Saturday, August 7, 2010
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
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
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
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
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
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!
Wednesday, May 19, 2010
I'm a little apprehensive still. The doc gave us the OK on "as much dairy as he wants", but I still feel a reaction could happen. Although, I think it's a slim chance.
Kyle drank 50 ml of whole milk over a one hour period. I convinced the doc that he was OK without an IV. This was a risk I was willing to take because Kyle's FPIES reactions have not been that severe in the past. So, after that, it was just waiting. Lots of waiting.
We stayed in the hospital for 6 LOOOONG hours. But, luckily, we were able to walk around, and that entertained Kyle for most of the day. We ate at the cafeteria for lunch, and he even took an hour and a half nap in the office in his stroller.
We got the OK to trial soy and chicken at home....I feel good about that with the way this trial went. I think it's a little overkill to do it in the office every time. Some kids with more severe reactions need it. And, we will do rice/oats in the office when that time comes after Kyle is 2. I think with milk, it was good to do in the office too since we had no idea what the reaction would be.
Kyle's reaction to rice took several days before vomiting started. I don't think that will be the case with milk, but I'm still going to go slow.
However, I gave him a string cheese for lunch. He gobbled it right up! He loved it!!
We are happy. Yogurt, cheese, and milk...here we come! :)
Monday, May 17, 2010
I am so scared for tomorrow.
We are FINALLY doing a milk challenge for Kyle. My sweet baby boy.
Lately, he's been doing so good, we've been giving him lots of new foods, but to get the OK on dairy products would be....well, just amazing!
I am scared of them putting an IV in him, I'm scared that he won't pass the challenge which would be SUPER bad news, and I'm scared of being alone in a doctor's office for 6 hours trying to entertain a 16 month old.
I cannot wait though to give him his first taste of cheese, yogurt and milk. All things which children should not be deprived of!
I am excited for the prospect of no more formula. At $21/can that lasts about 3 days, it's time to get on with it.
I don't know how I'm going to handle it if he doesn't pass though. Please pray for us. This is a big deal for our little family.
Monday, May 3, 2010
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.
I'm not chickening out of the dairy trial. Nothing is going to stop me from doing it this time!
Friday, April 30, 2010
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.
Monday, April 5, 2010
I'll keep you posted.
Friday, April 2, 2010
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
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
It's only been a week and a half, but still....things are weird.
When I go to the grocery store, I still stick with all my dairy free stuff. I have eaten vanilla yogurt and cheddar cheese and didn't care for either. Weird.
I also have not had ice cream. I don't want it. I mean, don't get me wrong, I'm sure I still like that, but I don't crave it, and I don't want it after every meal.
I have enjoyed eating nutella again. YUMMY! And, having the flexibility to eat whatever I want at a restaurant, but it has made me realize something.
Dairy is addictive.
If you read some info. on Dairy and I would suggest this book:
You find that dairy is not the most wonderful thing in the world that we think it is. At least, not in the form we typically eat it here in the US.
This book is great because it not only is a cookbook with great recipes in it, but it also is basically a resource book on everything dairy, and everything about how to live dairy free. I love it.
Going dairy/soy free has also changed the way my family eats...in a good way. We cook more, and we eat less fat. And, I'm not craving pizza. Seriously.
In fact, I recently ordered this book (still haven't received it yet) off of Amazon that I'm really excited about....a VEGAN cookbook. Crazy. A year ago, I never would have entertained the thought.
I don't plan on becoming Vegan or Vegetarian, but my eyes have been opened and I'm going to stick with some of the changes I've made. No more cheese addiction for me. If you're just starting out with eliminating dairy...trust me, it does get easier. I did it for a year. I know.
Visit me at my other blog where you will find vegetarian cuisine and some dairy free recipes: The Cheating Vegetarian
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
I stopped nursing him on a Monday, and then by Friday, he had bloody, mucousy stool with extreme diaper rash! Sooo frustrating.
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
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
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:
1/4 cup of cream of wheat mixed w/favorite jarred fruit, sometimes a little banana on the side
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?
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
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
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! :)