Meeting the Allergist

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.

That Fateful Appointment

Nearing the end of June we headed back to the GI doctor for Ellie's blood test results and hopefully some answers. What we discussed:
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.

I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.

Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).

He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...

WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.

Something Still Not Quite Right

Ellie's continual discomfort and vomiting made me uneasy. I should take the time to mention that we are not talking spit up, or normal baby vomit. We are talking projectile, curdled, and large quantities. Doctors said it should get better when she started solids because it would weigh things down...such as stomach acid. Hmm. I began to research the introduction of solid foods and discovered that other countries don't share the perspective we have here about delaying foods, and in fact, the American Association of Pediatrics is considering revising their standpoint. This discovered, coupled with wanting to stop her vomiting and pain, and with the need for sleep, I dove into the introduction of solids for Elianna.

I did not take good notes during this phase because I had no idea there was a need. I grabbed all the traditional first foods and went for it, not expecting to hit a curve ball. We tried, rice cereal, oat cereal, sweet potatoes, avocado. She received the spoon well at the beginning, but after one or two tries of any food she would clamp her mouth shut and refuse. And the vomiting! It got worse and worse. For about 4 - 6 weeks I attempted to get some food into Elianna. Her stool became horribly green and disgusting with a bizarre acidic smell. Her butt burned within minutes if I didnt change her diaper right away, and she began throwing up within minutes of eating. About 6 weeks into trying food I attempted banana. Like most of the other foods, the first one or two times seemed ok. But by about the third try she was vomiting. Banana?! Really?? At this point I knew I must be nuts. How could any baby be vomiting, crying, and screaming after eating sweet potatoes, rice cereal, or banana?? Something was wrong.

I decided that maybe she had celiacs. I gave her oat cereal instead. Nothing worked! I headed back to the GI yet again and this time I expressed my frustration and concern. I want her tested for Celiacs, I declared. The GI agreed, saying that he had doubt and that we needed to start aggressively eliminating what could be wrong. Keep her on the Nutramigen Lipil, and do some tests.

(Note: She continued to gain weight and grow, staying above the 90th percentile at all times. This alone baffled the doctors and I believe continues to be a struggle for us. Oddly, her outer appearance does not match that of her inner, so 'proving' she is sick has become an issue at times. I felt there were small signs such as sunken, dark eyes and puffy body features but nothing that got attention. But more on that later)

After our appointment with the GI we headed down to the lab where vial after vial of blood was drawn from Elianna. I couldn't believe the amount they had to take!

Our fantastic GI spent much time communicating with me over email and phone. And back in to his office to discuss the results.

And the Journey Continues

November 2009 through March/April of 2010 we continued with the pattern we had established, no questions asked. No more visible blood in Ellie's stool, and she continued to grow and measure in the 90 percentile. Vomiting continued, as did stool problems, but overall we didn't question it. The crying was less, the extreme pain seemed to be gone, and we just assumed what we had left was 'personality'. This view was encouraged by doctors, and I just resigned myself to having no clothing without stains.

We were instructed to delay the introduction of solids, starting at 6 months with rice cereal, and adding vegetables and fruits. Sounded pretty standard. At 8 or 9 months we could introduce cooked noodles, lean meats, and beans. The restrictions were: no milk or soy until after 1 year, no egg or tree nuts until after 2 years, and no peanuts, fish, or shellfish until after 3 years. "By postponing diet the introduction of food allergens, the development of food hypersensitivity is delayed in high-risk infants but this does not prevent the disorder". That final statement made me think that there was no hurry to get onto solids, so I figured we would wait until a year to introduce most. By April and 8 months of age, Elianna was still not sleeping through the night. She woke frequently, cried lots, ate a LOT of formula, and was a chubby, roley-poly baby. I decided that I had better introduce some food to help her sleep at night and make her feel more full.

I had no idea that this would quickly start our new adventure and change our lives forever.