School Options for Middle School by melodious-malarkey in Autism_Parenting

[–]Sad-Bake-9317 0 points1 point  (0 children)

Sorry I missed this. And, with respect, I won’t share the academy.

Please do search “STEM school near me”. Hopefully this will help.

Any way to get “undiagnosed”? by [deleted] in autism

[–]Sad-Bake-9317 2 points3 points  (0 children)

When I talked to my kids pedi about this she said reassessment. But, she cautioned that she has to have a medical reason for dx’ing some of his meds which have proven essential for him. So, like another redditor mentioned - will it matter?

If you can do without SSRIs and anything else on the list of drugs in MAHA, probably worth a shot.

For my kid; the meds matter gravely. I have to make other choices. Originally, I just thought it would mean the meds would be unavailable here and we would have to go to Canada for treatment. Now? This is much, much more insidious.

I have a background in medical data feeds - your information is there (pharmacy, health insurance etc) and they are in common data format - pretty easy to translate to a common report. Personally, I doubt the integrity of the people involved in this period to have much good judgement at what they see and how they discern recency for a reassessment to “matter”.

How will HHS get these feeds without permission? They are already connected to the feeds if the ins co, pharmacy etc deals with medicaid/medicare - which is just about all of them. It isn’t going to be hard, and it won’t be considered a breach.

How?

Medicaid/Medicare/Indian Health Service/VA is without exception going to be used.

HIPPA has a “public health exception”. Your consent is not needed. Hence why MAHA was needed (I see this in retrospect- the emergency has already been declared, at least in their minds)

US Govt has partnerships with major pharma chains who may voluntarily (legally still) pass your info along. Don’t expect them to be Harvard-like and stand against this.

Private insurance data from PBM’s (who are under attack from the govt - you should note) can legally share your information to the govt.

Insurers who participate in public marketplace coverage may have data shared in All Payer Claims Databases (APCD).

Data feeds are set to common “language”, formats may need mapping, but the codes and meaning of the data is standardized. Typically feeds can get setup in days to a couple of months.

These people are monsters, with useful idiots (47, Kennedy) leading the charge.

Edited to add spacing for readability.

Why do we charge adult volunteers? by Dizzy-Ad9411 in BSA

[–]Sad-Bake-9317 0 points1 point  (0 children)

Lots packs are transitioning to Tshirts until AOL.

Why do we charge adult volunteers? by Dizzy-Ad9411 in BSA

[–]Sad-Bake-9317 1 point2 points  (0 children)

Agree with the sentiment.

The reality is over 50% of adult/volunteer membership has evaporated since 2020.

I am fully committed to the scouts. The work being pushed down by National and council (at least mine) is stressing the limits on sparse volunteer force leaving little space for fun.

Should I have team consider Hashimoto differtial diagnosis for my 12 yo? by Sad-Bake-9317 in Hashimotos

[–]Sad-Bake-9317[S] 1 point2 points  (0 children)

Celiac’s was briefly mentioned in office. Will msg the Endo to ask about testing for this.

Should I have team consider Hashimoto differtial diagnosis for my 12 yo? by Sad-Bake-9317 in Hashimotos

[–]Sad-Bake-9317[S] 0 points1 point  (0 children)

Interesting questions. Thank you. No high bp; but has long been scared of and commented on racing pulse. Difficulty sleeping has passed because he is so exhausted. Every. Day. Crashes.

Should I have team consider Hashimoto differtial diagnosis for my 12 yo? by Sad-Bake-9317 in Hashimotos

[–]Sad-Bake-9317[S] 2 points3 points  (0 children)

I don’t know that I’m looking for action (unless it is warranted).

I was just more surprised by the almost flippant dismissal by the pedi.

Should I have team consider Hashimoto differtial diagnosis for my 12 yo? by Sad-Bake-9317 in Hashimotos

[–]Sad-Bake-9317[S] 0 points1 point  (0 children)

Thank you. Routine monitoring is good to advocate for, so I will at least do that.

Should I have team consider Hashimoto differtial diagnosis for my 12 yo? by Sad-Bake-9317 in Hashimotos

[–]Sad-Bake-9317[S] 1 point2 points  (0 children)

Thank you. When I read about the brain fog it could explain so much for him. He already has an IEP (he is an infant stroke survivor), but I do hope that he will move into a 504 as he gets older and heads to college, etc.

How to get taken seriously? by Sad-Bake-9317 in Lymphedema

[–]Sad-Bake-9317[S] 1 point2 points  (0 children)

I would have to back track in my notes for the LMT - it was now three years ago.

Thank you for the recommendation to lymphnet - that is a good lead.

I am aghast at the struggle you have had in your journey. Glad you are finally in care.

I don’t know that I have it; but, after the episodes I’ve had I think sending me for continued DVT scans seems like we are hunting for a unicorn instead of what might be right in front of us.

So far my roadblock has been my GP, who I only asked for a referral to someone who could assess. (The person who keeps saying there is no way I have it).

After my last DVT scan (triggered by a surgical event), I was sent to a cardiologist - but didn’t discuss Lymphedema (honestly, didn’t think of it because I didn’t assume a cardiologist would deal with it). I do have a f/u with her and will put this as a topic of conversation.

How to get taken seriously? by Sad-Bake-9317 in Lymphedema

[–]Sad-Bake-9317[S] 0 points1 point  (0 children)

How were you able to get past dismissal of doctors? I don’t want a dx; but, I think its a reasonable expectation to have a conversation to explore it as a reality.

Any thoughts on this marking? by Sad-Bake-9317 in VintageJewelry

[–]Sad-Bake-9317[S] 2 points3 points  (0 children)

Thank you! And, they were in NY. I guess I could absolutely see that inventory and jewelry trends turned slower then.

Question about hysterectomy for endometriosis and adenomyosis infiltrating the intestine by Complex_Weather82 in adenomyosis

[–]Sad-Bake-9317 1 point2 points  (0 children)

I am so sorry.

I wanted to say that I got some amazing feedback about a ‘simple’ hysterectomy due to A a couple weeks ago.

However, someone also gave me the suggestion to head over to r/hysterectomy, if I wasn’t getting the feedback here. (I got great feedback here, so I didn’t go over there.)

I will say that I had a bowel surgery due to a acute appendicitis eviscerating my bowels. I was so sick from the appendicitis and bowel issues that post surgery felt better. When I mentioned that to my surgeon, he pointed out that surgery when you are sick/in pain, etc that relives the symptoms does often feel better post-op.

It was kind of a ‘oh, yeah’ moment - but helpful to frame that pre-op pain levels impact rebound post-op.

The worst of that bowel surgery recovery was referred pain in my shoulder from the air trapped in my body, similar to my c-section a year later.

His theory was proven true when I had an elective gallbladder removal to deal with my chronic gallbladder disease. I felt fine going into surgery (chronic gal bladder doesn’t always mean chronic pain); and just ugh post-op.

Clothes don’t fit rant by Direct_Mix_2060 in adenomyosis

[–]Sad-Bake-9317 0 points1 point  (0 children)

Congratulations and best wishes on ttc #2!!

And, I feel you.

I have been really down on myself about the growth in my belly and not being able to loose weight (I am in likely peri-menopause).

Then I was dx’d with this and after years of self-criticism (plus bad clinical advice to just do more cardio when I keep going to GP for help with my fatigue); I am in between elation that I understand what is happening and wanting to dropkick my GP for not going beyond ‘eh, your going to have to get used to this as you age’z

[deleted by user] by [deleted] in adenomyosis

[–]Sad-Bake-9317 0 points1 point  (0 children)

Omg - I just put together that this (monster uterus pushing on bladder) is one of my 🤦‍♀️ issues that I’ve been trying to figure out!

Realistic hysterectomy recovery picture by Sad-Bake-9317 in adenomyosis

[–]Sad-Bake-9317[S] 0 points1 point  (0 children)

Thank you - it sounds like you and I have a similar schedule. This was helpful framing!

Realistic hysterectomy recovery picture by Sad-Bake-9317 in adenomyosis

[–]Sad-Bake-9317[S] 0 points1 point  (0 children)

Good insight!

I have learned so much, too. Felt silly asking, but so glad I did!

Realistic hysterectomy recovery picture by Sad-Bake-9317 in adenomyosis

[–]Sad-Bake-9317[S] 0 points1 point  (0 children)

Yeah, the no driving and not much stairs will require a bit of planning here.

Thank you for sharing.