What Do We Do?

I'm at a loss as to what to do with Kara. I'm going to call the GI doctor tomorrow. At this point, nothing is working and it's so tough to just NOT feed her the food that she wants. She knows she's missing out and she's miserable. It's heart breaking having to sneak bites of food around her because if she catches you eating, she'll want some too. It's heart breaking to have to tell your three year old she can't have something because Kara can't have it. It's heart breaking having your baby cry and cry and not be able to soothe her even though you know what's wrong.

We went to carrots today because I was almost positive those were going to be a safe food after doing 4(?) 5(?) days of apples and not having a definite yes or no. She had a horrible, horrible diaper tonight. As some know, we are in the process of gutting our kitchen, so I had the girls upstairs playing. Brenna came downstairs and said "Mom, Kara's really fussy and wiggling her butt. I think she pooped." I knew what this meant so I ran upstairs, grabbed her and yelled for Brian to meet me to help out. I laid her down and she was already screaming. I cleaned her up as he held her hands and tried to comfort her. Her butt was so raw it was bleeding. It happened that fast. This diaper also had undigested food in it, again - this is a problem I've been noticing more and more lately and I'm not sure what to think about it. They were steamed carrots, it's not like it was corn, or anything raw!

She was so fussy, pretty much from the time I got her home from daycare. She just cried and cried. I was trying to pack bags up for us to move to the in-laws for a few days since our house is a disaster area right now but Kara wasn't allowing that. I tried to rock her, she cried, I tried to feed her some plain barley with Neocate and she cried, it didn't seem to matter what I did. I finally left, figuring I'd run home later and get what I needed. We gave the girls baths tonight and Kara was so excited to have her bath at Grandma's house. I stood her up in the tub, waiting for her to sit down. She cautiously did and she slowly sat down but the minute her little butt hit the water it was instant tears. She kept trying but you could tell that it was so painful. I just want to cry right along with her as she's going through all of this.

At this point I don't know if this is FPIES or if she has something else going on in her digestive system. Hopefully the GI Dr has some sort of answer for us, or will want us back down there to do some more testing. I sent in her occult blood test yesterday, they'll test it tomorrow and then I suppose we'll wait for the Dr to get back to us with the results. I'm not sure what the heck else to do.

Bad Day!

Today was a bad day. There's no other way to sum things up. Kara has continued to have nasty diapers despite the increase in her forbidden foods. Yesterday we struggled and last night she was inconsolable - she'd lay in arms and scream, I'd put her on the floor, she'd scream, it was just down right awful. Luckily we finally got her to bed shortly before ten and she slept until about 2:30 when she got up for a quick bottle. Have I ever mentioned that I feel like I still have a newborn sometimes? :)

I couldn't sleep last night. Kara and her care ran through my head all night long and it just frustrated me. I couldn't seem to shut anything off. That made for a really rough morning being so stressed out and over tired. We had our typical Monday morning rush of waking up the girls and getting out the door by 7:15. I'm not sure what triggered everything else but I couldn't function once I got to work. I continued thinking about Kara, how nothing has changed, how we still have 5 days til she sees the specialist. I was so tired and it showed. At one point, a friend stopped me on my way to my desk to ask how Kara was doing. I started to talk and then just said I couldn't right now, I was going to lose it. I went to my desk and my eyes welled up with tears. This happened so many times to me today. I finally finished up what needed to be done and left the office at 12:30, at which point I HAD lost it. I had way too much on my mind and phone calls that needed to be made. I left work, not sure what direction to go, home, or for a drive. I called Brian to tell him I was coming home and I lost it. It doesn't seem to matter HOW hard I try to do things right for Kara, we just can't seem to manage to get her symptoms under control. Our allergist wants to see her again in three months. THREE MONTHS. What the heck are we supposed to do for that time? Hope that the GI can figure her out? in THREE MONTHS she'll be EIGHTEEN MONTHS. At what point in this awful "thing" do they really start to worry? I keep thinking that it's not right how they just let us be on our way. What do parents do that aren't knowledgeable, that don't have the support systems that we have? I spend every spare second of my life researching on the internet, reading blogs, reading message boards, trying to figure SOMETHING out that can help my poor baby. How do babies survive when they don't have this group behind them? If I were to play totally dumb, would there be more help for us? There is something wrong here.

I went home, waterworks and all. I decided to get my ipod, hop on the lawn mower and relax. For some strange reason, I LOVE mowing the lawn! It's my therapy! I think it's because it's my alone time, I mow part of our field and jam out to my favorite songs. Brian had one request and that's that I don't sing along. Apparently I've gotten some strange looks belting out the tunes! I let my mind clear, let my eyes clear and then went back inside to tackle my obstacles for the day.

I called the insurance company again to request a case manager. I was questioned quite a bit, put on hold and then the lady came back on and asked me a ton of questions, again, like last time where I'm having to explain everything. THIS is why I want a case manager. ONE person to deal with, who is familiar with our needs instead of having to start over each time I have a question. I held back my tears as I went through our story, my frustrations, and found out that we CAN have a second opinion, we CAN go to any of the "big" hospitals - Children's, the U, Mayo, all of which I figured but wanted to be sure. I was mostly worried about being disappointed again from gastro and wanting to see someone else, only to find out that we aren't able to. They are going to review our case again and I'll hopefully be getting a phone call letting us know they are going to assign one person to us. My fingers are crossed but my hopes aren't that high.

Next I called Fairview GI, the clinic through the U's Children's hospital. (I think, this is all so confusing which group practices at which hospital!) I was able to get to the GI nurses voicemail and left a message. I asked if our doctor that we are seeing on Friday KNOWS about FPIES, and if there are any other GI's in their group that do know about it or see patients because we've really been struggling and if there's someone specific we can see, I'd rather do it that way instead of screwing around the way we have been. I really hope they call me back tomorrow as well. I got off the phone, again, started crying.

What a day this has been. I don't feel good, I'm stressed out, overtired yet can't sleep. Friday's appointment can't come soon enough. I just hope we can start to get somewhere because I'm not sure I can handle too many more obstacles without something positive coming up, first! I'm not quite sure how I'm going to tackle tomorrow either, other than jump right in and hope for the best! Maybe Kara will have whatever "it" was again, out of her system and we'll slide nice and easy through the rest of our week. That would sure be nice.

Week Wrap-Up

We have been on a nice, even keel for the past few days with Kara, nothing major has happened. There is something that she's been having that bothers her once in a while but I can't, for the life of me, figure it out. She's been having really icky diapers a few times a day that literally BURN her bottom, even though she gets changed immediately after. I don't know if it's too much fruit, a certain vegetable, something in a cracker that she's gotten, no clue. It's frustrating but it's minor compared to what we've gone through with her in the past.

We have her one month follow up with the pediatric allergist on Thursday down in St. Cloud. I'm really anxious for this appointment and it's the start of a busy four weeks for appointments for her. It's hard to believe the changes we've gone through in this last month. It's been life changing!!!

One thing that we need to talk to the allergist about is Kara's possible asthma. Her nebs are doing wonders and as much as I'd like to think she does not have it, I'm pretty sure that she does. I'm really hoping that he'll run the other environmental and animal scratch tests too so we can have answers to that before it becomes a problem. He had mentioned that we'll be following up with a gastroenterologist but we're one step ahead and already have those appointments made.

One thing that we did this weekend is tried eggs with Kara. I was SO incredibly nervous to give her them but knew we needed to - if that was something she could tolerate it would open up some more options on feeding my babe. After a negative blood test and scratch test for the egg allergy, I decided it was time I try it but I was still so nervous about an FPIES reaction. I mixed the egg up with some of her formula and scrambled it up, it worked out pretty well! Kara loved it, eating almost the entire egg. I watched her like a hawk for the first few hours waiting for something to happen and nothing did! Yay! She has a new food she can eat!!!

That's about it for what's been going on lately, other than three beautiful days at the lake. We are ready to take on what this week has in store for us and like I said, anxious for Thursday's big appointment. I'll keep you updated! :)

Feeding Issues

When Kara was about 11 1/2 months old I stopped nursing. I was going to keep at it for as long as I could but with summer approaching, still pumping twice a day at work and an active baby that was losing interst, I made the decision to wean her, slowly though since she'd never had formula before. This process went extremely smooth, she never missed it and drank the formula with no problems at all. We were still struggling with getting her to eat though and had a referral in place to go to the feeding clinic at Children's to see if her issues were deeper than we thought. At dinner time one of us would end up in tears, either Kara, or I - it was so frustrating trying to get my baby to eat! She would turn her head in her high chair, cover her mouth and cry. I would be holding her head and hands while trying to literally shove a bite of bananas in her mouth because I KNEW she liked them! Once I would get the taste in her mouth she'd take a few bites and then stop again. We'd once again, resort to the bottle as her nutrition.

The process for getting into the feeding clinic was a long one. I received a packet of info in the mail that I had to fill out about Kara and her history. We had to do a 3 day food diary of everything that she ate and the exact amounts that she consumed along with the behavior with the meal. By the time we got this paperwork it was like something clicked in her. By day two of the food diary she didn't appear to have any feeding difficulties at all. I spoke with her doctor and we decided to hold off on the feeding clinic for now but keep it in mind for down the road if these problems came up again.

From the time Kara was 9 month until 12 months she had dropped from the 60th percentile to the 20th for weight. She had random vomiting episodes and really nasty diapers almost daily. At her 12 month well child checkup she was really sick with a nasty flu bug so everything was put on hold. We needed to get our poor baby healthy before we put her through anymore testing so we had a follow up in 2 weeks. We had a few things in mind to discuss at this appointment - the diarrhea, the vomitting, this harsh cough that she always seemed to have and the big, wet burps that she'd started having. We started discussing her possibly having reflux and went back to that "possible" dairy allergy. It was decided at that time to start her on soy milk and run the RAST test for allergies again before we went to the allergist. Her rast test showed an increase in the dairy levels, the peanut was the same so we now had a positive dairy allergy. We ended up back at the doctors office about 2 weeks after switching to soy because the soy wasn't working at all. Her vomitting had stopped, all the signs of reflux had stopped but in this time she started getting diarrhea again, she would no sooner drink a bottle and it would run right through her. We were told to start Neocate Jr. as her formula so she could get some sort of nutrition and hopefully maintain her weight instead of all this dropping in the charts. Our allergist appointment was scheduled for two days later.

The Gastro Trip

Back in January we made our first visit to the pediatric gastroenterologist at MN Gastro. Kara was almost 8 months old.


It is important to note that prior to Kara's two failed attempts with rice cereal, one failed attempt with oat cereal, and a few times of trying (wheat) biter biscuits, she only ever had breast milk. She was a growing, thriving, chunky baby.


We went through Kara's health history with the gastro doctor, explaining in great detail why we were there and exactly how her reactions went. He told us that she "does not have FPIES. FPIES babies are failing to thrive, Kara is not failing to thrive."


I explained that Kara has been exclusively breast fed other than the three failed food attempts and obviously I wasn't going to keep feeding her food when she pretty much goes into shock each time she's had food! He didn't seem to listen too much to that, he just stressed that she was 8 months old and needed to start eating. I needed to stop nursing her so much and force her to start eating fruits and vegetables even though my poor baby would just scream in her high chair when we'd attempt to feed her. She was extremely delayed in her eating habits, but I didn't blame her one bit. The doctor ran some allergy tests - rice and oat along with peanut, dairy and a few other common allergy foods. We left that appointment with instructions to get her to eat, try her on barley and/or wheat cereal and to return to see him at one year. Needless to say, we left discouraged but our conversation on the way home went something like this. "Well, he said she doesn't have FPIES, and he's the professional. That's a good thing, I guess." We were left with nothing.

A few days later her allergy labs were back. Negative for rice, negative for oat. A possible dairy and peanut allergy but that could mean nothing too. Retest at one year old. Now what?