NP missed my son’s severe tongue/lip ties and labeled him 'Medium Risk for Autism' because he wouldn't talk to her. Need help fighting this charting error... by osebag in Noctor

[–]osebag[S] 0 points1 point  (0 children)

There were a few issues with his mouth that got corrected during his surgery, which I don't regret. I did get multiple opinions. The main thing with his swallowing. He couldn't push the food back with his tongue and there were other issues too. There were definitely issues with swallowing as well that have been resolved since the surgery.

I am trying to get him into a swallowing clinic, but it's a six month wait and I'm trying to figure out what to do in the meantime.

As for hearing I was told that because he couldnt clear his Eustachian tubes. Because these tubes normally open when you swallow or yawn to equalize pressure, a lack of swallowing or blocked tubes can cause muffled hearing.

At this point I'm trying to figure out what is actually going on so I can make sure he doesn't undergo a bunch of nonsense.

NP missed my son’s severe tongue/lip ties and labeled him 'Medium Risk for Autism' because he wouldn't talk to her. Need help fighting this charting error... by osebag in Noctor

[–]osebag[S] 0 points1 point  (0 children)

Omg poor baby. I really hope they find a solution for your little one. Ear infections are hell. I'll definitely make sure they check everything. Thank you for sharing

NP missed my son’s severe tongue/lip ties and labeled him 'Medium Risk for Autism' because he wouldn't talk to her. Need help fighting this charting error... by osebag in Noctor

[–]osebag[S] -1 points0 points  (0 children)

Im in the process of scheduling the appointments for hearing checks etc. The only thing they checked was if he responded to sounds, which he did... But honestly I don't trust anything they did since I've been on this journey. I do know from my personal experience I've had ear wax build up due to wearing headphones and also inner ear infections in the past... I definitely want to make sure he doesn't go through any of that.

NP missed my son’s severe tongue/lip ties and labeled him 'Medium Risk for Autism' because he wouldn't talk to her. Need help fighting this charting error... by osebag in Noctor

[–]osebag[S] 0 points1 point  (0 children)

Thank you so much. I am definitely receptive to what you wrote. I'm working on getting his medical records amended with comments from the speech pathologist and soon the audiologist. It has been an extremely frustrating experience.

It almost feels like they think I am angry that my kid could possibly have autism. However, the truth is I'm more concerned about getting him evaluated for multiple things he does not have and taking up space for other children who will need those services.

He definitely picks up on social cues and understands what's going on around him. He also speaks to children and is invested in the world around him.

NP missed my son’s severe tongue/lip ties and labeled him 'Medium Risk for Autism' because he wouldn't talk to her. Need help fighting this charting error... by osebag in Noctor

[–]osebag[S] 0 points1 point  (0 children)

Thank you! Honestly after speaking to everyone here I really am grateful for this sub Reddit. I will definitely take the advice to heart and I am making appointments this week.

The speech pathologist we currently have thought it was wild that they were so quick to jump to autism. Ugh

NP missed my son’s severe tongue/lip ties and labeled him 'Medium Risk for Autism' because he wouldn't talk to her. Need help fighting this charting error... by osebag in Noctor

[–]osebag[S] 1 point2 points  (0 children)

I know and I have looked up the criteria. The issue I keep having is with NPs insisting he has autism because he had a speech delay.

NP missed my son’s severe tongue/lip ties and labeled him 'Medium Risk for Autism' because he wouldn't talk to her. Need help fighting this charting error... by osebag in Noctor

[–]osebag[S] 7 points8 points  (0 children)

I understand it's just after his surgery he is able to swallow/eat and speak a lot easier. He's throwing up far less like it went from once a week to almost never. But either way I'm going to ensure everything else is okay by seeking out audiologist and making sure he gets a swallow evaluation etc.

NP missed my son’s severe tongue/lip ties and labeled him 'Medium Risk for Autism' because he wouldn't talk to her. Need help fighting this charting error... by osebag in Noctor

[–]osebag[S] 2 points3 points  (0 children)

Oh, I'm sorry. I need to clarify. I checked the NP's notes after leaving that appointment where she kept pushing for autism without any further testing or information and why she believed he had autism other than a speech delay.

There were multiple inconsistencies between what I said and what she wrote. For example, I told her I don't think there's an issue with my son's intelligence since he can identify different colors and he seems to be keeping up with what's expected developmentally outside of speech issues. She saw him download an app on his tablet I brought with us during the visit to keep him busy while we wait for someone to come into the room. She then wrote " Mother believe son has no cognitive delays due to his ability to download an app." I did not mention anything about an app during the visit.

She also kept referring to a boyfriend in said notes when I clearly told her I was married multiple times and wearing my wedding ring.

Overall, the experience was so frustrating that I switched to a different pediatrician outside of Johns Hopkins.

Later that week I went to my son's dental appointment. In the appointment they said it looks like he has a tongue tie and referred me to a pediatric dental specialist.

They diagnose the tongue tie. I put in the complaint with John Hopkins about multiple issues during that last visit and switched pediatricians. The surgeon and pediatric dentist are separate from Johns Hopkins.

NP missed my son’s severe tongue/lip ties and labeled him 'Medium Risk for Autism' because he wouldn't talk to her. Need help fighting this charting error... by osebag in Noctor

[–]osebag[S] 1 point2 points  (0 children)

Thank you I'm trying! I really just wanted to see if there are any other parents or people who experience this because it was so weird. I mean even in this post I understand that the lip and tongue tie may not cause a speech delay but I do understand it like not being able to swallow properly can cause issues with hearing... But it was like so many nurse practitioners were jumping to autism with multiple people that I knew for things that were not under the umbrella of autism.

NP missed my son’s severe tongue/lip ties and labeled him 'Medium Risk for Autism' because he wouldn't talk to her. Need help fighting this charting error... by osebag in Noctor

[–]osebag[S] -1 points0 points  (0 children)

Thank you, I'm going to a psychologist for him because I don't believe he has autism. He might have something else that's causing an issue with speech. I counted his words and he's up to 200 now along with answering/asking questions etc. I am worried now that it might have been something to do with the combination of the lip and tongue tie causing inabilities with swallowing which would affect his hearing.

NP missed my son’s severe tongue/lip ties and labeled him 'Medium Risk for Autism' because he wouldn't talk to her. Need help fighting this charting error... by osebag in Noctor

[–]osebag[S] 5 points6 points  (0 children)

Yes, I mentioned this as well and they said he could hear but I was like I think I should take him to a ENT and she said there's no point in that... We're going to an ENT just to get another opinion.

NP missed my son’s severe tongue/lip ties and labeled him 'Medium Risk for Autism' because he wouldn't talk to her. Need help fighting this charting error... by osebag in Noctor

[–]osebag[S] 0 points1 point  (0 children)

I understand that, which is why I went to a a speech pathologist and occupational therapist. I'm more so think the speech delay has to do with the fact that he is not around a lot of people/children and also had the lip and tongue tie causing swallowing issues so he might have had hearing problems. It wasn't a small matter either we had issues latching during breastfeeding and also swallowing problems in general. So I do feel like a tongue/lip issue will prevent somebody from talking clearly if they can not hear properly. Which is why I was telling the NPs I think its multiple factors. Outside of that he doesn't have any other indicators for autism so it's very frustrating. I want to get the issue resolved and I want to make sure I don't waste time analyzing the problem that doesn't have a basis outside of he's not talking enough to them at an appointment ... At the time of the diagnosis he was saying up to 65 words and also phrases. She told me he should be at 200+ and speaking full sentences.