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ISO stuttering help for 5 year old
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amother
OP


 

Post Mon, Jul 06 2020, 2:23 pm
DS is 5.5 and has significant stuttering issues. It has been going on for about a year and a half and gets better and worse seemingly with no reasoning. It for sure gets slightly better when I don't make a big deal about it. I know age 5 is still normal for some kind of stuttering, but this seems more extreme. It also sometimes gets very bad. I really want to get him help but don't know where to turn!

We live in the Lakewood area. Anyone know specialists who deal with stuttering? Or know what I can do as a mom to help?
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amother
Babyblue


 

Post Mon, Jul 06 2020, 2:25 pm
amother [ OP ] wrote:
DS is 5.5 and has significant stuttering issues. It has been going on for about a year and a half and gets better and worse seemingly with no reasoning. It for sure gets slightly better when I don't make a big deal about it. I know age 5 is still normal for some kind of stuttering, but this seems more extreme. It also sometimes gets very bad. I really want to get him help but don't know where to turn!

We live in the Lakewood area. Anyone know specialists who deal with stuttering? Or know what I can do as a mom to help?
Look into pandas. My child’s stutter went away with pandas treatment. It is a symptom of brain inflammation.
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amother
Papaya


 

Post Mon, Jul 06 2020, 2:27 pm
Speech therapist who specializes in pediatric stuttering
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amother
Gold


 

Post Mon, Jul 06 2020, 2:41 pm
My son is almost five and also stutters in Lakewood. It's tough to find help.

I do want to say this: I spent a fortune at a local stuttering expert before realizing something was off.

1. There was a very expensive "evaluation" that didnt actually try to get to the core of his stuttering issues but went on and on about how us parents "feel".

2. No insurance was accepted and I felt they were dishonestly evasive about the length of the treatment.


There was more about the treatment itself that I felt was off.

It could be that they have success. I dont know. My gut told me I was wasting my time and $$. I am now waiting for a speech evaluation for which we have an apptmt in CHOP (long story, over a years wait) before I decide how to go further.
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amother
Gold


 

Post Mon, Jul 06 2020, 2:42 pm
Re you saying its "normal", from drs I spoke to and research I did any stuttering that lasts more than six months isn't "normal."
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amother
Cyan


 

Post Mon, Jul 06 2020, 3:03 pm
Having a son that outgrew stuttering, the most important treatment is your reaction!


Baruch HaShem my son has fluent speech. It was a journey of off and on, starting at age two. By six years old we took him out of therapy. Then went back at seven for one more year. Interestingly when he was 11 he told me he realizes that he stutters on big complicated words

Read up on stuttering. Stay calm. Maintain eye contact as he works to get the words out. Make sure your family, his teachers and everyone knows this. If everyone wants to tell u something at once, stop all the talk and give turns. My son with the issue, used to complain that he will forget what he wants to say.

We chose not to label his issue to him, I know there r those that disagree. However he spoke was acceptable and we had all the time in the world to hear him out. Seriously, drop everything-your chulent can burn, the phone can ring, the bathroom can flood(ok maybe not)

He had excellent speech therapist in ei, and preschool. And decent therapist after that. They all did the same thing

Their sessions where Modeled calm slow speech and slowly listening to him.

The child needs a safe nonjudgmental environment to speak, so they don’t develop a complex and then label in their head that they Are a stutterer. I know this because I know an adult who stuttered and believed he was damaged goods .

BH my son is past Bar Mitzvah and is a fluent speaker with no episodes for years.
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amother
OP


 

Post Mon, Jul 06 2020, 3:36 pm
amother [ Babyblue ] wrote:
Look into pandas. My child’s stutter went away with pandas treatment. It is a symptom of brain inflammation.


This kid never had a strep infection as far as I remember. Is it still possible to have PANDAS with no strep ever?
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amother
Babyblue


 

Post Mon, Jul 06 2020, 3:38 pm
amother [ OP ] wrote:
This kid never had a strep infection as far as I remember. Is it still possible to have PANDAS with no strep ever?
yes. Absolutely. In fact, children who look like they never had a typical strep infection are more likely to display neuro symptoms induced by strep. See the current thread on here about sub clinical strep.
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amother
OP


 

Post Mon, Jul 06 2020, 3:39 pm
amother [ Cyan ] wrote:
Having a son that outgrew stuttering, the most important treatment is your reaction!


Baruch HaShem my son has fluent speech. It was a journey of off and on, starting at age two. By six years old we took him out of therapy. Then went back at seven for one more year. Interestingly when he was 11 he told me he realizes that he stutters on big complicated words

Read up on stuttering. Stay calm. Maintain eye contact as he works to get the words out. Make sure your family, his teachers and everyone knows this. If everyone wants to tell u something at once, stop all the talk and give turns. My son with the issue, used to complain that he will forget what he wants to say.

We chose not to label his issue to him, I know there r those that disagree. However he spoke was acceptable and we had all the time in the world to hear him out. Seriously, drop everything-your chulent can burn, the phone can ring, the bathroom can flood(ok maybe not)

He had excellent speech therapist in ei, and preschool. And decent therapist after that. They all did the same thing

Their sessions where Modeled calm slow speech and slowly listening to him.

The child needs a safe nonjudgmental environment to speak, so they don’t develop a complex and then label in their head that they Are a stutterer. I know this because I know an adult who stuttered and believed he was damaged goods .

BH my son is past Bar Mitzvah and is a fluent speaker with no episodes for years.


Oh my goodness I love love love what you wrote. I know I have to have more patience with him and be chilled with whatever speech he has. I just worry cuz I have heard that there is no cure for stuttering and only techniques to mitigate it. So far he has not had any speech therapy and I was hoping it would just go away...but clearly it hasn't and I feel I have to take him for speech. I don't know where to start!
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amother
Smokey


 

Post Mon, Jul 06 2020, 5:06 pm
I am an SLP with twenty years experience. Please understand that there is little to no research that I know of to support PANDAS as a cause of stuttering/dysfluency. Meaning when stuttering is presented clinically, PANDAS is not included as a possible etiology in a standard fluency evaluation. For the most part, stuttering seems to be more common in boys, run in families, and has no particular cause. An experienced SLP will help you and your child manage anxiety and avoidance, as well as implement some fluency techniques where appropriate, so that the stuttering has minimal impact. In most preschool cases stuttering will resolve with time. The best thing you can do right is to find a good SLP, and don’t go off course chasing after anecdotal causes. (Posting anonymously because I don’t want my screen name associated with my field of practice.)
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amother
OP


 

Post Mon, Jul 06 2020, 5:16 pm
amother [ Smokey ] wrote:
I am an SLP with twenty years experience. Please understand that there is little to no research that I know of to support PANDAS as a cause of stuttering/dysfluency. Meaning when stuttering is presented clinically, PANDAS is not included as a possible etiology in a standard fluency evaluation. For the most part, stuttering seems to be more common in boys, run in families, and has no particular cause. An experienced SLP will help you and your child manage anxiety and avoidance, as well as implement some fluency techniques where appropriate, so that the stuttering has minimal impact. In most preschool cases stuttering will resolve with time. The best thing you can do right is to find a good SLP, and don’t go off course chasing after anecdotal causes. (Posting anonymously because I don’t want my screen name associated with my field of practice.)


Thank you for your input! Do you have any colleagues in the Lakewood area who you'd recommend as someone experienced in stuttering?
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amother
Brown


 

Post Mon, Jul 06 2020, 5:33 pm
amother [ OP ] wrote:
Thank you for your input! Do you have any colleagues in the Lakewood area who you'd recommend as someone experienced in stuttering?


Im not the amother from above, but I'm also an SLP and agree with everything she said. I'm not near you but I have experience working with children who stutter. I recommend looking into the Lidcombe Program. It involves a lot of parent training and involvement in sessions.

Do you have a way I can message you the name of a specialist in NJ?

In the meantime, don't interrupt your son, let him speak, speak to him slowly, model slow relaxed speech, try not to react in a negative way.

Hatzlacha!
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amother
Brown


 

Post Mon, Jul 06 2020, 5:40 pm
amother [ Cyan ] wrote:
Having a son that outgrew stuttering, the most important treatment is your reaction!


Baruch HaShem my son has fluent speech. It was a journey of off and on, starting at age two. By six years old we took him out of therapy. Then went back at seven for one more year. Interestingly when he was 11 he told me he realizes that he stutters on big complicated words

Read up on stuttering. Stay calm. Maintain eye contact as he works to get the words out. Make sure your family, his teachers and everyone knows this. If everyone wants to tell u something at once, stop all the talk and give turns. My son with the issue, used to complain that he will forget what he wants to say.

We chose not to label his issue to him, I know there r those that disagree. However he spoke was acceptable and we had all the time in the world to hear him out. Seriously, drop everything-your chulent can burn, the phone can ring, the bathroom can flood(ok maybe not)

He had excellent speech therapist in ei, and preschool. And decent therapist after that. They all did the same thing

Their sessions where Modeled calm slow speech and slowly listening to him.

The child needs a safe nonjudgmental environment to speak, so they don’t develop a complex and then label in their head that they Are a stutterer. I know this because I know an adult who stuttered and believed he was damaged goods .

BH my son is past Bar Mitzvah and is a fluent speaker with no episodes for years.


There is nothing wrong with addressing a moment of disfluency in a child's speech. This method might have worked for you, but I don't think you should be giving this type of advice to a parent and say not to address it. OP, if your son has a moment of disfluency, you can let him finish and say "that sounded a little bumpy!" there is nothing wrong with him being aware of the moments of disfluency and in fact, it's actually part and parcel of the Lidcome program I mentioned above....you might even imitate stuttering to him and have him catch you in a moment of "bumpy" speech. It's OK to have bumpy speech, it doesn't make him dumb, or nervous or anything. It just happens.
Is your son aware of his disfluencies?
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amother
Amethyst


 

Post Mon, Jul 06 2020, 5:49 pm
As a SLP, you SHOULD be suggesting things like PANDAS to parents when they have an issue. My 10 year old son's stuttering came and went WITH strep infections.
My almost 3 year old child has major speech delays. Guess what? Every time he is on antibiotic this year for strep (happened 3 times), his language improved by miles. I haven't gotten him speech therapy yet.
I have 2 clear cut cases of PANDAS in my home (not even the 10 year old, or the 3 year old).
PANDAS is brain inflammation caused by autoantibodies (not strep antibodies) attacking the brain after an infection or virus.
Babies can get viruses or infections, as can children, teens and adults. Babies can get Lyme Disease, strep, flu, RSV, and even COVID.
If the brain inflammation is in the region where speech is, you WILL have speech delays or apraxia.

In older children, a hallmark sign of PANDAS/brain inflammation is handwriting changes (shaky messy handwriting, writing backwards, writing huge, unable to make a picture according to age level etc.), as well as math challenges.
In babies and young children, their neurological deficits are harder to pinpoint because there is no frame of reference from before infection or virus. It doesn't mean that this doesn't effect that age population.
PANDAS isn't just about tics and OCD, nor is it just about strep because any infection or virus can cause an autoimmune attack on the brain. And depending which area of the brain is inflamed is where you will see those deficits.

Mrs. SLP, sorry for my long soapbox. But it truly saddens me how little education there is out there for those in the medical field and educational field regarding PANDAS.
There is SO much research coming out of Stanford, Columbia, Yale etc. regarding this disease. Yet it hasn't trickled down to those who really need to see it (the pediatricians, psychiatrists, therapists,etc)

It hurts to see you so cavalierly dismiss PANDAS as maybe being a cause of stuttering. Especially when life as a PANDAS parent is literally HELL, with almost no support from those traditionally supposed to be in supportive positions.

( A small window into my life:We had a virus pass through our home last week. It wasn't strep. The aftermath for my kids was/is horrendous. Think suicidal, memory loss, hallucinations, severe violence, panic attacks etc(these are young children)...Thank G-d, we have excellent neurologist taking care of us.)

OP, a speech pathologist may help you with the stuttering. It ALSO doesn't hurt to swab and culture him for strep. Especially if his stuttering comes and goes. A short course of antibiotics may help you in the short term to stop the stuttering when it comes next.
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amother
Babyblue


 

Post Mon, Jul 06 2020, 6:22 pm
amother [ Amethyst ] wrote:
As a SLP, you SHOULD be suggesting things like PANDAS to parents when they have an issue. My 10 year old son's stuttering came and went WITH strep infections.
My almost 3 year old child has major speech delays. Guess what? Every time he is on antibiotic this year for strep (happened 3 times), his language improved by miles. I haven't gotten him speech therapy yet.
I have 2 clear cut cases of PANDAS in my home (not even the 10 year old, or the 3 year old).
PANDAS is brain inflammation caused by autoantibodies (not strep antibodies) attacking the brain after an infection or virus.
Babies can get viruses or infections, as can children, teens and adults. Babies can get Lyme Disease, strep, flu, RSV, and even COVID.
If the brain inflammation is in the region where speech is, you WILL have speech delays or apraxia.

In older children, a hallmark sign of PANDAS/brain inflammation is handwriting changes (shaky messy handwriting, writing backwards, writing huge, unable to make a picture according to age level etc.), as well as math challenges.
In babies and young children, their neurological deficits are harder to pinpoint because there is no frame of reference from before infection or virus. It doesn't mean that this doesn't effect that age population.
PANDAS isn't just about tics and OCD, nor is it just about strep because any infection or virus can cause an autoimmune attack on the brain. And depending which area of the brain is inflamed is where you will see those deficits.

Mrs. SLP, sorry for my long soapbox. But it truly saddens me how little education there is out there for those in the medical field and educational field regarding PANDAS.
There is SO much research coming out of Stanford, Columbia, Yale etc. regarding this disease. Yet it hasn't trickled down to those who really need to see it (the pediatricians, psychiatrists, therapists,etc)

It hurts to see you so cavalierly dismiss PANDAS as maybe being a cause of stuttering. Especially when life as a PANDAS parent is literally HELL, with almost no support from those traditionally supposed to be in supportive positions.

( A small window into my life:We had a virus pass through our home last week. It wasn't strep. The aftermath for my kids was/is horrendous. Think suicidal, memory loss, hallucinations, severe violence, panic attacks etc(these are young children)...Thank G-d, we have excellent neurologist taking care of us.)

OP, a speech pathologist may help you with the stuttering. It ALSO doesn't hurt to swab and culture him for strep. Especially if his stuttering comes and goes. A short course of antibiotics may help you in the short term to stop the stuttering when it comes next.
wow. This is an incredibly informed post. I wish I knew who you were.

To the slp who said pandas isn’t included in a stuttering workup/evaluation, that make sense. Your are a therapist, not a dr. Your training is not in looking for root causes, just in treating symptoms. Which definitely has its place. But is not the be all and end all of neurological symptoms.
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amother
OP


 

Post Mon, Jul 06 2020, 7:29 pm
amother [ Amethyst ] wrote:
As a SLP, you SHOULD be suggesting things like PANDAS to parents when they have an issue. My 10 year old son's stuttering came and went WITH strep infections.
My almost 3 year old child has major speech delays. Guess what? Every time he is on antibiotic this year for strep (happened 3 times), his language improved by miles. I haven't gotten him speech therapy yet.
I have 2 clear cut cases of PANDAS in my home (not even the 10 year old, or the 3 year old).
PANDAS is brain inflammation caused by autoantibodies (not strep antibodies) attacking the brain after an infection or virus.
Babies can get viruses or infections, as can children, teens and adults. Babies can get Lyme Disease, strep, flu, RSV, and even COVID.
If the brain inflammation is in the region where speech is, you WILL have speech delays or apraxia.

In older children, a hallmark sign of PANDAS/brain inflammation is handwriting changes (shaky messy handwriting, writing backwards, writing huge, unable to make a picture according to age level etc.), as well as math challenges.
In babies and young children, their neurological deficits are harder to pinpoint because there is no frame of reference from before infection or virus. It doesn't mean that this doesn't effect that age population.
PANDAS isn't just about tics and OCD, nor is it just about strep because any infection or virus can cause an autoimmune attack on the brain. And depending which area of the brain is inflamed is where you will see those deficits.

Mrs. SLP, sorry for my long soapbox. But it truly saddens me how little education there is out there for those in the medical field and educational field regarding PANDAS.
There is SO much research coming out of Stanford, Columbia, Yale etc. regarding this disease. Yet it hasn't trickled down to those who really need to see it (the pediatricians, psychiatrists, therapists,etc)

It hurts to see you so cavalierly dismiss PANDAS as maybe being a cause of stuttering. Especially when life as a PANDAS parent is literally HELL, with almost no support from those traditionally supposed to be in supportive positions.

( A small window into my life:We had a virus pass through our home last week. It wasn't strep. The aftermath for my kids was/is horrendous. Think suicidal, memory loss, hallucinations, severe violence, panic attacks etc(these are young children)...Thank G-d, we have excellent neurologist taking care of us.)

OP, a speech pathologist may help you with the stuttering. It ALSO doesn't hurt to swab and culture him for strep. Especially if his stuttering comes and goes. A short course of antibiotics may help you in the short term to stop the stuttering when it comes next.


I definitely hear you! I am happy to investigate any route that can potentially help. I was under the impression though, that PANDAS is diagnosed by a blood test, not throat swab. Is that correct?
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amother
OP


 

Post Mon, Jul 06 2020, 7:32 pm
amother [ Brown ] wrote:
Im not the amother from above, but I'm also an SLP and agree with everything she said. I'm not near you but I have experience working with children who stutter. I recommend looking into the Lidcombe Program. It involves a lot of parent training and involvement in sessions.

Do you have a way I can message you the name of a specialist in NJ?

In the meantime, don't interrupt your son, let him speak, speak to him slowly, model slow relaxed speech, try not to react in a negative way.

Hatzlacha!


Thank you! I'd love to hear more about the Lidcombe program, if you have more info.

Feel free to send the message about the specialist to igaiwbeb@gmail.com, as I prefer to stay amother here, and I assume you do too Smile
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amother
Amethyst


 

Post Mon, Jul 06 2020, 7:38 pm
If I can add just one more point to the speech therapists. What if simple antibiotics would save ur client hundreds of hours of therapy because the stuttering simply disappears?
And I'm reiterating that I'm NOT saying that PANDAS is the cause of stuttering. I'm saying it MAY be the cause. And it behooves the therapists to at least educate themselves and their clients as such.

And I would say the same thing to the hundreds of psychologists and therapists trying to help their young clients with anxiety and OCD. What if antibiotics could save ur client hundreds of hours of therapy and thousands of dollars? Because the anxiety disappears with the right treatment? Is it honest to yourself and your clients to at minimum, ask them if they had a medical workup prior to coming for help?
There is a place for all kinds of therapists in the world and they truly do help. But getting the right medical treatment can make the difference between years of therapy or weeks (or none at all being needed.)

(If anyone has any questions on the ways PANDAS can present itself, the causes and its management, we can start another thread where I will be happy to chat).
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amother
Babyblue


 

Post Mon, Jul 06 2020, 8:15 pm
amother [ OP ] wrote:
I definitely hear you! I am happy to investigate any route that can potentially help. I was under the impression though, that PANDAS is diagnosed by a blood test, not throat swab. Is that correct?
pandas is a clinical diagnosis, no lab test can rule it in or out. But both bloodwork and throat swabs can present clues that may aid in making a diagnosis. A positive throat swab is not necessary for the diagnosis, and bloodwork (titers) are more commonly used because according to the strict diagnostic criteria pandas is post infectious, meaning, after the infection has come and gone. The titers will indicate recent past infection. But experience has shown that some kids present with symptoms concurrently with acute infections. So they might get a positive swab too.
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amother
Amethyst


 

Post Mon, Jul 06 2020, 10:01 pm
amother [ OP ] wrote:
I definitely hear you! I am happy to investigate any route that can potentially help. I was under the impression though, that PANDAS is diagnosed by a blood test, not throat swab. Is that correct?


If the stuttering got really bad recently, the first thing to do would be a strep swab AND culture to rule out current active strep. If negative, bloodwork will be necessary to determine trigger virus or infection. That is unfortunately more complicated to convince your doctor to do. And your personal decision to make if you want to go down that route.
I would also personally do a motrin test. A motrin test is when you give motrin at his weight dose three times a day for a few days to see if there is any improvement in symptoms. If there is, it would be a sign that brain inflammation is present.
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