Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Monday, September 26, 2011

Neocate: Two More Weeks

Kara has been on her Neocate Jr only diet for two weeks. Last Thursday was the end of the two week trial and we were to update GI at that time.

I called and ran into my usual problems with the nurse coordinator. She, at some point in the conversation, made the mention that some children have to be on Neocate for sometimes six months before they are ready for food. NO NO NO. Kara is better, her tummy is much better, she's at baseline as far as her tummy goes, and our allergist said she should be scoped before we begin food trials. I got extremely frustrated with her again (this is an every.single.conversation.occurrence with her) and finally asked to have the doctor call me so I could talk to her. The next morning I called Kara's allergy office. The staff at her new allergist's office is amazing. I explained my conversation with the nurse at GI and how frustrating it is for us and she said they would get working on contacting the U right away.

That day, after work, Kara's GI called me. We discussed the plan, and she explained that it was discussed with Allergy and that Kara is to do two more weeks of Neocate. Her gut is well on it's way to being healed but we want to keep going with this before jumping right in on foods again. We ended up going through this big long plan - we are doing a total of four weeks of formula only and then starting a trial of corn, where Kara will have corn pasta, kix, corn chex, polenta, grits and a few other corn-only foods. She will do this for 10-14 days (assuming she can tolerate it for this long) and then we will call and update GI, at the same time, scheduling a scope. After the corn trial we will do the same with a potato trial for 10-14 days and the scope will be right after that, so roughly six weeks away. We will work together on developing our food trial plan. For now we have a list that we will strictly avoid due to her dairy and peanut allergy and her FPIES reactions to soy, dairy, rice, oat, pear and green bean.

This is our plan. There are a few other things going on - we still have those Mayo appointments scheduled (which I'm holding onto for now simply because of the communication problems we seem to have with the U and needing a MN GI available despite what happens with Cinci), we have the Cinci stuff in the works, and I'll keep in close touch with Kara's Allergist to help me through all of this. I think I'm going to be leaning on her office for a lot more support in the next few weeks - they are wonderful and have really helped us in the last few weeks!

So - here we are. Here's our plan and I'm ok with it. Neocate only is tough but honestly, it's a lot easier than I thought it would be. Kara has been great with it - she seems to understand and be ok that the doctor said bottles only but when she has her meltdowns, they are pretty heartbreaking. We can do this - it's helping our girl!

Baby Steps

This whole process of getting Kara in at Cincinnati Children's Hospital is moving in the tiniest little steps I've ever witnessed. We started this process well over a month ago and to date, we still don't have an appointment set.

Early last week I was informed that they finally connected with the U to get Kara's biopsy slides sent. I was notified that they were going to be Fed-Ex'd and then the next afternoon, notified again that they had been received. I had crossed my fingers and toes that they would be in the system in time for her case to be reviewed on Thursday, the reviewal day and on Thursday afternoon wrote an email asking if her case was on for that day, and if we could please have appointments set up by the end of the week so we didn't have to wait an extra week. I never received a reply.

This morning, I received an email from the pathology department letting me know they need insurance info and patient demographics before they can review the slides. Shaking my head, I emailed this info back and asked if the slides will be reviewed this week. The reply was yes, and it will take 2-3 days for this.

I am not a very patient person, I will be the first to admit this. When I want something done, I want it done now (!) and if it can't be done now, I want to know what I can do to help speed up the process. In this case, there is nothing I can do. I sent everything that I could to Cincinnati the first day that I made the initial phone call. I guess the good thing is that we have Kara's symptoms under control right now, even if she is on a Neocate-only diet. If she were crying in severe tummy pain like she was 3 weeks ago, it would be much more difficult to be patient and I would have given up on them by now, in search of another national hospital that could help. (that thought isn't entirely out of my head, either, at the snail pace we seem to be moving...)

So, we sit and wait. Another week goes by, hopefully by this Friday we'll know the date that we'll be travelling.

Monday, September 19, 2011

Cinci Update

The details for our trip to Cincinnati have been sllloooowwwlllly coming together. I've been in contact with one of the coordinators 2-3 times a week and the nurse probably once a week. For as on-the-ball as things were that first day of me getting things set up there for Kara (AUGUST 18th!) the process has been ridiculously slow. The latest hang up has been getting the biopsy slides from the U of MN.

The coordinator has requested them two times with no luck. With a phone call, it was found that I need to sign a form to have them released. Email, print; sign, scan; email again. At least this could be taken care of electronically! Last Friday, the update I received via email was that she had still heard nothing. Today I received another email that they finally got it and are fed ex-ing the slides so hopefully they are there tomorrow, or at the latest, Wednesday. I'm sure it's going to be another week before we even know WHEN the heck we'll be heading out there. Pathology has to review the slides and then the nurse presents on Thursdays, from what I understand. Fingers crossed this will be ready by Thursday but I wouldn't be surprised it it was yet another week. In the meantime, we'll just keep hanging in there, doing what we do best!

Thursday, September 15, 2011


We have struggled with Kara's eczema pretty much since birth. We get it under control, and have a flare again. We've used so many different creams, lotions, ointments, and haven't found our magic treatment yet. In the past few weeks we've noticed a definite increase in symptoms, despite the limited diet, and most recently, the liquid diet.

Yesterday we noticed a pretty major increase in her eczema, to the point where she pretty much looks terrible. I left a message with her allergy nurse at the end of the day, anticipating an a callback from the doctor sometime today.

We had a terrible night last night. I dont' think that neither Brian nor I slept for more than one consecutive hour last night. Kara tossed and turned, was so uncomfortable from her skin. My alarm went off this morning and I let work know that I wouldn't be in, and with that re-set the alarm for when the appointment line at our local clinic opened. No need - Kara was up, and with Kara up, Brenna was too. I was waiting for a call back to see if Kara could get in to see her doctor and decided maybe I should just call to Kara's allergy office to see if by chance she could be seen today. I called down there, spoke with the nurse and she fully agreed that Kara needed to be seen and they were able to get us in at 1:00 today. We had about an hour and a half to make plans and get on the road!

I was worried about this trip - Brian was unable to leave work and with me being up most of the night I was a little nervous about driving this trip on my own with Kara. It's a good 2 1/2 hour drive. Luckily my mom was able to make the trip with us, which was great because it ended up being a very long day!

We got to the clinic a little early and the doctor took us back early. We went through how Kara has been since she last was seen, explaining that even that week that we had seen her last, Kara had ended up in the hospital. I hadn't updated her on our latest food issues, the elimination diet and down to Neocate again so we went through the timeline for all of that.

Kara had a lot of poking and prodding at again today. She was out of sorts and looked awful so it was a long day. She had some labs done for cultures, an immunization because one of her immunization titers didn't come back the way they should due to her IgA deficiency and in the end, was skin pricked for bunches of things again.The final report was that the doctor firmly believes that the eczema is environmental, meaning that something in the air is setting her off so much and it's clearly not something that she is eating this time. She thought for sure that Kara's ragweed test and even possibly the trees and grasses would come back high but in fact showed nothing. Neither did any of the animals! She said that she's sure this is only the beginning and we'll see a positive as time goes on. Kara's milk and peanut reactions were very discouraging. She had a high reaction to peanut, much worse than the last one she had, and the dairy result was definitely positive as well. Obviously, she hasn't had any peanuts ever, and no dairy in abotu a year and a half so we can't blame those on the skin!

We aren't going to be doing anything too different as far as the skin care and medications go. Her face, we are going to start using vaseline on. My girl is a greasy, shiny mess! We are going to start trying moisture wrapping and giving her a daily dose of zyrtec as well as benedryl as needed. We'll get to the bottom of this one way or another!

We are to finish out the two weeks of Neocate only. At the end of that she wants her scoped right away and then for us to get back on the road of food trials. We mapped out a little plan of doing five day trials, pending scope results, of course. She is going to be talking with GI about this plan and hopefully we can get this show on the road. She would like to see Kara eating again as soon as possible.

Even though these last few weeks have been tough, it's amazing how one challenging, but educational day can turn our outlook around again. My mind is spinning with all of the info from this appointment and I'm sure I'm missing some pieces to our day but I feel like we have a good plan in place for right now.

Liquid Diet

Well, we made the decision to start the Neocate only diet a week ago, last Friday morning. The week has gone just as smooth as it's gone terrible, if that makes any sense. She has done exceptionally well with it, but her meltdowns have been terrible.

We've done pretty well with distraction and I was quick to catch on when she was getting hungry. At the first sign of crankiness, offer a bottle. We've done a lot of snuggling and rocking in the chair. She's been taking enough in and I've been weighing her daily, every morning, to make sure she's maintaining her weight.

One evening this week, I was away. I received a text from Brian letting me know that I needed to come home, that Kara was really upset and consolable because she wanted to eat. Her words were "no more owie tummy, my owie tummy all betta!" Talk about heartbreaking. I couldn't get home quick enough to hold my girl. Last night we had another one of these instances where she was crying inconsolable about food. I understood at that point what Brian was going through that night. She just sobbed and sobbed on my shoulder. I just have to remind myself that we have one week down and one week to go and this is to help her get better.

I have had to be reminded a few times that despite Kara not being able to eat, we still need to eat as well as feed our four year old. I wish it was as simple as to be able to say that no one is allowed to eat or even talk about food in front of Kara but we still need to eat. This has been trying, perhaps the most trying phase of our lives so far.

Despite how difficult this diet has been on Kara and our family, we are seeing some improvement. Kara hasn't complained much of a tummy ache and her diapers have been almost normal. We have quite a problem with eczema which is nothing new but the fact that tummy aches are better is promising. Are we beginning to see a baseline again? Only time will tell, but I sure hope so, so we can get back to food trials again!

Friday, September 9, 2011

Here We Go Again

Kara's been puffy lately. She got home from daycare Wednesday and it was the first think I noticed - she was puffy, pale and had dark circles under her eyes. No other symptoms besides those but really, she looked absolutely terrible. I called her GI office at the U that night and left a message with her primary's nurse yesterday morning. We also decided maybe we should pull beef from her diet as well.

Yesterday's menu was applesauce and potatoes. I also sent some corn to daycare. I got a message from our nurse, telling us that the doctor said to pull corn and that she wasn't sure what else to tell us, other than keep trying to get through at the U and wait for Cincinnati to come through. My heart sunk, I wasn't sure what to even think anymore. Pulling corn takes away kix, corn chex, corn pasta, all these staples that we started with and that we have resorted back to! What the heck can you really do with apple and potato? Grrrrrr...

I got home from work and let Brian know the suggestion and that I was also waiting for GI to call me. With that, I took Brenna to her first night of dance. Halfway through dance, my phone rang and it was Kara's "other" GI calling, the new one that we saw at the U a few weeks ago. We discussed everything that's gone on since we saw her last, Kara's rollercoaster of symptoms. How we pulled wheat, things got somewhat better, and how we had to pull the beef last night. With this, she strongly suggested we go with Plan B, which is something we had discussed at the last visit. Plan B is a Neocate only diet. ONLY. As in, it was hard enough to remove 15 foods from Kara's diet but now we need to remove EVERYTHING and rely on formula alone. On a 27 month old. GULP. She discussed with me how she wouldn't wish that upon anyone, understands that it's going to be one extremely difficult thing that we, as parents, will have to do, to deny our child food and hope that she understands, but it will be best. It sounds like Kara will be scoped at the end of all of this, we just need to give it a minimum of two weeks to see how she responds.

This doctor was so great on the phone. She talked to me like I was a real person and let me know that she understands how awful this could potentially be, and to definately keep them in contact for the next couple weeks and we'll decide from there what our next step was. I got off the phone with her and wanted to cry, but sucked it up and went back to watching my big girl dance.

We got home and Brian and I talked about this, trying to come to an agreement of what we need to do. I would LOVE and almost feel the NEED to keep some sort of solid in Kara's diet. KIX, a staple since she's been 9 months old, something, just for a little snack here and there. We need to decide what we are going to do, pick a day and do it. The sooner, the better, for Kara's sake.

Monday, September 5, 2011

The FPIES Foundation

Wednesday morning was the big launch of a project I and a group of 7 other amazing FPIES Mom's have been working on feverishly for the past few months. The FPIES Foundation.

I wrote a very brief post the other day about our foundation but that post doesn't do our foundation any justice! A few months ago I was approached by a friend, a mom, who along with a few others had a vision of a central hub where Families and Providers can all go to learn about FPIES. A place where a mom could go at two a.m. after getting home from the ER, after being up with a screaming baby all night, and find all sorts of resources in one spot instead of search after search, wondering which literature would be the right one to bring to her doctor, wondering which symptoms may be FPIES, wondering what their next step should be in this journey. We are all experienced moms, with children struggling with the unknowns of FPIES. We simply took what we wish we had and put our minds together to create this amazing foundation.

We saw the need for help now, as more and more moms have been coming out lately, having similar questions, replies from their physicians and the other similarities that all of our families share. This is a work in progress, as every foundation I'm sure is, but I feel that what we have launched has already helped so many! Stay tuned as our minds and bodies continue to work around the clock to improve this already amazing cause!!! We are working hard!!!


Another Fail

Tuesday afternoon after work I picked the girls up and headed home. Kara immediately started asking for a ba-ba, which is typical for her. She drank her bottle down and snuggled. Ok, she's tired...had a long day. I can handle that. Shortly after, she started fussing about having a tummy ache again and sure enough, we dealt with tummy problems off and on through the evening. At one point I was going to leave a message with the doctor saying "just kidding! We're having trouble again!" but decided against it. Maybe it was a fluke thing and decided to ride it out for a few days.

We continued on the wheat, beef, apple diet and things progressed through the week. Four a.m. crying out "tummy.aches. tummy.aches." On Thursday I decided to call and leave a message that we are having problems. The nurse called me back and said "PULL WHEAT." and let us know they can see her on Tuesday if needed. I wanted to cry. I had a sinking feeling that we were building towards an intolerance to wheat but was in denial. It's pretty discouraging to keep having food fails now, on foods that for months (or even a year!) we thought were safe. I dont' know where we went wrong - trialing foods too quickly, I'm sure, and then having symptoms build so slowly that we didn't notice a difference until it became tummy aches and icky diapers four, five, sometimes even eight times a day and having so many foods in her diet that we had no clue what was going on.

This week has been difficult. With removing wheat, we added potato. Not sure if we were supposed to do that or not but she needs something to fill her tummy and potato's were originally thought to be safe. Kara is used to eating and was really good about knowing what she could have so this elimination and being nearly two and a half is one of the hardest things we've had to go through. Life is just not fair.

On a more positive note, Kara has been wheat free for three days now and her tummy seems to be improving. She's having occassional tummy aches and was up a few times last night but I'm confindent that it's still from the wheat being in her system and trying not to think that she may be building towards yet another food.

Tuesday's Appointment

Kara saw her doctor on Tuesday, a follow up from the latest hospital stay. We were so excited and she had her own little statement to tell the doctor. I should have gotten a recording of her saying it, it was too cute! "Owie tummy is all bett-a. No more owies!"

We were so excited to report that Kara had been tummy ache free for that week. What we weren't excited for, however, was the report of the eczema. It is back, in full force. I think I had previously mentioned this. Not only her normal, horrible problem spots on her poor feet and ankles but her bottom, behind her knees, her wrists, her arms, even her tummy was beginning to get that familiar, rough feel to it. "It has to be the wheat" is what her doctor told us. "Watch her on the wheat."

Our clinic received their flu shots already, earlier than ever, this year. We debated giving her the shot already, because she was actually healthy but opted against it. This is something she's going to need this year, whether we like it or not. With her immune system being so low we can't take any risks. Now watch, we'll be kicking ourselves that we didn't just do it when we did because we'll have a run of illness now. I hope not!

We discussed how we are waiting on hearing back from Cincinnati (still waiting, getting a little discouraged!) and how Mayo actually told us that they'll see Kara but Cincinnati or Milwaukee would be better choices to really dig into what is going on with Kara. (WOW!) I explained that with three different specialists telling us that, I guess Cincinnati is what we need to do! We left this appointment with no plans for any scheduled follow-up - we are usually seen two or three times between anything scheduled, anyway! We have to keep the flu shot in the back of our minds and update her of any changes, of course. Oh, and Kara has maintained her weight! Yay!