Good fucking job, Megan, I’m proud of you. except I hate the word proud because it implies some kind of hierarchy. Let me say this, I'm always impressed and in awe of you!
As for taking the holistic route, GOOD FOR YOU! I went through a severe cat allergy in my 20s and the doctors pumped me with meds and those meds caused major major long term issues for over a decade. It took 10+ years to get my body to behave again. As a result, I've been 100% pharmaceutical free for over 20 years. It may be really hard now, and it is totally worth it because you are teaching your daughter about how to take ownership of her health at the core level. In not listening to the doctor who never took the time to actually see you, you are teaching her to stand up for herself and own that she knows herself and her body better than anyone else because she lives in it!
You get that mold detoxed and she learns healthy lifestyle living and listening to her body and she will get through this. I don't know how I know, just my spidey-sense aura reading...I can tell that this isn't permanent. She will not live with this the rest of her life. Rather, she will learn to manage it, and when it does flare up she will see it as a sign that her life is too stressful and she needs to take action to take care of herself. That's awesome momming if you ask me.
Oh my friend, you are giving me allllllll of the full body chills right now. 🥹😭✨🫶
I am soaking up every word of this, and am clinging to the part where you sense she won’t have this forever. 🙏🙏🙏🙏🙏
AND— your journey to healing is so so so inspiring to me. And it really does go a long way to encouraging me on this/Amelia’s journey, too. We are on the path to healing. 💕
This isn’t just a spidey sense. It’s deep in me. I really don’t think this will be a long term problem for her. She will figure it out. You have to trust that. Any “chronic illness” can be managed if you have the right attitude and perspective and belief. I know you are giving her that.
I *knew* there was something incredibly special and unique about you from the very first letter you published here.
I would never, I am I mean EVER, judge you for holistic treatment for Amelia, my parents raised us with homeopathic remedies and while I am ashamed to admit I have not clung to the diet they brought us up on, I have the knowledge. And when I need it, I know how to heal (for the most part).
The good freaking lord sees you. There is purpose in all these tests. You are passing with flying colors.
Like Teri said above, we are impressed and inspired by you Megs. ✨
Take up the fucking space. You are opening the door for us to do the same. Standing ovation from your cheer squad in the back. 🎊🎊🎊🎊🎊🎊🎊🎊🎊🎊🎊🎊🎊🎊
Look at you, still working, still writing. I’m proud of you Megan, and I don’t know you from Adam. While I was reading that I tried to imagine making my picky son go on the full Keto regimen. Yeah, NO.
Good luck and don’t let people give you grief about going holistic. It seems very sensible in your situation.
You're doing a great job in an impossibility hard situation. I hope you have ways, in addition to your writing, to access mental and emotional support. It is a lot! Rooting for you!
Thank you so very much!!! 🥹🙏 And I really appreciate you calling out the importance of mental and emotional support. I don’t have enough of it, and it’s reminders like this that nudge me to seek it. Thank you. 🥹
Okay, point number 1, good job on the keto/non processed diet. I'm glad you stuck to you guns. Although, you might want to add a little medication as well to get them down to zero. Which brings me to point number 2, can you not go to a different neurologist? Ask for a second opinion? Here in Canada, the neurologists will prescribe a keto diet (I work in a resource centre at a children's hospital). How often does she go to the doctor for monitoring? Keep up the good work!
Thank you so much for your comment!! 💛🙏 I’m really hoping to avoid meds however, I’m not going to completely rule them out in the future if they progress/go up. And, I know…I’d love to get a second opinion but insurance is SUUUUCH a pain in the ass and I’m not even sure how many in network options I have, and with how everything went with the first neurologist I just feel so defeated by the thought of it hearing that again a second time. But, we’ll see. If anything negatively changes with her I’d definitely go back or find a new one, but right now just yearly checkup.
Tough to get kids to cooperate even when they know it’s for their own good. She won’t be able to drive if she’s having seizures. Does she know that? Might be a motivating factor.
Sooooo tough. 🥲 And I’ve been so on the fence with how much to talk to my daughter about what’s at stake if these continue, because I don’t want to terrify her or make her think she’s at fault for them. However, as time has gone on, and she’s now 9 I have started having gentle talks with her about what’s at stake with these seizures. And the fact that she can’t drive if she has them. I honestly don’t think it truly sinks in for her, but… maybe it will. And I agree could definitely be a positive motivating factor. 💛💛💛
Mama, you.are.INCREDIBLE! I cannot even imagine how you feel being faced with not only the added external stressors (fuck Murphy's Law...asshole), but having the immense pressure of doing the RIGHT thing for your daughter. I honestly think you are an damn amazing mom and thank God your daughter has YOU as her advocate. Trusting the medical industry is hard, especially when the first thing a Dr. does is write you a script for some random medication as if they just took your order at a diner. It can be infuriating. I hibestly think that no matter what route you would have or do end up following, you would always second guess your decsison. Who doesnt want what's the absolute best for their loved ones or kid?
Although you are the ONE person your daughter and you have to rely on, I hope you know that you've built a community (albeit, virtual) that stand behind you and supports you through this absolute shit of a time in your lives. I'll save you the lines I want to tell you (it will work out, You'll get through this,), but I will say that never apologize for sharing your feelings here. This sounds like your outlet of sorts and in some ways, your sanctuary. Fuck it. Do whatever you want on here. But also, as hard as it may get and as shitty of a person/mom you may feel you are - know that you aren't (shitty, i mean). You're human going through a very u fair situation and your dealing with it like a BaddAss! So remember to give yourself grace - even just a kernel - always. Sending you the biggest, warmest, feels like your getting a mammogram, longest hug ever.
😭😭 ALLLLLLLLL the full body chills from your words. Thank you sooooo much for reading this, and being here, and seeing me. Your comment seriously means SO SO SO much. 🥹 It’s been tough AF navigating my daughters health and the “healthcare” system, and your message is so soothing. 🙏
Writing here has been SUCH a beautiful outlet, but sometimes I 100% get in my head and wonder if I’m over burdening people with my burdens, you know? So your affirmations are taken directly to my heart. 💛💛💛 And so, I shall keep writing, because it truly is one of my most favorite things in the world. And to know that my words can make others feel less alone and build an amazing community? GOOD GOD THIS FEELS LIKE MAGIC!!! 💕
And— “Sending you the biggest, warmest, feels like your getting a mammogram, longest hug ever.” ARE YOU KIDDING ME THAT IS AMAZING!!! 😂💕 Thank you so much. 🙏
I developed severe migraines in my 20s, and my neurologist was not helpful at all. Meds made me worse. Years of nothing helping me until I cut out wheat on my own. Excited, I told my neurologist the news, and she said that nutrition has nothing to do with my migraines. That was my last appointment with her.
I totally understand not getting to eat whatever I want anymore, and seeing others eat all the best foods. And I totally understand why you are taking a holistic approach.
OH MY GOD— she told you nutrition has nothing to do with it even AFTER you told her cutting out wheat finally helped?!?! ← me, losing my shit on behalf of you and that neurologist. 😖 Just insaaaaane.
I don’t get migraines often but the times I have had them have been AWFUL, so I completely sympathize with you. 😥 Sooo glad you found a way to help them!
Here’s to listening to our bodies, seeking out what we need, and crying over the foods we want but shouldn’t have. 😭😂💕
We are all cheering you on Megan 👏 Managing all this on your own is a HUGE undertaking. I hope you and Amelia get some much needed R&R over the holidays. Sending love ❤️
We don't know what we don't know, and you've been so diligent in researching everything to help your daughter. I hate the medical establishment as a whole in the U.S., with very few exceptional doctors, nurses, and FNPs,PA's etc. You have to go with your gut, and try everything non-pharmacological before resorting to meds. As for the diet and lying about eating when she's not with you? You really can't do much but hope that as she matures, she can see the value in eating clean to help with her symptoms. Keep searching to find foods that she will enjoy and put the emphasis on that. Meal time fights lead to all kinds of issues around food and are to be avoided. I'm really hoping that awareness comes soon for you both. Keep going, you're a great mom.
💛💛💛 Thank you so much for being here!!! Your comment is so soothing. 💕 I absolutely have to go with my gut, even when the medical establishment as a whole fights soooo hard against it. 😭 And YES, I am praying that as she matures she will understand (please god, soon) that what we eat truly impacts us, and that I’m not being a mean mom for not letting her eat certain foods as we seek healing for these seizures. 🥲🙏
Good fucking job, Megan, I’m proud of you. except I hate the word proud because it implies some kind of hierarchy. Let me say this, I'm always impressed and in awe of you!
As for taking the holistic route, GOOD FOR YOU! I went through a severe cat allergy in my 20s and the doctors pumped me with meds and those meds caused major major long term issues for over a decade. It took 10+ years to get my body to behave again. As a result, I've been 100% pharmaceutical free for over 20 years. It may be really hard now, and it is totally worth it because you are teaching your daughter about how to take ownership of her health at the core level. In not listening to the doctor who never took the time to actually see you, you are teaching her to stand up for herself and own that she knows herself and her body better than anyone else because she lives in it!
You get that mold detoxed and she learns healthy lifestyle living and listening to her body and she will get through this. I don't know how I know, just my spidey-sense aura reading...I can tell that this isn't permanent. She will not live with this the rest of her life. Rather, she will learn to manage it, and when it does flare up she will see it as a sign that her life is too stressful and she needs to take action to take care of herself. That's awesome momming if you ask me.
Oh my friend, you are giving me allllllll of the full body chills right now. 🥹😭✨🫶
I am soaking up every word of this, and am clinging to the part where you sense she won’t have this forever. 🙏🙏🙏🙏🙏
AND— your journey to healing is so so so inspiring to me. And it really does go a long way to encouraging me on this/Amelia’s journey, too. We are on the path to healing. 💕
Thank you, thank you. 🥹
I got your beautiful holiday card today! You and your little one are so amazing!!!
Omg yay!!!! Thank you, all the warm fuzzy feels. 🥰🥰🥰
This isn’t just a spidey sense. It’s deep in me. I really don’t think this will be a long term problem for her. She will figure it out. You have to trust that. Any “chronic illness” can be managed if you have the right attitude and perspective and belief. I know you are giving her that.
Amen. 🙏💕
Terri I am impressed & in awe of you!! I completely agree we need to throw away the word “proud” we are not pompous bitches.
proud and pompous have that same ick energy.
I could not agree MORE!! You nailed it.
I *knew* there was something incredibly special and unique about you from the very first letter you published here.
I would never, I am I mean EVER, judge you for holistic treatment for Amelia, my parents raised us with homeopathic remedies and while I am ashamed to admit I have not clung to the diet they brought us up on, I have the knowledge. And when I need it, I know how to heal (for the most part).
The good freaking lord sees you. There is purpose in all these tests. You are passing with flying colors.
Like Teri said above, we are impressed and inspired by you Megs. ✨
Take up the fucking space. You are opening the door for us to do the same. Standing ovation from your cheer squad in the back. 🎊🎊🎊🎊🎊🎊🎊🎊🎊🎊🎊🎊🎊🎊
😭😭 Alllll the heartfelt chills you have given me, Miss K!!!!! 💕😭🫶
Thank you, thank you, thank you for seeing me, not judging me, and encouraging me. What a gorgeous gem you are. 🙏
And, YES TO EVERYONE TAKING UP ALL THE SPACE. 🥹✨🥹✨🥹✨🥹✨
Look at you, still working, still writing. I’m proud of you Megan, and I don’t know you from Adam. While I was reading that I tried to imagine making my picky son go on the full Keto regimen. Yeah, NO.
Good luck and don’t let people give you grief about going holistic. It seems very sensible in your situation.
🥹 Thank you so much, Beth!!! Really appreciate your support! 🙏 Hugs to you 💛 💛
You're doing a great job in an impossibility hard situation. I hope you have ways, in addition to your writing, to access mental and emotional support. It is a lot! Rooting for you!
Thank you so very much!!! 🥹🙏 And I really appreciate you calling out the importance of mental and emotional support. I don’t have enough of it, and it’s reminders like this that nudge me to seek it. Thank you. 🥹
Okay, point number 1, good job on the keto/non processed diet. I'm glad you stuck to you guns. Although, you might want to add a little medication as well to get them down to zero. Which brings me to point number 2, can you not go to a different neurologist? Ask for a second opinion? Here in Canada, the neurologists will prescribe a keto diet (I work in a resource centre at a children's hospital). How often does she go to the doctor for monitoring? Keep up the good work!
Thank you so much for your comment!! 💛🙏 I’m really hoping to avoid meds however, I’m not going to completely rule them out in the future if they progress/go up. And, I know…I’d love to get a second opinion but insurance is SUUUUCH a pain in the ass and I’m not even sure how many in network options I have, and with how everything went with the first neurologist I just feel so defeated by the thought of it hearing that again a second time. But, we’ll see. If anything negatively changes with her I’d definitely go back or find a new one, but right now just yearly checkup.
Tough to get kids to cooperate even when they know it’s for their own good. She won’t be able to drive if she’s having seizures. Does she know that? Might be a motivating factor.
Sooooo tough. 🥲 And I’ve been so on the fence with how much to talk to my daughter about what’s at stake if these continue, because I don’t want to terrify her or make her think she’s at fault for them. However, as time has gone on, and she’s now 9 I have started having gentle talks with her about what’s at stake with these seizures. And the fact that she can’t drive if she has them. I honestly don’t think it truly sinks in for her, but… maybe it will. And I agree could definitely be a positive motivating factor. 💛💛💛
I am proud of you, and there is nothing wrong with researching other options ❤️
Thank you so much, my friend! 🥹💛💛💛
Taking 👏 up 👏 space 👏. (Something I’m still working on.) Proud of you for doing your ABSOLUTE BEST to advocate and take care of your daughter.
Thank you so so much!!! 🥹🙏 Taking up space is so goddamn difficult sometimes, cheering you on so hard to take up all that space, too. 💛💛💛
Mama, you.are.INCREDIBLE! I cannot even imagine how you feel being faced with not only the added external stressors (fuck Murphy's Law...asshole), but having the immense pressure of doing the RIGHT thing for your daughter. I honestly think you are an damn amazing mom and thank God your daughter has YOU as her advocate. Trusting the medical industry is hard, especially when the first thing a Dr. does is write you a script for some random medication as if they just took your order at a diner. It can be infuriating. I hibestly think that no matter what route you would have or do end up following, you would always second guess your decsison. Who doesnt want what's the absolute best for their loved ones or kid?
Although you are the ONE person your daughter and you have to rely on, I hope you know that you've built a community (albeit, virtual) that stand behind you and supports you through this absolute shit of a time in your lives. I'll save you the lines I want to tell you (it will work out, You'll get through this,), but I will say that never apologize for sharing your feelings here. This sounds like your outlet of sorts and in some ways, your sanctuary. Fuck it. Do whatever you want on here. But also, as hard as it may get and as shitty of a person/mom you may feel you are - know that you aren't (shitty, i mean). You're human going through a very u fair situation and your dealing with it like a BaddAss! So remember to give yourself grace - even just a kernel - always. Sending you the biggest, warmest, feels like your getting a mammogram, longest hug ever.
😭😭 ALLLLLLLLL the full body chills from your words. Thank you sooooo much for reading this, and being here, and seeing me. Your comment seriously means SO SO SO much. 🥹 It’s been tough AF navigating my daughters health and the “healthcare” system, and your message is so soothing. 🙏
Writing here has been SUCH a beautiful outlet, but sometimes I 100% get in my head and wonder if I’m over burdening people with my burdens, you know? So your affirmations are taken directly to my heart. 💛💛💛 And so, I shall keep writing, because it truly is one of my most favorite things in the world. And to know that my words can make others feel less alone and build an amazing community? GOOD GOD THIS FEELS LIKE MAGIC!!! 💕
And— “Sending you the biggest, warmest, feels like your getting a mammogram, longest hug ever.” ARE YOU KIDDING ME THAT IS AMAZING!!! 😂💕 Thank you so much. 🙏
I love love love your Substack! ♥️‼️
Smiling so big right now! YAY. 😁🥰🙏
Thank you Megan! ♥️‼️
Thank you for being here!!! 🥹🫶
Dang woman, you are one tough cookie.
You are doing a fantastic job!
I developed severe migraines in my 20s, and my neurologist was not helpful at all. Meds made me worse. Years of nothing helping me until I cut out wheat on my own. Excited, I told my neurologist the news, and she said that nutrition has nothing to do with my migraines. That was my last appointment with her.
I totally understand not getting to eat whatever I want anymore, and seeing others eat all the best foods. And I totally understand why you are taking a holistic approach.
Thank you sooo much, Sam!!! 🥹💕
OH MY GOD— she told you nutrition has nothing to do with it even AFTER you told her cutting out wheat finally helped?!?! ← me, losing my shit on behalf of you and that neurologist. 😖 Just insaaaaane.
I don’t get migraines often but the times I have had them have been AWFUL, so I completely sympathize with you. 😥 Sooo glad you found a way to help them!
Here’s to listening to our bodies, seeking out what we need, and crying over the foods we want but shouldn’t have. 😭😂💕
Yes to all THIS. Thank you
I know what it is to advocate for a child with an invisible disability - you are doing fantastic! It’s one step, one day, one second at a time.
💛💛💛 Thank you so much for seeing me, Brianna! 🥹🙏 Sending you hugs! 💕
Great job Megan 👏👏👏👏 you’re an amazing mama. Thank you for sharing!
🥹 Thank you so very much Colleen!!!! 🙏💛💛
We are all cheering you on Megan 👏 Managing all this on your own is a HUGE undertaking. I hope you and Amelia get some much needed R&R over the holidays. Sending love ❤️
Thank you so very much!!! 💛💛💛 Looking forward to R&R! Love received 🤗
We don't know what we don't know, and you've been so diligent in researching everything to help your daughter. I hate the medical establishment as a whole in the U.S., with very few exceptional doctors, nurses, and FNPs,PA's etc. You have to go with your gut, and try everything non-pharmacological before resorting to meds. As for the diet and lying about eating when she's not with you? You really can't do much but hope that as she matures, she can see the value in eating clean to help with her symptoms. Keep searching to find foods that she will enjoy and put the emphasis on that. Meal time fights lead to all kinds of issues around food and are to be avoided. I'm really hoping that awareness comes soon for you both. Keep going, you're a great mom.
💛💛💛 Thank you so much for being here!!! Your comment is so soothing. 💕 I absolutely have to go with my gut, even when the medical establishment as a whole fights soooo hard against it. 😭 And YES, I am praying that as she matures she will understand (please god, soon) that what we eat truly impacts us, and that I’m not being a mean mom for not letting her eat certain foods as we seek healing for these seizures. 🥲🙏