Wednesday, August 11, 2010

Our First Appointment!

Well, the day finally came and went! Yesterday was B's first appointment with specialists (GI and allergist). We saw the EGID team at Children's Hospital of Boston. We have waited 11 long LONG months for B to finally be seen by specialists! And here is the scoop:
First off, we were very impressed with the team of docs and other staff. They were great with my fiesty B (GI had to examine her while she was mid-tantrum. NICE). I really liked that once they called us back, we stayed in the same room and the various docs and nurses came in to see us, rather than B having to be shuffled around from room to room. After seeing the various docs and nurses (we even saw a social worker who gave us info on support resources online and talked with us about the day to day stressors of having a child with food allergies), they confer with one another and produce a typed report giving you a summary of the visit and what the plan is for moving forward.
So here is what we were told. The allergist gave us the go-ahead to shorten food trials from three weeks to one week trails (yikes!) I am super nervous, but we are going to try it. He said that if she starts having more reactions, we will back off, but because of her age she needs to start increasing the amounts of foods to try. He gave us an interesting list of foods to avoid due to their relation to other foods she has failed. For instance, they are considering soy a tentative fail and we are to continue to avoid it like the plague, even though she has never ingested it directly, just reacted with skin contact and through my breast milk. He wants us to avoid all common FPIES triggers, plus wheat (which will be a hospital trial potentially along with dairy), tomatoes, white potatoes, and all meats except for lamb and pork. And of course we are avoiding anything she has reacted to, major or minor. He seemed hopeful since she recently passed quinoa and spinach that she will continue to have more passes than fails. He also said to watch the reflux and rashes, but unless they seem to be worsening, we should be ok. He will be calling us to do our patch testing and they ran full bloodwork on B and did blood tests for screening for different disorders and allergies.
The GI was great too-- very friendly and excellent with B. He was going to do a rectal examine but I guess that freaked out B because when he left the room for his equipment, she made quite a messy diaper. Since he had a fresh sample, there was no need for the rectal examine! I was quite happy for this!!! That would have been ugly! Good girl for cooperating! He said that since she has started gaining weight again (yay B! Holding strong at 23lbs!!!) he thought we could postpone thinking about a scope for now unless she shows more fails in the food trials and we see her starting to lose weight again or simply not growing as she should. He also ordered a few tests to be done on her blood draw and we should find out those results along with the ones the allergist ordered tomorrow or the next day at the latest. The plan is still to go directly to the ER anytime a vomiting reaction occurs and to inform our docs (after the reaction occurs) of any minor or major food fails. Both the allergist and the GI said to pull a food if we see worsening reflux, diarrhea and behavioral changes-- we don't have to wait for vomiting. And as we had already been doing, they said to wait a few days once B returns to baseline following a reaction and then start trialling a new food.
So all in all, I think it was pretty productive. We will meet with the dietitian next time as well and hopefully B will have a little more variety in her diet at that time. It wasn't even a terrible drive-- a little over two hours, mostly due to traffic. Very direct, however. The hospital itself was great and B loved all of the artwork and the large fish tanks ("Nemo swimming! Ponyo swimming! Hi, fishies!!!!!!") Definitely worth our time and I feel more confident moving forward with some food trials now that we have some seemingly knowledgeable docs on our side and I have their personal contact info for any and all questions. They advised trying pork or lamb to start (I choose pork! I still cringe at the idea of my baby eating other babies! Guess it is the vegetarian in me. . .) and then trying to stick to foods in the same families as foods we have passed. And on that note, I think we will be doing pork, then beetroot, then amaranth, then sunflower seeds (in the form of homemade sun butter-- the commercial sunbutter is made on the same equipment as soy nut butter so we are avoiding that). I am still looking around and think mango may also be in our future. 
More to come, but for now, I am spent. Life outside of FPIES has been so crazy too. We are still in the hotel and we close on our house at the end of the month. Then this moving adventure that started in May can finally end!! We got word that our household goods have FINALLY arrived stateside and should get those shortly after getting into our house. Once we are settled, I have some serious recipe experiments to conduct. I will have my kitchen back! Keep posted! More recipes will come this way!

1 comment:

  1. I am SOOOO excited for you and this appt.!! You must have a HUGE weight lifted from your shoulders to know you have such a great team behind you. I know it helps so much JUST to have the Allergist, much less if the WHOLE TEAM taking care of my little man was on board and helpful and supportive- and could tell me what to do next!! I pretty much cried when you said you had a social worker come in and visit you...I am having to BEG for support it seems- while trying to convince them that I am indeed coping -- in the only ways I know how when dealing with a sick child in a place where I have to constantly advocate for his care (and my support).
    I just get chills thinking of all the wonderful support you will have with this team and how much they will help Baby B expand her little menu (and then how much you can help us with your recipes!) :)