Reflections

I have this other blog. I started it before Ellie's, and I never really worked out the focus of it. About 5 months ago I just quit writing on it because it felt like too much of a diary, and I have been uncomfortable putting so much of myself out there. Recently, I decided that I wanted to get back to it and blog more about our home school endeavors and my personal junk, so I was browsing through old posts.

I came across the post I made at the time of Ellie's diagnosis, and it stopped me cold. Not only did it bring up the emotion of that diagnosis, but it showed me how incredibly far we have come in such a short time. Ellie has made progress that was not expected, and we have chosen a path of healing that is exactly the OPPOSITE of what mainstream medicine recommends. I also appreciated the reminder that our favorite GI never fully bought into the 'she will out grow it' phrase. This phrase has been a personal pet peeve of mine since day one. 'At some point their intestines mature'....'They tend to no longer react'....blah ditty blah. Hooray for some children that at some point their intestines have healed, and they can eat. They, by 2 or 3 years of age, have been on an elemental formula that their body can thrive on long enough to see healing, and be able to begin eating food, following a strict method of introducing them one at a time. For those of our kiddos with a severe corn intolerance, we may not be so lucky.

For the sake of insight, and a glimpse into the beginning, here is a copy of this post:

Who Would Have Thought? June 21, 2010

Today I headed to the Pediatric GI specialist for Elianna's follow up appointment. Last week we received the good news that her blood tests came back negative for Celiac and for a whole gamut of allergies. I entered the office and jokingly told the doctor I was hoping I would show up and he would just tell me she had a rough first four months before her dairy protein diagnosis, and that all she needed was a good round of probiotics and would be good to go. He laughed. And then told me, 'yeah....no. We can fake throwing up but we cant fake diarrhea'. Darn.

We love this office. These doctors are incredibly on the ball and always have the latest information on anything random. Dr. Barad can spout random facts about anything such as 'well, yes, actually, Sub-Sahara Africa has the highest incidence of Celiac's in the world with 1 in every ?? having it'. I don't even remember the number he gave. So today I felt blessed to have such a knowledgeable doctor, but not so happy at the diagnosis.

Who would have thought that I would be told my 10 month old daughter can not have ANY protein. None. This apparently occurs in over 50% of infants diagnosed with her dairy and soy processing disorder. What she has is relatively new and is called FPIES (referred to as F-Pies), and stands for Food Protein Induced Enterocolitis Syndrome.

The bad news first:
No protein for now, and most likely at the earliest will be 18 months of age. The treatment is to get nutrition from an extensively hydrolyzed casein formula, which is what we are already spending between approximately $500 and $700 a month on to feed her. She can be on this formula until she is 2 if she has to be, according to the pediatric nutritionist. She may not have grains, legumes or meat. Did you know that rice has protein? There is also a list of highly allergic foods that the lucky 3% of kids with this diagnosis get to deal with. Top of the list are rice, sweet potatoes, and bananas. Geesh. The top things we are supposed to feed when beginning solids! No wonder we are having problems.

The good news last:
Perhaps with this diagnosis we will be able to get the insurance company to say the formula is actually medically necessary and they will pay for at least a portion of it. Food will be easy since she is on a restricted diet of formula and fruits for the next six weeks. We are to start with apricots, plums, and apples, the three least allergy prone foods for all humans anywhere. (again, who would have thought?). The majority of these kids outgrow this syndrome between 2 and 3 years of age. GREAT NEWS. (however there is a long extensive process for introducing these solids successfully).

What now:
We have a referral in to the allergist. Our GI doctor said he is comfortably the initial diagnosis and saying that she is on the FPIES spectrum, but wants the allergist to examine her and weigh in as well. I have been instructed to purchased fresh, organic fruit that is in season and made food for her. And now I begin the process of trying to learn what kitchen items can retain allergens (anyone know about cast iron pots and pans?).

I think that is all. Though my brain is pretty fried from rethinking and processing. I am so happy we have a diagnosis finally. Whew. I need a glass of wine!

I will follow up later with another post explaining how this is diagnosed and how it falls in the allergy category. Time for dinner.

Almonds, Soap, and Diapers, oh my!

With the holidays and some new developments, things have been BUSY around here! Here is an update:
We took the leap to cloth diapers to help with Elianna's eternal diaper rash that resembles a burn and looks strangely like her reactions to her patch testing.

We trialled homemade almond milk. Its super easy to make (recipe here).

We began using soap on her in the bath - organic shampoo/body wash in one. We used it maybe three times at the end of her bath with a quick wash and rinse with the hand held shower wand.

After a week of documenting and watching, we called almond milk a pass (hooray!) but there were some other signs of reaction. The diaper rash returned and her eczema became worse than ever. The questions began. Was it the almonds after all with a delay onset reaction? Was it the bath soap? Was it the new diapers? Was it how I washed the diapers? Or the diaper fabric? This method of questioning is common and some days makes me insane!

In desperation I read the back of the shampoo bottle once more and found what I had missed - wheat protein. CRAP! How did I do that? A call to a girlfriend who battles Celiacs confirmed what I already knew; your skin is your largest organ and absorbs what it touches. Back to 1/4 cup baking soda only, and a lot of prayers that this was the cause of some reflux, pain, and what looked like the start of a full blown reaction. Please please don't be the almonds!

After three days it resolved itself. WHEW. Dumb mommy! But now we have the additional delayed response - sinus congestion, drainage, and raspy asthmatic type cough. It's working it's way out of her system, and I am SO happy it was not almonds. Who needs bath soap anyways?

On to trialling the actual almond nut now!

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.