Carrots. They seem like such a mundane vegetable. What with their flowing green sprouts and happy orange color.
They scare the H-E-double-hockey-sticks out of me.
We are fresh off our FAIL of bananas in this house. As in- she hasn't eaten them in a week and 2 days and she just started acting somewhat normally yesterday. And by 'eaten them' I mean she had about two teaspoons worth. I think we were really working up to a bad reaction, but knowing her signs by now, we pulled them before it got bad.
I'll admit it. I'm completely freaked out about another BAD reaction. Its easy to think about it in the abstract. You know- she'll be uncomfortable. So I'll comfort her. She'll poop a bazillion times (I use cloth diapers.. her skin is just as sensitive as her GI tract). So I'll do a lot of laundry. She won't sleep well at all and I'll be sleep deprived. HELLO Starbucks drive-thru.
The problem is the actual reality of it all. Its mentally exhausting. I used to think there was nothing worse than your baby not feeling well and you not being able to help. Oh, how wrong I was. Way wrong. What's FAR worse is your baby being miserable and knowing it was the food that YOU gave them that made them that way. [insert mommy guilt here]
So I need to start carrots, per the allergist. I'm hoping... praying... can we puhleeeease pass this food? No screaming. No mucus poop. No sleep disturbance. No reflux. No vomit. *sigh*
I think we'll start tomorrow. I'm stressed out just thinking about it.
**** while in the middle of writing this post, my husband got up in a panic and wondered what Livvy had in her mouth. If it was the 'wrong' thing- you know, anything other than a toy of hers, the results could be devastating if it were food. So the calm, cool and collected mama that I am levitated off the couch and sprinted like a gazelle running for her life across the room... it was a pacifier. Whew.
Wednesday, February 15, 2012
Tuesday, February 14, 2012
All the Cool Kids are doing it
That night after our second FPIES reaction when I was searching for information, I kept coming across the same couple blogs maintained by FPIES mommies. I cannot say how vital those blogs were in directing us towards the direction of answers for Livvy! Their stories and links for information were instrumental in Livvy being diagnosed so quickly. We really were headed in the right direction (we HAD a direction!) because of them.
I wanted to be able to pay it forward, in the only way I really can. So this blog was started. I kind of feel like I'm falling in with the 'in crowd' on babycenter's FPIES page. LOL. You know... 'all the cool kids are doing it'... blogging about their FPIES kids. I understand the appeal. FPIES isn't well known and being constantly misunderstood is exhausting. Spending a slightly more than acceptable amount of time trying to explain this crazy issue to every person who asks is a bit much. Its easier to direct friends and family to the blog if they want to know 'how Livvy is doing'. It isn't that I don't want to take the time to explain, per se, but I'm just not that effective in doing so with a baby crying and a preschooler screaming in the background.
Sooooooo, I'm one of the cool kids now.
I wanted to be able to pay it forward, in the only way I really can. So this blog was started. I kind of feel like I'm falling in with the 'in crowd' on babycenter's FPIES page. LOL. You know... 'all the cool kids are doing it'... blogging about their FPIES kids. I understand the appeal. FPIES isn't well known and being constantly misunderstood is exhausting. Spending a slightly more than acceptable amount of time trying to explain this crazy issue to every person who asks is a bit much. Its easier to direct friends and family to the blog if they want to know 'how Livvy is doing'. It isn't that I don't want to take the time to explain, per se, but I'm just not that effective in doing so with a baby crying and a preschooler screaming in the background.
Sooooooo, I'm one of the cool kids now.
FPIES, the thief.
Let me preface this post by saying that I am very grateful for many things in life. My girls don't have any fatal diseases, we have a roof over our heads and food in the fridge. There's also lots of love going around in our home. I don't want to sound ungrateful for what I have... but I would be lying if I wasn't a bit sad about what I (and my girls, especially Livvy) don't have.
I'm just going to go ahead and put it out there... FPIES sucks. It has been a thief of simple pleasures and special times.
Breastfeeding has always been something I was dedicated to with both of my girls. I strongly believe in its health benefits and bonding time. It was because of this belief that I stuck it out with a restricted diet as long as I did with Livvy. Towards the end, I had dairy, soy, corn, rice, beef, rice and oats out of my diet and she was still not tolerating my milk. I wanted so badly to continue to nurse and 'do the best for her'. With so much out of my diet, producing enough milk to 100% nourish a 7 month old was really taking a toll on me. I was exhausted and weak. All this and still not complete improvement of her symptoms. By the time we saw our allergist, I was at the end of my rope. My whole day (or so it seemed) revolved around what I could eat, when, and how to find it in the stores or cook it. I had no time for L and just felt like I was failing. Miserably. We 'trialed' elemental formulas, and switched to Neocate Infant. I feel like the switch to formula deserves its own post, but suffice it to say, it was not an easy transition. I really felt robbed of breastfeeding my daughter, and was very uneasy about feeding her such an engineered diet.
Then there's the simple pleasure of introducing 'fun' new things to your growing baby to eat. Yeah, there's nothing pleasurable about holding your breath and waiting to see if your baby starts to projectile vomit or have bloody diarrhea over eating a bit of bananas. You can forget about cute little cheerios and first bites of ice cream.
What has me most 'down' these days, though, is Livvy's first birthday coming up. There won't be any cute cake pictures here. The only 'safe' foods for her thus far is Neocate formula and baby pears. Rather impossible to fashion anything that resembles cake from those two things. I'm fairly handy in the kitchen, but I'm no magician. It breaks my heart a bit that she won't have a 'normal' birthday party. I know she doesn't know any different, but I still feel like she's being robbed of something special.
My 3 year old has a lot of restrictions around the house... just rules to keep her sister safe. I am a psycho about cleaning up the floor. I haven't had play doh around in months (could cause a bad reaction if Livvy got any of it), and we haven't been out to eat much because I need to buy some sort of high chair to take with us so Liv doesn't get her hands on food residue. Not to mention all the times I've told her, "sorry, L, we can't today. Livvy isn't feeling well and we have to stay home".
No, I don't wallow in this stuff daily. Don't get the wrong idea here. They are things, however, that I think about in passing every so often. All I can do is the best I can for today, and hope that a tomorrow in the future allows us to do something CRAZY like go get pizza and ice cream as a family
Getting up to speed-
Where to begin, where to begin?
I suppose I'll back up a bit and start with our oldest lil lady, 'L'. Bless her heart, she was an awful baby. I mean that in the most loving way a mama can say it... but honestly, the poor kid was miserable. She never slept, breastfed constantly, pooped constantly (if you're squeamish about poo, just go ahead and leave the blog now... there's many mentions of it to follow), and just generally scowled most of the time she wasn't screaming. The long story short for her was that it turns out she was severely intolerant to dairy milk proteins. She reacted to it through my breastmilk, but got far worse symptoms when she directly started ingesting it around 10 months when we switched to (dairy based) formula and eating solids. Though I have no problems eating dairy, my mom doesn't tolerate it well at all and suggested that I cut it out of L's diet. Skeptical as I was, I did. She was like a different kid. Happy! Started sleeping! HALLELUJAH! Soooo we started avoiding dairy like the plague and she was completely fine, healthy, and happy. It seemed like a total pain in the neck avoiding dairy, but we got used to the restriction for her and all was well.
Fast forward a couple years and we were expecting our second baby. I had done plenty of reading on siblings of kids that have food interances and allergies and it seemed that there was a decent chance of having another child with similar issues. I thought, OK, I know what to look for and I'll just cut dairy out of my diet if our new baby girl starts showing signs of problems.
In April of 2011, our Livvy was born. She was an 'easy' delivery (I say this comparatively speaking. L was a posterior, drug free birth. Can we say 3 hours of pushing and 95th percentile newborn head circumference???) and was an easy newborn. Then a few weeks in, she started showing signs of being uncomfortable. Sleep was only happening an hour or so at a time, she was getting cranky, gassy, and pulling her knees up a lot. There was also the telltale sign of mucus in her stool. Ok, great. Called the pediatrician and she wasn't any help other than to say 'well, you might be right that its dairy. Go ahead and cut it out and see what happens'. Gee thanks. That's all the wisdom all those years of medical school can offer? Cut dairy out promptly. It seemed to ease symptoms but it by no means solved any problems. As the weeks and months progressed I cut soy, corn and beef out of my diet as well. Again, the symptoms kept improving but not clearing up. All the while, the pediatrician was essentially telling me that I needed to calm down and that I was overreacting. There were often diapers that were streaked with visible blood and always, always gobs of mucus. I would say there were easily 8 poopy diapers a day. It also became obvious that she was suffering from silent reflux. We tried a couple meds which seemed to take the edge off, but made her bowel movements more painful and gave her more gas. By the afternoon, I would end up planting myself on the couch with Liv and nursing her basically all evening into the night. She was comfort nursing. The poor thing felt so crummy that she just wanted to cuddle with mom and nurse because she just didn't know what else to do. I didn't know what else to do for her.
I put off starting solids until she was a bit over 6 months old. Somewhere along the line, I read that baby oatmeal sometimes helped soothe the tummies of babies suffering from reflux. When it came time to start food, I picked an organic baby oatmeal. The first attempt at food she essentially rejected trying to eat at all. The next day, I managed to get her to eat about a tablespoon or so. I fed her in the evening after we ate our dinner. Two hours later, she woke from a nap crying. I picked her up and I heard a gurgle..... then the floodgates opened. Livvy proceeded to projectile vomit for the better part of an hour. PROJECTILE. She just kept going and going. I didn't know where it was all coming from. When she finally stopped she looked pale and fell into a deeeep sleep after nursing for a few mins. I was co-sleeping (direct all co-sleeping negativity somewhere else, please....) and I remember (vaguely) waking in the middle of the night and feeling her little heart racing. I thought maybe she was just getting sick. The next two days were followed with horrible mucusy diarrhea streaked with very visible blood and about a week of being really cranky and sleeping even worse than normal. Again, the pediatrician thought I was totally losing my mind and blowing this out of proportion.
After waiting about two weeks we tried some baby rice cereal. Who can't eat rice, right? I think Livvy had about two tablespoons. Three hours later we awoke to baby girl being COVERED in vomit and continuing to projectile vomit. She also already had a diaper full of explosive diarrhea. We got the bed, ourselves and the baby all cleaned up and changed after about an hour. I changed Liv into new pajamas and lifted her up and she went limp. Rag doll limp. At 7 months old, her head bobbed around like a newborn's head would. She was gray and clammy. I know now, that I should have taken her to the ER. She wasn't just tired, she was going into shock. I managed to nurse her for a few minutes before laying her down.
I proceeded to spend the next few hours ferociously searching the web for answers. I googled 'baby+vomit+rice cereal' and this same acronym, FPIES, kept coming up. After reading for hours, I was convinced that this was what we were dealing with. I also was terrified about where to turn because there was more than one personal account that I read about a mom being accused of munchuasen by proxy trying to find help for their kids.
There is a great support page on babycenter.com for FPIES and I posted a plea trying to find a knowledgeable allergist or GI specialist in our area. The mamas there really came through for me and I found a wonderful allergist about two hours away.
That was the end of November 2011. Stay tuned for more on our journey as we learn to Liv with FPIES
For more on FPIES, go to
http://thefpiesfoundation.org/
I suppose I'll back up a bit and start with our oldest lil lady, 'L'. Bless her heart, she was an awful baby. I mean that in the most loving way a mama can say it... but honestly, the poor kid was miserable. She never slept, breastfed constantly, pooped constantly (if you're squeamish about poo, just go ahead and leave the blog now... there's many mentions of it to follow), and just generally scowled most of the time she wasn't screaming. The long story short for her was that it turns out she was severely intolerant to dairy milk proteins. She reacted to it through my breastmilk, but got far worse symptoms when she directly started ingesting it around 10 months when we switched to (dairy based) formula and eating solids. Though I have no problems eating dairy, my mom doesn't tolerate it well at all and suggested that I cut it out of L's diet. Skeptical as I was, I did. She was like a different kid. Happy! Started sleeping! HALLELUJAH! Soooo we started avoiding dairy like the plague and she was completely fine, healthy, and happy. It seemed like a total pain in the neck avoiding dairy, but we got used to the restriction for her and all was well.
Fast forward a couple years and we were expecting our second baby. I had done plenty of reading on siblings of kids that have food interances and allergies and it seemed that there was a decent chance of having another child with similar issues. I thought, OK, I know what to look for and I'll just cut dairy out of my diet if our new baby girl starts showing signs of problems.
In April of 2011, our Livvy was born. She was an 'easy' delivery (I say this comparatively speaking. L was a posterior, drug free birth. Can we say 3 hours of pushing and 95th percentile newborn head circumference???) and was an easy newborn. Then a few weeks in, she started showing signs of being uncomfortable. Sleep was only happening an hour or so at a time, she was getting cranky, gassy, and pulling her knees up a lot. There was also the telltale sign of mucus in her stool. Ok, great. Called the pediatrician and she wasn't any help other than to say 'well, you might be right that its dairy. Go ahead and cut it out and see what happens'. Gee thanks. That's all the wisdom all those years of medical school can offer? Cut dairy out promptly. It seemed to ease symptoms but it by no means solved any problems. As the weeks and months progressed I cut soy, corn and beef out of my diet as well. Again, the symptoms kept improving but not clearing up. All the while, the pediatrician was essentially telling me that I needed to calm down and that I was overreacting. There were often diapers that were streaked with visible blood and always, always gobs of mucus. I would say there were easily 8 poopy diapers a day. It also became obvious that she was suffering from silent reflux. We tried a couple meds which seemed to take the edge off, but made her bowel movements more painful and gave her more gas. By the afternoon, I would end up planting myself on the couch with Liv and nursing her basically all evening into the night. She was comfort nursing. The poor thing felt so crummy that she just wanted to cuddle with mom and nurse because she just didn't know what else to do. I didn't know what else to do for her.
I put off starting solids until she was a bit over 6 months old. Somewhere along the line, I read that baby oatmeal sometimes helped soothe the tummies of babies suffering from reflux. When it came time to start food, I picked an organic baby oatmeal. The first attempt at food she essentially rejected trying to eat at all. The next day, I managed to get her to eat about a tablespoon or so. I fed her in the evening after we ate our dinner. Two hours later, she woke from a nap crying. I picked her up and I heard a gurgle..... then the floodgates opened. Livvy proceeded to projectile vomit for the better part of an hour. PROJECTILE. She just kept going and going. I didn't know where it was all coming from. When she finally stopped she looked pale and fell into a deeeep sleep after nursing for a few mins. I was co-sleeping (direct all co-sleeping negativity somewhere else, please....) and I remember (vaguely) waking in the middle of the night and feeling her little heart racing. I thought maybe she was just getting sick. The next two days were followed with horrible mucusy diarrhea streaked with very visible blood and about a week of being really cranky and sleeping even worse than normal. Again, the pediatrician thought I was totally losing my mind and blowing this out of proportion.
After waiting about two weeks we tried some baby rice cereal. Who can't eat rice, right? I think Livvy had about two tablespoons. Three hours later we awoke to baby girl being COVERED in vomit and continuing to projectile vomit. She also already had a diaper full of explosive diarrhea. We got the bed, ourselves and the baby all cleaned up and changed after about an hour. I changed Liv into new pajamas and lifted her up and she went limp. Rag doll limp. At 7 months old, her head bobbed around like a newborn's head would. She was gray and clammy. I know now, that I should have taken her to the ER. She wasn't just tired, she was going into shock. I managed to nurse her for a few minutes before laying her down.
I proceeded to spend the next few hours ferociously searching the web for answers. I googled 'baby+vomit+rice cereal' and this same acronym, FPIES, kept coming up. After reading for hours, I was convinced that this was what we were dealing with. I also was terrified about where to turn because there was more than one personal account that I read about a mom being accused of munchuasen by proxy trying to find help for their kids.
There is a great support page on babycenter.com for FPIES and I posted a plea trying to find a knowledgeable allergist or GI specialist in our area. The mamas there really came through for me and I found a wonderful allergist about two hours away.
That was the end of November 2011. Stay tuned for more on our journey as we learn to Liv with FPIES
For more on FPIES, go to
http://thefpiesfoundation.org/
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