(Settle in, reader, it's a long one)
That dang chocolate covered raisin incident from the last post got our hopes up. We thought that if she did eat it, and didn't have a reaction, that it must mean she wasn't FPIES to milk anymore. I'm guessing that she put it in her mouth, spit it out, and a dog ate it up before she ran in to the kitchen to bring me the box.
If you've been following along, you know we had the in-office milk trial two days ago for our daughter (who we call Acorn, for blog purposes). It had been scheduled and anticipated for about two months. We got to the allergist's office at 7:50 a.m. We knew we'd be there several hours, but when we got in to the office, we realized it was going to be a long morning. It was a regular exam room; hard chairs, a spinning stool, and an exam bed. Not enough room for a two year old with a lot of energy, or 30-somethings who like comfortable bottoms. We talked with the doctor and nurse about the plan. If she did throw up, we'd immediately give her water and Zofran, in hopes that it would stop the vomiting before she gets to the point of her body starting to go in to shock. If all went well, we'd be out by noon or so. I wasn't too worried; we even had lunch plans at 1pm. It wasn't that I didn't think she'd have a reaction, exactly, it was that I didn't think she'd have one that day. I was more worried that she wouldn't react, we'd go home thinking we were in the clear, and after a week or so of having milk, she'd have a reaction at daycare. I was in for the waiting game. I'm not a doctor or an FPIES specialist, but it just doesn't make sense to me that with a brand new food it takes two weeks to build in her system before a reaction, but with a food she's already reacted to, that it would take just a few hours. She hadn't had milk in 18 months, so even though I know the "rules" of FPIES, I just thought it was too weird. But FPIES is weird. And ridiculous and mean.
The plan was to split up a serving of milk in to three parts, 15 minutes apart. They brought the first couple ounces around 8:30, but she was having nothing to do with it. She took a tiny sip and made a horrible face, pursed her lips and closed up shop. After trying all the fun cups I brought (including a brand new one with cars on it!) I mentioned what I knew would work; we brought a bottle and her formula. I mentioned it last because I was embarrassed. I was embarrassed that at two years old she still drinks formula out of a bottle. I know that people judge that, and I know she should not be drinking from a bottle. But trust me, we've tried everything. After feeling like a failure for not being able to get her to drink her prescription formula out of a sippy cup, I turned to our trusty Facebook FPIES support page for help. So many people validated that they have the same issue, and people pointed out that when they drink from a bottle, the formula goes right to the back of the mouth, so they don't get much flavor. When they drink from a cup, it hits the whole tongue, and let me tell you, Neocate Jr Vanilla probiotic formula is not a delicious treat. It makes sense, it tastes completely different from bottle to cup. We were advised that since dairy and soy milk were out, almond and other milks are not a good substitute for the nutrition they need before two, so she needed to stick with the formula. It wasn't worth a bottle battle, so we've just stuck with it. I know we'll need to face that battle at some point, but this is not that point.
So anyway, I busted out the bottle, put a scoop of formula in it, and she sucked it down like it was a milk shake by 8:55. By 9:30 she'd finished all three, and they started the two hour timer. She threw a ball around the room, spun Elmo in circles on the stool, opened and closed the trash cabinet a thousand times, colored pictures of Wallykazam, took a bite out of a crayon AND a paper towel (Really kid? On food trial day? We quickly pulled them out of her mouth), lost crayon and paper towel privileges, had hot wheels all over the office, flapped around in her butterfly wings (we came prepared), and was generally enjoying her time. Dad and I entertained ourselves by playing Heads Up (the app game), which also made Acorn laugh at us. She was so happy and energetic, there couldn't possibly be any craziness going on in her digestive system. We frequently asked her, "Are you ok? Do you feel ok?" and she responded "Yep! I ok!" "Does your stomach hurt?", "No!"
At 10:50 we realized it had been almost two hours from her first drink, and we got excited. She was doing so well. We started talking about all the things she'd be able to eat. My husband is the cook in the house, and starting naming things he wanted to make her; "Tacos with cheese and sour cream! We could make wheat crust and actually make a pizza with cheeeeeese!" "Oh! Macaroni and cheese! Aaaah it's going to blow her mind!" We took turns naming all the things we couldn't wait for her to try. She'd been sitting on dad's lap and just came over to sit on my lap. I paused from our list and said, "She feels cold and sweaty." Dad said he'd been hugging her, and he was sweaty, so it was probably just from holding her for a while. I said no, it was definitely her. Before I finished the sentence -- projectile vomit. Over and over and over. Dad got the nurse, and went to get the Zofran. We held trash cans and vomit pans and got bigger trash cans, but still most of it was all over me. I asked how she was and she shook her head "no", and buried her face in my chest. She didn't cry, but I did. I sobbed as I held her. I was heart broken. The nurse wasn't sure who needed comfort more, but she was amazing (mental note: send a thank you card). I gave her sips of water and we put the medicine in her mouth. The nurse said it should stop the vomiting quickly. It didn't. They took her blood pressure and temperature and both were dropping. Her eyes were glossed over and she was no longer responding much. The doctor came in, looked at her, and said it was time to go to the ER. Thankfully, the allergist's office is attached to a hospital, so we literally just ran to the other part of the building with the nurse. I held her with one arm, because I had something else in my other hand (no idea what), and remember thinking that it felt like she didn't weigh anything at all. I guess that's adrenaline. The doctor called over and let them know the situation, which is great because trying to explain FPIES to doctors and nurses in the ER is maddening. They took her temperature again and I asked the nurse what it was. She responded, "Oh, we'll have to wait and do it again, it's not working, it's reading too low so I need to get a new thermometer." I told her it's probably right, that her temperature was down to 95 the last time. She took it again and realized it was right. It was 96.something, I don't remember. Before I knew it, they had an IV in her hand, and fluids, steroids, and Zofran were started. She still didn't cry. She was mostly unresponsive, but when the doctor put the thermometer in her ear she whispered "tickles" and scrunched her nose up, which made me laugh and snapped me out of wherever the heck I was. It was somehow already 12:30, and she fell asleep. We took the down time to text family, email work, and take a deep breath. I felt numb.
After a couple hours, she was back to her normal happy self. She looked around and announced, "I feel better!", then sang Let it Go, made the doctors and nurses laugh, and was ready to head home. We put her wings back on her, which turned out to be good because we had a long walk, and everyone seemed to be looking at (and commenting on) how cute she was, so maybe nobody noticed that my black pants and black shirt were covered in dried, white, chunky vomit. It didn't matter anymore. On the drive home, Fight Song by Rachel Platten came on the radio (pause here and go listen to it!). Out of the blue, she started singing along. "la la la la FIGHT SONG... la la la" It was amazing; this little fighter has an anthem now.
I stayed home with her another day and stayed in adrenaline mode. I watched every move, felt her forehead, asked how she was feeling a million times, and had some serious and much needed cuddle time. This morning she went back to daycare. Thankfully we have an amazing provider, who I trust with her life (literally), so that makes it easier. I put Acorn in her booster chair, and then switched her because OMG how could I possibly put her in the pink one when she really wanted blue, but then put her in the blue and red one when she wanted just blue (the toddler drama struggle is real)... and in the switch she ended up in a spot with a cup of milk in front of it. "No! No milk!!", she shouted. "No no no, dear, don't worry, no milk for you."
When I got to work the adrenaline had worn off. I cried between every therapy session, and just felt empty. I can't really explain why, though. We're in the same spot we were a week ago. Except this time, we're without the hope that there's an end in sight. In one of my first posts I think I wrote, "It's going to be a long three years", because we were told then that kids grow out of it by age three. Now we have to wait at least 18 months to trial milk again, and who knows how long after that to trial soy. And then maybe trial blueberries, strawberries, and olive oil, since we don't know which one she had a reaction to 7 months ago. That means we'll be in to preschool years, and coming right up on kindergarten, where she'll be surrounded by kids with snacks that can send her to the hospital, and teachers who can only do so much and are split 25 different directions. I can't even begin to fathom that right now. So on that note, blog world, I'm off to bed. But first, to the FPIES parents reading this, wondering if you're alone, crazy, or doing something wrong: You're not. You may not know anyone personally who is dealing with FPIES, but we're here and available for you. You're doing the best you can to navigate a crazy journey, filled with road blocks, backwards signs, emergency rooms, and toddlers still drinking from bottles. You may be covered in vomit and lacking sleep, but you are amazing and loved. Hug yourself, hug your little one, vent to someone (go to my contact page if you want to!), cry when you need to, and take a nap when you can. Actually, that last part goes for everyone out there.
That dang chocolate covered raisin incident from the last post got our hopes up. We thought that if she did eat it, and didn't have a reaction, that it must mean she wasn't FPIES to milk anymore. I'm guessing that she put it in her mouth, spit it out, and a dog ate it up before she ran in to the kitchen to bring me the box.
If you've been following along, you know we had the in-office milk trial two days ago for our daughter (who we call Acorn, for blog purposes). It had been scheduled and anticipated for about two months. We got to the allergist's office at 7:50 a.m. We knew we'd be there several hours, but when we got in to the office, we realized it was going to be a long morning. It was a regular exam room; hard chairs, a spinning stool, and an exam bed. Not enough room for a two year old with a lot of energy, or 30-somethings who like comfortable bottoms. We talked with the doctor and nurse about the plan. If she did throw up, we'd immediately give her water and Zofran, in hopes that it would stop the vomiting before she gets to the point of her body starting to go in to shock. If all went well, we'd be out by noon or so. I wasn't too worried; we even had lunch plans at 1pm. It wasn't that I didn't think she'd have a reaction, exactly, it was that I didn't think she'd have one that day. I was more worried that she wouldn't react, we'd go home thinking we were in the clear, and after a week or so of having milk, she'd have a reaction at daycare. I was in for the waiting game. I'm not a doctor or an FPIES specialist, but it just doesn't make sense to me that with a brand new food it takes two weeks to build in her system before a reaction, but with a food she's already reacted to, that it would take just a few hours. She hadn't had milk in 18 months, so even though I know the "rules" of FPIES, I just thought it was too weird. But FPIES is weird. And ridiculous and mean.
The plan was to split up a serving of milk in to three parts, 15 minutes apart. They brought the first couple ounces around 8:30, but she was having nothing to do with it. She took a tiny sip and made a horrible face, pursed her lips and closed up shop. After trying all the fun cups I brought (including a brand new one with cars on it!) I mentioned what I knew would work; we brought a bottle and her formula. I mentioned it last because I was embarrassed. I was embarrassed that at two years old she still drinks formula out of a bottle. I know that people judge that, and I know she should not be drinking from a bottle. But trust me, we've tried everything. After feeling like a failure for not being able to get her to drink her prescription formula out of a sippy cup, I turned to our trusty Facebook FPIES support page for help. So many people validated that they have the same issue, and people pointed out that when they drink from a bottle, the formula goes right to the back of the mouth, so they don't get much flavor. When they drink from a cup, it hits the whole tongue, and let me tell you, Neocate Jr Vanilla probiotic formula is not a delicious treat. It makes sense, it tastes completely different from bottle to cup. We were advised that since dairy and soy milk were out, almond and other milks are not a good substitute for the nutrition they need before two, so she needed to stick with the formula. It wasn't worth a bottle battle, so we've just stuck with it. I know we'll need to face that battle at some point, but this is not that point.
So anyway, I busted out the bottle, put a scoop of formula in it, and she sucked it down like it was a milk shake by 8:55. By 9:30 she'd finished all three, and they started the two hour timer. She threw a ball around the room, spun Elmo in circles on the stool, opened and closed the trash cabinet a thousand times, colored pictures of Wallykazam, took a bite out of a crayon AND a paper towel (Really kid? On food trial day? We quickly pulled them out of her mouth), lost crayon and paper towel privileges, had hot wheels all over the office, flapped around in her butterfly wings (we came prepared), and was generally enjoying her time. Dad and I entertained ourselves by playing Heads Up (the app game), which also made Acorn laugh at us. She was so happy and energetic, there couldn't possibly be any craziness going on in her digestive system. We frequently asked her, "Are you ok? Do you feel ok?" and she responded "Yep! I ok!" "Does your stomach hurt?", "No!"
At 10:50 we realized it had been almost two hours from her first drink, and we got excited. She was doing so well. We started talking about all the things she'd be able to eat. My husband is the cook in the house, and starting naming things he wanted to make her; "Tacos with cheese and sour cream! We could make wheat crust and actually make a pizza with cheeeeeese!" "Oh! Macaroni and cheese! Aaaah it's going to blow her mind!" We took turns naming all the things we couldn't wait for her to try. She'd been sitting on dad's lap and just came over to sit on my lap. I paused from our list and said, "She feels cold and sweaty." Dad said he'd been hugging her, and he was sweaty, so it was probably just from holding her for a while. I said no, it was definitely her. Before I finished the sentence -- projectile vomit. Over and over and over. Dad got the nurse, and went to get the Zofran. We held trash cans and vomit pans and got bigger trash cans, but still most of it was all over me. I asked how she was and she shook her head "no", and buried her face in my chest. She didn't cry, but I did. I sobbed as I held her. I was heart broken. The nurse wasn't sure who needed comfort more, but she was amazing (mental note: send a thank you card). I gave her sips of water and we put the medicine in her mouth. The nurse said it should stop the vomiting quickly. It didn't. They took her blood pressure and temperature and both were dropping. Her eyes were glossed over and she was no longer responding much. The doctor came in, looked at her, and said it was time to go to the ER. Thankfully, the allergist's office is attached to a hospital, so we literally just ran to the other part of the building with the nurse. I held her with one arm, because I had something else in my other hand (no idea what), and remember thinking that it felt like she didn't weigh anything at all. I guess that's adrenaline. The doctor called over and let them know the situation, which is great because trying to explain FPIES to doctors and nurses in the ER is maddening. They took her temperature again and I asked the nurse what it was. She responded, "Oh, we'll have to wait and do it again, it's not working, it's reading too low so I need to get a new thermometer." I told her it's probably right, that her temperature was down to 95 the last time. She took it again and realized it was right. It was 96.something, I don't remember. Before I knew it, they had an IV in her hand, and fluids, steroids, and Zofran were started. She still didn't cry. She was mostly unresponsive, but when the doctor put the thermometer in her ear she whispered "tickles" and scrunched her nose up, which made me laugh and snapped me out of wherever the heck I was. It was somehow already 12:30, and she fell asleep. We took the down time to text family, email work, and take a deep breath. I felt numb.
After a couple hours, she was back to her normal happy self. She looked around and announced, "I feel better!", then sang Let it Go, made the doctors and nurses laugh, and was ready to head home. We put her wings back on her, which turned out to be good because we had a long walk, and everyone seemed to be looking at (and commenting on) how cute she was, so maybe nobody noticed that my black pants and black shirt were covered in dried, white, chunky vomit. It didn't matter anymore. On the drive home, Fight Song by Rachel Platten came on the radio (pause here and go listen to it!). Out of the blue, she started singing along. "la la la la FIGHT SONG... la la la" It was amazing; this little fighter has an anthem now.
I stayed home with her another day and stayed in adrenaline mode. I watched every move, felt her forehead, asked how she was feeling a million times, and had some serious and much needed cuddle time. This morning she went back to daycare. Thankfully we have an amazing provider, who I trust with her life (literally), so that makes it easier. I put Acorn in her booster chair, and then switched her because OMG how could I possibly put her in the pink one when she really wanted blue, but then put her in the blue and red one when she wanted just blue (the toddler drama struggle is real)... and in the switch she ended up in a spot with a cup of milk in front of it. "No! No milk!!", she shouted. "No no no, dear, don't worry, no milk for you."
When I got to work the adrenaline had worn off. I cried between every therapy session, and just felt empty. I can't really explain why, though. We're in the same spot we were a week ago. Except this time, we're without the hope that there's an end in sight. In one of my first posts I think I wrote, "It's going to be a long three years", because we were told then that kids grow out of it by age three. Now we have to wait at least 18 months to trial milk again, and who knows how long after that to trial soy. And then maybe trial blueberries, strawberries, and olive oil, since we don't know which one she had a reaction to 7 months ago. That means we'll be in to preschool years, and coming right up on kindergarten, where she'll be surrounded by kids with snacks that can send her to the hospital, and teachers who can only do so much and are split 25 different directions. I can't even begin to fathom that right now. So on that note, blog world, I'm off to bed. But first, to the FPIES parents reading this, wondering if you're alone, crazy, or doing something wrong: You're not. You may not know anyone personally who is dealing with FPIES, but we're here and available for you. You're doing the best you can to navigate a crazy journey, filled with road blocks, backwards signs, emergency rooms, and toddlers still drinking from bottles. You may be covered in vomit and lacking sleep, but you are amazing and loved. Hug yourself, hug your little one, vent to someone (go to my contact page if you want to!), cry when you need to, and take a nap when you can. Actually, that last part goes for everyone out there.