Too Much

Tonight I updated the blog page 'What She Eats'.  It reads like this:

Ellie is now on stage 3 of GAPS. This includes nut butters, pancakes, squash, goat ghee, scrambled eggs, fresh juices, and others.  At this point in our journey she has too many foods to maintain an accurate list.  Amazing, eh?

SO whatcha think?  Pretty darn amazing, eh?

I am in awe that after thriving on broth, meat and zucchini for 16 months, she is now eating like this.  From nothing to too much.  From pain to healing. From fear to hope. God is good. Amen?

     

I can't wait to see what these teeth are gnawing on next!

The New GI

We had the long awaited (and well stressed about) appointment with the potentially new Pediatric GI today. In order to miss rush hour traffic we were up before dawn, and loaded in the car as a family. I was pleased to have found an appointment with a leading doctor from Oakland's Children's Hospital who also held an MD in Nutrition. An MD in GI and an MD in Nutrition - how could we possibly go wrong there?? Well, ...we most likely have a doctor to keep, but not the amazing nutrition based focus I had hoped for.

Some of the highlights:

- She did not have immediate access to Ellie's entire medical history, so she only saw our brief notes and those from the nurse. She walked in and said 'what is going on?' and I said 'FPIES'. She said 'I suspected.' (To which I laughed and said well that is progress!) To which she then said 'well she is too young for EE', to which I thought 'CRAP. not as much progress as I thought.'

- She said that meat has almost everything you need so Ellie can be fine like this for a very long time, if needed. (It was just nice to hear a doctor say that outloud)

- She asked if she was on a multi-vitamin, to which I said no because we have not been able to avoid corn, to which she said 'well, yes I would imagine not'. (Another nice thing to hear a doctor of her 'level' say)

- She said that the only vitamin to be concerned of at this point was vitamin C, and suggested I do a home skin test of foods high in vitamin C before feeding it to her. (A doctor acknowledging skin test! woot!)

- Ellie continues to grow and gain weight, and is now happily over 30 pounds! (*big mama grin*)

- I said my only real concern was the continued distended belly and so she offered an xray to see what it showed. (I appreciated the proactive approach)

What else...

- She irritated the crap out of me by saying 'we just don't know' about 50 times as an answer to most of my questions.

- She had the nerve to say 'she WILL get better at some point' but not comment on what I am currently feeding her, her history of illness, or know anything about GAPS. (I think this was the same old 'they grow out of it' version)

- When I informed her that Ellie's allergist wanted her off the formula due to the APT corn reaction, she asked if there was corn in the formula (the MD in Nutrition didnt know *all* formulas have corn?). And when I said the previous GI and allergist were in disagreement on whether or not the corn in the hypoallergenic formula could even cause a reaction, she responded with 'right.'. (is that another right, we don't know? right, you can react? right, we always disagree?....?)

- When I asked about missing nutrients she said 'I can send you to a dietician at the hospital for more information on that'. Whoa. I certainly thought that Nutrition MD counted for something..no?

- I made it clear that we fed Ellie grass-fed, organic, corn and soy free meat several times, and then directly asked her thoughts on the matter. I told her I could not find medical evidence of the need but was doing it to be cautious. Did she think it was necessary? The response - 'Well, I would try and see how she responds.' (is that acknowledgement that yes the corn and soy is present in the meat, or is that another answer of we just don't know?)

- She asked if she had been scoped. I gave her the list and the information on the dissacharide test, to which she instantly responded 'well that could be error.' I think my transparancy showed how irritated I was to that response. She then said, 'well, the sample was either handled incorrectly, or her intestines are just that completely damaged. No one is born that way. That is too severe.' (THIS was a very interesting thing to say regarding nutrition and genetics. I firmly believe the test was accurate, and the corn formula played a leading role. But did not choose to discuss further.)

- and oh yeah, she asked why all of the Sacramento area ped. GI patients were flocking to their office in Palo Alto. And when I decided to start telling her she cut me off to respond 'yeah, I know (insert the crappy GI we ditched here)'. I have no idea if that was her way of confirming, or if she was saying 'back off my buddy', but it was more politics in medicine. Ugh.

And that is about all I can remember. I have her email, and am waiting on the xray results. I am headed back to my GAPS book to see what it says about vitamin C, and we keep plugging forward. At least we have a GI on board in the event of an emergency who is experienced and knowledgeable of FPIES.

Onward...with patience.

Onion has been removed from Ellie's broth for about 4 days now, and we are seeing quick recovery. Her eczema is clearing and she seems to be moving back into the realm of more normal poo. Hooray! But once again we are in the place of 'now what'.

She finally had her feeding evaluation which has given us a few ideas of how to work on getting her to swallow, and so we have focused on getting her at the table with a bowl of water and a spoon, or meatballs, or puree, or zucchini of some nature, in hopes of moving more towards a 'full belly' feeling. She licks food, or feeds me. And says 'mmmmm'. Or pretends to chew. Or eats rocks and paper.

We have worked hard at making the food in the house 'safe' for her. Even though she can not eat it, we are focused on removing things that would actually hurt her (like corn or soy). That way we can spend less time screaming 'stop don't touch that' and more time letting her explore. Luckily we almost always have some sort of meat on the table that she can chew on without worry. Except for chicken, which should be ready for butcher the end of July.

So overall we are moving forward. I suppose. Patience has never been my gifting, and this waiting-for-healing-thing is certainly difficult. (can you hear it in my tone?) Or perhaps it is just this up-twice-a-night-every-night-for-two-years-thing that is wearing me down. Or maybe it was the full vomit reaction she had this weekend after attending a birthday party where she was inadvertently included in a cloud of aerosol sunscreen that was not intended for her, reminding me of how sick she really is. Or.....

I am going to choose to blame it on the fact that it is gloomy and raining on one of these last days of June. And remind myself of this all too familiar scene, which makes me laugh every time. Those people who wake up whistling? They drive me nuts.

Hold The Onion

Pureed onion in the bottle.
Questionable symptoms.
Pureed onion removed from bottle.
Back to baseline.
Pureed onion in the bottle.
Questionable symptoms.
Pureed onion removed from the bottle.
Back to baseline.
Boiled onion into broth. Strain out onion.
Progressively worse.

AGH! The answer from the doctor?

Pull the onion. Too much sugar, too little intestinal enzymes. And way too much screaming when she fills her diaper. Oh well. What can I say? She gets her candida from her momma.

Wait....What happened to the fruit?

After a lengthy list of fails, Ellie's first 'safe' foods were the pit fruits. We gave her apricot, peach, nectarine, cherry, and plum without FPIES reaction. In the same botanical food family happens to be almond, so we trialled almond milk and began giving her that as well. Once we began GAPS with her I eliminated these from her food list, and forgot about them until asked about them a few times recently.

Ellie is no longer eating these fruits -yet. Her sugar intolerance test told us that she has virtually no enzymes to digest sugar or carbohydrates of any kind. Any thing that can not be digested causes irritation, and it would either feed her bad bacteria balance or sit in her intestines undigested to ferment. Fruits also provide very minimal nutrition and can even have anti-nutrients, if she is able to digest them at all. In short, feeding her these fruits now would get in the way of her healing and block proper digestion of the four foods she is currently eating.

The good news is that these fruits did not cause a completed full blown crazy TCell response launched by her immune system, resulting in a typical (or in Ellie's case often atypical) FPIES reaction. Because of that there is great hope that she will eat them in the future without any problems, and does not have a true intolerance to them. I can not wait to use almond flour to bake for her!

We Won't Be Keeping This Doc

A few weeks back we had the opportunity (insert sarcasm here) of attending our long awaited appointment at the local pediatric GI office. We met the doctor who Ellie was assigned to after our favorite GI relocated. I truly thought I had low expectations for this appointment, but they just were not low enough. Luckily I had spent a lot of time praying about it, and when the doctor walked in I just knew that he had no information to present. He did not appear confrontational; he appeared intimidated. And that helped me to have grace for him.

That being said, he still did not conduct a thorough examination of Ellie, and he did not appear to have taken much of a look at her file. He already knew how upset I was that I did not get an earlier appointment, and that I had been waiting to speak with him about the very extreme results of her sugar intolerance test. The appointment started like this:

Dr: Hello I am Dr. M. So you were a patient of Dr. B's?

Me: Yes.

Dr: And you saw him regularly?

Me: Yes.

Dr: And how is she doing?

Me: Well OK. She has not been able to move forward in trialling foods.

Dr: And why is that?

Yeah. Why is that exactly? Maybe her sugar intolerance? Maybe her FPIES??? I don't know Doc. You tell me. I was not impressed.

I did request a entire panel of blood tests to be done since we had not had anything checked since taking her off the formula and beginning GAPS. He also wanted to the blood work for the same reason. Fast forward about 20 minutes to the end of the appointment.

Dr: I am going to go put in the referral for speech and food therapy from my desk. There is a huge wait and that will take months for you to get her in. I think three months is a good time for her to reschedule...well...there is that matter of weight loss...so lets make it two months. (He walked toward the door)

Me: OK.

Dr: Bye Ellie (waves at Ellie, and leaves)

Time for a referral out.

And How Do We Get Them Back?

This has been the research question of the month for me. Those confusing digestive enzymes have pushed me into rethinking my career and considering courses this summer in something that might help. The short answer: heal the intestines from the inside out.

Using SCD and GAPS books, along with information provided from our relocated GI, medical studies, and other knowledgeable mamas, I have been able to piece together a basic understanding of the GI tract in relationship to these enzymes. Here is my (guaranteed over-simplified) version:

When the intestines receive damage of any kind (antibiotics, illness, inherited 'toxic load', etc.) then the bacterial make-up present there can become imbalanced. Things grow more than they are supposed to and others die off. These important digestive enzymes reside on the tips of the intestinal villi. There they can be damaged from this bacterial overgrowth and the body may then begin to cover them with a protective mucous.

Another way they can be damaged is through lack of nutrition. During bacterial overgrowth, these symbiotic intestinal bugs begin to grow places they are not supposed to, like into the stomach and throat. Sound funky? Every mama knows about thrush in the mouth. There is one perfect example! Ph levels in the stomach change, change when invading bacteria take up residence, and if it does not do it's job, food can enter the intestines unprepared for further digestion. Things begin to go wrong. Hormones are not released as needed, other organs are not sent signals to make enzymes, and the entire digestive system becomes impaired. Much needed nutrition is not absorbed by the body, and these little intestinal villi take incredible amounts of nourishment just to do their job. Without it they begin laying flat and the body begins to cover them in a protective mucous.

Regardless of which comes first, (damage or malnourishment), eventually our little intestinal villi friends become exhausted, and somewhere along here is where the cycle of leaky gut and colitis begins. 'Holes' in the intestines develop. It is believed that proteins from food that are not meant to enter the body's bloodstream begin to make their way through the damaged intestinal wall, triggering allergies, intolerances and sensitivities.

Note (disclaimer?): yes, there are believed to be situations where this can happen due to genetic components, but those situations are rare and testing is extremely limited. There is not enough research or information at this point to identify these genes, and even if there was, it would not change the need for my daughter to eat.

So, that brings us back to the issue of how does she get them back? Healing. The bacteria that has overgrown must be starved and the bacteria that is missing must be replaced. And those little villi must be regrown using nutrition from the inside out. Gentle, healing nutrition that needs minimal or no digestion. What does that you say? What provides incredible amounts of easily absorbed nutrients, is rich in vitamins and minerals, provides the brain with it's much needed fats, and since the dawn of time has been used to nourish the intestines from the inside out?

BONE BROTH :)

Combining this with a lot of patient time for healing, we hope she will repair and begin to remake some or all of these enzymes - from the inside out.

Digestive Enzymes: NOW what do we feed her?

The search for an explanation of digestive enzymes and why they might be missing revealed a list of additional 'disorders' and 'diagnoses' that are labeled as genetic, but with no gene yet found. All of the enzymes can be missing in various capacities, and it is very often a secondary condition to intestinal dysbiosis. Let me say that again - a secondary condition due to intestinal damage and NOT a genetic disorder. Our G.I. brought this to our attention early on. This is what I believe Ellie has, Sugar Intolerance as a secondary condition to FPIES.

Congential Sucrase-Isomaltase Deficiency (CSID) is one dissacharide deficiency diagnosis with it's own parent group website. On this website I found a very helpful list telling sucrose and starch levels in various foods. One quick glance through shed light onto the progression of foods allowed on the GAPS and SCD nutritional programs. The introduction diet (or healing stage) of GAPS allows for only broccoli, cauliflower, carrots, onions, leeks, and squash (winter and summer). All of these vegetables have extremely low levels of any sugars that would need enzymes for digestion. Winter squash and carrots are the highest in starch, and most surprisingly, broccoli and cauliflower have almost zero levels of fructose, sucrose, maltose, lactose or starch. Those green vegetables that the doctors have said for Ellie to avoid due to high levels of protein? Low low LOW on the scale of digestion needs. Good good GOOD choice for us! And right in line with Dr. Natasha. More confirmation we are headed in the right direction.

So the answer, once again, was right in front of me. What do we feed her to continue her healing? GAPS, stage 1. For those of you curious here is a fantastic resource I found by another blogger. She compiled a condensed view of the healing stages of GAPS. Her super cute site has a super great name, too: Health, Home and Happiness. A very important three!

Another Crash Course: Sugar Intolerance 101

After finally getting a copy of Ellie's dissacharide test, I realized I had no idea what I was looking at. The nurse had suggested they were concerning and very low, and with no current treating GI doctor I figured I had better get my fanny moving on what these new terms meant. What her test results showed, and what a quick google search along with consulting a few fellow FPIES mamas revealed:

Lactase - 4.8 (below 15 is abnormal, but normal starts at 24.5ish)
Sucrase - 11.6 (below 25 is abnormal, but normal starts at 54.4ish)
Glycoamylase - 0 (I have no idea what is abnormal but am pretty sure ZERO is not normal)
Palatenase - 2.8 (below 5 is abnormal, but normal starts at 11.1ish)

Keeping in mind that lab results always give a wide range that can be considered normal, these results were still extremely low. But what in the world were these things? They are enzymes. Digestive enzymes found in the intestine that split double sugars for proper processing by the body. Without these enzymes Ellie was unable to process these double sugars. So what are these double sugars?

Latase. OK got it. Sucrase. Alright. But glucoamylase? And palatenase? uh..... And since she is the lowest in these two, I really needed to know what they are. Here is what I found, perhaps over simplified, using my non-medical layman jargon:

glucoamylase is STARCH, that leads to proper digestion of maltase
palatenase is isomaltulose, that leads to proper digestion of FRUCTOSE

OK. So now that I knew what they were, I had to find out what this meant. What I quickly discovered was that these deficiencies could be genetic or acquired, and came with a whole list of other names for diagnosis. And they all had very similar symptoms to FPIES. And guess what? The medical community doesn't know anything much about those diagnoses either. What they do know is that the majority of intestinal disorders come with enzyme deficiency to some degree (more on this later).

*sigh* Back to the mommy brain to digest what this means (pun intended).

What I now know:
Ellie has sugar intolerance. Her intestines have virtually no digestive enzymes to break down sugars.

What I needed to know:
How do we get them back?
How does this affect what I feed her?

With almost four weeks until our next 'new patient' GI appointment I started my next medical crash course on digestive enzymes.

Where, Oh Where, Did Our Good G.I. Go?

We had a great GI. He diagnosed Ellie with MSPI at 12 weeks old and FPIES shortly after the introduction of food. This, in the FPIES world, is unheard of. Why? Because for most doctors around the country FPIES is unheard of.

Our GI landed in Sacramento after learning from some great FPIES docs in Chicago. He was the new Pediatric GI in his office, and most likely why we got in to see him. He was supportive, listened, and had an amazing amount of knowledge. Sometimes he still gave me the 'you are a crazy mom' look, but that was OK, because he followed it up with 'I have no idea. That makes no sense.' He got us diagnosed. He got us moving forward. And I am convinced he saved Ellie's life. And he left. BUMMER!

About two months ago the news escaped through the local FPIES mama's that he was expecting his first child and moving to Texas to be near family. DARN! I scheduled a follow up for Ellie right away, and pushed for him to do the upper biopsy and dissacharidases test that we had been putting off. After looking at me and saying, "My leaving is not a good reason to do a biopsy," I further discussed with him why I felt it was time to do it and how there were a few remaining questions that needed to be answered for Ellie. He agreed. (I also did not want him to leave and then have one of the other, less knowledgeable doctors, perform these tests or know nothing about them....but I kept that part to myself).

Ellie's procedure was performed about 5 weeks before he was to leave. I could have sworn he said he was leaving April 1. We were not having success moving Ellie past the meat broths and onto vegetables, and she had huge issue with carrot, which made me pause to wonder if the dissacharide (sugar intolerance) test would shed light on this. I then realized it was the last week of March and I had not heard from the GI. Wait a minute! He had emailed a few times with preliminary results, and said he was waiting on the final test to provide a treatment plan.

The last Monday of March I called the GI office to check in, and was told - "He is gone." What!?!? I was MAD. He told me he would check in before leaving! He just left??? Just like that??? Now what was I to do? I asked to speak with his nurse and waited for a call back.

And that was when things changed. It was as if we had been sucked into a new realm. I received a glimpse of what it must be like for FPIES moms who had to fight from the beginning, received no help, and some of who even were accused of Munchhausen by proxy.

The new nurse is who called. To tell me that the results were lost and had to be requested again. And that there were no open appointments to get Ellie in to one of the other GI docs, even though she needed to be seen and had a food fail. Did she need to go to the emergency room? No. OK well the next appointment was not for 4 weeks or more. Who did I want her to see? Dr. D was scheduled out to May, and Dr. M the end of April. Why? Because Ellie is a new patient. I argued. But they want to have enough time for the first appointment. Ridiculous. Call me with the results when they get in. Get me the results of the test.

Another phone call. What are the test results? Can't give them out because no doctor has read them to interpret. Give me the results! Here are the numbers but I can't counsel you on what they mean. They are low - very low. I would believe that she needs to be seen sooner rather than later so you need to see Dr. M. OK. Soon. How soon? The end of April. That doesn't sound like a priority appointment. It's all they have. Another phone call. Has a doctor seen the test at this point? Yes I can read you his notes. Please do. His notes say that he does not believe the results to be consistent with CSID and that the other numbers do not make sense. There was an error with the biopsy.

There was an ERROR with the BIOPSY? He is saying Dr. B made an error with this test and none of the others that were FINE?

No. He is not saying Dr. B made the error. He is saying the lab made the error.

OH...that lab that is one of the only ones in the country to even do this lab?? The EXPERT lab?

Silence.

I would like a copy of the results so I know how to feed my daughter. Have the nutritionist call me. And try to get us in sooner.

And with that I knew it was time for a change. I went from an understanding doctor who never made us wait more than a few days to be seen because of the urgency of Ellie's condition, to an office that could not fit her in. This is not acceptable to me, and I really don't care how short handed they are after losing our GI. I don't care that the new nurse does not know what FPIES is, or that the remaining GI's do not know Elianna's history. I don't care who has won what award for fantastic medical contribution, or how great of a colonoscopy these other GI's can perform. I care that my daughter needs to be seen by a knowledgeable doctor when she is ill, and that does not wait four weeks unless you live in a country other than this one with less than stellar medical care. I am not new to this. What is that expression? This is not my first time at the rodeo? I am not the new FPIES mama looking for an answer and being sent away with 'she has the flu'. I am a Professional FPIES mama. And I come equipped with experience, information, medical studies, and an attitude of advocacy for my child.

Hello Dr. M. Nice to meet you.

First Fail After the Broth

I am calling it quits on carrots. I had a funny feeling from the beginning, but pushed through because I truly wanted these to be a pass for Ellie. But no luck. Constipation can also be a sign of 'allergic' reaction, and after starting carrots the first time Ellie stopped her now regular stool. So I stopped, and then restarted, and this second time it took three days before we were seeing symptoms: ear drainage, raspy nose/chest, eczema flare, urping (wet burps), very fussy nights, and no stool.

The good news is it was a less severe reaction and took much longer to be sure. I believe this to be a sign of FPIES healing. Hooray! The bad news is now that she is on the road to healing, I think this might be one of those foods she may never be able to have. But we will shelve it for now, and come back to it in about 32 months.

The only remaining factor is that we still have not received the test results for sugar intolerance from her biopsy. This test is taking so long! Carrots are extremely high in sugar content, so we will see if those test results shed some light on this fail.

I am hopeful that she will recover quickly, and curious how long it will actually take to do so. Back to zucchini and onions, which is already great progress from where we were a short time ago!

Day >>10<< of *REAL* Food!

Today was day 10 of real food for Ellie. Since I have spent every waking moment on the internet, on the phone, driving to various stores and markets, and in the kitchen cooking, it has gone by extremely fast. This is a good thing because if I had any more time to think about it I would have vomited from anxiety.

Ellie has been doing fantastic on home made, grass fed, corn free and soy free bone broths. There is an amazing healing factor to consuming bone based soups. If you don't believe me, just Google it. The resources are amazing. Bone broths have been used for centuries because of their amazing healing nutrients.

Yesterday we added in pureed lamb and she had a field day. Today I added in pureed salmon, and she began a hunger strike. I only let her go about 4 hours protesting because instructions I (personally via email!!) received from Dr. Natasha Campbell-McBride, doctor of neurology and nutrition, said to feed her bone broth with pureed meats and marrow every hour. Back she went onto lamb for the rest of the day, and she did great. She still is battling a virus which is continually reminding me to be nervous. Occasional fussing, extra napping, stirring and waking in her sleep, all stop me in my tracks and cause me to ask myself 'reaction!??..or just virus???' I think some things will just never change.

This is the farthest thing any doctor here in the U.S. would recommend that you feed to an FPIES child. Meat means high protein content, and FPIES is a violent allergy to food protein. Instead we have fed Elianna fruits which are known to be low in protein (a.k.a. lower in nutritional value) and higher in sugar content. I now speculate that she has 'passed' these fruits because they have fed the bacteria imbalance in her intestines and continued her gut dysbiosis. I will continue to add some formula in to her broth until her stools look more regular, and I can get her onto a regimen of probiotics. These are coming in the mail.

Only 10 days ago I was on my knees begging for direction as I watched Ellie's eyes grow darker and foggier, and her little body show signs of dehydration and lack of nutrition. Her extended belly had become harder and rounder than ever, and her energy was low. She whimpered a lot, and spoke very little of her typical jibberish. Today I was in awe as I ran my hand over her belly to find that her eczema is disappearing where her skin has always been horribly dry and scaley. Her cognitive ability has increased, as she is now talking clear words, engaging in conversation and following directions in ways she has not done in the past. She is initiating play, and expressing normal emotions such as frustration, and preference. She is giving kisses and asking for food. All of this within 8 days. And no one will ever be able to tell me that food allergy and intestinal health does not influence the brain and development, because I have seen it with my own eyes, in my own child.

Moving Forward

At this point we were giving Ellie peaches, nectarines and blueberries, but we had not correctly trialled them. She no longer received a spoon and would only eat things that she could feed herself. This drastically limits options at 12 months old when there are texture issues. She would not touch anything, and she was also teething (seriously inconvenient when dealing with FPIES).

We had been feeling financial strain from co-pays, formula expense, time off of work, and medical bills. Deep down I knew I needed to put her on the more expensive Elemental formula to see if there was improvement, but her intake was increasing and we were talking an average of $45-$60 a can. Something was going to have to change. We were at the cross-roads, and I was not convinced we could do it financially. I expressed my thoughts to my new mom-friends online. I was looking for any insight to get the insurance company to cover Ellie's formula, and thoughts on moving to the prescription medical grade formula. One of the mom's offered to send me 7 cans of the Elemental formula Nutramigen AA. For the full amazing story click 'here'.

For an explanation of the different formulas click 'here'.

In the meantime I took Ellie to her next GI appointment on the morning of her first birthday. He has amazing patience and fantastic listening ear. We recapped her symptoms and discussed the new ones:
-reflux since birth, even in hospital had to be addressed by nurses
-fussy and seen for colic
-snotty clogged nose since birth
-upper respiratory issues
-can not hold her facing out with arm pressure on her belly or she will vomit
-never had a completely solid stool - always diarrhea and liquid
-always had sensory focused personality - sensitive to touch, likes soft, etc. hates dirty diapers, wont eat if diaper is wet, etc
-change from breastfeeding to formula meant more alert happy baby but no change in stools
-history of crying and pain

recent changes:
-straining at time to poo even if diarrhea. acts in pain, constipation.
-stool smells acidic and burns her butt sometimes
-vomit has changed to be partially curdy
-stool often has two separate ‘stages’, a liquid stage first, and then a goopy solid portion 15+ minutes later
-horrible breath
-lots of hands in the mouth for sucking and putting things back until she gags
-no solids - periodic peach juice or smashed blueberry - yet stool stays same diarrhea
-spends the night fussy and up often after having any food
-often still just randomly chokes up stomach acid, but less projectile vomit

Our pediatric GI agreed it was time to look further. The radiologist had concern for colitis in her upper intestines, but the GI was not overly concerned. He said there would be more visible evidence in her stool (bleeding). It was time to take an internal look. He conducted a rectal scope and biopsy (happy birthday Ellie). The rectal scope looked great. Everything seemed to be in her upper intestines. He gave orders for stool sample tests and said to work on collecting them while waiting for the results of the biopsy. He recapped FPIES versus EE, and the idea that her specific problems could be in her esophagus. He mentioned a concern for sugar intolerance which he said was a secondary issue to FPIES, and why she could still be having trouble with the fruits. When I asked about Nutramigen AA (the formula being sent by the other FPIES mom) he said it was not one that he kept in the office, and the he would prefer she be on one that was designed more for a toddler nutritionally.

We left the appointment with instructions to try the elemental formula, samples of Elecare, a new reflux medicine, three large bags of stool sample kits, and instructions to wait for results of these additional tests. I took a deep breath, lots of notes, and made final preparations for Ellie's first birthday party in two days.