Food Allergy Rant....

As previously posted on my other blog.


Sometimes I wonder (feel sorry for myself) why I had to have kids with so many food allergy issues. But, then I get a reality check. It really could be a LOT worse. I know that there are lots of families suffering with kids a whole lot sicker than mine. And, for the most part, I'm blessed with 3 healthy children.

But, last night was a rough night. And, this is MY blog, so it's going to be a pity party for a minute. We were up all night long with Chandler. And, I'm feeling very defeated. He had just started sleeping through the night. We had 5 glorious days of sleeping through the night. And, you see, we started our egg trial this week with him after we found out his IgE allergy test for eggs came back negative. Although Milk was supposedly positive. (what?) But, you would think good news right for the eggs? But, I can't tell you how frustrating it is to have food allergy issues that are so undefined. That aren't visible by a skin prick test. That are so hard to figure out. Sure, IgE allergies are awful. I know that. But, so is trying to figure out what is making your baby hurt like one huge complicated puzzle when there is no test. There is no simple solution. Lots of times, you just have to go with your gut. And, hope you're right.

But, then you have to defend yourself to judgmental people. Like, people that judge you because your child is still waking up in the middle of the night. When you try to gently remind them (when you really want to scream at them) that your child is different. He isn't on normal formula, he doesn't get that many calories during the day because he can't eat anything he wants like a normal 1 year old. You know they are rolling their eyes at what you're saying, so then you feel alone. Like no one gets it.

I was so hopeful that at 1 year we could just introduce milk, get him off this expensive formula, and all would be right with the world. Instead, he is IgE to milk (although not very severe). Eggs are obviously giving him issues (he is waking up screaming from a sound sleep again....feels all too familiar. Not wanting to eat foods he loves. Refluxing after MONTHS of not doing any of these things), and I have a sinking feeling in my gut that the GI is our next stop.

So, just try and be understanding. Don't tell me what I should be doing to let my baby cry it out, or stop giving him a bottle in the middle of the night. Because what you're saying basically is that it's all my fault. That if I want to get up with a baby in the middle of the night then it's my problem.

Well, it IS my problem. But, let me ask you this. If your child was sick with a fever, would you be taking care of him in the middle of the night? What if he had a horrible cold and just wanted to be held? You would probably do that too. Well, my baby has issues of his own. Food. Normal food that YOUR baby can eat, my baby can't. Because it makes him miserable. And you better believe that if he is feeling miserable in the middle of the night and all he wants is his momma and a bottle, then I am going to help him feel better. Even if it means sacrificing my own sleep. My own sanity. Even if it means he doesn't sleep through the night until he's 18 months old. Ah hum. Yes, I'm talking about you, Kyle.

OK, off my soap box for now.

Letting Go of Breastfeeding

I wrote a blog post over here about my decision to finally give up breastfeeding. My baby is so super  happy, and after many tears, so am I. Our next step will be trialing solids. But, for now, I'm enjoying a happy, healthy baby who is catching up on his sleep and his weight. :)

FPIES Baby #2?

I kind of thought I was done with this blog. But, I'm afraid to say I've been getting this nagging feeling to come back and document what I've been going through with my new little guy.

On December 7, 2012, I had my second sweet baby boy. Making me a proud mama of 3 kids. My FPIES baby is now 3 years old, and completely FPIES free. Although, he definitely has a sensitive tummy still. So, FPIES has kind of been a distant memory for me for the past year. I didn't worry about it that much.

Now that I have another baby things have seemed all too familiar. Chandler is now 4 months old, but these 4 months have been so incredibly difficult. When he was just a couple of weeks old, I started noticing the same issues I had with Kyle. Mucousy stool. Occasional blood. I was in denial. I wanted to pretend it wasn't there, because I knew that I would probably have to cut out dairy and soy all over again. When I went to his 2 month well visit (yes, I put it off that long), I begged the pediatrician to tell me it was something OTHER than a food intolerance. But, I'm sure you already know what he said. Cut out dairy and soy. So, I did. In addition to the yucky stool, we were dealing with Colic this time around and acid reflux. So, my little guy was a mess. I cut out dairy and soy and did not see improvement. Called my pediatrician and he suggested to cut out nuts, eggs, and corn. I also decided on my own to cut out chocolate (because I love it and eat a lot of it). The good news was that the reflux seemed to get better. But, the stool has never really improved.

Over the past four months, the sleep deprivation and fussiness have been the hardest. I wouldn't worry so much if it was just the yucky stool, but to have all the symptoms combined have been hard. Especially when trying to take care of 3 kids now.

The good news is that I have pinpointed that eggs are for sure a reactor food for my little guy. The week I tried to add them back into my diet, we had severe reflux and night wakings again. But, even with everything else I've cut out, I tested his stool for blood today (thanks to another fellow FPIES mommy who had access to medical test strips) and it tested positive. So discouraging.

A couple of weeks ago, through a lot of prayer, and thought, I made the decision that it might be time to think about giving up breastfeeding for the sake of my sanity and our family. Worrying about all of this for a second time has taken its toll on me. I feel like I am not being the best Mom I can be to my kids with all the stress of this. My hope was that if I could get him on a formula that he could tolerate and gain weight on, then I might have some of the stress lifted from me with all the constant worrying about what I'm eating him that's hurting him. I felt a sense of peace with that decision, which surprised me because I am so PRO breastfeeding and did it so long with Kyle.

But, the bad news is that I have had no success switching him to formula. The two kinds (Nutramigen and Elecare) I've tried he hates. He screams his head off, arches his back, and when he sees that bottle coming (or smells it...this stuff smells nasty) he is instantly mad. He has barely ingested a drop of either one.

So, what's a Mom to do? I go back and forth. The time is going by quickly. Some days, I think, I can do this another 8 months. But, I worry too. He is my smallest baby by far, and to think that I'm still eating something everyday that might be hurting him is hard for me. But, my pediatrician seems to think that I shouldn't worry too much about it. Yet, he is supportive either way.

Chandler seems much happier than in those first couple of months. He smiles at everyone and it makes my day to see this kid smile. He seems generally happy, too. Yet, he doesn't sleep good, and lately, I swear he doesn't seem interested in breastfeeding all that much.

I have his 4 month well visit this week. We will see what the doc says. I dread when we introduce solids with this kid. I'm going to be a wreck.

Oh Happy Day!!!

I've been meaning to update this blog forever. Life marches on. I'm expecting baby #3, and have been thinking a lot lately of my experiences with my little FPIES baby. Oh how I hope that nothing like that happens again, but if it does, I know how to handle it, and I'm grateful for everything I learned!

From time to time I get contacted by another FPIES mommy. I did today. I love responding to those emails because someone did it for me when I was in the thick of it. It's nice for Moms to share knowledge too that sometimes eludes the doctors!

Kyle is doing fantastic. He is 2 1/2 and is such a fun little guy. We have trialed both rice and oats at separate times, of course, and we made the decision to do it at home since his reactions were never life threatening in the past. It took a while for us to get there, but he has passed both, and is symptom free!! Hallelujah right?

I will say that I do believe these children have sensitive stomachs. I'm afraid he always will. I still inspect poop when it is yucky, and it frequently is. We still give probiotics to him on a regular basis. He has diarrhea more often than most kids, but he eats anything and everything he wants. Every once in a while when we are out to eat, I think to myself, "Thank goodness we can order..whatever and I don't have to ask any questions".

I am looking forward to having another baby around Thanksgiving time, and it's another boy. I worry about all this food intolerance stuff. I think, "could I go through all of this again?" and the answer is Yes. But, do I want to? No. But, thank goodness I've been there, done that, so to speak, and know that I could tackle it again if necessary. Let's just hope it won't be.

Please keep emails coming. I love hearing from anyone going through this. And, just know, it won't last forever. That's the positive part about living with FPIES.

It's been a while....

If anyone is still reading, I'm still around.

I don't frequent the FPIES babycenter board anymore, but FPIES is still a part of our lives. I hope that very soon it won't be.

My son turned two last month. We decided to trial oats at home. We got to day two with no problems, and then BAM! a double ear infection.

Remember my experience with trialing milk the first time? What are the odds he'd get sick again with something on the same week of the trial, again!?

So, the good news is that he has most likely outgrown oats because there were no signs at all of GI issues. YAY! But, we have to re-do the trial. Probably starting next week. We want to trial it for 2 weeks before calling it safe since this was one of his trigger foods! Once he passes that, we'll probably wait a couple of months more, and trial rice once it has been 18 months since his last reaction with it.

So, wish us luck! I feel like this journey is finally ending. So hang in there to all of you that can't feel that way just yet.

Oh, and another great development-He has a veggie he loves and eats! Green Beans!! :)

LIfe with FPIES gets easier.

Kyle is now 18 months old, and we are in a whole new world with him lately.

Sometimes I think to myself, did I make it all up? Was he really THAT sick? But, luckily, I have this blog to remind me.

However, I don't know how much I'll be blogging these days about FPIES anyway. Our lives have changed a lot with Kyle.

He drinks milk, and can eat soy. Those two things alone have opened up a lot of doors.

We started trialing chicken this week at home, and no reactions whatsoever.

In fact, we don't really "trial" anymore. My husband and I came to a decision a few weeks ago that we were going to go ahead with pretty much every food but rice and oats. However, we had a slip up the other day where he accidentally ate some oats, and again...nothing. So I'm wondering if he is already outgrowing FPIES. I hope so. However, we will do an "official" trial of those two foods...rice and oats when the time comes (18 months after his last reaction, which was when he was 9 months old). He did only have one bite of the oatmeal, yet I went semi crazy for a few moments. I started crying, imagining the worst, and when nothing happened, I thought, "did I make this whole thing up?"

But, I know I didn't. I remember. It used to be so hard. I cried often. Almost daily some days. From the lack of sleep, from the constant vomiting, from the worry of not knowing what the heck was going on, and why my baby couldn't even swallow the simplest food.

But, there is hope for all you Moms out there that are in the thick of it. Lots of hope. I have nieces who will never outgrow their food allergies, and most of our kids will. That's amazing. And, in just a few months, you may look back like me, and think, did that all really happen?

I know though that there are more severe cases than ours. We had a pretty mild case it seems. But, it's difficult no matter what. When you want to feed your baby. You want to do the simplest thing....feed. your. baby. And it is the biggest obstacle.

Kyle jumped on the charts at his last well visit. He is growing fast now that he can eat more foods. He seems to be a whole new kid. So, no matter what stage you're in. It will get easier. That is one thing that we have to hold onto as Moms of FPIES kids.

I would love to answer questions from any of you readers...please email me. Luckily, I won't be blogging as often anymore. And, as much as I've enjoyed it, I'm grateful for that.

Flashback

I had a flashback a couple of nights ago to the FPIES days.

We are getting way more relaxed about the foods we give Kyle now that he has passed dairy and soy. So, we were eating some nachos the other night, and my husband gave him a bite. I kind of gave him the "I don't think you should be doing that" eye and he still went for it. On the chip was a tomato, a black bean, and some cheese, of course.

That night Kyle would not settle to go to sleep. Then about 10:30 pm he woke up screaming for a good half hour. He was arching his back, not wanting to be held, but not wanting to be put down. My husband turned to me and said, "I've never seen him like this" I responded...YES YOU HAVE! Remember??? That night a few months ago we gave him one single pea at dinner? And then later, when we weren't in the thick of it, I reminded him of our previous FPIES days where he was always restless at night, with some sort of tummy ache.

We've been doing so good, that I think we had forgotten that there is anything "wrong" with him.

I am still puzzled as to what it was. I grilled my husband afterward...."do you know exactly what was swallowed?" "did he swallow a tomato, a black bean, what????"

That is the frustrating part to me, the not knowing. If you don't do one ingredient at a time, and then something DOES go wrong, you'll never know really.

All that happened was basically a lot of gasiness, and then he finally settled back down to sleep. I'm wondering if he just experienced his first episode of gas from a good old gas producing food like beans, or if maybe he has a problem with them?

As far as the soy, we are saying he passed, but we didn't do the greatest challenge known to man. We got him to ingest maybe 1 oz. per day for a week of soy milk (which he did not care for), so we are calling it good for now. That might be a little dangerous, but I honestly feel it is going to be OK. Now, we just need to give him some other things that have soy protein as an ingredient. But, I think we are in the clear.

He seems totally fine now.