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. 

Quick-ish Update

Sophia has been very, very sick the last few days. Between screaming, refluxing, not eating, having such watery diarrhea that it just runs out of her diaper and not sleeping because of all of the above we are all exhausted.

The doctor ordered some stool sample tests, which we handed in today, to test for rotovirus, giardia, another parasite, and some more things that I cannot remember.

Tuesday the GI decided to take her off all food besides her Neocate formula and rice cereal and we talked about direct admitting her to the hospital if her dehydration persisted. He explained that he thinks that this is all part of her non existent immune system. They gave me a list of things to get: sanitizing hand wipes, pacifier wipes (in case it drops on the floor), clorox/lysol wipes for the house.

I also made the appointment with the immunologist: october 10th.

Yesterday morning, Sophia was still in bad shape so the GI's office told me to come down and we will try this product by the same people who make Neocate. It's called Neocate Nutra. It is a semi solid, cereal like substance, that is completely hypoallergenic like her formula. Lemme tell ya, it is EXPENSIVE! A normal box of baby cereal costs somewhere around $2.99. The neocate nutra costs $35 a can. Luckily our GI's office is AMAZING and they gave us 4 cans!!!!!!!!!

Sophia ate the nutra twice yesterday and so far once today. She slept pretty good last night and so far today is less lethargic and fussy and is actually eating small portions of nutra and her bottle!

While the no food besides neocate & neocate nutra is by no means a solution, I am hoping that in-the-mean-time-in-between-time this is something that will help her stay as healthy as possible until we see the immunologist.

Bubble Girl

Our struggles with Sophia are getting, for lack of a better word, interesting.

It’s always nice scary when the nurse tells you that they are going to wait to discuss it any further because they don’t want to scare us with the possibilities.

Well the blood test came back last night and we received the results. The RAST test came back normal (DUH! We knew she had non-IgE mediated food allergies) and her CBC is normal. The trouble began when I flipped the page and saw that there were 3 highlighted portions letting us know she is low in her IgG, IgA and on the threshold for her IgM.

First thing this morning I called the GI’s office to see if they had gotten the results and if they needed to be forwarded to the doc at the conference. She said yes they got them and yes she was sending them to him and when he responded she would call me. She expected it to be after lunch before we heard from him.

I received a phone call 20 some minutes later. She explained that the Doc looked over the results and that Sophia is immunocompromised, meaning her immune system isn’t working properly. They explained that she is being referred to an immunologist and they will have a better idea of the why’s but for now she said that we needed to see our primary doctor to have Sophia looked over. She told us that when we get to the family doc that we needed to tell them that she can’t wait in the waiting room because she has a compromised immune system. We would also check in with them again after that appointment.

The appointment was useless but we did get medicine because Sophia has a yeast rash (again). They just told us that the immune system works like this and don’t take her to public places where she can get sick….oh and wash our hands a lot. <- I knew that! And we went home.

I am so glad that the nurses (and the GI) took the time to really explain what we should/shouldn’t be doing right now; last thing I wanna do is screw this up and end up getting her sick!

For now we have to:

Not take her to public places.

Frequent hand washing and hand sanitizer for everyone in the house.

Keep common areas of the home wiped down with Clorox wipes.

No sick visitors (or recently sick)

No church, daycare, school etc

Stay away from common allergens, smoke and keep water out of her ears.

When I asked (Yes I know I probably shouldn’t have!) more of why they thought she had such test results. She told me that it could be auto immune diseases…something about bone marrow and then said that it’s best not to scare me and just wait for the immunologist. Well consider myself scared!

I know that besides the really bad yeast rash (which came out of nowhere and went from nothing to really bad in a matter of hours) and her normal food/reflux issues she seems to be currently healthy.

Praying we can get in quick with the immunologist and get some answers!

Labs: IgG and IgA

With all the problems this past few weeks the pediatric GI ordered a full blood workup.

Yesterday night we picked them up and I turned to the RAST test results (because thats all I wanted to know) and as we though, they came back negative. As we spoke to the GI last he agreed she has non IgE mediated allergies.

Anyway I flipped through casually and noticed some things highlighted. IgA and IgG were very low. I didn't even know what that meant but knew it had something to do with the immune system.

This morning at 8:02am I called the GI's office and spoke to the nurse. She sent the results to our GI (who is out of town at a conference) and said it would prob be 4pm before we heard anything back.

At 8:46am I got a phone call back from the office. He took a look at the results and said that they are def abnormal and because of the IgG and IgA results she is considered immunocompromised and he is sending her to a pediatric immunologist as well as getting repeat labs with subclass to pinpoint the low IgG subclass.

So now we wait for a phone call sometime this afternoon to tell us exactly what we can/can't and should/shouldn't do until we wait for the appointment with the pediatric immunologist.

The nurse was trying to be helpful with information but really ended up confusing me more.

Doing my FAVORITE thing ever...waiting....

Flares, Blood Test and Upper GI

Sophia's reflux starting flaring last week. It felt as though we weren't giving her meds at all! She screamed the horrible, ear piercing scream that we haven't heard since she was put in the hospital at 3 months old.

Several phone calls to the on call doctor this past weekend and we added yet another medication, Reglan, to the mix. I had mixed feelings about it, but as the doctor said it would help with motility and "in theory" push food along instead of allowing it back up, I was willing to try anything. But then in the back of my mind, my "mommy voice" kept telling me not to give her that medication.

Good thing too. She was prescribed the incorrect dosage, which COULD have caused involuntary, seizure like movements.

Concurrent with adding the reglan (which she never took) he upped her prevacid (again!) to her current weight and that seemed to do the trick!

We also decided to cancel her PH probe. We couldn't justify taking her off all her meds for 2 full days prior to the probe, having the probe put in at POPS (pediatric outpatient surgery), making her wear arm no no's and have the probe in for another 24 hours. Especially when the end result would not help her treatment plan in any way.

We have talked with the doctor (through the nurse, because he is away at conference) and he decided that she needs to have a full blood panel done again, which she is currently having done right now thanks to daddy (yep, I didn't wanna see my baby being poked again!) ...Doc ordered a regular blood panel, an immune system response (something or another) panel and a RAST blood test <- again. Which is pointless in my opinion, because she has non-IgE mediated food allergies (which is a fancy way of saying they won't show up on the RAST testing)

So now we wait for the blood test results, and an appointment with the GI to plan our next move, which will most likely be an upper gi/ endoscopy.