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.

Thursday, September 30, 2010

Welcome to Holland

This was shared amongst my FPIES Mommy board the other day.

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



I belong to a group of really great Moms of babies with FPIES. These women have been my crutch, my healing, my everything in these last few months of Kara's FPIES. They all understand what I, what Kara, what our family, is going through. We ask for and give advice, we vent, we share our progress and our failures. We started as perfect strangers and though most of us have never met, we have formed a tight bond.

I've struggled with blogging lately. I've had numerous posts started but haven't been comfortable enough with them to post. I've been through a lot in the last few weeks and I've been struggling. We don't have it as bad as some do - my baby can eat, although a very limited amount of foods. I've been struggling with her refusal of foods, the constant guessing of whether or not she is beginning to react, the battle of trying to get her to drink her bottles and most importantly the balance of a "normal life" and an "fpies life". I'm trying to get grounded and get things figured out. We had Kara's pre-op today and a visit with her family doctor may have been just what I needed to get back to reality.

We have twelve days until Kara's surgery. Twelve more days and then the days of waiting for biopsy results for some answers and rule outs to what all Kara has going on. I have to make it that long and then hopefully we can get the "show on the road" as far as a plan and how to go about these food trials a little more successfully.

Sunday, September 19, 2010

Good Things Run in Threes

We have now had our third food trial pass in a row! Kara is doing amazing!

We passed potatoes, green beens and beef. We are now doing a small trial of tomato to give that ground beef and corn pasta some flavor. She has her own little hotdish and loves it!

I'm so glad we are getting some more safe foods in Kara's diet. She's really become quite bored with everything. It's a daily struggle to get her to drink her bottle. She's only been drinking about half of what she should be to maintain! I'm worried she's going to start losing weight with how active she's become versus the lack of formula she's drinking. I was blaming it on teeth but now I think she's just sick of it. I've given it to her in every different sippy imaginable when she pushes the bottle away but still, no luck. I'm feeding her every chance I get!

With how well she's been doing lately, it's hard to remember where we were a a month ago with the pear fail. She's come so far. I do anticipate that we will run into more "pear fail situations", it's a given, really, and I will be prepared as always but for now it's sure nice to see who our KARA really is!

Friday, September 17, 2010

Beans, Beans, the Magical...

After our trip to Dr. Helm, the allerigst, on Tuesday I was ready to start a new food. I wasn't really sure what I was going to do but at a stop on the way home I went for it and picked up a bag of fresh green beans. Legumes were previously a no for us from our former allergist but we received a list of common triggers from Dr. Helm and beans weren't on it. Bring it on!
Kara LOVED them! LOVED THEM. She ate and ate and ate. I was getting so nervous and probalby should have given her one, instead of like, twenty (!) but I was so happy that she was eating them! The two hour mark passed, I put her to bed. With each grunt, groan, breath she made and each movement, I was waiting for something horrible to happen. It didn't! She slept ALL night!
The next morning I brought her to daycare with the new green beans. I was explaining that she did really good, BUT, well, keep a close eye on her, I'm really nervous and I don't know why, she'll be fine, call me if you think anything, if she starts vomitting don't call 911, I can be there faster...I was a wreck. She asked me if I'd had coffee this morning. (I'm not a coffee drinker.) I didn't know what my problem was! I got to work and a little while later she called me and let me know she wasn't going to give them to Kara for lunch because of my gut reaction that morning. GOOD. I had total anxiety until that point! It was crazy. Usually my gut instincts with Kara have been right on, this time they were off!
Fast forward to tonight. I called it good. Our quickest food pass yet. Kara has been NORMAL (with the exception of cutting those darn molars!) all week. NORMAL. It feels SOOOO GOOD. So good in fact that tonight I jumped right on it again. She had beef for supper. Stay tuned! :)

Tuesday, September 14, 2010

Dr. Helm

I've spent countless hours on google searches trying to find more information, or a doctor within the state that knows enough about FPIES to help Kara and give us some direction. Our GI doctor is great but doesn't recognize FPIES, and really, we need an allergist on board as well. I liked our other allergist just fine but he didn't seem to know about FPIES other than to give us the diagnosis that we already pretty much figured on our own. I've searched basically every combination of FPIES, rice allergy, MN, allergist, GI and others that I could think of. A few of these searches brought me across the name Dr. Thomas Helm.

Upon researching Dr. Helm I found some fellow FPIES Mommies have seen him and have been pleased. One or two of these Moms babies have outgrown their FPIES for the most part or have a good handle on it. I called Dr. Helm's office in Maple Grove and talked with the triage nurse who told me that he has FPIES patients and definitely recognizes it. We made an appointment about 2 weeks ago.

Today was our big day. We left the house at 6:30 this morning to head down to Maple Grove. I had three pages of questions to hopefully have answered. I was satisfied with our visit.

We started at the beginning with Kara's vomiting and shock reactions. She definitely fits the category of FPIES babies in that sense. He asked if we had emergency treatment with those reactions and I explained to him why we didn't - how we got blown off, saying she had some sort of gastroenteritis. We now have strict orders that if she has any other vomiting episodes that are possibly FPIES related we need to get her to the ER immediately. This was really good to know. He said we can't observe her at home. Their blood pressure can drop to scary levels really quickly, not to mention how fast the dehydration kicks in with these babies. She needs to have an IV started immediately in case things get bad. He will be writing a letter with these instructions and a brief explanation for us to have with us anytime she needs emergency treatment. Hopefully this will eliminate anymore "fpiles" instances. :)

He doesn't believe that the diarrhea episodes that she gets from certain foods are actual FPIES reactions. He thinks of these episodes more as a food protein enteropathy. I'm not sure exactly what this means but I'll be researching this, trust me! :) He's very happy that we've seen a GI already and that we have a scope scheduled. He agrees that there may be some sort of sugars intolerance going on in her body and this will give us the answers and rule other things out. I was hoping he'd be on the same page as far as that goes!

I was sure to let him know that our GI won't call this FPIES, but instead calls it "multiple food allergies". To this he responded "this is why she's a GI and not an allergist". It's crazy, their different ways of thinking!

I asked what our future holds. He said typically about 50% of kids begin to outgrow some of the symptoms by age 3 but he says it's more like the age of 4 that he sees it start. When we get to this point there will be inpatient challenges - one visit for each true FPIES reactor food. We will be at Minneapolis Children's and she will be hooked up to an IV before it starts and she will eat the trigger food. I guess we will sit around and way and pray for no reaction. Since there is no test for this, it's the only way to know if they have outgrown any of it or not.

We need to make a follow up in six months and in the meantime he needs to be contacted with any reactions she has as well as reports of her scope, other GI appointments and needs weight checks every three months to make sure she's maintaining.

I was very pleased with Dr. Helm and think we've found a good doctor for our needs right now. Hopefully after this scope is over we can quit having to travel so much!

Sunday, September 12, 2010

One Step Forward, One Step Back

Yesterday was Day 7 of our potato trial. If everything was still fine this morning I was going to move on ot another food because the potatos seemed to be a go. A third pass food! Yay!

I was away for the day at a big craft fair and Brian spent the day with the girls. I got home and he told me that Kara got a hold of Brenna's sippy again. I've been giving Brenna Kara's pear juice to finish it up. Brenna used to be SO GOOD about keeping her sippy's at the table only. I don't know how this keeps happening and I don't know what to do about it. I feel like we are punishing Brenna enough as it is to not let her have certain things, or snacks when Kara is around but these accidents are happening all too often lately with a curious toddler!

Kara woke up from her nap with a really icky diaper. I was home for a few minutes and had to change another one. Her bottom? Broken out, tomato red, open, bleeding spots. It happened that quick again. Pears are DEFINATELY a fail - at a few sips of half pear juice, half water she reacted like this about 3 hours after digestion. So. Is this an FPIES reaction or the sugar intolerance? I can't wait until her scope on the 12th, still one month away. I'm hoping to get some more answers about all of this.

Now we have to wait to get back to baseline again before we can start another food trial. Hopefully this little bit that she ingested will be out of her system soon - like by tomorrow! After the pear food trial she was sick for over a week before we were back to baseline.

As of this morning I still wasn't sure what I was going to trial next with Kara. I guess this gives me a few more days to decide. We see the new allergist on Tuesday so hopefully he has some insight for us.

Bath Toy

The other night I had the girls in the tub playing and was sitting on the floor playing with my phone. I got Kara out of the tub, in pj's and went to wash Brenna's hair. Kara kept throwing more toys in the tub thinking Brenna needed them. Apparently she thought my phone was a toy.

I was scrubbing her head as I heard a "plop" and looked down to see the purple back of my iphone at the bottom of the tub. The iphone that I just got, that I paid a LOT of money for. I grabbed it out, it couldn't have been in there 5 seconds. I quick pulled the cover off and dried everything off. It all worked. A few minutes later the screen went shaky and then shortly after nothing worked. We tried the rice trick - I put it in a bag of rice for a few days and we finally got it working again today.

I thought I threw all the rice in the house away a while back. We certainly haven't eaten it around here in months for fear of Kara ingesting a single piece of it. It's a forbidden food at our house! Luckily I had a box in the back of the cupboard. I think the fact that the rice is what saved my phone is a little ironic...

Friday, September 10, 2010

Bottle Battle

A thought that runs through my head on a daily basis is "what will happen if Kara stops taking her bottle." I remember Brenna getting to an age, probably around 13 months that she didn't care about her bottles at all anymore so we took them away.

At this point Kara's main, pretty much only, source of nutrition is her Neocate Jr. She will not take this out of a sippy cup and we haven't pushed it because we NEED her to drink enough of it in a day to maintain. So, she gets roughly five 6 oz bottles per day. Lately there has been a morning or two when she's just too busy. She wants to see what big sister is doing or she just woke up for the day and doesn't want to sit in the chair with her ba-ba. The other day she took TWO ounces of it and that was it. She hadn't had a bottle since seven the night before so she should have been starved but absolutely refused her bottle. It's days like this that I start to get really nervous - for the lack of nutrition, for the chance of dehydration, for every problem that these two things can cause. I constantly handing over her sippy cup of water which she'll sip on once in a while, when big sister has a sippy but nothing close to what she should be having. If I replace the water with her Neocate, she throws it, wants nothing to do with it.

With her only having two, hopefully soon to be three, safe foods there's really no room for her to be refusing anything in her diet. Hopefully she will continue to drink her bottles every day and we won't have to even get to that next point.

Thursday, September 9, 2010

Kara's Surgery

Kara will be having surgery on Tuesday, October 12th at the U of M Children's Hospital.

We won't know what time until the week before but if I understand it right, it will be right away in the morning and then will be under observation until late afternoon or so. She will be put under for the procedures to be done. They will be doing an egd and a sigmoidoscopy. They will be doing biopsies and this will hopefully give them a better idea of what we are dealing with.

GI Appt

We went down to the U of M yesterday for Kara's GI follow up appointment. Dr. S. was so good, once again. She came into the room and really seemed to remember us and specifically, Kara. I showed her my spreadsheet that I update as we progress or regress and she seemed impressed. She commented that I seem to have a really good handle on how to do this! (Thanks fellow FPIES Mommies!) After we briefly went through how the last month has been she told us that she wants to scope Kara. I'm so glad she was insistent on doing this because I was going to ask her if she would, anyway. It would be so nice to know what is going on in her insides after all these gastro-disasters lately.

Dr. S. was very interested in hearing about the pear fail and is thinking that Kara probably has some sort of sugar intolerance on top of the multiple food allergies. They will be doing biopsies to see if we can determine what exactly is going on with that as well.

She had to have some lab work done as well as a few other preop things done and she did so well. She is such a good patient when she's getting checked out! The lab draws are obviously horrible but I just remind myself that she's more mad than anything because they numb her arms with emla cream 20 minutes before the blood draw so she really can't feel a hting. I'm getting stronger about holding her down for these - both physically and mentally! It was a long day and we were all tired when we got home but I was satisfied with what we found out.

Monday, September 6, 2010

Potato Trial and GI

Our latest food trial is potato and we just finished day 2. She doesn't care for them too much so it's sort of a struggle to get her to eat them. I fried some up with corn oil tonight so I'm hoping she'll eat them a little better tomorrow.

As always, I'm debating what our next trial will be. I don't know if I'm ready to try a fruit, vegetable, a meat yet, or even wheat. After our pear fail I'm a little leery on another fruit but I would really like something to flavor her water a little bit, especially with our latest (almost) bout of dehydration. We really struggle to get her to drink her Neocate and even then, she'll only take it out of a bottle and sometimes even refuses that.

Tomorrow we go to the U of M for our follow up GI appointment. I'm really anxious for this trip, as usual. In the last month we've had two fails - soy and pear and two passes - banana and corn. At this rate we aren't getting anywhere very fast! We will find out tomorrow if Dr. S will scope Kara. with the recent pear fail and the week + of getting back to baseline, I'm really hoping that she will decide to do this. Poor Kara has reflux going on, not to mention her other icky tummy problems!

I have to pack for tomorrow and figure out some way to pack her food for the day - keeping it cold, warming it up, what to pack her, how to feed her. Going to a restaurant is out of the question, it's just not fair to Kara to eat in front of her like that. We'll probably be relying on Neocate tomorrow with Kix to tie her over and more or less entertain her.

I'll update about the GI as soon as I can. Wish us luck!

Saturday, September 4, 2010

Week Update

This has been a busy week. I have spent the majority of it home with Kara, in my arms. I'm waiting for her poor little body to get back to baseline and just when I think she's getting there, something else happens.

I brought Kara back to the doctor on Thursday. Her temp went down but she was still so cranky, having icky diapers and her bottom (once again!!!) is raw. That trip was a waste of time, not to mention the $25.00 co-pay. We had to see a different doctor, as our doctor was completely booked for the day. I had faith that he would listen to us and do something to try and help us but I left there feeling extremely discouraged. He had NO CLUE what I was trying to tell him and the only advice I left with was "try Desitin." REALLY? DESITIN? She has a PRESCRIPTION for her bottom because it gets to bad. I use EVERYTHING on it. What about this awful tummy ache? What about labs drawn to see if everything is ok, check levels that might give us an answer as to how bad the inflammation is? (For the record, his answer to that was "I can run those labs but if they come back out of whack I wouldn't know what to do for it, anyway so we'll just let GI do what they want on Wednesday.") IN MY OPINION (but I'm no doctor so maybe I'm off!) RUN the labs anyway, we see GI on Wednesday and then we can be one step ahead when we get there. No such luck. He did look at the letter from our last GI visit and said "it says here her RAST and the scratch test showed no allergy to rice, oat, soy, and just a minimal reaction to dairy." I explained that all her FPIES reactions aren't IgE and he still didn't seem to get it. When he brought up her FPILES (that's right, PILES) I gave up. I did call and our nurse and let her know what happened once we got home. In the meantime we are trying to manage until Wednesday. Her doctor can see her on Tuesday if needed.

Yesterday Kara finally started to be feeling a little better but her squealing, screaming and screeching continues. She is not happy to please and in the meantime we are creating a monster. This afternoon we couldn't please her no matter what we did. She was finally content, and when we discovered what she was in to, we decided to just let her be because she was happy, our house was quiet. She pulled all of the DVDs off the shelf, one by one. There must be 100 of them, in a pile on the floor. She had a blast. What do you do in situations like that??

Yesterday we had some friends over. Brenna forgot the rules and brought her sippy upstairs with juice in it. Kara went up to see what the big kids were doing, found Brenna's sippy and sucked it down. It was white grape juice. She's had grapes before and prior to the pear fail I would have been pretty sure they would be safe but since then, what's safe?? She's so crabby but has been, she has icky diapers, but has been, so who knows. Then this morning i discovered her walking across the room eating one of those pink/white coated animal crackers with sprinkles on them. Brenna talked me into buying them at the grocery store and must have put some in a baggie yesterday when her friends were over. Kara got a hold of that baggie, and thought it was gold! I didn't even look at the ingredients. I know she ate one of them, I couldn't get to her in time, and I'm sure they contain milk, soy and who knows what else. I'm worried at what's to come as the day goes on because of the extreme crabbiness today has already brought.

In the meantime, I have gotten two get aways the last two nights and they are healing! Thursday night we had a fire department auxiliary meeting and a few of the girls went out afterwards. It felt so good to be away but we talked about Kara quite a bit. It's funny how we deal with this every day and don't think of it's general difficulty a lot anymore, it's become a (frustrating) way of life. Talking about her and answering questions about her really got me thinking and emotional about how much this sucks. It's tough but it's a way of life. There's no other way for her/for us. In order to figure out what she can and can't tolerate, we need to go through these challenges and unfortunately, deal with FPIES reactions if it's something she can't handle. Last night, I was able to get out and have appetizers, a margarita and go to a movie with a long time girlfriend. We haven't hung out one on one in a long time and it was so nice to get away again! Shannon, next time it needs to be longer, or lets even make it a weekend! :) Brian gets his getaways but I have a hard time leaving Kara too often so it really felt good. Tonight I may make it a 3rd night and get out on a date with my hubby if Kara isn't too fussy. I think some Grandma and Grandpa time is definitely the cure for that fussiness if she's ok otherwise! :)