We were up early for a bath first thing this morning, since the doctors wanted Ava completely wrapped before getting to the hospital to leave us more time to do food challenges. I had her all wrapped up by 7:30am, so we could unwrap her at 9:30am. Dr. Lanser came by to see Ava shortly after that and determined that we could not do the food challenge for baked dairy as we had planned today. Ava’s skin was still too flared up. He just wanted us to do a mid-day bath, with the full body wrapped. We spent some time discussing why her skin would still be so red, mostly her neck and face. Of course, there is no absolute answer. It could be that her body is still dealing with the egg from yesterday. Since I am still nursing, it could be that I ate some dairy. (The doctors at NJH seem to be on the fence about whether or not what a nursing mom eats can cause eczema in her baby. I didn’t know that was still up for debate. They say we just can’t know for sure.) Or it could be something else altogether. We planned on a bath at noon.
In the meantime, we went to a parent group discussion. Today’s topic was Hopes, Goals, Worries and Coping. We talked about what we were hoping to achieve in coming to NJH, any worries or frustrations we had about the program or about our children’s chronic illness in general and different ways of coping with the difficulties that come with having a child with a chronic illness. All of the other parents had older children, so things are a little different for them. Ava is still young enough that I can control her and she can’t tell me no! At the same time, she can’t tell me how she feels, if something in particular makes her itchy, etc., etc.
When the group discussion was over, I started the bath for Ava. I had her wrapped up before 1pm and she fell right asleep for two hours! It is great to finally have her napping.
While she slept, Dr. Lanser came in to give me our preliminary home management plan. He will not be available on Thursday or Friday, so he wants to meet with us tomorrow before he leaves. We will make changes to this plan as necessary and will continue (hopefully) doing food challenges through Friday. We talked a little bit more about Ava’s flare up. I wanted to discuss her food challenge to gluten, as I had some doubts about the results. When we challenged gluten on Friday, I definitely noticed an increase in her itching. Her skin never flared up, so the nurses determined that she was able to tolerate gluten. However, I pointed out to Dr. Lanser that she has now been eating gluten (I bought her some wheat crackers since gluten-free crackers often contain nuts and/or sesame), but avoiding nuts, dairy and egg, and her skin was not seeing any improvement after repeated baths and wrapping. He agreed that it could be possible that the dosage of gluten she consumed on Friday may not have been enough to flare her skin, but now that she has been eating it for a few days in a row, she has had too much and her body can’t tolerate it. With these types of food allergies, we are not dealing with an anaphylaxis situation. So, she had an obvious reaction to egg almost immediately, but it is possible she is able to tolerate small amounts of gluten before she starts to exhibit any signs of reaction. Again, there is no way to know for sure. Dr. Lanser thought it would be best to eliminate it for now, clear her skin again and at a later date, when there is no chance of confusing the reaction with that of one to another food, challenge gluten again.
So, I am trying to remain positive. I was hoping to leave NJH with Ava able to eat more foods, having determined what exactly she is sensitive to. We are determining what she is sensitive to, but unfortunately, it’s turning out to be quite a few things. Peanuts, tree nuts, eggs, dairy and gluten are all to be avoided. All while trying to put weight on her! I am now preparing myself for the possibility of starting the GAPS diet (or something similar) to try and heal Ava’s gut. I have heard many success stories of people eliminating their food allergies with GAPS. It is not an easy undertaking, but I figure it is worth the difficulty for a year or two, so that she is able to enjoy these foods later on. Eggs and dairy especially are such important foods! Now that I have the tools to keep her eczema under control or deal with a flare up, I think it is time to really focus on what is going on inside her body. I needed her to be happier and sleeping well before i could take this on. I will continue to blog about our experience with GAPS if anyone is interested in that!
Here are a couple of pictures of what Ava looked like tonight:
I just wrapped her head tonight and will do the same in the morning. Traffic has been terrible the past couple of days! Really slow going because of the snow. Tomorrow is supposed to be freezing, with the high only in the single digits! Let’s hope Ava is improved so that we can actually get some food challenges in.