u/Apprehensive_Care684

We recently uncovered my daughters Chiari (awaiting follow up appt with neurosurgeon after full MRI to know extent of what we’re dealing with). She’s 4.5, has suffered from the Chiari headaches at back of neck followed by nausea since she was 2ish. She’s now able to name “regular” frontal headaches, that are happening much more regularly with the heat, and are more manageable with Motrin. I’m wondering now, after seeing how much happier and overall lighter she seems after taking the Motrin, if she may be suffering from low grade headaches all the time but may not necessarily realize it because it’s her baseline (just noticing how different she seems with Motrin). Anyone else wonder this with their kids dealing with chiari? Taking daily Motrin feels overkill, but also just wanting to do all the things that can help my daughter have a better quality of life. She doesn’t seem miserable by any means in her day to day, and perhaps we’d all feel better with a little daily ibuprofen, but just noticing this and curious if others have wondered the same.

Hey all, my 4.5 yr old was just diagnosed after nearly 2 years of what we now know were chiari headaches. She’d grab the back of her neck in such pain, then almost immediately grab her belly, say “my neck hurts my belly hurts!” and throw up within minutes. She’d then get super lethargic and pretty much pass out for an hour (or the whole night if it happened near bedtime), then wake up totally fine. Docs didn’t give us much at all, suggested acid reflux or other off suggestions, but mostly brushed it off bc they were so intermittent (at most once a month) and she was fine outside of those episodes. We finally got in with a neurologist and got a Fast MRI and confirmed chiari 1. We’re now waiting for full spinal and brain MRI work up, and referred out to a neurosurgeon.

I know she’s going to be okay. I’ve read through what feels like hundreds of these threads now. But it’s just terrifying to sit in what feels like this floating in between—knowing something’s going on, but not knowing the extent of it, while having my active funny strong healthy girl right in front of me, mostly okay. Tonight, she got hit with one of the occipital headaches (which have become more of our norm), first one since our diagnosis last week, and it just broke me more than any other one. She’s been having them for so long, but to now know what’s actually happening — just imagining her little brain and skull and spine going through so much back there while she winces in so much pain. It’s just so brutal to watch and to know whats actually happening, and I know it’s treatable, but it’s also so heartbreaking to know that these really serious parts of your tiny human are not doing what they’re supposed to be doing. It almost feels harder watching her go through these episodes after having this diagnosis, even though I know having this diagnosis now can only help us help her better—even if it’s surgery (which terrifies me)—if it means she doesn’t have to have a lifetime of these.

Ugh. Thanks for listening if you’ve made it this far. Just a sad terrified parent that just wants my baby to be okay and not have to have a harder life than life already will give. I know things should only get better from here, and there are so, so many worse things this could be—just so hard to watch her go through this and know it’s actually something going on.

Not sure what i need or am asking for with this post. Maybe just some stories from other parents, or adults who went through this as a kid and can speak to the other side, and/or things your parents did for you to make any of it easier. Or virtual hugs. Sending love to all of you going through this, personally or watching/supporting your loved ones going through it.

We heard rule of thumb is to wait for four consecutive nights above 50 degrees, which will happen this week. But now seeing next week might have lows at 49. Too soon to plant or go for it? (We’re planting in raised beds—tomatoes, cukes, cilantro, peppers, lettuce and basil are our primaries).

I’ve been dealing with what’s felt like low grade depression and anxiety for some time but have felt like I’ve masked it well enough (and medicated my anxiety), but was having a pretty sulky feeling day. I was getting reflective and a bit worried about what my daughter (4.5 yo) has picked up on, and asked her what feeling she thinks mommy feels the most. Without hesitation, she said “mad”. I was so taken aback by that that I almost guffawed and said mad?! And she quickly changed it to happy and then didn’t really want to elaborate or say more. I did all I could to stay just neutral in my response after that and told her it’s okay if she thought that, and she said again she thought that was what I felt most. I tried to pry a little more to see what or who she thought made mama mad, and she said “no one”, which was a massive relief that she didn’t say herself, but fack!!!! That was such a rude awakening to just my short fuse that must be my baseline. It never gets big, but is clearly this incessant nag that feels like mad to her. I told her I’m never mad at her, and sometimes grownups feel something called stress that’s often related to work and other things that can make them grumpy.

My eyes just filled up as I started brushing her hair and she couldn’t see me, and quickly pulled it back together after that til I finished bedtime. Just so sad and mad at myself that I’ve been so unaware of my own presence that my tiny daughter could so quickly identify mad as my primary emotion.

No particular ask here other than some reality checking of myself, solidarity for how hard it is to mask (and how bad we are at it, clearly), and just see if anyone else resonates with this and has found ways to not just completely internalize this and feel like you’re just f*cking up so much more than you realized :(

I know there’s a lot of threads on here re:friendships dwindling and not sure if I’ve found any that feel like what I’m experiencing, so throwing a shot in the dark here to see if this resonates with others. I’m not sure if peri has affected me way more than I’ve realized, but just coming to the conclusion that I feel like I fell asleep and woke up and realized how few solid friendships I have left around me.

I’ve been one that was always deeply ingrained in big beautiful friend groups. I still have my closest friends from growing up, high school, and many beyond that. But the crew that I’ve had locally where I live now (last 15 yrs), seems to have just dwindled, but I feel like I’m the one left out. I’m trying to be as reflective as I can around what I could have contributed to this, but I also know I’m a very kind and caring friend that has always shown up and is generally fun to be around. Anxiety’s always plagued me and I’m wondering if I just thought I was masking really well and people just got tired of personality attributes of mine that I just am not aware of. COVID and a string of miscarriages didn’t help that, and I’m wondering if I got more “weird” than I realized and I really isolated myself through that time more than I realized, and not realizing how much social pieces I ended up missing that eventually just dropped me out.

Im just feeling sad. Seeing these dear friends that I’ve been so close with for so long, seem so far away now. I keep reaching out, but it just seems like I’m the only one. I always wonder what would happen if I stopped reaching out; would I ever see these friends again?

As much as I’d love to bring it up with these friends, I feel like I’ve just let it go on for too long now that it’s moot at this point. Maybe my personality really has changed, peri has played more of a part than I know (maybe even in my overthinking about this), and I’ve just drifted too far to come back to each other. I just wish there was a ChatGPT prompt that can go into my soul and psyche and tell me what I’m doing that’s making so many friends drift away.

Anyone else feel similarly in this boat? Are we all just in the same boat (including these friends) and we’ll all re-find each other again? Or is it just time to accept the end of these significant relationships?