My heart was in my throat just reading this. What an ordeal! You and your husband have to take so much credit for keeping at it in order to give your daughter a normal life. Would you be where you are now, almost to the finish line, without all of those steps in between?
All that preliminary work has brought you to the people who might finally have solved the mysteries. I hope you all can rest easy now and enjoy the days ahead.
Your dedication to your daughter's health is heartening and inspiring. Thank you for sharing this.
Wow Nicci, what a beautifully honest memoir of parenting a young child with specific needs. Thank you for opening my eyes to what you and yours have endured. You're a good one, you are.
I felt this on so many levels, Nicci. I also have a similar draft in writing, albeit with my family’s much different story. You’re right, though, that everyone’s dealing with their own version of having to figure out how to deal with something. And we’re all better than we realize at being resilient. But damn, it’s tough when you’re in it. It’s lonely because not many people truly get it, even those who are close to you and really care.
That's very true. The people who try hard and really want to understand, we really appreciate, but in a way it makes it that much harder because it's that much more frustrating when they can't get it. Before I was a parent, I never realized how eternal everything seems when you're in the thick of it. Sending love and hugs to you and your family!
Then they say, “Let me know how I can help.” And now that’s another thing you’ve got to think about and consider their feelings around in the midst of dealing with the more acute issues going on at home. It’s tough all around.
Thank you for the love and hugs! Same to you and yours!
Oh, Nicci. That is so hard. (I'm sure harder on you and the hubs than the kiddo; kids adapt.) I was the weirdo with the allergies, mostly to animals, deathly allergic to horses (and we had 2). My super respected and totally mean pediatrician said I would outgrow them. (He also said my asthma was psychosomatic...the asshat; didn't have an inhaler until I was 16). For some (wool, fresh cut grass), I did grow out of. Then, others came about. Like an anaphylactic reaction to aspirin and all its products when I was in my 20s (which is basically everything but Tylenol and opiates, and opiates make me barf). Also, it was fun to learn I'm allergic to buckwheat (and so are a lot of folks, but no one ever talks about that, just have buckwheat pancakes or pizza crust if you're gluten-free!). Now, I'm dairy-free, egg-free, grain-free, caffeine-free, nut-seed-and-legume-free, and my allergies are better. (When I decide I can have some nuts, because cashews, or seed flour, because cookies, or gluten-free fare, because bread, I end up paying for it. Snotty's not just an attitude and sinus infections aren't fun.) I believe what we do to our food (all the GMO-ing) is part of the prob. All the cross-contamination only makes it worse. I hope we will get better about this, because these allergies and intolerances are only getting more common. I'm so sorry you all had to go through this, so glad you are coming out the other side. You must be a wonderful support for those just starting this path. xo
I love this piece. It’s fascinating to simply follow your “journey” (what a tired word; wish I had a better one) through the years of worrying, thinking you’d hit on the solution, realizing you hadn’t, worrying, thinking and on and on. But it’s not just fascinating. It’s emotionally gripping. And it’s so very true--the things in our lives that begin seeming impossible, that disrupt our lives completely, and that over time become part of our everydayness. I’m trying to get to the “mundane” part with aspects of aging that currently seem unacceptable--but of course, can’t be changed--and that I have to learn to live with. Your story is a great reminder that I can do it. Not a happy ending, perhaps, but one that can be lived with!
Like so many things in life. Once we stop fighting and allowed these things to slide into the everyday, we became happier. Not complacent, mind you, but accepting and happier.
Nicci, again, what can I say that isn't redundant? I was thinking just this morning how draining and expensive and frustrating it is to accommodate dietary restrictions.
Two of my children have confirmed dairy intolerance. I am the most complicated in the family and am finishing week 3 of an extreme elimination diet because of the symptoms you describe your daughter having, mostly throat congestion, coughing, a constant tickle.
I've already done no gluten, dairy, or refined sugar for years after my first autoimmune diagnosis. (I suspect there is another.) Now I've deleted corn, soy, peanuts, and eggs, too.
Plus all the detox supplements.
Ugh.
You are not isolated in your exhaustion. Like you, I'm used to bringing my own food to social gatherings and coolers of my own food on family road trips. Plus, I purchase special snacks for my DF kids for school, and no one gets the school hot lunch. So yeah. Lots of meal planning.
Yikes. Yes, even the most extreme diets don't always account for corn allergy/intolerance. It really is absolutely everywhere. I'm sorry you're dealing with it too. Can't hurt to ask your doctor about eosinophilic disease--can be confirmed by endoscopy, which is annoying and invasive but also confirm the diagnosis so you can begin treatment. And if it's not that, I hope you figure out what it is, and quick. All the hugs to you!!!
Thanks, Nicci. I had an endoscopy a couple of years ago, and they did not discover anything clinically significant. I assume this diagnosis comes from a GI specialist?
Yes and she’s one of the top eosinophilic disease docs. She works at Boston children’s, which has a whole eosinophilic disease clinic. It’s been a lifesaver
I've heard a lot of raving reviews about Boston's health care system, including for the management of the rare disease my daughter has, Apert syndrome.
Beautiful essay. My daughter also struggles with food sensitivities and for a time, I was on an elimination diet while nursing—to put it lightly, it fucking sucks! Kudos to your commitment to grind your own flour and spend $400 on groceries at Whole Foods—it's a true testament to the love and devotion you have for your child(ren).
Man, it really does suck, doesn’t it?! Seeing your name reminded me I owe you an email! It’s been quite a week. Will send asap, by Monday at the latest?
No worries! And if my nutritionist hadn't been such a sweet person, I would have kindly told her to screw off when she asked me to try eliminating nightshades (in addition to the 3920502 things I wasn't allowed to eat). 90 days without chocolate is too long!
My heart was in my throat just reading this. What an ordeal! You and your husband have to take so much credit for keeping at it in order to give your daughter a normal life. Would you be where you are now, almost to the finish line, without all of those steps in between?
All that preliminary work has brought you to the people who might finally have solved the mysteries. I hope you all can rest easy now and enjoy the days ahead.
Your dedication to your daughter's health is heartening and inspiring. Thank you for sharing this.
Thanks so much. And we are now in a position to help others going through similar ordeals, and I'm so thankful to be able to offer that comfort.
Even better! ❤
Wow Nicci, what a beautifully honest memoir of parenting a young child with specific needs. Thank you for opening my eyes to what you and yours have endured. You're a good one, you are.
Awwww. Thank you. Likewise!!
I felt this on so many levels, Nicci. I also have a similar draft in writing, albeit with my family’s much different story. You’re right, though, that everyone’s dealing with their own version of having to figure out how to deal with something. And we’re all better than we realize at being resilient. But damn, it’s tough when you’re in it. It’s lonely because not many people truly get it, even those who are close to you and really care.
That's very true. The people who try hard and really want to understand, we really appreciate, but in a way it makes it that much harder because it's that much more frustrating when they can't get it. Before I was a parent, I never realized how eternal everything seems when you're in the thick of it. Sending love and hugs to you and your family!
Then they say, “Let me know how I can help.” And now that’s another thing you’ve got to think about and consider their feelings around in the midst of dealing with the more acute issues going on at home. It’s tough all around.
Thank you for the love and hugs! Same to you and yours!
💯
It’s easier to just handle it myself.
Oh, Nicci. That is so hard. (I'm sure harder on you and the hubs than the kiddo; kids adapt.) I was the weirdo with the allergies, mostly to animals, deathly allergic to horses (and we had 2). My super respected and totally mean pediatrician said I would outgrow them. (He also said my asthma was psychosomatic...the asshat; didn't have an inhaler until I was 16). For some (wool, fresh cut grass), I did grow out of. Then, others came about. Like an anaphylactic reaction to aspirin and all its products when I was in my 20s (which is basically everything but Tylenol and opiates, and opiates make me barf). Also, it was fun to learn I'm allergic to buckwheat (and so are a lot of folks, but no one ever talks about that, just have buckwheat pancakes or pizza crust if you're gluten-free!). Now, I'm dairy-free, egg-free, grain-free, caffeine-free, nut-seed-and-legume-free, and my allergies are better. (When I decide I can have some nuts, because cashews, or seed flour, because cookies, or gluten-free fare, because bread, I end up paying for it. Snotty's not just an attitude and sinus infections aren't fun.) I believe what we do to our food (all the GMO-ing) is part of the prob. All the cross-contamination only makes it worse. I hope we will get better about this, because these allergies and intolerances are only getting more common. I'm so sorry you all had to go through this, so glad you are coming out the other side. You must be a wonderful support for those just starting this path. xo
Thanks so much and yuck to all those allergies. I’m so glad you’ve found what works to make you feel better!
So well written and very touching. Thank you for the open, honest share.
Thank you, Jon, for reading!
I love this piece. It’s fascinating to simply follow your “journey” (what a tired word; wish I had a better one) through the years of worrying, thinking you’d hit on the solution, realizing you hadn’t, worrying, thinking and on and on. But it’s not just fascinating. It’s emotionally gripping. And it’s so very true--the things in our lives that begin seeming impossible, that disrupt our lives completely, and that over time become part of our everydayness. I’m trying to get to the “mundane” part with aspects of aging that currently seem unacceptable--but of course, can’t be changed--and that I have to learn to live with. Your story is a great reminder that I can do it. Not a happy ending, perhaps, but one that can be lived with!
Like so many things in life. Once we stop fighting and allowed these things to slide into the everyday, we became happier. Not complacent, mind you, but accepting and happier.
Nicci, again, what can I say that isn't redundant? I was thinking just this morning how draining and expensive and frustrating it is to accommodate dietary restrictions.
Two of my children have confirmed dairy intolerance. I am the most complicated in the family and am finishing week 3 of an extreme elimination diet because of the symptoms you describe your daughter having, mostly throat congestion, coughing, a constant tickle.
I've already done no gluten, dairy, or refined sugar for years after my first autoimmune diagnosis. (I suspect there is another.) Now I've deleted corn, soy, peanuts, and eggs, too.
Plus all the detox supplements.
Ugh.
You are not isolated in your exhaustion. Like you, I'm used to bringing my own food to social gatherings and coolers of my own food on family road trips. Plus, I purchase special snacks for my DF kids for school, and no one gets the school hot lunch. So yeah. Lots of meal planning.
It's a time tax, to be sure.
Yikes. Yes, even the most extreme diets don't always account for corn allergy/intolerance. It really is absolutely everywhere. I'm sorry you're dealing with it too. Can't hurt to ask your doctor about eosinophilic disease--can be confirmed by endoscopy, which is annoying and invasive but also confirm the diagnosis so you can begin treatment. And if it's not that, I hope you figure out what it is, and quick. All the hugs to you!!!
Thanks, Nicci. I had an endoscopy a couple of years ago, and they did not discover anything clinically significant. I assume this diagnosis comes from a GI specialist?
Yes and she’s one of the top eosinophilic disease docs. She works at Boston children’s, which has a whole eosinophilic disease clinic. It’s been a lifesaver
I've heard a lot of raving reviews about Boston's health care system, including for the management of the rare disease my daughter has, Apert syndrome.
Happy to put you up if you ever need to come out!
Awww thank you!
Really a great piece. I was around d and knew it was bad, but had no idea how bad!!
Thank you! 💖 Yeah we didn’t advertise how tough it was at the time but it was like looking up from the bottom of a well.
Beautiful essay. My daughter also struggles with food sensitivities and for a time, I was on an elimination diet while nursing—to put it lightly, it fucking sucks! Kudos to your commitment to grind your own flour and spend $400 on groceries at Whole Foods—it's a true testament to the love and devotion you have for your child(ren).
Man, it really does suck, doesn’t it?! Seeing your name reminded me I owe you an email! It’s been quite a week. Will send asap, by Monday at the latest?
No worries! And if my nutritionist hadn't been such a sweet person, I would have kindly told her to screw off when she asked me to try eliminating nightshades (in addition to the 3920502 things I wasn't allowed to eat). 90 days without chocolate is too long!