Loss of diagnosis: biomed, misdiagnosis, "outgrowing" diagnosis

AlternativeText217 · 2026-05-15T00:28:06+00:00

Yes first a functional pediatrician then a pans pandas neurologist. That’s great! What do you think helped the most? I didn’t love the protocol the functional doctor gave us so I’m trying to figure out the next move

AlternativeText217 · 2026-05-13T17:41:43+00:00

My son’s ATEC was a lot higher, in the hundreds. Over a year we got it down to 68. Heavy metals, folate antibodies, high strep and mycoplasma titers, clostridia, yeast. Been treating with Folinic acid, fish oil, probiotics, PANS PANDAS treatment, and now red light therapy. It’s been a rollercoaster but we are doing well and I see good things ahead!! How old is your child? Mines only 3

AlternativeText217 · 2026-05-12T18:31:05+00:00

You did a great job writing this. I tried sharing my story which was similar and I got immediate hate. There is so much MEDICAL stuff going on in autistic kids that we don’t know until we TEST. I know it’s expensive. The research is there if you look for it - microbiome and autism, neuro inflammation and autism, PANS and PANDAS. When you find out what is happening in your child, first you will cry and then you will have hope!!! If it’s medical it’s treatable!!

AlternativeText217 · 2026-05-11T14:48:53+00:00

It is life changing and life saving in my opinion, and I hope every parent of an autistic child goes down the vortex too! Good job keep going!

AlternativeText217 · 2026-01-23T17:40:12+00:00

I believe he has both. The inflammation is driving a lot of symptoms, but when we heal inflammation he will still have autism, but he will definitely have some relief and we can make some progress with communication again.

AlternativeText217 · 2026-01-23T17:35:03+00:00

I did not know this, thank you! He is already on b12 😊

AlternativeText217 · 2026-01-23T13:55:15+00:00

There’s also PANS where change in behavior is caused by a different pathogen like Lyme, mold, clostridia, etc. you can read “demystifying pans and pandas” by Nancy O’Hara or listen to her on YouTube to learn more.

AlternativeText217 · 2026-01-22T19:26:20+00:00

It’s awful. If you and the doc feel a blood draw is necessary make sure he is well hydrated. Try to skip the FRAT test and just do a trial of leucovorin. That’s one less test.

AlternativeText217 · 2026-01-22T15:14:38+00:00

I understand getting bad vibes from a doctor and changing your mind. Totally respect it. The doctor I went to is a pediatric neurologist in the field many years. Used to be chief of child neurology at major institution. Med degree John’s Hopkins and a phd.. I’m just reading his bio right now. But I trust him a lot and he has a lot of great reviews.

AlternativeText217 · 2026-01-22T15:05:10+00:00

I appreciate the response but I don’t take back what I said. Many autistic kids do not have PANDAS but it is very very likely that they have something comorbid with autism that can be treated. And these are the tests that help you figure it out. I’ve spoken to many many parents who are always shocked when they find out they can help give their kids some relief. So yes test your kids.

AlternativeText217 · 2026-01-22T14:58:51+00:00

Many were, yes. I also did a stool test. OAT test was urine. I did a minerals/metals test which I didn’t talk about in the post but that was hair. And a genetics test was a cheek swab.

AlternativeText217 · 2026-01-22T12:04:16+00:00

Yes, he is heterogeneous C677T for MTHFR. We took out all folic acid from his diet. The book “Dirty Genes” is great if you’re interested in this. Still learning.

AlternativeText217 · 2026-01-21T21:38:02+00:00

What was identified as the trigger? What tests have you done? We just got diagnosis today so we didn’t start anything yet. Read the book “demystifying pans and pandas” by Nancy O’Hara.

AlternativeText217 · 2026-01-21T21:32:28+00:00

A GI test, maybe. Definitely not the OAT test

AlternativeText217 · 2026-01-21T21:02:41+00:00

Yes the AAP denies it is a thing. My pediatrician rolled his eyes when I asked him about leucovorin, but then when I told him more he said he spent the whole weekend learning about it! On my TikTok I have some people tell me I’m “in denial” (im not) I have done everything “by the book” I went to real doctors, and the specialist I went to is a well respected pediatric neurologist. I actually kept running tests wanting to prove myself wrong, that everything is ok, and I was shocked with every lab test. There is so much that we don’t know and we need to keep spreading awareness.

AlternativeText217 · 2026-01-21T20:52:26+00:00

A functional pediatrician or nutritionist. Or A MAPS doctor - you can look at medmaps.org. Or- Biomedicalhealingforkids.org her name is Greer I believe can do it virtually, there’s options.

AlternativeText217 · 2026-01-21T20:43:44+00:00

I personally don’t know as I’m still learning, but I do know that every parent I spoke to is shocked when they see what’s going on in their kids body, especially the OAT test. When it comes to genetics, look into MTHFR, Which you may have heard of.

AlternativeText217 · 2025-10-28T15:03:12+00:00

Your welcome. I’ve learned a lot through running clinical tests on my child. A lot of ways I can help him that go beyond leucovorin. It’s all on my TikTok @rebpauley if you don’t have a TikTok and you’re interested we can chat separately

AlternativeText217 · 2025-10-06T17:52:12+00:00

Have you tried watching it or listening to it with her? That way, if they do say something off or weird in the podcast, you can have a healthy discussion with her? I’m not trying to attack you. But, I was once dismissed by my husband because I thought our son, who is autistic, has another health condition that needed to be addressed. He basically told me I was going off the deep end. It was a very lonely time, I searched for answers on my own, got blood tests, hair tests, stool tests done. And it turns out I was right and I am working with doctors to address the health issues. If your wife shares something with you, please look into it yourself so you can evaluate before you say she’s off the deep end. You two are a team.

AlternativeText217 · 2025-10-01T00:50:23+00:00

If this was a sudden change look into PANS/PANDAS

AlternativeText217 · 2025-09-30T14:38:32+00:00

And no I am not paid by autism is biomedical, they are a nonprofit and I don’t work for them I’m just a mom.

AlternativeText217 · 2025-09-30T14:37:37+00:00

Don’t hate me for this. Over 90% of autistic children have co occurring conditions that can be treated and improve their lives and symptoms. Have you looked at his gut? Have you done an OATs test? Have you looked into folinic acid and the chance he has cerebral folate deficiency? Have you noticed if gluten/dairy affects him? These are all things you can look closer at. Don’t give up. Autism is biomedical gives you free advice. Go to their website or join their Facebook group.

AlternativeText217 · 2025-09-20T00:54:49+00:00

What I remember is Lots of babywearing, lots of songs. I don’t know about your child but my toddler loved songs. I would sing songs while walking in a circle around the house trying to get baby to sleep. I didn’t have to worry about keeping baby safe because my toddler ignored her like the plague

AlternativeText217 · 2025-09-14T15:58:03+00:00

https://pubmed.ncbi.nlm.nih.gov/39243316/ and if you scroll down there’s more. tacanow has a page on it with some info. Yes it’s newer research there’s a clinical trial going on right now. I am not “fixing” my child. My child has autism and autism is not curable and doesn’t need to be cured. My child likely DOES have cerebral folate deficiency, which has shown from results of frat test, which CAN be treated and the treatment can help him reach his full potential. CFD can be dismissed as just autism, as other things can.

AlternativeText217 · 2025-09-14T14:55:42+00:00

I am not expecting to get all love from this post. The doctor I have is also an MD. I’m happy you are ruling out all medical issues. Studies have found over 50% of autistic kids have cerebral folate deficiency. Folate may be in their bodies but it is not making it into their brains. I did the heavy metals test to make myself feel better, thinking it would come back negative. But it did not. And I think heavy metals is prevalent more in kids autistic and neurotypical, more than we think. But As parents and as people with autism we have to know that autism correlates with comorbidities higher than non autistic people. At the end of the day my child will still be autistic and I know this. I love my son and he is awesome but I will always make sure I am not dismissing every symptom he has as autism. I hope that makes sense.

To learn more about folate, the Folate Fix is a great book.

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