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.
Showing posts with label FPIES. Show all posts
Showing posts with label FPIES. Show all posts
Tuesday, January 8, 2013
Wednesday, May 30, 2012
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. :)
Friday, February 18, 2011
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!! :)
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!! :)
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.
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.
Monday, May 3, 2010
It's a MYSTERY
Sometimes I feel like a first time Mom all over again with this little, FPIES child of mine. It can be so frustrating.
He is getting bad diaper rash, and mucousy diarrhea again. I think it could be strawberries? But, who really knows. I mean, he eats so many foods now that I just can't pin point it. I try to take things slow and as my previous post mentions, sometimes we don't. But, they start to make such great improvements and then you just go full speed ahead.
Today, he did not really want breakfast or lunch, but then for dinner, he ate this GIGANTIC feast. I swear he ate as much as I did! I am perplexed by these diapers though. I really can't figure them out. Maybe it's the strawberries, maybe not. I'm just tired. Is that bad to say?
I'm tired of studying poo, I'm tired of worrying, I'm tired of my baby boy pointing to the milk carton and whining, and I'm tired of denying him from everything.
It's funny how we have good days and bad huh? Compared to my post a couple of days ago, you'd probably think I was writing about two different kids. But, I'm not.
I'm just writing about one kid that I just can't figure out.
FPIES sucks.
I'm not chickening out of the dairy trial. Nothing is going to stop me from doing it this time!
He is getting bad diaper rash, and mucousy diarrhea again. I think it could be strawberries? But, who really knows. I mean, he eats so many foods now that I just can't pin point it. I try to take things slow and as my previous post mentions, sometimes we don't. But, they start to make such great improvements and then you just go full speed ahead.
Today, he did not really want breakfast or lunch, but then for dinner, he ate this GIGANTIC feast. I swear he ate as much as I did! I am perplexed by these diapers though. I really can't figure them out. Maybe it's the strawberries, maybe not. I'm just tired. Is that bad to say?
I'm tired of studying poo, I'm tired of worrying, I'm tired of my baby boy pointing to the milk carton and whining, and I'm tired of denying him from everything.
It's funny how we have good days and bad huh? Compared to my post a couple of days ago, you'd probably think I was writing about two different kids. But, I'm not.
I'm just writing about one kid that I just can't figure out.
FPIES sucks.
I'm not chickening out of the dairy trial. Nothing is going to stop me from doing it this time!
Friday, April 30, 2010
New Foods Galore
I scheduled a dairy trial for May 18th.
I am sooo excited.I'm to that point where I almost don't know what to do with his food until we pass milk.
I'm so hopeful, and yet so scared of being disappointed. My gut tells me I won't be. That he will pass dairy, and we will blissfully move on to eating cheese, milk, yogurt, etc. and we can stop buying that nasty formula!! Although, he seems to like it OK. I can't stand the smell of it.
Anyway, Kyle has been doing great lately, and we've been kind of crazy with giving him foods. We give him pretty much any fruits now, and don't even bother trialing them. I hope we don't regret that. He has just never reacted to a fruit, so we keep going with that.
Today I gave him Craisins. He didn't go for those.
Oh, and the ham went great! Although, he only liked the organic from Whole Foods. Go figure?
Also, I gave him a ritz cracker today. This will be the first time he has eaten a significant amount of something with soy oil in it. So, I'm not too worried, but I hope it's OK.
Anyway....I'll keep you posted. We're doing good so far.
Plus, he had his 15 month well visit. He is still about 50% for height and weight. So, that is great! Sometimes it doesn't even feel like he is sick. I hope that continues.
Friday, April 2, 2010
Taking a little break...
Please don't leave me!! I love that I have a few followers now. :)
We may not have the internet for the next couple of weeks while we are moving to our new place! YAY! Finally moving out of the in-laws and into a place of our own. It's only been about 4 months, but it always seems like FOREVER when you are living with someone else. No matter how great they might be.
Plus, it seems like we've had some snags since we've been here. Some of which I think are because Kyle is so into everything, and it's harder to control your environment when you are living in someone else's environment!
Anyway, we will be in our new place by April 15th.
On a good note, Kyle was "fired" by the speech pathologist this week. This is GREAT news. It means that he is not showing any delay in his motor skills when it comes to eating. What a difference just a month or two makes, and one or two new safe foods. We have seen drastic improvements in him since introducing wheat and eggs. But, as my previous post mentioned, I'm still unsure what to do next. I know there are some good mamas out there that have good advice.
There is light at the end of the tunnel. He seems more and more "normal" every day. I just have to get up the courage to get him caught up on his immunizations this coming month, and get even MORE courage to trial milk. Oh how I dread that. Seriously. But, if that door gets opened, I will be jumping up and down for joy!!!
Please keep checking back. I may or may not post the next two weeks....but, if I don't, you know where I am.
We may not have the internet for the next couple of weeks while we are moving to our new place! YAY! Finally moving out of the in-laws and into a place of our own. It's only been about 4 months, but it always seems like FOREVER when you are living with someone else. No matter how great they might be.
Plus, it seems like we've had some snags since we've been here. Some of which I think are because Kyle is so into everything, and it's harder to control your environment when you are living in someone else's environment!
Anyway, we will be in our new place by April 15th.
On a good note, Kyle was "fired" by the speech pathologist this week. This is GREAT news. It means that he is not showing any delay in his motor skills when it comes to eating. What a difference just a month or two makes, and one or two new safe foods. We have seen drastic improvements in him since introducing wheat and eggs. But, as my previous post mentioned, I'm still unsure what to do next. I know there are some good mamas out there that have good advice.
There is light at the end of the tunnel. He seems more and more "normal" every day. I just have to get up the courage to get him caught up on his immunizations this coming month, and get even MORE courage to trial milk. Oh how I dread that. Seriously. But, if that door gets opened, I will be jumping up and down for joy!!!
Please keep checking back. I may or may not post the next two weeks....but, if I don't, you know where I am.
Tuesday, March 16, 2010
What next?
I feel like I'm at a standstill. I don't know where to go from here. Kyle seems to be doing good on corn, wheat, and eggs, but we need to trial something else this week. I need to see a nutritionist, I need to get him to learn how to use a sippy cup, and I probably need to move him to a toddler formula. *sigh*
I just don't know where to go next? I don't know what food to try next??? I got a little spooked by his bloody stool episode, so, now I've just been sticking with the staples. Wheat, corn, eggs, fruit.
I think I might try a bean next. Any suggestions?
I just don't know where to go next? I don't know what food to try next??? I got a little spooked by his bloody stool episode, so, now I've just been sticking with the staples. Wheat, corn, eggs, fruit.
I think I might try a bean next. Any suggestions?
Friday, March 12, 2010
Cross-Contamination
I haven't really worried about this issue too much since FPIES is not an anaphylactic IgE allergy, but now, I'm wondering. In my previous post, I posted about the fact that my son had bloody, mucousy stool again....out of the blue.
So, now that it is cleared up, and the episode seems to be over...why can't I let go? I can't. I hate the unknown. I'm that way in any aspect of my life, and I want to know what caused it!!
Lately, he's been eating a lot of Great Harvest Honey Whole Wheat Bread. Love that stuff. So good. Supposedly there are only 5 ingredients. I called my local store and spoke with the manager. He said there are no hidden ingredients, but there is a risk for cross-contamination with oats. Hmmm....so could that be it? I don't know??
I had another FPIES Mom tell me that if it doesn't hit her baby's stomach, then she didn't worry about it too much. Like, if your child picks up an M&M off the floor and pops it into his mouth, but then you get it in time...no harm done. Well, what if it is contaminated (only slightly) before it ever gets to you?
Oats are one of his major triggers. He vomited the very first time he ever ingested them. With rice, it took a little longer for the protein to build up.
It's so frustrating not having answers. What do you think? Does Cross-Contamination matter?
So, now that it is cleared up, and the episode seems to be over...why can't I let go? I can't. I hate the unknown. I'm that way in any aspect of my life, and I want to know what caused it!!
Lately, he's been eating a lot of Great Harvest Honey Whole Wheat Bread. Love that stuff. So good. Supposedly there are only 5 ingredients. I called my local store and spoke with the manager. He said there are no hidden ingredients, but there is a risk for cross-contamination with oats. Hmmm....so could that be it? I don't know??
I had another FPIES Mom tell me that if it doesn't hit her baby's stomach, then she didn't worry about it too much. Like, if your child picks up an M&M off the floor and pops it into his mouth, but then you get it in time...no harm done. Well, what if it is contaminated (only slightly) before it ever gets to you?
Oats are one of his major triggers. He vomited the very first time he ever ingested them. With rice, it took a little longer for the protein to build up.
It's so frustrating not having answers. What do you think? Does Cross-Contamination matter?
Thursday, March 11, 2010
A little setback...OK, a big one.
Kyle had a setback last week.
I stopped nursing him on a Monday, and then by Friday, he had bloody, mucousy stool with extreme diaper rash! Sooo frustrating.
Possible suspects:
1. One sip of coconut milk
2. Fresh strawberries (although he's had jarred before)
3. a buttery green bean my daughter dropped on the floor.
It lasted for about 3 days, and now his stool seems back to normal. HOWEVER, I spoke with his allergist yesterday and he is suggesting waiting 6-12 months for the milk trial. UGH!!
So, not sure what's going to happen. I have to switch him to a toddler formula (more expensive) and meet with a nutritionist now...not covered by insurance.
This kid is going to break the bank before he's 2. But, it's not his fault, poor baby. But, it's a frustrating road. I had kind of hoped that he would try milk for the first time, love it and we would all be happily eating yogurt everyday. I guess so much for wishful thinking!
The trip to the nutritionist will cost $140 for a one hour session. Geez!
I stopped nursing him on a Monday, and then by Friday, he had bloody, mucousy stool with extreme diaper rash! Sooo frustrating.
Possible suspects:
1. One sip of coconut milk
2. Fresh strawberries (although he's had jarred before)
3. a buttery green bean my daughter dropped on the floor.
It lasted for about 3 days, and now his stool seems back to normal. HOWEVER, I spoke with his allergist yesterday and he is suggesting waiting 6-12 months for the milk trial. UGH!!
So, not sure what's going to happen. I have to switch him to a toddler formula (more expensive) and meet with a nutritionist now...not covered by insurance.
This kid is going to break the bank before he's 2. But, it's not his fault, poor baby. But, it's a frustrating road. I had kind of hoped that he would try milk for the first time, love it and we would all be happily eating yogurt everyday. I guess so much for wishful thinking!
The trip to the nutritionist will cost $140 for a one hour session. Geez!
Friday, March 5, 2010
Bye Bye Breastmilk
So, I have officially weaned my son this week.
I have such mixed emotions about it.
He was gradually taking more and more formula and I just decided to take away that final feeding right before bed.
He is doing fine. I am not.
I am engorged, and feel sad. It's weird, because it's been 4 days since I nursed him, and I can now eat all the foods I used to love, and I feel a little lost. Like, a lifestyle I had been living for so long has now ended.
I also feel sad for not nursing, but I know it was the right time for me and him.
I feel like I can say I fought a good fight. I had no dairy/soy for a year and I was vigilant about it, so I could continue doing the best thing for my baby. Breastfeed.
However, why do I feel guilt when I am ready to stop?
I have such mixed emotions about it.
He was gradually taking more and more formula and I just decided to take away that final feeding right before bed.
He is doing fine. I am not.
I am engorged, and feel sad. It's weird, because it's been 4 days since I nursed him, and I can now eat all the foods I used to love, and I feel a little lost. Like, a lifestyle I had been living for so long has now ended.
I also feel sad for not nursing, but I know it was the right time for me and him.
I feel like I can say I fought a good fight. I had no dairy/soy for a year and I was vigilant about it, so I could continue doing the best thing for my baby. Breastfeed.
However, why do I feel guilt when I am ready to stop?
Sunday, February 28, 2010
Wheat and Corn and Eggs...Oh MY!
We have had so much success lately! Kyle has been doing so good on his food trials. He is eating cream of wheat like a champ, and corn (mostly in the form of Kix cereal...which is the best snack for him), and eggs. Oh how he was so excited to eat eggs!
The first time, he ate them it was like he was thinking..."Eggs!! Where have you been all my life??"
In a typical day at 13 months old, he is eating so. much. food. Well, at least for a kid with FPIES he is.
Here is a typical day:
Breakfast
1/4 cup of cream of wheat mixed w/favorite jarred fruit, sometimes a little banana on the side
Lunch
Pasta-Usually around 1/4 of a cup smothered in olive oil and salt and pepper. Yum! We just do the plain old white kind b/c the whole wheat and whole grain I used to buy have oats in them. grrrr. And, we also usually do 1/2 an avocado. Can I tell you how happy it makes me that he loves avocados as much as i do?
Dinner
Egg!! And some delicious Honey Whole Wheat Great Harvest Bread. Love that stuff and it only has 5 ingredients. The kid usually eats a whole egg, and a whole piece of bread.
If you had seen this kid at 8 months when he refused to eat pretty much anything, you would think this was as miraculous as I do. But, then again, I'm a little biased! :)
The first time, he ate them it was like he was thinking..."Eggs!! Where have you been all my life??"
In a typical day at 13 months old, he is eating so. much. food. Well, at least for a kid with FPIES he is.
Here is a typical day:
Breakfast
1/4 cup of cream of wheat mixed w/favorite jarred fruit, sometimes a little banana on the side
Lunch
Pasta-Usually around 1/4 of a cup smothered in olive oil and salt and pepper. Yum! We just do the plain old white kind b/c the whole wheat and whole grain I used to buy have oats in them. grrrr. And, we also usually do 1/2 an avocado. Can I tell you how happy it makes me that he loves avocados as much as i do?
Dinner
Egg!! And some delicious Honey Whole Wheat Great Harvest Bread. Love that stuff and it only has 5 ingredients. The kid usually eats a whole egg, and a whole piece of bread.
If you had seen this kid at 8 months when he refused to eat pretty much anything, you would think this was as miraculous as I do. But, then again, I'm a little biased! :)
Wednesday, February 3, 2010
Diagnosis
Yes....I tend to be a hypochondriac, but I was RIGHT about one thing. Kyle has FPIES.
I finally got him into an allergist today and we have a PLAN OF ACTION!! YAY!
First off, look what my poor baby had to go through today. I felt so bad for him.
It was awful getting him pricked 17 times, but we learned what he is NOT allergic to, so that was very helpful.
Basically, when you think of a typical food allergy it is what is called an IgE reaction. This usually involves rashes, wheezing, throat closing, etc. The allergist wanted to rule out the possibility to any IgE reactions in him. We tested him for a whole bunch of things and everything was negative, which is consistent with FPIES. The testing always comes back negative unless they also have allergies in addition to the FPIES. So, we got the OK to try eggs, and corn, and continue with wheat. Those three things alone will open a whole bunch of possibilities in Kyle's diet. YAY!
However, since he does have FPIES, he will have to stay away from rice and oats for sure until he is 2. The doctor thinks he may have grown out of the dairy and soy allergies, so he wants to trial giving those to him in his office. This will involve me hanging out in a doctor's office for at least 6 hours to make sure there is no reaction to milk or soy, and most likely hooking up to an IV so that if there is a reaction he does not go into shock which can be typical of an FPIES kid. We are going to schedule doing the dairy trial ASAP.
I'm already dreaming about eating dairy again....yes, I'm still nursing!!
Kyle is also seeing a speech pathologist for his gagging issues. We still have a long road ahead of us to get him to swallow without vomiting, but with these new foods we've gotten the OK on, I'm actually a little more excited to see him eat...and most importantly to see him grow!! He hasn't grown since about 9 months old, so we've been super worried. But, today, I'm feeling a little more positive.
I finally got him into an allergist today and we have a PLAN OF ACTION!! YAY!
First off, look what my poor baby had to go through today. I felt so bad for him.
It was awful getting him pricked 17 times, but we learned what he is NOT allergic to, so that was very helpful.
Basically, when you think of a typical food allergy it is what is called an IgE reaction. This usually involves rashes, wheezing, throat closing, etc. The allergist wanted to rule out the possibility to any IgE reactions in him. We tested him for a whole bunch of things and everything was negative, which is consistent with FPIES. The testing always comes back negative unless they also have allergies in addition to the FPIES. So, we got the OK to try eggs, and corn, and continue with wheat. Those three things alone will open a whole bunch of possibilities in Kyle's diet. YAY!
However, since he does have FPIES, he will have to stay away from rice and oats for sure until he is 2. The doctor thinks he may have grown out of the dairy and soy allergies, so he wants to trial giving those to him in his office. This will involve me hanging out in a doctor's office for at least 6 hours to make sure there is no reaction to milk or soy, and most likely hooking up to an IV so that if there is a reaction he does not go into shock which can be typical of an FPIES kid. We are going to schedule doing the dairy trial ASAP.
I'm already dreaming about eating dairy again....yes, I'm still nursing!!
Kyle is also seeing a speech pathologist for his gagging issues. We still have a long road ahead of us to get him to swallow without vomiting, but with these new foods we've gotten the OK on, I'm actually a little more excited to see him eat...and most importantly to see him grow!! He hasn't grown since about 9 months old, so we've been super worried. But, today, I'm feeling a little more positive.
Wednesday, January 13, 2010
My Hunch-FPIES
Today, a friend of a friend contacted me whose son was recently diagnosed with FPIES or Food Protein Induced Enterocolitis Syndrome. This is what I BELIEVE (and I say that strongly) that Kyle has. She had some questions for me and I decided to write down a brief synopsis of what led me to conclude that to maybe help other Moms out there. Here is some of what I wrote to her:
From about 2 months I have cut out the dairy and soy b/c of the symptoms you'll read about on this blog. Before ever introducing rice or any solids, I saw a GI and he just said, yep it's the dairy and soy...keep eliminating them. However, I realized something else was up at about 5 months.
We introduced rice, and he gobbled it up! However that night he was up like every hour crying and inconsolable. I thought, that's weird...maybe it's too early. Talked to GI over the phone and they said that we should try a single grain rice. We did. So, I bought a single grain, organic rice cereal and tried it again. That day he was a crazy kid. For about 8 hours straight, he would not let me put him down. I thought he maybe had an ear infection or something. I literally held him all day while he screamed his head off. I thought...maybe it's the rice again? Then he had a huge nasty diarrhea and was totally fine. We decided that he just wasn't ready and to wait until he was 6 months.
So, we waited until he was 6 months to try grains again. I had read that some kids tolerate oatmeal better, so instead of trying rice right away, we tried oatmeal. We did that and 4 hours later in the middle of being asleep he woke up, and vomited everywhere! I thought...that's crazy, and just not normal. After he threw up, he was totally fine again.
That's when I started doing research on my own. I heard that both rice and oats were not typically a high allergen food, and that is when I ran across FPIES. Everything clicked! While Kyle did not have the severe, going limp reactions, I read that cases could vary in severity. Plus, I have thought...since blood showed up in his stool when I ate dairy and soy and he has never actually ingested it, maybe if he were to eat dairy, he would have the extreme reaction. Because me eating rice and oats does not cause blood in his stool. Thank goodness!
So, I brought this up to my PED at my 6 month well, and I could tell by her reaction she didn't really know what FPIES was. She just kind of brushed that aside and told me to just do fruits and veggies and no grains for a while. That's what we did.
When he was 9 months my husband pushed for me to try rice again. His thinking was that maybe his gut has matured a little and he will now tolerate it. So, against my mother's intuition, I did it. I put him down for a nap and like clockwork at the 4 hour mark he started vomiting in his sleep. I got him up and cleaned up and then he vomited again 2 hours later. Luckily, he never went limp or anything like that and after the second vomiting episode, he was playing normally again. That experience sealed the deal for me on the fact that he has FPIES.
Kyle still has difficulty eating solids. He still has the reflex of thrusting his tongue out when he eats. We are seeing a speech pathologist for FREE through the early childhood development program. They are not sure if they can help us with his issues yet, but they will at least evaluate him in OUR home for free and see if they can help with the gaggin/vomiting and difficulty swallowing. Kyle was on Zantac for a few months to rule out acid reflux. We did not see a change in his eating or night waking. I had an occupational therapist recommend ruling it out to see if that was why he was having aversions to food. We took him off the Zantac b/c I don't think it helped really.
We are all up to date on shots to this point (although he turns 1 on Sunday) and we have had no reactions. However, I am going to delay shots at this point. Mainly, I want to heal this kid's tummy before I continue to put stuff into his system. I will get him up to date eventually, but since he is not in daycare, I'm not too worried about delaying shots.
Kyle has an appointment with a Pediatric Allergist at Primary Children's hospital her in Salt Lake City. Hopefully we will get the "official" diagnosis then, although there is no doubt in my mind that this is what he has. I'm going to try and keep updating on our journey through this thing in the hopes that it will help another Mom out there when they are trying to figure out what is behind all those yucky diapers! :)
From about 2 months I have cut out the dairy and soy b/c of the symptoms you'll read about on this blog. Before ever introducing rice or any solids, I saw a GI and he just said, yep it's the dairy and soy...keep eliminating them. However, I realized something else was up at about 5 months.
We introduced rice, and he gobbled it up! However that night he was up like every hour crying and inconsolable. I thought, that's weird...maybe it's too early. Talked to GI over the phone and they said that we should try a single grain rice. We did. So, I bought a single grain, organic rice cereal and tried it again. That day he was a crazy kid. For about 8 hours straight, he would not let me put him down. I thought he maybe had an ear infection or something. I literally held him all day while he screamed his head off. I thought...maybe it's the rice again? Then he had a huge nasty diarrhea and was totally fine. We decided that he just wasn't ready and to wait until he was 6 months.
So, we waited until he was 6 months to try grains again. I had read that some kids tolerate oatmeal better, so instead of trying rice right away, we tried oatmeal. We did that and 4 hours later in the middle of being asleep he woke up, and vomited everywhere! I thought...that's crazy, and just not normal. After he threw up, he was totally fine again.
That's when I started doing research on my own. I heard that both rice and oats were not typically a high allergen food, and that is when I ran across FPIES. Everything clicked! While Kyle did not have the severe, going limp reactions, I read that cases could vary in severity. Plus, I have thought...since blood showed up in his stool when I ate dairy and soy and he has never actually ingested it, maybe if he were to eat dairy, he would have the extreme reaction. Because me eating rice and oats does not cause blood in his stool. Thank goodness!
So, I brought this up to my PED at my 6 month well, and I could tell by her reaction she didn't really know what FPIES was. She just kind of brushed that aside and told me to just do fruits and veggies and no grains for a while. That's what we did.
When he was 9 months my husband pushed for me to try rice again. His thinking was that maybe his gut has matured a little and he will now tolerate it. So, against my mother's intuition, I did it. I put him down for a nap and like clockwork at the 4 hour mark he started vomiting in his sleep. I got him up and cleaned up and then he vomited again 2 hours later. Luckily, he never went limp or anything like that and after the second vomiting episode, he was playing normally again. That experience sealed the deal for me on the fact that he has FPIES.
Kyle still has difficulty eating solids. He still has the reflex of thrusting his tongue out when he eats. We are seeing a speech pathologist for FREE through the early childhood development program. They are not sure if they can help us with his issues yet, but they will at least evaluate him in OUR home for free and see if they can help with the gaggin/vomiting and difficulty swallowing. Kyle was on Zantac for a few months to rule out acid reflux. We did not see a change in his eating or night waking. I had an occupational therapist recommend ruling it out to see if that was why he was having aversions to food. We took him off the Zantac b/c I don't think it helped really.
We are all up to date on shots to this point (although he turns 1 on Sunday) and we have had no reactions. However, I am going to delay shots at this point. Mainly, I want to heal this kid's tummy before I continue to put stuff into his system. I will get him up to date eventually, but since he is not in daycare, I'm not too worried about delaying shots.
Kyle has an appointment with a Pediatric Allergist at Primary Children's hospital her in Salt Lake City. Hopefully we will get the "official" diagnosis then, although there is no doubt in my mind that this is what he has. I'm going to try and keep updating on our journey through this thing in the hopes that it will help another Mom out there when they are trying to figure out what is behind all those yucky diapers! :)
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