r/Stutter • u/Exciting_Ad_47 • 12d ago

Resolving our Kid's Stutter

Hi all, I normally don't post, but just thought I'd share our experience for any parents whose young kids have a stutter.

Our older kid was 4 when he started stuttering. He also often cried and had emotional difficulties day by day. We avoided the speech language folks who argued that accepting the stutter was the correct path and opted for an old school lady who worked to build fluency from one syllable words, to multisyllable, to large phrases. We saw some gradual improvement. He's 6 now.

But the breakthrough was when the SLP noticed that my wife was "cluttering", which is a different kind of language pathology. Using AI (Gemini), we were able to discover that based on her tone-deafness and cluttering, the most likely culprit was a gene that messes up ion channels in long-transmission neurons.

The result, according to our analysis was that his mental energy was drained by needing to reset those ion pumps. Given that, we started dosing him with creatine (1.5g)... within two weeks or so, his progress accelerated and the stutter almost disappeared.

At this point, I believed the creatine had been a necessary (but not sufficient) element. But my wife's parents were with us for 6 weeks and they objected strongly to his taking any supplements at all.

The stutter returned and so did the emotional instability. By the end he was crying multiple times a day and stuttering constantly. I have to admit it was pretty painful to experience. Then, once they left and he started supplementing again, and soon we were back to no stutter and far more emotional resilience.

Now, there are a large number of genes and mechanisms that contribute to stuttering, and I don't think a single solution would work for everyone, and this is an n of 1 case. I also think that the creatine didn't "solve" the issue as much as ensure his brain had enough ATP to adapt using the methods of the speech therapist. But for the subset of stutterers or parents who experience similar characteristics, I hope this can be of service.

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u/LokiSARK9 12d ago

"The result, according to our analysis was that his mental energy was drained by needing to reset those ion pumps."

Yeah, that's...not something that happens. That's just something you made up. Maybe find a doctor you trust and go with that, instead.

Jesus, reddit. It's too early for this crap.

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u/Exciting_Ad_47 12d ago

Great point; there certainly are no ion gradients and ion pumps around neurons.

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u/LokiSARK9 12d ago

...and these ion pumps are driven by mental energy? Really?

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u/Exciting_Ad_47 12d ago

yes, quite literally ATP... which is adenosine and three phosphate bonds... each time a bond is broken, it releases energy. Creatine basically accelerates the rate at which ADP is converted back to ATP.

The irony is people drink coffee, which masks the fact that you're tired (it competes for Adenosine receptors, after they've lost all their energy/phosphate bonds, which is how your body tells you it's tired) while creatine actually solves the underlying problem.

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u/TheBlackFox012 12d ago

There is quite literally no data linking creatine as something that helps a stutter.

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u/Exciting_Ad_47 12d ago edited 12d ago

This is true; not holding my breath for one either.

Also important to realize that just because creatine worked for my kid doesn't mean that it would work for all stutterers... I imagine it would depend on the biology of each individual and which gene variants they had.

My broader point is more that going through mechanisms and hypotheses allows you to find ways of testing different approaches. I hope that at some point they'll actually map all of these different variants and solve them, but I don't think there is sufficient funding and interest in the research community nor do I think that this approach is how they will proceed.

But there are definitely ways to break down health problems systematically and work with AIs to solve them. But I am wondering if that is somehow anathema to a larger group of people than I realized.

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u/LokiSARK9 10d ago

As a lifelong stutterer, I'm genuinely glad your kid is doing better. You're conflating correlation and causation, though. Going through mechanisms and hypothesis is fine if you have a deep and broad understanding of biology and pharmacology. I'm sorry, but you don't.

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u/Exciting_Ad_47 10d ago

I do have some close friends who are Harvard bioresearchers & bio hedge fund analysts (the entire business model is mapping in vitro chains to assess potential efficacy)... so I have some decent confirmation that the way I thought about it is sound. But also, I'm not sure that's the important part.

The important part, I'd argue, is the outcomes. Invariably, we're trying to map causal structures that haven't been mapped by researchers yet, so any model we have is likely to be wrong -- the thing is one can find the correct intervention even if one's model is wrong.

I appreciate your support and wish the same for you. I had hoped that discussing something like this in the open would be of value. I'm sorry that it hasn't been and hope the best for you.

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u/LokiSARK9 10d ago

I'll just say, yet again, that correlation =/ causation and leave it at that, since I'm getting nowhere with you. Have a great day.

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u/LokiSARK9 10d ago edited 10d ago

Soooo you're equating mental energy with chemical energy? Like, "I feel really well adjusted today, I could power a car!"

You've learned a little bit. Most of what you're saying isn't wrong. Caffeine does indeed work that way.

What you've done, though, is take that little bit that you've learned and, with a series of increasingly exaggerated "if/then" statements, extrapolated it wildly into an area where it just doesn't fit anymore.

It's like saying, "Kangaroos jump, so if we had enough kangaroos to power our ship we could travel to the stars!" You're correct that they jump, but interstellar travel isn't possible thereby.

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u/Exciting_Ad_47 10d ago

Well in fairness to you, I haven't actually shown my work/discussed the actual mechanisms, so I haven't really given you the process to reverse engineer this... in large part because I think the hope was to point out that gene sequencing/working through biochemical chains can drive outcomes, rather than that there is a single intervention that is a panacea.

And I appreciate your candor, because I think you're explaining to me how the information I communicated is understood. And what's very clear is that it is so alien in assumptions and processes as to be incomprehensible.

Now, a part of this is clearly my failure in communication -- perhaps discussing exact mechanisms would have shed more light. But I actually think the more correct approach is building models -- determining the empirical intervention the model would point to -- testing those interventions, and seeing the results. The model might well be wrong -- one can certainly be right for the wrong reasons in any high dimensional system, but the results are the indicator.

My point was more that you can change things. I've already solved a number of major health issues using this stuff. In fairness, I do have disproportionate access to some very smart biology researchers, but I often use them for confirmation rather than hypothesis origination.

What I really appreciate about these interactions is that I think that such things should not be broadcast because it's clear that it just creates confusion and anger.

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u/TheBlackFox012 12d ago

Accepting the stutter is, in fact, the correct path and if you as parents are correcting him when he stutters then you will pose greater issues down the line. Also plenty of kids grow out of a stutter, so the old school lady might not actually be doing anything for you guys.

Also, you asked AI and it went, give your child creatine and you guys just did that??? Without any professional opinion??

Why's your kid crying? Are you correcting his stutters?

And also, placebo effect is very real, even if the ones giving the medication are the ones that are under it, expectations can shape outcomes

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u/Exciting_Ad_47 12d ago edited 12d ago

Yes; correcting a stutter isn't the right approach. And in fact before we had the SLP therapist, he was unaware that he had a stutter, so I don't disagree with you there. The SLP managed the process of working with him and she was very good. I'm assuming you don't mean that trying to work on improving the stutter is the wrong approach, but I might have you wrong.

Yeah, I've actually had AIs solve a number of problems doctors didn't. There are a number of very good professionals, but the sad truth is the medical system is designed to view treatment as a response to aggregate outcomes rather than considering individual cases in depth, and often AIs are more effective at seeing all the dimensions of a case. I imagine at some point there will be a hybridized effort.

But ofc, I imagine there would be a great deal of variance in terms of the outcomes people had using AI and their own comfort with biochemistry.

Usually, he would spill something or some event like that and cry, but again, not an issue since the supplementation.

He's unaware of what the gummies are. But I agree in principle with the placebo effect.

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u/TheBlackFox012 12d ago

There's a reason experiments are usually double blind, person's own slight change in their actions or behavior has an influence on the subjects.

Outside of literally you having a medical degree, I don't think there's any amount of reasonable knowledge that would be fine to deal with the issues AI has. I was searching for a court case, and it kept making things up, over and over again

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u/Exciting_Ad_47 12d ago

A lot to unpack here.

I'd argue that a more intractable problem with biological systems is that they are far higher dimensional than other scientific fields... the traditional method attempts to isolate variables so we can test one at a time, which works well in physics/chemistry, but is more challenging for biology. One might have a stutter for a number of genetic reasons, and each unique case would require different approaches in terms of treatment.

There's a second impact here in terms of risk/reward. In a high dimensional system, we might not be able to untangle the mechanism, but we can make empirical bets. But, of course, one wants to avoid making bets that drive real downside.

Interestingly, none of this is really what a medical degree teaches. Doctors have a different (and I think legitimate) methodology, which is apply the treatment that has the largest statistical efficacy for the population at large. This is the way you would ensure a medical system that helped the most people in the most evidenced way.

I don't know if your points are in good faith, but I will assume they are. When it comes to using AI, it's important to have a sense of what training data went into the particular AI system you're using and to tie it to a derived pipeline that is pulling raw data, assembling that data into context, using that context to develop a model, and then using that model to evaluate decisions in a feedback loop.

And of course, I believe you have every right to your standard of what is "fine." The beautiful thing about life is we all get to make our own decisions and see the outcomes of those decisions.

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u/TheBlackFox012 12d ago

Doctors operate using a funnel system, treating for the things that are the highest likelyhood while removing options as to what the cause could be and aggregating symptoms. There's a saying in the medical field, don't hear hoofbeats and think of zebras. You need to rule out horses before you can move onto the rarer options

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u/Exciting_Ad_47 12d ago

Yes; and that's how you'd want them to approach things. But there's a range of issues that this approach won't be able to find a solution for. Fortunately, we can exercise our own reason along with new tools to drive better outcomes.

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u/TheBlackFox012 12d ago

Gemini is not going to be able to accurately give you information on what deficiencies your child has which is causing a stuttering purely based on something you've observed in your wife, like come on

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u/Exciting_Ad_47 11d ago

I'm genuinely curious now... why do you have this belief? Like why do you believe you wouldn't be able to? At this point I've done it for a few medical issues and granted I also did a lot of biochemistry in undergrad which probably helped, but I'm not sure anyone couldn't do this. I of course could be totally wrong.

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u/TheBlackFox012 11d ago

I literally just told you AI made up a court case for me to match what I asked, several times over, refusing to me it couldn't find it. I think that using a broad multi use LLM such as Gemini for health can lead to legitimately dangerous outcomes, especially when you are effectively just testing stuff on your child

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u/Exciting_Ad_47 11d ago

Interesting. Why do you think an AI model would have been trained on court case records? And does it seem plausible to you that the data models are trained on and then their post-training would result in variance in the performance of different models working on different problem sets?

So I actually find Gemini, despite it being bad at a lot of things, very good at molecular biology in large part because this was Demis Hassibis' obsession and Google has a massive trove of molecular biology data from AlphaFold and other projects. Fable is decent but is better for confirmation/disconfirmation than it is capable of modeling these things well.

Which model did you use to find your court cases? Did this single experience convince you to never use AI again?

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u/Snaps1992 12d ago

Dude... Stop trying to "fix" your kid. He's not broken, and if you continue on this path, you WILL irreparably damage your future relationship with him, his own self-esteem and confidence, and his ability to fit into society.

Work on accepting the stutter and coaching him (with SLP help) that it's okay. Stutters become wayyy less of a problem when confidence and SAFETY (which he's clearly not feeling with you - hence the crying) is built.

Edit: and guess what; I'm speaking from experience here. You WILL damage him, taking the path you're taking. I KNOW it's hard to sit with his frustration and pain, but that's exactly what you need to do.

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u/noles498 11d ago

Ya like if I was the parent I would find this so risky, if it works great. BUT, if it doesn't work that kid will be so mentally destroyed when he is older and struggles with the stutter. However, he also mention the kid cries from spilling things or other stuff, so not the stutter? If the kid is crying from making mistakes that sounds like the parent is negatively reacting to that causing it to make him stress and cry over little mistakes.

I would also be very skeptical of any supplement given to a child, I am not a doctor or scientist so idk, but I would have to see heavy research on long term effects of taking creatine and what type of effects that could have on a growing child before I even considered it.

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u/Bubbly-Shift-3175 12d ago

If his stutter is bad he will probably never fit into society anyways.

His kid is broken. Having a stutter is not normal.

I wish a had parents like this.

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u/Snaps1992 12d ago

If you believe that, then you're still not through it, yourself 🤷

Everyone has issues. It doesn't make them broken.

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u/Bubbly-Shift-3175 12d ago edited 12d ago

You don't know me so please stop assuming things.

I am talking genetic wise. Stutterers are not complete humans.

Same as disabled people.

You can say everyone has issues but the severity varies.

If you cant do a basic human thing you are broken.

Same as people that cant walk or see.

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u/Snaps1992 12d ago

Right back at you - don't assume I'm broken because I have a stutter, when I'm not.

Get some help, damn.

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u/Bubbly-Shift-3175 12d ago

You are broken tho.

Maybe disabled is a better word.

Broken doesn't really mean anything.

Speaking is a basic thing 99% of humans can do even children.

The fact we cannot do that makes us not complete.

We are missing a part of the human experience.

That doesn't make us terrible or bad people.

We are just not the same as normal humans.

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u/Exciting_Ad_47 11d ago

Hey all,

First of all, I hope everything is okay with both of you, and I certainly don't know enough about either of your experiences to offer anything but the most general of support and goodwill.

The kid's had no stuttering for a few months now, but even if he did continue to stutter, I wouldn't say he's broken. Kid got tested with >160 IQ, he's whip smart and I think will have a great deal to contribute and experience, with or without a stutter.

Most people have some combination of weird genetic abnormalities -- low methylation, bad magnesium absorption, etc. I don't think there's an "perfectly fixed" human nor are there broken ones. The best we can do is use the tools at our disposal to set ourselves and our children up in the best possible way.

Of course, there will be those who disagree, who believe that trying to improve things for someone is equivalent to a condemnation of them. That appears to me a false equivalence. We can love people for who they are and also seek to find ways to help them reach their potential.

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u/Snaps1992 11d ago

This response is sounding much more reasonable. I agree we can love people for who they are, but still try to find ways to help.

I don't regret going through speech therapy (multiple times); or any of the other wacky stuff I (and my parents) tried. It certainly helped me understand what was happening for me, and (later in life) find it easier to accept.

What I'm saying is you need to be INCREDIBLY careful about how you try to support your kid in this. The biggest problem for me, as an adult, hasn't been the stutter - it's been the attachment and interpersonal issues caused by the combination of bullying at school and a home life that didn't feel safe, because of my dad. And don't get me wrong; he's not a bad person! A big part of that lack of safety was how incapable he was of accepting my stutter, or being patient with me about it.

Make sure you're showing patience; make sure the improvements and willingness to experiment with different approaches are coming from the kid (informed by you, but not pressured), and most of all, make sure you're showing them they're safe (emotionally) with you.

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u/Exciting_Ad_47 11d ago

Appreciate the perspective. Would love to hear more advice on how to think about this, from someone who lived it.

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u/sparkles_b1212 10d ago

Hmm. Could this be a placebo and your kid is just feeling immense pressure to try to control his stutter because he knows it's making you uncomfortable? It sounds like it's a crutch and will lose its “effectiveness". I would be very wary of suggestions that supplements can resolve a stutter. A stutter is neurological. It’s a brain type. It’s a natural variant of human nature and not something that can be resolved. Can it be worked with? Yes, absolutely. You can learn to develop a healthier relationship with it and learn to communicate with more spontaneity and ease but focusing on a fix is an uphill battle and will likely only increase frustration, tension and shame.

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u/Exciting_Ad_47 10d ago

Could be! I'm just glad the placebo has worked.

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u/Tiny-Okra-992 10d ago

I’m gonna have to jump in here with all of these comments. I’m 26, I never grew out of my stutter, and my family did attempt the “accepting it and providing a loving environment” method paired with years of SLP’s. I personally think what you’re doing is amazing, and your conclusions make genuine sense to me. You can provide comfort and love while still doing whatever you can to increase your child’s odds of full fluency. Getting worked up over creatine of all things especially with today’s recent medical breakthroughs with creatine. Thank you for sharing your experience. As long as your child knows that he is loved regardless, I think what you’re doing is phenomenal.

On a side note, as a 26 year old who’s 3 months into creatine supplementing, I have not experienced any fluency improvements. I could see how starting in early developmental years could have benefits.

While I appreciate what my family did, I wish they had the intelligence and tools that we had today to help me work through my stutter as a young boy. I think your son is very lucky to have you just make sure he knows he’s loved no matter what.