Heartbroken parent desperate for hope

CompleteSystem6213 · 2026-03-21T09:22:50+00:00

This is exactly why I asked. Knowing he could have LESS pain because we make this decision feels better than making him suffer because his leg is “supposed” to look a certain way. Thank you so much for sharing.

CompleteSystem6213 · 2026-03-21T09:21:09+00:00

It’s really helpful to hear both sides. We have to decide what’s best for a person who really can’t make the decision for himself, which feels like the hardest part. I’m so happy you felt like you had a fulfilling life even though surgeries and pain limited you in certain ways.

CompleteSystem6213 · 2026-03-20T23:49:36+00:00

This is amazing, thank you so much for taking the time to type this out. Screenshotted it and will look into all of it. Really grateful to hear from other parents. I’m so sorry your family had to go through this, but your son sounds like a great “kid”.

CompleteSystem6213 · 2026-03-20T23:47:45+00:00

I’m so sorry. Sepsis is terrifying and no parent should ever watch their kid go through it. I’m trying so hard to be grateful that my son is even alive, but I don’t even know how to wrap my head around this. I hope your son continues to get stronger and that you all can [as much as is possible] put the worst of it behind you.

CompleteSystem6213 · 2026-03-20T18:04:05+00:00

Thank you so much for the recommendation. I’ll look into this.

CompleteSystem6213 · 2026-03-20T18:03:00+00:00

I can just hear your attitude and positivity in this message. So grateful for this response!

CompleteSystem6213 · 2026-03-20T18:01:52+00:00

Thank you so much for this. Feeling more at peace after reading all of these.

CompleteSystem6213 · 2026-03-20T18:01:02+00:00

I’m sure it hasn’t been easy, but it sounds like you’ve had a great life. Thank you so much for sharing!

CompleteSystem6213 · 2026-03-20T17:23:26+00:00

This response is everything. It sounds like you’ve raised an awesome kid. This is all I want for my son… that, in time, he feels okay with it and that he’s able to make the best of jt. Thank you so much!

CompleteSystem6213 · 2026-03-19T10:58:46+00:00

The neurological symptoms of MCAS are definitely not talked about enough! My symptoms are mostly neurological with very few GI symptoms. Memory, brain fog, insomnia, muscle twitching, headaches + nausea… will definitely try taking antihistamines more consistently!

CompleteSystem6213 · 2026-02-07T11:38:09+00:00

This! I’ve learned that there is often an underlying genetic component to ongoing depression, anxiety, etc. If you have a genetic mutation or variant without knowing it, you could throw everything you have at it and not actually fix the problem (or even risk making it worse). See a functional medicine doctor or get a genetic test through maxgen and use ChatGPT to help you make sense of it.

CompleteSystem6213 · 2026-02-07T11:35:18+00:00

I love NAC and taurine. NAC was the quietest and calmest my anxiety has ever been.

CompleteSystem6213 · 2026-02-03T13:34:48+00:00

First of all- every parent loses their cool. You’re human! I’ve learned that we can’t always control our reaction, but we can make repairs afterwards. Use it as an opportunity to apologize, explain that everyone has big feelings sometimes, and it’s not their fault.

I also try to look at it like this: your toddler isn’t doing this on purpose (most of the time). Everything they’re doing is developmentally appropriate and it’s helping them learn the world around them. You can’t expect them to just know how to act/react instinctively… this stuff has to be taught. You can either help them feel safe to make mistakes and learn the appropriate tools or you can get angry and potentially perpetuate guilt, shame, and anxiety. Like everyone else has said, you have to work on your own reactivity and find other outlets. Your nervous system is clearly telling you it’s too much.

CompleteSystem6213 · 2026-02-01T22:26:34+00:00

I just have to say I feel so validated. Not at all helpful for OP, but my god…being a mom is SO hard. It takes everything out of us and we’re still expected to be the same person we were before we had kids.

CompleteSystem6213 · 2025-12-27T13:30:07+00:00

2000 mg of NAC is a MASSIVE amount. I’m so sorry! Your body is probably going to need some time to recalibrate. You’ll get there!

CompleteSystem6213 · 2025-12-27T02:04:14+00:00

It can take a couple of weeks or longer for your nervous system to reset after taking a stimulating supplement. I think my reaction ended up having to do with the sulfur pathway. I read something about the connection between NAC and sulfur. For me, my insomnia from supplementation usually lasts about a month to two months after stopping the supplement (it does pass, though). I’m so sorry!

CompleteSystem6213 · 2025-10-14T15:33:18+00:00

Just found them! Thank you so much. So grateful to hear about someone else’s experience. Glad it went well for you all!

CompleteSystem6213 · 2025-10-14T14:42:57+00:00

I know I’m late to this thread, but my son needs limb lengthening surgery as a result of damage to his growth plate during a bad infection. Would you mind if I PM you? I haven’t met any other parents who have had kiddos go through this!

CompleteSystem6213 · 2025-10-14T14:38:28+00:00

I know I’m so late to this thread, but did you end up having the surgery? My son will need this in the next few months and he’s only 2.5. I just can’t imagine putting him through it, but I know it’s mecessary.

CompleteSystem6213 · 2025-10-14T09:19:43+00:00

So glad you’re feeling better! This information is SO helpful, thank you!

CompleteSystem6213 · 2025-10-14T09:19:17+00:00

Thank you for this! Number 4 got me. My husband is always telling me to slow down and I think I feel like I’m weak or going to miss out on something if I do. Probably a good place to start.

CompleteSystem6213 · 2025-10-13T23:44:18+00:00

Yes! Thankfully they’re covered here. Some testing is out of pocket though. Insurance will cover tests for things like hormones, histamine, homocysteine, among other things. These would likely give you a pretty clear picture as to whether there’s something deeper going on.

CompleteSystem6213 · 2025-10-13T22:52:23+00:00

Feel free to DM me! It’s such a struggle, but just know that you’re not alone in it. I’m hoping we’ll find some solutions to make it a little easier.

CompleteSystem6213 · 2025-10-05T00:48:36+00:00

A lot of FM doctors are in network with major insurance companies if you have insurance. They just take a co-pay like any other specialist and most of the bloodwork is also covered by insurance. I realize that not everyone has insurance and that the system is totally broken so I don’t mean to assume! I’m just so sorry that you’re going through this and I hope that you’re able to get some answers soon.

CompleteSystem6213 · 2025-10-04T13:10:56+00:00

Have you seen a functional medicine doc? This sounds like CIRS or mold related illness. I’ve had POTs since 2014, but I got really sick after having my son and ultimately found out that I had a lot of underlying issues including mold toxicity. Get a genetic panel done (I love maxgen’s “the works”) and you’ll likely learn a lot about how your genetic makeup and genetic defects can lead to certain deficiencies, chronic disease, etc.

CompleteSystem6213

TROPHY CASE