It has been more than a year and a half since Lu was diagnosed with EE and had her feeding tube installed. Since then we have been slowly working our way through food trials one by one to find out which foods her eosinophils react to so we can eliminate those foods and rebuild a by-mouth diet. The ultimate goal is to be able to feed her enough food by mouth to sustain her and get her off of the feeding tube for good.
Don't get me wrong, the feeding tube is a miracle that saved her life, got her back on the growth chart and put enough weight on her to help her look like any other kid a year or so younger than she actually is (rather than a survivor of famine), and for all of that I will forever be grateful. But now that she is going into kindergarden NEXT WEEK (pardon the capitals but I'm kind of freaking out) I want to get her to the point where she can sit down and eat lunch with the other kids instead of needing to be hooked up to the feeding tube.
This won't be a problem this year because our team has decided that Lu will do half days of kindergarden so she can continue her intensive ABA Discrete Trial Teaching program at home in the mornings (this is where all of her skill acquisition has been going on all along), and then will attend school after lunch. So we do a tube feeding before she goes to school and another when she gets home from school, easy-peasy. But we are hoping that by the the following year, when she will be going to kindergarden for full days, that we will have found enough foods for her to be able/willing to eat a by-mouth lunch that will sustain her though the afternoon.
The problem with the food trials is that so far, only egg and soy have gotten the ok from her GI doc. This summer has been a disaster of trying first dairy, then non-peanut tree nuts. It has been amazing and horrifying to watch the way the worst of the old autistic behaviors have come back in reaction to the foods. I've realize that so many of the odd stiff-muscled movements, hyper-active jumping, spinning, vomiting, the extreme levels of verbal noise-making (from the quieter moaning, whimpering, twittering, and throat sounds, to maniacal laughter/giggling, yelling and screaming), and even hitting her own head are all responses to internal pain. The most amazing thing has been that for the first time, she has finally been able to add in the telling and imploring "Ow!" when she looks at me and hits her forehead with her fist. And after seeing her recover and what she is like when she is not in pain, I feel we have finally confirmed that these are not just autistic traits that she does at random (like we were told they were), these are both her reactions to pain and her way of trying to tell me she is in pain. At one point the other night she even said 'help me'. Do I even need to say how badly I wanted to make it all go away? But all I could do was put some children's tylenol in her tube and hold her as she twisted and twitched and eventually fell asleep.
It has been so measurable this summer, both with the dairy trail and the nut trial, the difference in sleep disturbance, self stimulatory behavior, attention, compliance, and even this small bit of self injurious behavior in hitting her own head, oh and the return of the terrible vomiting, that we just have not been able to go through the full 90 days to get to the endoscopy at the end of these food trails. We can see how badly she is reacting, so we stop. It's hard to believe a bit of inoffensive almond milk can have such and extreme effect on someone, but there you go. I just hope it all wears off before she has to start school next week.
Just to clarify: I do not believe that changes in diet in any way 'cure' autism. However, I do believe that if a child has a condition like Lu's EE that causes pain which the child is unable to express verbally, and changing the diet removes that pain, then I do believe that it can affect some of the behavioral characteristics associated with autism. Thanks for hearing me out on that one.
So where does this leave Lu's diet? Mainly fruits, veggies, meat (for Lu this means bacon), gluten-free grains (like rice- not that she eats rice but she can have rice milk, rice dream ice cream and rice flour), eggs and soy. And the things she can't eat: wheat, all gluten grains, dairy, all nuts, fish and shell fish. Now that she is finally sometimes showing something of an interest in the food the rest of us are eating, we have decided to all go gluten, dairy, fish and nut free. Though we may still sneak in a bit of sushi on a date night if we have a babysitter. For those of you who know me well, you know how hard it has been for me to give up my beloved fluffy, crusty loaves of fresh and fragrant sourdough, not to mention the occasional beautifully baked and layered butter croissant. And how hard it is for me to ever actually get my 5 fresh a day. I've been doing lots of experiments with the Vitamix to make drinks and soups that get us the nutrients we need. It's an on-going experiment. If anyone out there has suggestions for amazing allergenic recipes that kids will love please let me know. I'm only an ok cook and an even worse baker, but Stew and I are both pitching in to try to give this our all. Who knows, maybe we will manage to lose some weight and get healthier in the process. One can only hope.
