"Behavioral Issues"

Well we had our follow-up appointment yesterday. Grace lost more weight - as we have been noting at home as well. Neurologically, she is doing great. Her regular neurologist as well as the epiepsy specialist who runs the program were both quite pleased with her progress.

We discussed the not eating bit. The nurtitionist and the nurse told us that the diet is fine and medically she is fine; it is all just behavioral issues at this point. They recommended that we might want to consult with a therapist. We were told that there was another child in the program like Grace who would not eat. They went to a therapist so the mother could learn how to get better control and get this child to eat.

Tom thinks I took the suggestions the wrong way but I was annoyed. I do not think that Grace not eating is a 'behavioral issue'. She is a otherwise normal three-year old who loved to eat. And, she loved to eat healthy foods. She would have happily survived on fruits and vegetables but she was always willing to try new things. We have taken away so many of her favorite foods or severely limited the quantities she is allowed to eat. I don't think it is abnormal for her to be annoyed about it. We didn;t ask her if she wanted to do this. We made this decision on her behalf. I still think we made the right choice but I think she is entitled to be annoyed about it.

Then I was annoyed at the suggestion that we, the parents, are the issue. When Grace refuses to eat, we try something else. We have been working very hard to get those calories into her. We were asked if we tried just giving her what was prepared the first time and if she doesn't eat it, let her go hungry. This just flies in the face of everything we are trying to do for her. Grace is very strong-willed (I think that is the nice way to say stubborn!!). When she refuses to eat, she could be starving and she will not give in. When we let Grace go too long with not eating, she gets low blood sugars. I guess I would rather fight her to take a syringe of oil or heavy cream than have her get a low blood sugar.

I also think that in the matter of a month, Grace has come a long way with this diet. She is back to trying some foods that she refused to eat early on. She no longer sits and cries when she sees someone eating something she can't have. She acknowledges that there are foods that she is not allowed to eat. However, on Chick-fil-A day at daycare, she smells the foods she loves and sees other kids eating this. Of course she is annoyed. Of course she refuses to eat what we send in for her. She is mad about this diet and she is letting everyone know it in her way. If she was throwing tantrums or being disruptive or destructive, I would agree that she needs help.

I am getting down off of my soap box now. On the whole, the diet is going well. We are not ready to quit or give up. We are working with her to get her to eat more. We worked with the nutritionist to increase her calories to helpfully get some weight back onto Gracie. We are working on changing her suppliments so that hopefully she will not have lingering nutritional issues. The current suppliments go into her food and when she refuses to eat, she is also not getting the right suppliments - or at least not the right amount. She is also doing better drinking. She is not yet to the target that is set ofr fluid consupmtion but she is doing better than when she first started on this diet.

Thanks for the support and kind words.

Marie, Tom, Rita and Gracie