s getting worse again. She is unhappy, starting to have dark bags under her eyes. Every morning is a struggle, she frequently threatens not to eat, not to go to school, etc. There is always something that becomes the thing that gets in the way of the morning moving forward. It’s not quite like last spring, when she ended up in fetal position on a daily basis (or more often) but it’s still pretty extreme at times. When she feels truly overwhelmed she runs up to her bed, crawls under the covers, and curls up saying “nobody loves me, nobody loves me, nobody loves me.” It breaks my heart to hear her. I hold her when she lets me, try to talk to her, try to give her comfort and calm support, though sometimes it is overwhelming to do so. I wish I could take away whatever troubles her.
And so I am trying something: taking away foods that might be the source of her troubles. We are in the middle of a 3 week trial of no dairy because of antibodies to casein that showed up in her bloodwork. She at first said that things were much better but now says they’re getting worse again. Today when I was driving her home she looked sad in the car, so I asked if she was feeling sad and she told me that a fairy she knows had died. She seemed so sad about it that I picked her up when we came inside and she cried and cried in my arms. When I tried to ask her about things that might be upsetting her she said that none of them were, and then reiterated her sadness about the death and broke into wailing tears. After I calmed this down, she got back into fussing, and it took me almost two hours to get a smile out of her (or get her to eat any food). In the end I got her out of her funk by insisting she come outside with me, placing her on the garden fence, in the sun, and getting her engaged with raspberries and a humungous crazy vine I needed to pull out. After that she ate and was fine all afternoon (we had friends over) but as soon as they left she crashed again.
This was worse than usual, but not by that much. I am considering going to a no dairy/no soy/ no wheat diet for a while to see if that helps. A friend/parent says that casein, soy, and wheat all have chemical similarity and if she has a problem with one she may have a problem with all. Although this person has done a lot of research on this (and works as a health professional herself, in addition to having a child who is casein/soy/wheat free), I am currently trying to track down a primary source can give more information about this. If anyone has leads, please let me know.
In the meantime, we continue with the dairy and may try the full hypo-allergenic diet just because the cost of doing that for 3 weeks or a month is low, and if it helps enough to justify the diet change, it certainly ought to be obvious! In the meantime I will do my best to provide her with the comforting, calm presence she needs. It’s not hard when I think of how confusing and difficult this must be for her. After all I’ve been through the confusion of an unknown, misunderstood dragging problem myself, and I was lucky enough to be 34 instead of 4.