We began a carrot trial yesterday. FAIL. About 2 hours after eating a teaspoon of the homemade carrot puree, she had horrible tummy cramps. My poor little girl was in so much pain, I could barely hold myself together. I was holding her on my hip and she was seriously arching her back to the point where her head was practically touching her feet (think gymnastics and making a bridge). After a rough night of sleep, she did ok today. She only slept a total of 25 mins all day and was more irritable than normal. By bedtime tonight, she seemed to be back to herself.
After her corn fail last week, I'm sure there was a lot of inflammation in her tummy. We could have started a new trial too early, as some kids take up to 14 days to return to baseline. The most important thing right now is to get her back to baseline, so we will stick to her 2 safe foods (pears, sweet potatoes) for at least a week, probably two weeks.
I'm thinking about making an appt with the pediatric GI again (this time one that is familiar with FPIES) to see what he recommends...maybe doing an endoscopy to rule out anything else.
I'm feeling very overwhelmed with all of this right now. Someone posted a link to a corn allergen list and it pushed me over the edge... check it out. http://www.cornallergens.com/list/corn-allergen-list.php Looking at this list (half of the things I can't even pronounce) makes me wonder how I am ever going to find her food to eat. If she can't have anything that's on that list, we are going to be pretty limited. As exhausting as all of this is, I'm really trying to stay positive...
Tuesday, December 28, 2010
Thursday, December 23, 2010
Merry Christmas!!
I love Christmas--the music, the goodies, the family gatherings. It's just such a great time of year and I can't wait! The kids are going to see Santa tomorrow and then the festivities begin! Brynn has never opened a present before, so we'll see how that goes...I'm sure she'll like the paper and boxes more than anything!!
FPIES news: After the sweet potatoes pass, we trialed pears, which was also a pass! She just loves them and she seems so happy to be able to sit by us at the table during dinner and eat too! We've also noticed that she has been sleeping better at night...YAYYYYY! Granted, I'm still pulling her into bed with us for portions of the night, but she is going a lot longer between bottles now. She used to be up every 3 hours to eat and now she will typically have a bottle between 8-10, and then go until the morning when we get up for the day!
A few days ago, we started to trial corn. We started with KIX cereal and she totally enjoyed that too! She was a little weirded out by the texture the first time I put one in her mouth (they were cut in half), but after that, I couldn't put them in her mouth fast enough. She also loved pushing them all over her high chair tray (and floor of course). Unfortunately, we decided to stop the trial after the first ingestion. Later that night, she had a pretty questionable diaper. The next day, daycare reported that she had another 2 questionable diapers and was very "off" the whole day. When I went to pick her up she just looked drained (even though she had just taken a 2 hour nap). She had bags under her eyes, she was clingy and her bottom was VERY red and sore. She also had 3 dirty diapers between 5-8 last night that didn't look so great. Sometimes it's so hard to tell if it's the food or if she has something else going on (like teething). Just to be safe, we stopped the food trial...if she returns to her normal, happy self (and better looking diapers), we'll know it's the corn. If she gets her first tooth soon or continues the off-behaviors and questionable diapers, we will re-trial corn sometime soon.
I was so anxious for corn to be a pass. It would open so many doors for my little girl. She could have finger foods (kix, corn chex), but she could also have a hot cereal (corn grits). I know it's awhile away yet, but I can't help but think of her 1st birthday and the fact that she may not get to have some sort of bday cake. Another mom's blog has some great recipes to try though...one being a sorbet (so a safe fruit, sugar and freeze it in a cute shape like a cupcake or something). I'm thinking about trialing another fruit and veggie (a berry and carrots probably) and then possibly quinoa (a pseudo-grain). I am told (by some very knowledgable FPIES moms) that there is a quinoa flour and quinoa puffs too. We could maybe make muffins for her with the flour and a safe fruit!! I'm getting pretty excited about quinoa as we speak! Now I just have to find a store that has quinoa! There is a Good Earth Food Co-op in the area, but I haven't been there yet. Otherwise Trader Joe's is an option, but it's a haul to get there and I don't have a lot of time!
Have a VERY MERRY CHRISTMAS! Enjoy your families and the time together!! (and the goodies!!) =)
FPIES news: After the sweet potatoes pass, we trialed pears, which was also a pass! She just loves them and she seems so happy to be able to sit by us at the table during dinner and eat too! We've also noticed that she has been sleeping better at night...YAYYYYY! Granted, I'm still pulling her into bed with us for portions of the night, but she is going a lot longer between bottles now. She used to be up every 3 hours to eat and now she will typically have a bottle between 8-10, and then go until the morning when we get up for the day!
A few days ago, we started to trial corn. We started with KIX cereal and she totally enjoyed that too! She was a little weirded out by the texture the first time I put one in her mouth (they were cut in half), but after that, I couldn't put them in her mouth fast enough. She also loved pushing them all over her high chair tray (and floor of course). Unfortunately, we decided to stop the trial after the first ingestion. Later that night, she had a pretty questionable diaper. The next day, daycare reported that she had another 2 questionable diapers and was very "off" the whole day. When I went to pick her up she just looked drained (even though she had just taken a 2 hour nap). She had bags under her eyes, she was clingy and her bottom was VERY red and sore. She also had 3 dirty diapers between 5-8 last night that didn't look so great. Sometimes it's so hard to tell if it's the food or if she has something else going on (like teething). Just to be safe, we stopped the food trial...if she returns to her normal, happy self (and better looking diapers), we'll know it's the corn. If she gets her first tooth soon or continues the off-behaviors and questionable diapers, we will re-trial corn sometime soon.
I was so anxious for corn to be a pass. It would open so many doors for my little girl. She could have finger foods (kix, corn chex), but she could also have a hot cereal (corn grits). I know it's awhile away yet, but I can't help but think of her 1st birthday and the fact that she may not get to have some sort of bday cake. Another mom's blog has some great recipes to try though...one being a sorbet (so a safe fruit, sugar and freeze it in a cute shape like a cupcake or something). I'm thinking about trialing another fruit and veggie (a berry and carrots probably) and then possibly quinoa (a pseudo-grain). I am told (by some very knowledgable FPIES moms) that there is a quinoa flour and quinoa puffs too. We could maybe make muffins for her with the flour and a safe fruit!! I'm getting pretty excited about quinoa as we speak! Now I just have to find a store that has quinoa! There is a Good Earth Food Co-op in the area, but I haven't been there yet. Otherwise Trader Joe's is an option, but it's a haul to get there and I don't have a lot of time!
Have a VERY MERRY CHRISTMAS! Enjoy your families and the time together!! (and the goodies!!) =)
Tuesday, December 14, 2010
We have a safe food!!! =)
I am happy to announce that we have our first safe food! YAY Brynn!! We trialed sweet potatoes for the last week and she tolerated them...and actually seems to really like them too! She has been sleeping better as well. I'm thinking that the sweet potatoes fill her up a little more so she doesn't have to get up for a bottle as often as she typically does. (Thanks Brynnie, Daddy and Mommy really need the sleep!!!)
We started a new food trial tonight..PEARS! Wow, did she gobble them down. I felt so bad, she wanted to have more so badly, but I just couldn't give her anymore. We need to make sure they are safe before the full servings come along! She seriously licked every drop off the spoon (and her face) and didn't spit a single drop out. Man, I hope pears are a pass!
She is still gaining weight like crazy. I think we are going to need to move her to a convertable car seat soon. She's definitely not up to the weight limit yet, but she is getting so long! I have a feeling she'll be walking within a month or so too. She climbs on everything, cruises from one piece of furniture to the next, and tonight she stood without holding on to anything! YIKES!! Love her!!! =)
We started a new food trial tonight..PEARS! Wow, did she gobble them down. I felt so bad, she wanted to have more so badly, but I just couldn't give her anymore. We need to make sure they are safe before the full servings come along! She seriously licked every drop off the spoon (and her face) and didn't spit a single drop out. Man, I hope pears are a pass!
She is still gaining weight like crazy. I think we are going to need to move her to a convertable car seat soon. She's definitely not up to the weight limit yet, but she is getting so long! I have a feeling she'll be walking within a month or so too. She climbs on everything, cruises from one piece of furniture to the next, and tonight she stood without holding on to anything! YIKES!! Love her!!! =)
Tuesday, December 7, 2010
And the official diagnosis is....
....FPIES to rice and intolerant of bananas and apples. Rice has been her only full-on FPIES trigger so far. The Dr said we will do an in-hospital food challenge with rice when she is 4 years old (IV in place). Until then, she is to have NOTHING that contains any sort of rice...we will be making our own baby food as as many companies use rice flour as a filler/thickener. She technically could have a full-on reaction to even a trace amount of rice...so even if she finds a grain of rice on the floor and eats it (I better start cleaning better...yikes, Cody gets rice everywhere)!
The dr also gave us what's called an "ER letter". Brynn will have one of these with her where ever she goes. FPIES is fairly rare and a lot of dr's don't even know about it. The ER letter basically says "Brynn has FPIES, this is what FPIES is and this is what you need to do to treat her". If she ingests something and starts to have a reaction, he said we need to immediately bring her to the ER to begin an IV. Daycare will have direct orders to immediately call 911.
One thing the dr said that really stuck in my head was that a lot of people look at FPIES as less severe then a normal food allergy (which they could go into anaphylaxic shock). It is JUST AS SEVERE. She is basically having an ana reaction....but it's in her gut. It still can be a life-threatening issue if proper precautions/treatments are not taken.
So, we will be starting food trials with her. A trial will consist of having 1 food (starting with about a teaspoon) and gradually increasing it for approximately a week (or longer). If no reaction, YAY--we have a safe food! We have trialed bananas, apples and squash so far. I didn't give squash a fair shot, so that will be on our list to try again. Bananas caused tummy issues (up all night screaming and arching her back etc) and apples caused a really bad rash on her bottom (almost looked like hives?) so they will also go on a try again later list. HOPEFULLY, we will not have any more foods that go on the full-on FPIES list.
He was impressed at how much weight she has gained recently (since we switched to formula) and she is growing like crazy now! I asked him about her horrible screaming fits she used to have (the totally inconsolable ones for long periods of time), and he said it definitely could have been a sensitivity to what I ate (probably one of her trigger foods). Being it wasn't directly ingested by her, it wouldn't cause an FPIES reaction.
So we have a lot of label reading to do, but I'm praying that we have only this 1 trigger food and that she will grow out of it soon. I have many mixed emotions going on right now. I'm happy to have the diagnosis after only a few months of suspecting it--not everyone has that same luck. I'm sad and scared for my baby girl. I don't EVER want to see her have a FPIES reaction EVER again. Poor thing. But, we have the support of our family and friends and an allergist who is familiar with FPIES...and some wonderful moms out there who have been leading me into the right direction, so I'm confident that we can handle this with ease. And again I'm praying praying PRAYING that rice will be the only trigger food.
The dr also gave us what's called an "ER letter". Brynn will have one of these with her where ever she goes. FPIES is fairly rare and a lot of dr's don't even know about it. The ER letter basically says "Brynn has FPIES, this is what FPIES is and this is what you need to do to treat her". If she ingests something and starts to have a reaction, he said we need to immediately bring her to the ER to begin an IV. Daycare will have direct orders to immediately call 911.
One thing the dr said that really stuck in my head was that a lot of people look at FPIES as less severe then a normal food allergy (which they could go into anaphylaxic shock). It is JUST AS SEVERE. She is basically having an ana reaction....but it's in her gut. It still can be a life-threatening issue if proper precautions/treatments are not taken.
So, we will be starting food trials with her. A trial will consist of having 1 food (starting with about a teaspoon) and gradually increasing it for approximately a week (or longer). If no reaction, YAY--we have a safe food! We have trialed bananas, apples and squash so far. I didn't give squash a fair shot, so that will be on our list to try again. Bananas caused tummy issues (up all night screaming and arching her back etc) and apples caused a really bad rash on her bottom (almost looked like hives?) so they will also go on a try again later list. HOPEFULLY, we will not have any more foods that go on the full-on FPIES list.
He was impressed at how much weight she has gained recently (since we switched to formula) and she is growing like crazy now! I asked him about her horrible screaming fits she used to have (the totally inconsolable ones for long periods of time), and he said it definitely could have been a sensitivity to what I ate (probably one of her trigger foods). Being it wasn't directly ingested by her, it wouldn't cause an FPIES reaction.
So we have a lot of label reading to do, but I'm praying that we have only this 1 trigger food and that she will grow out of it soon. I have many mixed emotions going on right now. I'm happy to have the diagnosis after only a few months of suspecting it--not everyone has that same luck. I'm sad and scared for my baby girl. I don't EVER want to see her have a FPIES reaction EVER again. Poor thing. But, we have the support of our family and friends and an allergist who is familiar with FPIES...and some wonderful moms out there who have been leading me into the right direction, so I'm confident that we can handle this with ease. And again I'm praying praying PRAYING that rice will be the only trigger food.
Wednesday, December 1, 2010
Anxiety is building!
We have our appointment with Dr Helm (Allergist) next Tuesday. I'm extremely anxious. Brynn hasn't even been officially diagnosed with FPIES, yet, here I am, writing on a blog that has FPIES in the title. I'm just so sure that this is what it is. I've read so many articles, forums with other parents telling their stories and everything just sounds so familiar.
Pretty uneventful the past couple weeks around here. We stopped all food trials to let her gut heal and to hopefully get a path to follow from now on from the allergist. Brynn was pretty sick here the past 4-5 days. We actually had her in the ER on Sunday, as she had a 104 temp and we couldn't get it to go down. I won't go into details about the ER trip, but let me tell you...I was NOT a happy camper. Anyway, yesterday she seemed ok in the morning, so we sent her to daycare. When I picked her up, she had a temp. By the time we got home, it was up to 103 again, so I brought her to Urgent Care (our normal dr's office was already closed) and they gave her an antibiotic for possible Strep. To add on to everything, right before I left to bring Brynn in, Cody spiked a temp. He threw up once last night at like 10:30ish. Went back to bed, woke up a couple more times, but never threw up again. They both seem perfectly fine today now! What the heck? I sure am glad though...
So now we continue waiting. Hopefully, on Tuesday, we get some answers and get pointed in the right direction. =) Wish us luck!!
Pretty uneventful the past couple weeks around here. We stopped all food trials to let her gut heal and to hopefully get a path to follow from now on from the allergist. Brynn was pretty sick here the past 4-5 days. We actually had her in the ER on Sunday, as she had a 104 temp and we couldn't get it to go down. I won't go into details about the ER trip, but let me tell you...I was NOT a happy camper. Anyway, yesterday she seemed ok in the morning, so we sent her to daycare. When I picked her up, she had a temp. By the time we got home, it was up to 103 again, so I brought her to Urgent Care (our normal dr's office was already closed) and they gave her an antibiotic for possible Strep. To add on to everything, right before I left to bring Brynn in, Cody spiked a temp. He threw up once last night at like 10:30ish. Went back to bed, woke up a couple more times, but never threw up again. They both seem perfectly fine today now! What the heck? I sure am glad though...
So now we continue waiting. Hopefully, on Tuesday, we get some answers and get pointed in the right direction. =) Wish us luck!!
Monday, November 22, 2010
The little things in life
We are adding another food to our "see you later" list. We trialed squash which led to sleepless nights and not-so-fun diapers. It's so frustrating. Especially when I have people telling me that she is 8 months old almost, she should be eating food! Or when our daycare provider is constantly on my case about figuring out a safe food for her because "she's starving all the time". I think she just feeds her anytime she's fussing. =/
With Thanksgiving this week, I feel that it's necessary to think about the little things in life...the GOOD things in life. I am blessed with 2 amazing children who make me laugh each and every day. I love the way that Cody says "I need my mom" all the time. Brynn is crawling now and she crawls to me no matter where I am and just puts her hands on my feet and looks up at me, like "hold me!!" Then comes the huge smile when I pick her up. I'm thankful for my husband, who may not be totally with me yet on this diagnosis, but I think he's really coming along...seeing more and more of what I'm talking about and realizing that we actually have a problem on our hands. I'm thankful for being able to nurse as long as I did with Brynn and now I'm REALLY thankful for formula, which has helped her grow...we are now wearing 3-6 and 6 month clothes people! =) We don't have any completely SAFE foods yet, but the formula is doing it's job. I'm extremely thankful for my mom. She helps out so much...every time daycare is closed, she's there. She's even there to take Brynn over night when I need a break because I can't function at work after those sleepless nights. I feel very lucky to have gotten an appt with Dr. Helm on 12/7. I thought it would be a longer wait, but we could get in in a month! I'm also thankful for the BBC moms who have led me onto the correct path (Dr Helm) and have answered my millions of questions when I don't quite understand a symptom/reaction etc. THANK YOU!!!!!!
A few more: -taking a nap with my little boy (LOVE Sundays)
-a good nights rest (meaning only having to wake up 2-4 times a night) Notice a theme here? LOL
-Really warm socks
-Diet coke
I think that's enough for now. My point is this: Even though there are many frustrating things going on with Brynn right now, there are good things in life that I can't forget about. There are so many unknowns right now and it kills me that I don't know/understand what is going on in her tiny, little body. We are going to stop all food trials until we see Dr Helm on 12/7. That will hopefully give her some time to heal and get back to 'baseline'. Plus, he will hopefully have some answers and perhaps a plan of attack. Aside from everything going on right now, I'm so thankful for the life I have! =)
With Thanksgiving this week, I feel that it's necessary to think about the little things in life...the GOOD things in life. I am blessed with 2 amazing children who make me laugh each and every day. I love the way that Cody says "I need my mom" all the time. Brynn is crawling now and she crawls to me no matter where I am and just puts her hands on my feet and looks up at me, like "hold me!!" Then comes the huge smile when I pick her up. I'm thankful for my husband, who may not be totally with me yet on this diagnosis, but I think he's really coming along...seeing more and more of what I'm talking about and realizing that we actually have a problem on our hands. I'm thankful for being able to nurse as long as I did with Brynn and now I'm REALLY thankful for formula, which has helped her grow...we are now wearing 3-6 and 6 month clothes people! =) We don't have any completely SAFE foods yet, but the formula is doing it's job. I'm extremely thankful for my mom. She helps out so much...every time daycare is closed, she's there. She's even there to take Brynn over night when I need a break because I can't function at work after those sleepless nights. I feel very lucky to have gotten an appt with Dr. Helm on 12/7. I thought it would be a longer wait, but we could get in in a month! I'm also thankful for the BBC moms who have led me onto the correct path (Dr Helm) and have answered my millions of questions when I don't quite understand a symptom/reaction etc. THANK YOU!!!!!!
A few more: -taking a nap with my little boy (LOVE Sundays)
-a good nights rest (meaning only having to wake up 2-4 times a night) Notice a theme here? LOL
-Really warm socks
-Diet coke
I think that's enough for now. My point is this: Even though there are many frustrating things going on with Brynn right now, there are good things in life that I can't forget about. There are so many unknowns right now and it kills me that I don't know/understand what is going on in her tiny, little body. We are going to stop all food trials until we see Dr Helm on 12/7. That will hopefully give her some time to heal and get back to 'baseline'. Plus, he will hopefully have some answers and perhaps a plan of attack. Aside from everything going on right now, I'm so thankful for the life I have! =)
Wednesday, November 17, 2010
Bananas
Well, we began our banana trial on Friday. Brynn really doesn't like to be fed with a spoon! She took a couple small spoonfuls on Friday and a couple more on Saturday. After those initial bites, she turned away and pursed her lips together, wanting NOTHING to do with them. Sunday, I tried using a mesh feeder. She LOVED it! She cried when it was gone! I didn't give her more though--I was nervous that it was too big of a jump in quantity.
Fri/Sat night I noticed a couple hours after eating them, she got the hiccups. No other symptoms though. Sunday, no hiccipus, but she was literally up EVERY HOUR throughout the night. Sometimes she would cry and was difficult to console, throwing herself around, stiff as a board. Other times, she would just look at me. As much as I dislike waking up all night long, she is so dang cute when she just looks at me and plays with my face! =) It's hard when she is so upset though. That part sucks.
I was so tired at work all day on Monday. Luckily, my mom offerred to take her overnight for me. What a lifesaver. It was AMAZING to sleep through the night...well, sort of. I woke up about 3 times wondering why Brynn wasn't awake yet. I brought her to my parent's house, and waited until it had been 2 hours after eating her bananas (too make sure they stayed down). I went back home once she was about to go to bed and I was home just in time to say goodnight to Cody too. He kept asking where Brynnie was though...he missed her. (so cute!) My mom said she was up every hour on the hour again, and also awake, screaming, from 2:30-4 and again from 4:30-5. Ugh. Poor baby and poor Grandma! We also noted a small diaper rash.
So last night, we didn't give her anything. She slept soooo much better, only waking up to eat pretty much. YAY! So, I'm thinking we will get her back to baseline (normal), and then try bananas again. Another helpful FPIES mom suggested that I try cooking the bananas first...it apparently breaks down some of the proteins so it's less for her to do on her own.
Fri/Sat night I noticed a couple hours after eating them, she got the hiccups. No other symptoms though. Sunday, no hiccipus, but she was literally up EVERY HOUR throughout the night. Sometimes she would cry and was difficult to console, throwing herself around, stiff as a board. Other times, she would just look at me. As much as I dislike waking up all night long, she is so dang cute when she just looks at me and plays with my face! =) It's hard when she is so upset though. That part sucks.
I was so tired at work all day on Monday. Luckily, my mom offerred to take her overnight for me. What a lifesaver. It was AMAZING to sleep through the night...well, sort of. I woke up about 3 times wondering why Brynn wasn't awake yet. I brought her to my parent's house, and waited until it had been 2 hours after eating her bananas (too make sure they stayed down). I went back home once she was about to go to bed and I was home just in time to say goodnight to Cody too. He kept asking where Brynnie was though...he missed her. (so cute!) My mom said she was up every hour on the hour again, and also awake, screaming, from 2:30-4 and again from 4:30-5. Ugh. Poor baby and poor Grandma! We also noted a small diaper rash.
So last night, we didn't give her anything. She slept soooo much better, only waking up to eat pretty much. YAY! So, I'm thinking we will get her back to baseline (normal), and then try bananas again. Another helpful FPIES mom suggested that I try cooking the bananas first...it apparently breaks down some of the proteins so it's less for her to do on her own.
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