Reaction

We took a break from the chicken and went back to Kara's two safe meats - beef and ham. She had beef for lunch yesterday in her spaghetti and then ham for supper last night, along with a little bit more beef when she was at Grandma and Grandpa's house. I packed her safe little meal, as I always do when we leave the house with her. We were taking her big sister out to her favorite pizza joint for going to bed like a big girl all week. Leaving Kara with Grandma and Grandpa would be more fun for both girls and we wouldn't have to worry about keeping Kara out of the pizza!

We got back to pick up Kara, she ate really well, all of the dinner we sent with - ham, green beans and some Kara-safe oyster crackers - and then she wanted more so they gave her a Kara-safe hotdog. While we were still there she had a very icky, questionable diaper. What the heck? We went over with his parents everything she had eaten through the day and couldn't figure it out. Oh well, it's not unusual for her to have off symptoms lately. I started thinking back to how I thought she was having a build reaction to the chicken, then reminding myself she hadn't had it in 2 days.

We packed up to get home for bedtime, to stick with our routine that we had going so well. Both girls were in bed and Brian and I were watching TV. We heard this horrible scream, he muted the TV as I jumped up to run upstairs. He asked if he should come and I yelled "follow!" Deja Vu struck hard. The screaming, the foul smell coming from her bedroom, I knew what was happening before I even got in there. We found her sitting in her crib, covered in vomit. I grabbed her and went to the bathroom to get her cleaned up while Brian stripped the crib, the entire time wondering what the heck she was having a reaction to. Once I got her settled down and cleaned up we went down to snuggle, to make sure she was ok. Her tummy was one big knot and she had a few really big, questionable burps. No more vomiting occurred though. (Very strangely, I forgot about our ER plan - the letter we have in place if she does have a reaction.) I think she did ok with this one because she only vomited the one time. She took a few sips of water and snuggled in while he called his parents to go over everything again.

We have no real idea what the heck caused this reaction. It wasn't chicken because it's been a few days since having it. It was beans, ham or beef unless she got a hold of something she couldn't have, which I kind of doubt - she's SO good at picking things off the floor if she finds something, and bringing it to me. I can't imagine what the heck happened. It's been over a year since her last vomiting reaction. I want to say it was last December that she had the oat reaction.

Today's diet? Kix and Neocate so far. Can't go wrong with that - I'm not ready to give her anything after what happened last night!

Allergist Appointment # 2

I don't even know where to start this after our appointment today. I feel like we are moving backwards in our journey with Kara.

We talked on our way to St. Cloud today and added to our list of questions that we had for the doctor. I was incredibly nervous for this appointment, probably because I felt like we were going to come home with no more knowledge than we already had.

Addressing Kara's many episodes of diarrhea and "nasty" diapers: let's test her for more foods than we've already tested her for by doing the skin prick test. He took the can of vegetable soup that I brought (the one she possible broke out in hives from), reviewed that and tested her for potato, beans, peas, carrots, along with many more. They all came up negative for an IgE allergy. More on the allergy test in another post - that deserves a post of it's own...

Addressing the possible asthma: skin prick tests for molds, dusts, cats, dogs, and a few grasses, I believe. All came up negative. He said at this point we can discontinue the pulmicort nebs and just use the albuterol as needed. We'll follow up with this, especially if it seems that we're needing the albuterol. He wants to see what her coughing is doing and we're taking things one thing at a time. We went over my seasonal and animal allergies and the fact that Kara was hospitalized with RSV in February and figure that she WILL end up with them but first things first, we need to get this digestive stuff figured out. For now we're leaving the asthma dx as a possible one. Whew.

We went over the few "reactions" that she's had that we are questioning blaming chicken on and we're trying to get to the bottom of all of this. What he decided is that we are going to remove a few more foods from her diet. She is now restricted from chicken, peas, beans and other legumes. Peas just happen to be her favorite vegetable. We also have to restrict sorbitol, a sweetener found in some foods as this is known to cause diarrhea in people. He also said he wanted to restrict barley and I gasped. Barley is the ONE food that Kara has been eating since our first trip to the gastro, last January. She's tolerated it just fine, to our knowledge, and no FPIES reactions have occured from this, from what I've been able to tell. I stopped him and explained all of this and he decided we could keep going with the barley.

I asked about skin patch testing and he said no, they don't do that there. Besides, Kara's eczema gets so bad that it probably wouldn't be accurate. It didn't sound like he was real fond of this test. I also asked about food challenges, he said these are done in the clinic, around 2 or 3 years. I asked if he thought gastro would still be a good idea and he said definitely, it would be good to get another opinion. (good thing, because I have appointments with 2 different gastros still!)

So, we left there with a bunch of "no's" but we are restricting more. I don't feel like we are headed in the right direction, but this is the name of the game, I guess. It's all trial and error to see what works. There's no real medical "test" that can be run for a positive with FPIES. It just adds to my frustrations. Now we just sit and wait again. Wait for the appointment in the cities, and hope that we don't get the same amount of nothing again. I want to know if there are ANY doctors in the state of MN that KNOW about FPIES. Like, really KNOW about it. I may be on the phone all day long tomorrow if I have to, to get some answers.

Just When Things Were Going OK...

As we were getting ready for our busy Monday morning, I had to stop and change a diaper right before we walked out the door. Typical, I pretty much come to expect this each and every morning. As I was walking Kara downstairs to daycare I got a whiff of a really foul smell, only to find that she had another icky diaper. I gave the report of how her bottom is raw but she seemed to be OK and went on with my day. Brian called me mid morning to let me know that he talked to our daycare gal and she'd had a few more icky ones. I brushed it off as nothing and went about my busy day. Shortly after that something clicked and I remembered how quickly my poor baby gets dehydrated from these episodes and what happens when that's the case. I panicked and called daycare myself only to hear Kara crying in the background and was told that she just had another one. Her bottom is AWFUL. I assured her that I'd be there right away to get her, the sound of Kara crying and the thoughts of IV sticks, fluids, the whole works scared me to death. I quick gave out a report to a co-worker, nearly teary eyed and was running out of there to get my poor baby.

Kara was fine when I got there so that relieved me some and I realized how much I overreacted once I got home only to have her cautiously walking across the room, chit-chatting with herself along the way. She went down for a good nap and I was thinking maybe it was a fluke thing. She just woke up now and is having her bottle, but we did have another icky diaper. Damn.

I have a call in to her doctor to see if/when we should start her on medication. I know she can have some immodium and/or zofran but it's only to be used in extreme cases. I don't quite know what extreme is at this point, we've been through it all.

Wish us luck!

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! :)

Walking!

My 14 month old baby is finally starting to walk!

Kara was early at rolling over, early at crawling so of course I thought she was going to be an early walker! Her sister walked at 10 months and she beat her at everything else! Kara would be so close to walking and then get sick where she'd just lay on one of us for 3 days and then cling to us for a week after her sickness. It has been one set back after another for her. In the last few days she's improved more and more by the day. Tonight we were amazed as she'd stand right up in the middle of the room, take a few steps and carefully sit back down. She's making progress so as long as she stays somewhat healthy, we should be there soon!

Another Reaction?

Brian's Grandma made me a pot of soup for Kara after the possible hives reaction to the Cambells Vegetable. All it has in it is peas, carrots, celery, potatos and a little bit of chicken, along with chicken broth. I froze some and she's had some for supper the last two nights. I was really thinking this was going to be safe for her but the last two nights Kara has been really fussy starting around 7:00 which would be two hours after eating supper. This fussiness has lasted about 2-3 hours and both nights was followed by a nasty diaper. I'm thinking this is another FPIES reaction and all I can figure out is that it may be from the chicken. She had a minimal amount - 3 little bites, maybe and hadn't really had chicken before since all the baby food chicken had rice flour in it. I don't know what our next step is, other than wait for our specialist appointments.

Tonight I put her in the high chair for supper and put her plate on the tray. She looked at it, closed her eyes and started shaking her head, like "no way am I going to eat!" She nibbled a few bites of bread and a few bites of fruit but flat out refused everythign else. Before bed she took a bottle and went to bed just fine, no tummy aches. I'm sure we'll be up at 2 a.m. with a starving baby!

Appointment

Last Thursday Kara had an appointment with our family doctor again. This was an appointment for the hives but also for us to develop a "plan" for Kara's care, on more of an emergency basis. Basically, if we end up bringing Kara to the ER because of a reaction, she's going to need IV fluids immediately. Kara is EXTREMELY prone to dehydration and has horrible veins, especially when it gets to that point. In the past, we've been told to come back in if she doesn't have x amount of wet diapers in x hours, doesn't take anything in, or can't keep anything down (or up!). We've gone through too many IV attempts holding our screaming baby down while too many people have attempted. We've had nurses, paramedics, anesthetists, and ultrasound guidance with minimal results. We are going to have orders at the hospital accessible to the nurses and doctors explaining Kara's FPIES and what her treatment needs to be. This should eliminate the stress of what we've had to go through in the past.

Also at this appointment we talked about this cough that Kara has had. I thought it started to go away once we eliminated dairy from Kara's diet but it didn't. It is now thought that she may/probably has asthma on top of everything else. Asthma and allergies run hand in hand and Kara was hospitalized with RSV last winter which puts her at even more risk of asthma. We've now started her on nebulizer treatments - two different meds twice a day. We have our follow up with the allergist next Thursday and we'll discuss this more at that time as well as request to have her tested for animal allergies and MN grasses and trees. I'm allergic to all animals and everything that grows outside so this wouldn't surprise me if she has this on top of everything else.

The other issue we addressed was Kara's weight gain, or lack of. She definitely seems to have an appetite but doesn't seem to be gaining any weight. She's stayed at 20 pounds for what seems like months now. We have her 15 month well child check in one month so we are hoping to see some change in that time.

The last issue went along with the weight problems. She just doesn't seem to be right digestively yet, despite the change in diet and new formula. We're not sure what this means but we have an appointment with a pediatric gastroenterologist again in August. We talked about how she'll probably need some additional testing done because it's felt that maybe she has more going on than what we've previously thought. We're prepared for testing, as we want answers but it's so hard to take all this in. We left this appointment quiet, not sure what to think, not sure what to share. We have a busy next few weeks.

Hives!

Kara woke up with hives one day last week. I thought back to everything she had eaten and been around and came up with nothing. I had to call down to the allergist for some questions on the formula so I left messages with them about these hives as well as her family doctor. We had to keep a close eye on her and give her benedryl. I remembered 2 days later, after feeding her leftovers from Sunday night for supper that the Campbell's Vegetable Soup was something new that I had tried for the first time. Later that night her hives started again. I've gone over this ingredient list again and again and can't figure out what it was. At the advice of our family doctor we will be bringing this can to St. Cloud with us to have the allergist look at. We may never know what caused this, maybe it wasn't the soup but it sure was strange. She's never had a hives reaction before. Anything digestive wouldn't have surprised me any and she breaks out in eczema fairly often as well. We had her at the clinic on Thursday and she still had them but seems to be all cleared up now. The Epi-Pen is getting closer and closer to being a part of our lives every day!

An Answer!

On July 1st, we finally managed to get some answers!

Kara saw a pediatric allergist at St. Cloud CentraCare Specialty Center. My Mom came with Kara and I to this appointment because Brian was unable to. The doctor we saw was the answer to our prayers after our experience at MN Gastro, he was an older gentleman who came in the room and LISTENED to us. I explained how we went to see the gastro doctor in January and everything that we went through there. Kara played on the floor as he listened to everything of what we've gone through with Kara. Kara sat so nice as he checked her all over and asked us additional questions. He decided that he wanted to do the scratch allergy test on her back for rice, oat, dairy, soy, peanut, egg, and a few others. I think Kara had 12 pokes on her back total. She had one nice big hive other than the control, only to the dairy. No rice, no oat, once again. Huh.

The doctor came back in after the testing was done and told us he believes that Kara has two things going on. One is a definate dairy allergy. The other is FPIES. We finally had a diagnosis, and one that we had been questioning for SIX months, since our gastro doctor told us that she DIDN'T have it. We went over a plan of what we could and couldn't give her. We definitely needed to stay away from all products with rice and oat in them as the reactions that she'd had put her into shock. As for the soy and dairy we were OK to do trial and error to see the severity hoping she could handle foods with lower amounts of dairy and soy in them. We were told that the epi pens are going to be no good for the kind of reactions that she has and if she were to have an FPIES reaction, she'd need IV fluids before she got too dehydrated. We briefly talked about Kara being on Neocate and he thought she could maybe handle Nutramigen so they sent us home with samples of that to try.

I left this appointment breathing a HUGE sigh of relief. It was so amazing to finally have some answers to what has been going on with my baby. I was overjoyed yet I had to remind myself that what we are dealing with is very serious. At the same time I was angry. We had six months of struggling with Kara, all because the doctor we had seen in January didn't listen to us.