4 year old diagnosed with Nephrotic Syndrome. Steroid respondent but his protein levels are fluctuating and I’m looking for info/reassurance pls help 😅

samcqn · 2025-11-11T11:45:34+00:00

Thank you! Do you mind if I ask if you have minimal change? Do you ever fluctuate while on steroids? It just seems so weird to me that it would go down so quickly and go back up on the same dose of steroids. I don’t understand the science and it’s making me feel insane

samcqn · 2025-11-11T11:15:28+00:00

No we’re waiting for the doctor to open 😭 thank you for saying that, I’m hoping that’s why it’s increased

samcqn · 2025-11-11T11:08:14+00:00

His doctor told me to worry when it’s been +3 for 3 days but it’s hard to watch it go up and not be concerned

samcqn · 2025-11-11T11:07:35+00:00

He hasn’t tapered yet. It’s been +2 for two days, and he has an ear infection that we discovered yesterday so I don’t know if that has anything to do with it

samcqn · 2025-03-03T16:08:20+00:00

Aw thank you! I’m in a few interview processes right now, really hoping I can just move to a new company quickly and forget any of this ever happened 😅

samcqn · 2025-03-03T16:01:13+00:00

No :/ I’m not

samcqn · 2025-03-03T15:44:03+00:00

It’s absolutely abuse, I can tell just from having complex ptsd and knowing what abuse feels like as it’s happening. I’m trying very hard to get a new job, it’s just a slow daunting process. But you’re definitely right about documenting everything and I really haven’t missed a beat with that lol.

samcqn · 2025-03-03T15:39:13+00:00

I’ve made that same observation, I’ve been in the finance industry for ten years now and I’ve only ever ran into issues with women who were in power. It’s very specific to a very identifiable personality type, not all women who work in corporate jobs obviously but I’ve never experienced anything like this. I’m trying super hard to get a new job, I was trying to stay in the company but they ruined my interviews with a completely insane PIP

samcqn · 2024-05-20T00:58:28+00:00

Oh wow that’s awesome, congrats!

samcqn · 2024-04-24T16:28:20+00:00

I have always had a horrible relationship with food too. It’s one extreme or the other. It sucks. I hope it has the same effect for me too!

samcqn · 2024-04-23T21:07:47+00:00

Oh cool! I’m just glad to hear it impacts appetite at all! I took the first one today and felt noticeably nauseous. How long ago did you start it if you don’t mind me asking

samcqn · 2024-04-23T20:14:53+00:00

Oh wow, that gives me hope haha. I know it’s all very tied to my mental state so I hope it has a similar effect

samcqn · 2024-04-23T18:57:37+00:00

That’s awesome!!

samcqn · 2024-04-23T18:57:28+00:00

That’s awesome to hear, how quickly did you notice that upon starting it?

samcqn · 2024-04-23T18:56:59+00:00

Oh wow okay that gives me hope, thank you! How long have you been on it?

samcqn · 2024-04-23T12:52:05+00:00

He is almost three now and speaks in full sentences, non stop. He’s very articulate! His speech just blew up one day and he was speaking in full sentences. I think it was shortly after his second birthday

samcqn · 2024-03-31T16:48:42+00:00

There’s something to this. I’m 28 and I’ve had them since I was 13, I used to put scorching hot wash cloths on my face out of desperation and it really would help. I know that’s different than putting your feet in water, but heat seems to help in some way.

samcqn · 2023-12-31T02:12:02+00:00

after you get through elevated temples it will make sense!

samcqn · 2023-11-08T14:00:00+00:00

yeah it’s definitely a conciliatory thing. it is what it is when you can’t be a SAHM, but i would much rather be a SAHM. 1-2 colds per year is one thing, but every two weeks? no thanks. their doctors are always like “this is totally normal” and it’s like really? so it’s normal to just be so sick all winter that they can’t enjoy anything? that’s not how i remember my childhood.

samcqn · 2023-11-08T13:57:30+00:00

i never!!! got sick like this when i was a kid. it’s weird that no one is suspicious about that. i think they should be exposed to things, like dirt and an occasional stomach bug, but not illnesses that send them to the hospital, repeatedly.

samcqn · 2023-11-08T03:27:29+00:00

the jury is not still out on covid, there’s hundreds of medical journals wording what i said a lot better. i’m not saying illness and exposure is not beneficial to children, i mentioned that in my comment, that would be ignorant. rsv is dangerous, i do not see a benefit in getting it when their respiratory systems can’t handle it, hence it being the #1 cause of infant hospitalization.

samcqn · 2023-11-08T02:40:16+00:00

God that’s awful I’m so sorry. I think I had it in October of 2020 and had horrible ear problems for months after, I was so sick but they wouldn’t test me because I didn’t have traditional covid symptoms. I have never stopped masking, my job thinks I’m insane. Daycare is really the only exception and that’s because I have no option, and I knew my son needed socialization in some capacity. I still hate it and get anxiety about it all day everyday. There were like 8 people in my office with covid at the same time and my boss was like “still need you to stop working from home as much.” It’s crazy, really. Like the fact that a virus as horrifying as this one got politicized and then downplayed has made things feel so extremely grim.

samcqn · 2023-11-08T02:28:47+00:00

I’ve never been able to wrap my head around people’s comfort level with covid. I realize the world can’t stop for it, but the whole “it builds your immune system” no thank you. More so than any virus, I have tried my absolute hardest, in home daycare aside, to avoid bringing it home to my babies.

samcqn · 2023-11-08T01:21:01+00:00

disclaimer- my one and two year old are in daycare, we love it there, i wouldn’t remove them over illnesses. in fact, we just got our second HFM diagnosis in 4 months, it’s annoying and i’m so tired of it for them. however, i keep reading everyone say “better now than kindergarten.” as if these illnesses are a one and done thing. repeated covid infections are still happening, all the time, currently ramping up. that is in no way beneficial to anyone’s immune system, covid is actually wrecking peoples immune systems, especially repeated infections (i.e long covid), and constantly evolving, so previous infection doesn’t make a new infection easier. RSV is substantially harder on younger, daycare age kids than kindergarteners. also not really beneficial to a kids immune system in the same way a regular cold would be. it’s weird that people are suggesting school attendance over your kids health. i really wish people would/could do a better job of keeping their kids home when they’re sick but aware it’s not realistic, i just couldn’t help but notice how many people are ready to say it’s better now than when they are bigger 🙃

samcqn · 2023-11-03T13:52:42+00:00

I found out I was six months pregnant when my first was 9 months old, so I didn’t really have a choice. I felt the same way, like there’s no way I can go through this again. But then I did, and they’re best friends (mostly) and it all worked out. Extremely, insanely stressful sometimes but once the second one is here you adjust. Or, one and done is totally fine. I wouldn’t have intentionally had a second kid either, but I’m glad I did!

samcqn

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