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!! :)
Friday, February 18, 2011
Saturday, August 7, 2010
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.
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.
Thursday, July 8, 2010
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.
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.
Monday, June 28, 2010
Moving On....
My life has been crazy hectic lately. I've neglected the internet, and I actually didn't miss it too much, but I do feel strongly about this blog and keeping it updated to help other Moms out there.
Kyle is doing GREAT! We successfully passed milk the second time. He now has all organic, whole milk in his bottles. This makes me happy, and will hopefully ease the financial strain a little from all that formula! He likes cheese (sort of) and does not like yogurt. My daughter used to DEVOUR the YoBaby stuff, but he won't touch it. Still trying.....
Now, we feel a lot more comfortable with things. We've been re-introducing things he had in the past that we thought were problem foods (not a full blown FPIES reaction, but other weird things going on) and he's been doing fine with those too. Like green beans, for example.
This week we are trialing Soy Protein. I will be glad if he passes this one. We are going to do it the same way we did milk, just a little everyday for a week. We are going to use soy milk to trial. I'll let you know how it goes.
I'm starting to feel like we should just go full steam ahead with everything but rice and oats, but I also don't want to jinx things. It's a constant argument in our house about when/how long, etc. to introduce things. I'm always erring on the side of caution, and my husband always wants to just go for it!
I'll be back in a week and let you know how it goes!
Kyle is doing GREAT! We successfully passed milk the second time. He now has all organic, whole milk in his bottles. This makes me happy, and will hopefully ease the financial strain a little from all that formula! He likes cheese (sort of) and does not like yogurt. My daughter used to DEVOUR the YoBaby stuff, but he won't touch it. Still trying.....
Now, we feel a lot more comfortable with things. We've been re-introducing things he had in the past that we thought were problem foods (not a full blown FPIES reaction, but other weird things going on) and he's been doing fine with those too. Like green beans, for example.
This week we are trialing Soy Protein. I will be glad if he passes this one. We are going to do it the same way we did milk, just a little everyday for a week. We are going to use soy milk to trial. I'll let you know how it goes.
I'm starting to feel like we should just go full steam ahead with everything but rice and oats, but I also don't want to jinx things. It's a constant argument in our house about when/how long, etc. to introduce things. I'm always erring on the side of caution, and my husband always wants to just go for it!
I'll be back in a week and let you know how it goes!
Monday, June 7, 2010
Milk trial #2
We have started milk again this week after our two week break, per the allergist's suggestion.
So far, no problems. I am going a lot slower. 4 oz. of milk per day for a week before we move on to cheese, yogurt, etc. But, he's doing great!
I got a stomach bug about 5 days after K was vomiting, so I'm pretty sure that it was NOT a delayed FPIES reaction, and simply bad timing. Really bad timing.
So, hopefully I will be reporting no reactions in another few days and I can give this baby some yogurt and cheese again.
So far, no problems. I am going a lot slower. 4 oz. of milk per day for a week before we move on to cheese, yogurt, etc. But, he's doing great!
I got a stomach bug about 5 days after K was vomiting, so I'm pretty sure that it was NOT a delayed FPIES reaction, and simply bad timing. Really bad timing.
So, hopefully I will be reporting no reactions in another few days and I can give this baby some yogurt and cheese again.
Monday, May 24, 2010
Update and Article
Kyle seems to be doing better today. Although, he is still not really eating anything. Poor baby. I hate this.
I talked to his allergist today who was out of the office. He said to wait 2 weeks to give him dairy again, but to call him first so we can talk about it. He also feels it's probably a stomach bug because he was running a fever. I guess I can live with waiting two more weeks, but I can't help but get nervous about more vomiting again!
I think this next time I give him dairy, I'm going to do it in a more controlled way. Like, trying to get Kyle to drink x number of ounces of just whole milk for a week before we call it "safe". I don't believe giving him as much as he wanted was the right way to go. Hopefully if I control the amount a little bit more, and he's still doing good after a week, then maybe we can go on and introduce something else like cheese, or yogurt.
Anyway, I hope this link will work, here's another article that discusses non IgE allergies. Not a ton of new information here, but it at least calls for an awakening amongst doctors to recognize this, trust Moms that they know what they're talking about, and says insurance companies need to start paying for the formula for these little ones. Amen.
Go here to find the article.
I talked to his allergist today who was out of the office. He said to wait 2 weeks to give him dairy again, but to call him first so we can talk about it. He also feels it's probably a stomach bug because he was running a fever. I guess I can live with waiting two more weeks, but I can't help but get nervous about more vomiting again!
I think this next time I give him dairy, I'm going to do it in a more controlled way. Like, trying to get Kyle to drink x number of ounces of just whole milk for a week before we call it "safe". I don't believe giving him as much as he wanted was the right way to go. Hopefully if I control the amount a little bit more, and he's still doing good after a week, then maybe we can go on and introduce something else like cheese, or yogurt.
Anyway, I hope this link will work, here's another article that discusses non IgE allergies. Not a ton of new information here, but it at least calls for an awakening amongst doctors to recognize this, trust Moms that they know what they're talking about, and says insurance companies need to start paying for the formula for these little ones. Amen.
Go here to find the article.
Sunday, May 23, 2010
Possible Reaction?
I'm really TRYING to remain positive and calm, but I'm really stressed too.
As you know, we trialed Dairy for the first time in the hospital on Tuesday (the 18th). DS only had 50 ml of whole milk that day. We stuck around for 6 hours and nothing happened. When we left, I asked the allergist...so what now? How do we proceed? He said, "Give him as much as he wants starting tomorrow" I responded, "Really? As much as he wants?" And he said, yes.
So, although I had my doubts, we started to offer him more dairy the next day. He had a string cheese....still nothing. Then, some milk in his bottle instead of formula, nothing. So, the next day, we tried yogurt. Still doing great. No signs of fussiness, loose stool, or not sleeping well. He was doing great!
Fast forward to day 5, which was yesterday (Saturday) morning. He was fussy as soon as he woke up, but had slept through the night great. I fed him his normal breakfast of cream of wheat with fruit. Waited about 45 minutes to give him a bottle of milk. He only drank about 4 oz. Still kind of fussy, walked into the other room, and projectile vomited all over the floor!!! I immediately thought, crap. My husband said not to worry, maybe he just ate to much. We cleaned him up, but he was extremely fussy after that. Wanting to be held non-stop, and not a happy guy. About 2 hours later, we decided to try and give him a very light lunch. He ate a little bit of ham and some fruit, but was obviously tired and not wanting to eat. Still fussy. So, we put him down for his nap with his formula. He wouldn't drink it. Then, after being in his crib just a few minutes, he vomited everything up again. Then, he did fine the rest of the day. Still very fussy, but no more vomiting. We obviously stopped all dairy that morning. Then, he ate a TINY bit of dinner, drank his whole bottle at bedtime, and went to bed. When he woke up in the morning, I went to get him and he had vomited in his sleep at some point.
It's the weekend, so I can't talk to the allergist, but I'm hoping this is a stomach bug. However, I just don't think so. My gut tells me it is the milk. I know it seems crazy when it didn't start until day 5, but Kyle's first reaction to rice was similar. Keep us in your prayers, and I'll keep you posted!
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