My feeling of urgency was not reciprocated by the allergist referral process. It took several weeks to actually get an appointment and get in to see the allergist we were referred to. I was extremely nervous, and had no idea that this would begin my journey of researching and advocating. About one month later we headed to our appointment with the allergist, and it did not go as I had hoped.
It was a very difficult appointment. We waited an extensive amount of time in the waiting room, and then even longer in the patient room. When the doctor finally came in he barely stood still while talking and then exited the room in a hurry. He definitely hit one of my pet peeves - giving the impression that I had to talk fast enough to get it all in before he was gone or had decided not to listen anymore. He stood and read Ellie's file while in the room with us and asked questions about the GI's notes which(incorrectly)said that banana and rice were ok. He said this didn't make sense and he needed to talk to the G.I. and declared that we were going to do prick testing.
I at least saw this coming, because I have a history of IgE allergies and some severe food allergies. I have had my share of prick testing.
My response to the allergist was: I am familiar with prick testing as I have many of my own severe IgE allergies. 20 years ago when they drew my blood and sent it to UCD to study I was told they did not know much about food allergies and that prick testing was not helpful. I assume they know more now?
His response to me: Hmm. No. Not really. There is a lot we don't know and not much has changed in the last 20 years. The nurse will be in in a minute.
And out he went. Nurse came in. Prick testing completed and Ellie reacted to NOTHING. Not a single one. (tested for: milk, almond, cod, soy, rye, oats, barley, white potato, chicken, apple and the control)
Back in came the allergist. He wants to do patch testing next to see if we can find any leads. He needs to talk to the G.I. He will communicate with me over email or phone. He recommends we wait until she is a year old before proceeding with anything. He looked at the list from the G.I. and pediatric nutritionist. Do not trial apples. Pit fruits only. Start with peaches, apricots, nectarines. He gave me a handout on allergies (IgE) and allergic rhinitis, a handout on dietary restrictions for control of gastroesophogeal reflux that had no helpful information, and a handout with instructions for APT (patch testing).
I was extremely overwhelmed and over saturated. The appointment seemed scattered, rushed, and did not provide any helpful information or answers. The word 'FPIES' was never said, nor a diagnosis of any kind. Continue Nutramigen Lipil formula, wait until she is a year, try pit fruits first, and wait to hear from him.
As he ran out of the patient room we were sitting in I stopped him and asked about the insurance company paying for the formula if she has a diagnosis. He laughed a most irritating scoff, and said 'Have you been watching the news? Insurance wont pay for anything right now.' And walked off.