Updating

So Sophia had an unusually rough night. Makes sense now because she woke up puffy faced and alllll stuffed up. Poor baby. We knew this was coming with her immune problems and the fact that I am sick again too. Still doesn’t make it any easier.

Last week we saw our ped GI, he def redeemed himself! He researched FPIES and had questions ready to ask us. He was great. He suspects she also has fructose intolerance caused by the FPIES, but at this point we don’t know. He also called over and got the results of the xrays to check on her rickets (that the pedi ordered). Good news is the rickets has improved!

On an FPIES front: She passed pears!  Now she has been trialing white potato. We started with mashed potatoes, which she didn’t want any part of until I mixed a little formula in with it and have worked up to diced steamed potatoes. I ordered a product called CheeCha puffs, it is potato puffs! As long as we continue on this road, potatoes will be an easy pass and she can have something to take along with us! If only CheeCha puffs were sold in the US…that’s the tricky part! $ 13.70 on ONE bag of CheeCha puffs. But the lovely people over at CheeCha are sending us a bag to trial. I am hopeful!

Next we will trial coconut because that opens up coconut milk, oil, manna, flour ETC! It will be a great thing to have  (IF she passes it!) and after coconut we will trial egg. Hopefully we will be able to squeeze these two in before her big first birthday! IT will be cutting it close so who knows J I am just happy she has 2 foods to eat!!!!!

We are making the trial food list work for us.

All in all, she is doing good (with the exception of some nightly reflux and this newest sickness)

Pears & Trials

We started trialing pears on Sunday. It is the first food that Dr B suggested.

So far so good, which doesn't mean much,but it DOES mean that no immediate reaction is a good sign. Still could turn sour though. I don't mean to be pessimistic but I think any parent with FPIES is leery of trialing a new food, especially if the child has no safe foods.

I really just want SOMETHING for her to eat. I would really want something like white potatoes or coconut that way so many options are opened for her like flours, oil, butter etc so we can MAKE something. We are working our way there though, one food at a time.

Currently our NO list is as follows:

Milk
Soy
Peas
Sweet Potatoes
Carrots
Squash
Bananas
Green Beans
Rice
Wheat
Avocado

Our "Plan of action" for trialing new foods is"

1. Pears
2. Apples (again, since we weren't sure if there was a reaction)
3. Quinoa
4. white potato
5. Egg yolk
6. Spinach
7. Lamb

Like I said, I want to try coconut, so I will be asking the allergist if we can move that up the list. It opens up so many opportunities for her! I would love to be able to "make" something for her! I know, I know...one step at a time! The last thing I want to do is take 5 steps back since we finally have a baseline (even though its no safe foods!) of neocate and neocate nutra.

To fully understand how important it is to go slowly with FPIES kiddos, here is how we trial a food:

Day 1: a taste

Day 2: a larger taste

Day 3: 1/2 tsp

Day 4: 1 tsp

Day 5: 1/2 tbsp

Day 6: 1 tbsp

Day 7: a serving

Then only that food (adding no new one) for 2 more weeks, noting any symptom and promptly stopping if any negative reactions occur.

Our Chicago/FPIES Trip (Yesterday)

When the alarm went off this morning at 4:45am I couldn’t believe it was finally time to go! We got everyone ready and started our 5+ hour to the allergist who was going to hopefullygive us a diagnosis for our little girl.

After a long trip and being slightly confused at the time difference we made it to our destination! We had an hour to spare again, time change messed us up and so we went shopping.

We were literally a block or so from the doctor’s office so when the time quickly approached, we piled back into the car and drove to Kaneland Allergy Clinic. My stomach was in knots.

We were immediately greeted by Dr. B and she was amazing from the get-go. SO impressed. She knew we were driving all that way, and had to pay out of pocket, so she cleared her whole morning and we sat in the waiting room and discussed everything while Sophia got to play.

I have a Sophia binder: a whole binder devoted to all her labs, hospital notes, test results and food symptoms. Dr. B looked over it all and said, “This is classic fpies, and this is classic fpies and this…and this….” She went into great detail about FPIES and asked some pretty amazing questions about things I wouldn’t have thought about.

We went over all her food fails and made a plan of what foods to trial next and exactly HOW to trial them. It’s definitely a process! I will get into that more after I go over the notes again.

So now (and kinda again, since we knew but didn’t know for SURE she had this) I want to introduce y’all to:

 FPIES - Food Protein Induced Enterocolitis Syndrome

FPIES is a type of food allergy affecting the GI tract; it is understood to be a T-cell mediated response in which food is considered a foreign invader.

Everyone that loves Sophia needs to understand that even a bite of food (not on her safe list) can send her to the hospital. In addition to the dangerous foods we are going to have to be careful to not keep playdough in the house and make sure that the books we have aren’t printed with soy ink. Things we never have had to think of, we have to think of now.

I have a lot to learn. I wouldn’t have thought of the playdough, until Dr. B mentioned it today.

Now that we know for sure that Sophia has FPIES we will have lots to trial, investigate and learn!

There are a couple sites devoted to FPIES:

http://www.fpiesfoundation.org/

http://www.iaffpe.org/

wa-BAM!

It's that amazing moment when something has been sitting in front of you for 9 months and then it smacks you in the face! wa-BAM!

The more I think of Sophia's nasstttyyy reflux, the more I can't believe we didn't see that all these foods were causing it. With her only on neocate, her reflux has pretty much disappeared. How did I not see this?

She went from reacting horribly to milk formula and soy formula, to neocate formula thickened with rice. We've changed the dosing every 2-4 weeks to make sure she has the most reflux meds she can because it was so horrible! She slept upright, changed upright, ate upright...it's been horrible, as most of you know. She has slept only in the nap nanny for the last several months. When she got very sick a little over a month ago they took away all foods (including rice cereal) and she was to eat only neocate and neocate nutra. Within a week we saw an improvement (no refluxing through her nose ans screaming) and a little over a month later...she is now 90% MED FREE! She is off prevacid and mylanta and only needs zantac every once in a while for night reflux. You can't say that it was just her finally outgrowing it.

How didn't we see that? :/ How did the doctors not see that?

I can't wait to get to the doctors this Friday near Chicago and get to the bottom of this! I feel extremely guilty she had such bad reflux and we didn't know why and that taking away everything led to her getting better. Now that I think about it the only other time she was not having her bottles thickened with rice cereal was when she was hospitalized,,, she got better then too! but we thought it was the med change and got discouraged when it started right back up when she got home.

Really, I can't wait to get this mess straightened out. I am thankful her reflux didn't get cause any permanent damage.

Going to Chicago

I am debating where to start explaining the events of the past week. Let me start off by proclaiming, “I am SO glad it’s Friday!”

Sophia started solids again. She failed them miserably, again. As of today we have no safe foods besides Neocate Nutra, don’t get me wrong I am so thankful for that! But she loves to eat.

I called the GI’s office and gave them the update, per their request. After speaking with the dr, the nurse returned my call and told me that he’s not worried about her not liking solids at this point. She needs to have 40 oz daily of formula and neocate nutra to meet her nutritional needs. After hearing this all I could say was, “WAIT did you say ‘not liking solids’…no no…she loves foods. It’s the throwing up, bleeding butt, reflux and not sleeping she doesn't like” aaaaaaaaannnnnnnnnnnddddddd she ignored me and continued on as I said nothing. She said that the dr wants her to see an allergist. I explained he already referred us and we saw him twice over the last month. When I explained what the allergist said, she had the nerve to tell me it was hearsay and she needed written statement from the allergist. I was about to blow.  I calmly said goodbye to process.

I asked all of my lovely ladies on my forum boards about GI issues and FPIES on what to say/do next.

The next morning I woke up to a voicemail from the GI’s office and the nurse explained that all the notes from the allergist was in her file and the dr looked over them. Nothing more, nothing less.

I called the allergist/immunologist’s office to let them know that the GI wants her to be seen again and they were nice about it, even though he said that the allergy part is GI’s problem because it’s not an actual IgE allergy and he is treating the immunology part.

At this point, I was again, frustrated. Each doctor was pointing their finger telling me to go to the other.

There is only 1 FPIES knowledgeable doctor in the state of MI. I wanted Sophia to see him, even though the wait is months to get in. Even if she doesn't have FPIES, she has SOMETHING and they need to figure it out.

On the forums I was referred to a Dr just outside Chicago. I prayed about it. I felt this was right and decided to give the office a call. It would mean driving 5 hours  and paying out of pocket to see this Dr (but if she helps Sophia I would pay 100x that). When I called, I actually SPOKE to the Dr. She was amazing. She talked to me, made payment arrangements and she said she will speak to Sophia’s Dr’s up here for us! WOW. I made the appointment a week from today! It is so amazing to know that we should have some answers 1 week from today!!!!!!

I don’t think this next week can go by fast enough. Seriously.

So I pray that this is exactly what Sophia needs, that we were guided correctly and we will FINALLY get SOME answers.