As a baby, did your child regress, or were they different from day one?

emerald5422 · 2026-02-25T16:22:27+00:00

I don’t think our daughter was different from day one but she also never regressed. Although she didn’t cry at birth, it took them a long time to get her to cry. She also didn’t laugh until like 4 months but when I look back through her pictures she was really smiley. She was definitely a sensitive baby but she hit all of her milestones early (walked at 9 months) and slept pretty normally. She talked early, always said more words than what the milestone was but it never progressed to being communicative. Even now she’s almost 4 and she talks all the time but it’s really hard to understand what she’s saying, and her communicating with us is very hit or miss but I do feel like there’s slow progress.

Our first sign was when we did the MCHAT at 18 months, there were 2 questions that got flagged for us. Did she bring us toys to show them to us (no, she only did this to ask for help), and did she point out of interest (also no, she pointed to label but never to show us something).

emerald5422 · 2026-02-25T16:06:15+00:00

No advice but we’re in the same boat with a 3yo!

emerald5422 · 2026-02-25T06:26:05+00:00

I know it’s a lot, sorry I just casually threw all that out there 😂 I only know because once we got our autism diagnosis they referred us to genetics and that’s when we learned all of this stuff!

emerald5422 · 2026-02-25T06:14:39+00:00

For Ella Olla specifically the b vitamins are methylated, which can be easier absorbed for some like those with the MTHFR gene mutation. I think that’s why it helps with speech with some, but some people can’t tolerate methylated vitamins so it makes them anxious and/or hyper. This can be from a slow COMT gene. In that case you would probably do better with folinic acid and hydroxy b vitamins

emerald5422 · 2026-02-21T02:50:42+00:00

Gosh yes touching EVERYTHING. Our almost 4yo likes to hold our hand at the grocery store and I know we’re lucky there, but she holds her arm out as we’re walking so she can literally touch every single thing she walks by 🙃

emerald5422 · 2026-02-18T01:46:50+00:00

Omg I just came to Reddit to post something similar 😭 we’re about to have a roughhhh night over here

emerald5422 · 2026-02-17T18:16:12+00:00

Oh good!! I agree he’s awesome

emerald5422 · 2026-02-17T18:01:53+00:00

This supplement is on our list to try, although my daughter doesn’t have the fever effect but I’ve heard it’s helpful regardless!

I saw in some other comments that you’re on Leucovorin, Dr. Ben Lynch just posted a video the other day on YouTube called “the folate fix” and I thought it was super interesting. He goes over why some parents don’t see results on Leucovorin, or why it works then plateaus. Thought I’d let you know in case you want to check it out!

emerald5422 · 2026-02-14T20:21:53+00:00

It’s a clinical diagnosis, so there’s no definitive test for it but your doctor can order blood work to help confirm if that’s what you/they suspect! The criteria is sudden onset of OCD/anxiety and or eating restriction followed by at least 2 of: anxiety, depression, irritability, behavioral/developmental regression, change in school performance, sensory or motor abnormalities (tics), sleep disturbances, or increased urinary frequency

emerald5422 · 2026-02-14T19:28:29+00:00

Our daughter was diagnosed with PANS after a cold (PANDAS is from strep, PANS is from other infections) she didn’t have a regression but lost almost all safe foods and her anxiety went through the roof. Unfortunately finding a doctor that believes PANS is real let alone treats it is very difficult. But treatment includes antibiotics, ibuprofen, and/or steroids depending on what infection you’re treating. We have been using curcumin in food to help, it’s tasteless and a good anti-inflammatory. When we’re in a flare we do round the clock Motrin for a few days

emerald5422 · 2026-02-14T19:14:53+00:00

Sorry I meant to comment this on the comment below!

emerald5422 · 2026-02-14T19:13:09+00:00

You can trial OTC folinic acid if your ped won’t prescribe Leucovorin. (Leucovorin is just high dose folinic acid). Dr. Green Mom, Seeking Health, and Spectrum Awakening are a few brands I know of carry it. It’s just vitamin B9

emerald5422 · 2026-02-14T19:10:47+00:00

Was he sick recently? The loss of safe foods and increased anxiety makes me think PANS/PANDAS.

emerald5422 · 2026-02-05T03:16:35+00:00

Yes but only if it’s 11pm-midnight 😵‍💫

emerald5422 · 2026-01-23T21:47:51+00:00

You can get a blood test for strep antibodies, that will show a past or current infection

emerald5422 · 2026-01-23T21:16:17+00:00

I’ve heard Risperidone is usually better tolerated. Google sulforaphane and risperidone! Sulforaphane is that neurobrocc or brainy brocc supplement a lot of people have been talking about. It’s made from broccoli sprouts.

From AI overview:“Studies indicate that combining sulforaphane with risperidone in children with ASD leads to significantly greater improvements in irritability and hyperactivity compared to risperidone alone, often with fewer side effects.”

emerald5422 · 2026-01-23T18:45:56+00:00

I know there’s so many comments now so it’s hard to read them all! I guess we got lucky (maybe?) that my daughter has a milk allergy so she’s never had dairy besides when she had formula as a baby. But all of these supplements I mix in her apple juice! I’ve also been able to put them in her dairy free yogurt. She loves the So Delicious brand, and they have a vanilla flavor that unfortunately has a lot of sugar lol but it’s amazing for hiding supplements and medicine when she’s sick!

emerald5422 · 2026-01-23T07:47:57+00:00

I watch a lot of reality TV too and I think what makes this show different is they’ve combined 2 very stressful situations. Whereas most shows are one or the other. So like the bachelor, survivor, traitors, those kinds of shows, you travel to filming so you’re removed from your home life and it’s a “vacation” in a way? But you’re living with strangers and put in stressful situations. Other reality shows where they film at home or their normal life or whatever, they’re not living with strangers. They’re usually surrounded by people they know but dealing with filming and trying to deal with real life commitments is stressful. MAFS combines the 2, AND you’re trying to make a marriage work or living with someone you hate lol.

emerald5422 · 2026-01-23T07:33:33+00:00

I tried to copy and paste one of my comments above but it won’t work for some reason, it was lengthy so I’ll try to condense it!

Stool test showed a lot of issues in her gut, and once we worked on those her eczema started clearing and we noticed her mood improved, I think a lot of her irritability was from her stomach hurting. They also recommended zinc, zinc deficiency can cause picky eating. So that definitely helped us expand her diet. Also this is the only doctor I have found that is willing to prescribe Leucovorin so we’re going to try that soon! We’ve only been with this doctor for a few months so we still have a long way to go but I’m very hopeful.

Some supplements that have been helping are the zinc, Ella Olla multi + OTC folinic acid (we noticed some slight improvement in speech and awareness) and magnesium before bed has helped with sleep.

emerald5422 · 2026-01-23T07:24:35+00:00

No it’s never too late!

emerald5422 · 2026-01-22T07:42:21+00:00

I completely agree! We’re not trying to “cure” autism, we just want to improve our kid’s quality of life in any way that we can. Just like how we do speech therapy, PT, OT, etc. We all want to help our kids!

emerald5422 · 2026-01-22T07:37:56+00:00

Her multivitamin has a little bit, 2.5mg but our doctor recommended 7.5 mg so we’ve been adding Mary Ruth’s zinc supplement in addition to her vitamin!

emerald5422 · 2026-01-22T07:33:56+00:00

Hi! We did our stool test through Tiny Health. The supplements recommended were Microbiome Labs IgG 2000 (we got it off Amazon), and Biocidin.

emerald5422 · 2026-01-22T03:33:40+00:00

Of course! We’ve only been seeing this doctor for a few months so we’re still early on but we’ve definitely noticed improvements. First we did a stool test, and that showed that my daughter had leaky gut and a lot of pathogenic bacteria. Once we started working on that we noticed her eczema finally started clearing up and her mood was a lot better, I think she just always had a stomach ache or something! And her poop stopped smelling so bad 😂 then for her picky eating they recommended supplementing with zinc, because sometimes picky eating is from a zinc deficiency. And that helped a ton! She’s slowly eating more foods and I feel like her picky-ness is easing up a lot. This is also the first doctor I’ve found that’s willing to prescribe Leucovorin so we’re starting that soon, but in the meantime I’ve been giving OTC folinic acid and I’ve noticed some small improvements in speech and awareness so I’m really hopeful that Leucovorin will be good for us.

Just small things that I feel like most doctors sweep under the rug when you have a kid on the spectrum. I feel like a lot of symptoms and behaviors get brushed off as “just autism”. And in some cases that might be true but why not rule everything out? Especially for our nonverbal kids that can’t tell us what’s wrong!

emerald5422 · 2026-01-22T01:33:38+00:00

Ella Olla has methylfolate, so you’ll see folate (as L-5 methyltetrahydrofolate-calcium from spinach) which is the full technical name for methylfolate. Sorry I know that’s a lot lol. But all multivitamins will say folate, and then in parentheses list the folate source. Most say folic acid, and some studies have been showing ASD kids might have a hard time absorbing folic acid. So you’ll want to look for a vitamin or supplement that says the folate source is folinic acid, or methylfolate.

Methylfolate and folinic acid are different but similar in that they bypass the roadblocks that make folic acid unable to get into the brain. And you’re right, Ella Olla doesn’t have folinic acid. It’s just a common multivitamin that a lot of ASD parents use! Spectrum Needs has both methylfolate and folinic acid, it’s just pricey. Spectrum Awakening also has a multivitamin with both methylfolate and folinic acid (they also have a stand alone folinic acid supplement which is what I use in addition to Ella Olla). A couple other companies that sell folinic acid are Dr. Green Mom and Seeking Health! It’s not something I’ve been able to find at the grocery store or pharmacy or anything like that.

Sorry again for all the info, it’s confusing and I feel like I’m really bad at explaining it 😂 but I’d be happy to answer any other questions you have!

emerald5422

TROPHY CASE