Tuesday, October 21, 2014

Undiagnosed FPIES in Hindsight.

This is an email I sent to a friend on April 26, 2013, when Myra was three months old.  We were in the middle of hell with symptoms that it felt like no one would take seriously.  Many nights, I was getting zero sleep, as in not crappy sleep, but zero.  I would get an hour here or there (including naps), but I was not sleeping.  Even when Myra would fall asleep, I couldn't (explanation in the email).  My friend has five children, so she's basically an expert, right?  Plus, she's essentially always available by text message, bless her heart, so she heard the most about our drama days.  Many of you reading this have probably heard bits and pieces as well, but it didn't take me long to just shut down and not talk to anyone about it because I really felt like most people didn't get it (I mean, how could they?).  I got all kinds of advice that was either clearly not the problem or something we had already tried.  Sorry if that sounds grumpy, but I/we really felt like our hands were tied and we had to just deal with it.  I took Myra to her doctor for this issue three times and he even encouraged me to get a second opinion-I did and it was even less fruitful (an apathetic doctor with bad "advice," at least Myra's primary care doctor really seemed to care, just had no answers).  For more information about our journey to Myra's FPIES diagnosis, including connecting the dots with other symptoms, (which didn't happen until she was 10 months old...), click the FPIES tab above.  Oh, and sorry for the potty mouth (it's actually not as bad as I thought it was), but I'm not going to change what I said...it was a really hard time for all of us!   
Read this when you have 100 (literally) hours to kill. It's long.
I wrote this all out in my due date club group but I thought I would throw it at you too since I probably haven't explained it this detailed and I've been up for 2.5 f*cking hours (edit: 3 f*cking hours after writing this) and I don't actually get "tired" I just turn into a wacko who feels like she's going crazy.
Someone suggested overstimulation which very well could be the case. Trevor loves to get her smiling by whistling and snapping and I'm sure I do stuff that isn't helpful either, but I don't know if that would explain the issue in the middle of the night either. She slept awesome Sunday night after our trip to see Jenny and her napping was pretty meh that day so I'm not convinced its overtired, but could be. Trevor needs 1-2 hours of tv time at night to relax his brain enough to fall asleep, sometimes in the middle of the night even if he's been particularly frazzled by Myra. So, that makes sense for bedtime, but I'm not sure if that just carries over to middle of the night too??

Also, some people are convinced she's teething. Honestly every time I hear that I want to slap them. I know it's possible, but not super likely. I realize I could be wrong. She drools like crazy but everything I've read says that's normal for this Age, teething or not. She's constantly gnawing on her fingers, but she's always had her hands up at her mouth, even in the womb, I have ultrasound photos to prove it. No visible signs of teething in her mouth. She sucks on the straps of the carrier when she's in it, but again normal for her age whether teething or not.
Anyway!!! Here's exactly what we're dealing with. Again it's not every single night, but I'd say average 5 nights a week. 
Really long question so if you're bored out of your mind and have any ideas I would love to hear them. We're having issues getting Myra to STAY asleep at bedtime. It's not that she's fussy or colicky, we can get her calm and relaxed just fine. We can generally get her asleep just fine, but usually 20/30/40 minutes later she starts whining. Not crying (at least not at first), but whining/kind of a yell (usually this "meh, meh, meh" sound). She'll often do this for an hour or two (off and on, we don't leave her to do this the whole time, but she'll go through this 2-3 times before being asleep for good) after we "put her to bed" then once she's actually asleep she sleeps great (5-7 hours!). But then we go through the same thing at that wake up. at least it's just once a night I guess. We are not co-sleeping; she has been in her own room since day one and we're not planning on changing that. I've tried rocking/nursing her to sleep then moving her, putting her down drowsy, the Rock n play/swing/crib, noise machine, nightlight, no nightlight, humidifier, she falls asleep with a pacifier but sometimes it falls out shortly after she falls asleep yet she will stay sleeping for hours so I don't think that's the issue. We started probiotics 3 days ago and we use gas drops with every feeding and colic calm gripe water at night (she's extra gassy, our friends are surprised how much gas we can get out of her!). She's swaddled. We read the same two stories every night as part of bedtime. No older kids so the house is quiet. Like I said, she'll fall asleep easily and typically doesn't wake up right when I put her down, but rather 20-30 minutes later, sometimes probably more like 10. I think I've explained everything...just want to explain it all because people usually jump right to colicky but that's not the issue. We then have the same issue once she wakes in the middle of the night, but again once she's truly back asleep she will stay asleep for 3-6 more hours, depending on how late/early it is at the time. Any ideas??? Just deal with it and it will get better? lol

For example, tonight (aka last night, I guess it's morning now. f*ck.) she was down at about 8:30, did the whiny thing at like 9:15, I went in and soothed her without picking her up, woke again at like 10 and I was like f*ck it, picked her up and rocked while I typed all that sh*t out in my due date club then just sat there Til almost 11. After maybe 15 minutes she whined a bit (a minute maybe?) but never really opened her eyes (video monitor) and put herself back to sleep. I finally relaxed enough and went to sleep about 11:30 (that whine has turned into a bit of an anxiety trigger for me :-/). She woke up at 3:15 so I went in, didn't turn any lights on, didn't talk to her, just put her right on the boob. She fed on both sides in 15 minutes or less (that's a lot for her) and I tried to burp her a bit but nothing so I put her down, left my hand on her Til she was OUT (not sucking on pacifier anymore) and left the room (about 4:00). I laid in bed and of course can't relax because I know what's coming...sure as sh*t about 4:55 the whining starts. I stared at the clock and listened to see if it would turn into a real cry (it's a fine line...) and after 7 minutes I was about to burst into tears (it's frustrating as hell) so I got up and came in her room. Picked her up and she let out a huge fart. Now it's 6:07 and she's passed the f*ck out and I'm torn between trying to put her down because I've been up since 3:15 or letting her sleep because I'm so fired up anyway I will have a big fat sob fest if I have to go through all this again when the night is basically over and we'll just end up calling it a nap.

Speaking of naps, she had been a nap rock star but even those seem to be more hit or miss lately which gives me the same anxiety about those which makes it hard for me to even nap during the day. I literally give myself pep talks about why I should be able to relax and sleep because this time was different but then often times it's not.

1 comment:

  1. Hey! So I know this was posted a long time ago but I have an 8 month old and am just now finding out about FPIES. We have seen a GI Specialist, an allergist who didn't know crap, and now have an appt with a GI Specialist that I found off the FPIES foundation website. Anyway, I just want to say yay for someone else having sleeping issues with their baby!!!! I swear because ya, no one flipping gets it when I say I have been up all freaking night!!! And I do the same thing, she falls asleep but then it's almost pointless to try and sleep myself because I know as soon as I get all cozy and almost out of it, she will wake up!! It is soo frusterating especially everyone's adivce. And then people actually tell me they are tired cause their kid woke up 3 times last night...it takes self control to not lose it on them...they don't even know what tired is! Anyway, I am hoping for an official FPIES diagnosis just to have something instead of shooting in the dark. Anyway, we are dealing with the sleep thing to so it's nice to know I am not the only one. Any you have survived so that is encouraging too cause some days I am sure I am not going to!


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