Stuttering as vocal tic

[laurena82]

(Preamble : "stuttering" is listed on all of the TS symptom lists as a "vocal tic"...my son had diagnosed TS as well as stuttering for many years)....

 

Hi everyone,

 

I just found this site the other day...

 

My oldest son (age 24 1/2 now) suffered (alot, IMO!) with tourettes as a child. In retrospect, the hugest struggle was with speech.......and there are some things I WISH I had known sooner....(ALOT sooner!)

 

1. "stuttering" is not just "p-p-p-p-p-please"......

"stuttering" can also be "blocks" where you cant get any sound out to even start a word....

 

(so he struggles and struggles to get the first word out....but once done, the entire sentence is completely fluent...he had this for years before I had a clue what it was)

 

2. (and this is even more important,....or was in my son's case):

 

Not all "speech therapists" are the same!

 

Stuttering etc is known as a "dysfluency" (latin= "difficulty" with "fluency")....and speech therapists can take ADDITIONAL TRAINING in that field........apparently (OBVIOUSLY>>>>>Because it happened to my son)....some speech therapists become a speech therapist WITHOUT this additional training in methods that are SPECIFICALLY GEARED to "dysfluencies".

 

 

Short history:

(OK..it's not really short...it's long and painful ...sigh...):

 

He started talking at a young age. HE was talking in full sentences before age 2. FOlks would remark how CLEARLY he spoke for such a young tyke. (not sure if this is relevent at all?)

 

At age 2 1/2 (at end of summer....if that means anything....later, allergies had such a role in TS tics, I wonder....?...and his allergies always flare at end of summer....pollens then.......hmmm...??.....)...anyhow, he started with *typical* stuttering..."p p p p p p lease"..."MMMMMMMMMom" etc.

 

This lasted ? til the winter it pretty well subsided.....I consulted a speech therapist acquaintance, who suggested reading nursery rhymes slowly with him, and modeling my own speech to him slowly......it helped (or else went away on its own)

 

HOWEVER.....

he did develop these "blocks" where when he tried to talk...no sound would come out......(I Had no idea that was "stuttering" still). As the years went on , this becaome more pronounced....definitely by kindergarten age....but I still didnt know it would be "stuttering" or something a speech therapist helped with....(? call me dense? LOL..). Kindergarten teacher didnt even notice it....large class....he's quiet (cant get any sound out) until he talks....then, he's fluent when he DOES talk.

 

Then I happened across a book at library re: stuttering....and realized this WAS a form....it's just the vocal "block" was occuring BEFORE the word...rather than after he started saying word(as more familiar 'stuttering" is)......

 

So, I contacted school and asked for speech evaluation.......hah!

 

I got a phone call from the speech teacher, who said she got my request, and kindergarten teacher said child had no speech problem, and I got a whole long song and dance re: parents can read books and that's dangerous because you "imagine" your child to have such things, yada yada...but, she'd talk with son and see anyhow.....

 

HAH!

 

Yes, ...so, the NEXT phone call from her she's telling me how she talked with him, and in x many minutes he had Y many "blocks"....and that is VERY SERIOUS amount of stuttering blocks, and she will make up IEP and start him in speech therapy so many times a week, etc etc etc.

 

geesh.

 

sigh.

 

But, at least he was now going to get "help".

 

hahdhahahahahahahahaha....

 

Well, 5 years later, ...at the end of 4th grade....he was no better....those were terrible/painful years watching him suffer.....(and why I want to be able to offer any help or support to others here going through all of this stuff now!)

 

 

OK....of interest perhaps...? (I havent read much on TS etc since he was mid teen years and it started subsiding...YES! things finally got GREATLY improved! )

 

ANYHOW...of interest, perhaps, ...both he and his brother (my middle son) got a full blown case of B strep (they had the whole "scarlet fever" deal....the strawberry tongue, desquamation of fingertips, etc....heck, this poor kid even had desquamation of his penis/scrotum! ) at age 5 also

 

By first grade....he had these noticeable motor tics...facial movements, etc.....

The speech teacher assured me these were "secondary speech characteristics"...that kids who stuttered would do some funny little movement...and ..voila! they were fluent that time! So, ...they'd start doing that movement everytime they tried to speak.....but, ....alas...stutter again...so, then they'd try another movement...voila! it worked....add THAT movement....and, ..pretty soon, they are doing this whole facial movement/foot stomping thing everytime they try to speak.

 

So...OK, ...this made sense.

 

But...eventually I started noticing....huh......HE"S MAKING THESE MOVEMENTS WHEN HE HAS ABSOLUTELY NO INTENTION OF SPEAKING!

 

hmmmmm...strange.....

 

 

eventually...one couple we knew saw him doing that , and said, "that looks like TS".....and I, of course, said, "oh, no, no, no...those are SECONDARY SPEECH CHARACTERISTICS" and went into the speech therapists drill........

 

but, somehow, it must have made me question it all....

 

somehow (there was no interet...and I live in VERY rural area) I got info onTS.....GOSH! those symptoms fit him to a T! I also got a video tape from somewhere (I think it was tourette syndrome foundation or something? ) that showed kids with TS and went over the diagnosing criteria...I think it was a training tape for MDs, actually....to help family MD's identify it and diagnose it....

 

anyhow....I knew/believed it then.

 

I read up on it, got newsletter from that TS foundation.....and they had a kind of sidegroup forming on "alternative treatments" for TS....with its own newsletter...which was very helpful.....(this later morphed into Latitudes)

 

I brought him to pediatrician, who agreed with diagnosis...and suggested she was familiar with clonidine (catapres) cause she used that with ADHD patients, and it was a drug for TS, ...she could start him on that then refer me to neurologist for follow up...

 

I was real hesitatnt on drugs......

 

tried every "alternative" thing I could....because, you'd see some relief......but, never the stuttering relieved.

 

AND....hah!....once the TS was diagnosed, and I "educated" the speech therapist on it....she basically washed her hands of expecting him to improve, "well, the stuttering is caused by the TS...and I cant do anything about that "......

 

By 3rd grade...we had done all of this food allergy stuff.....he had almost full relief from MOTOR TICS by (completely) eliminating offending foods (VERY difficult in real life.....VERY DIFFICULT!!)...but he still had the vocal tics/stuttering

 

So, ...finally decided we needed to try to meds....if it would help his vocal tics...it would be worth it.....

 

Tried both Clonidine (catpres) and Haldol (haloperidol) ....both worked on motor tics, but not vocal tics. (NOTE: I would NOT recommend Haldol to anyone...because risk of Tardive DYskinesias..."permanent side effects".....IMO< you need to SERIOUSLY weight benefits vs. risks there)

 

EVENTUALLY....went to using catapres for motor tics, because food avoidance was SOOOOOOO difficult (FWIW: we did try the allergy neutralization drops....didnt see results with that)

 

He REALLY strugged during 4th grade....sigh....long story, but at end of school year, I started paying out of pocket to take him to speech therapy at local hospital where a speech theraprist TRAINED IN DYSFLUENCY TREATMENT worked....this started in May....by september.....he could speak with out the "blocks".....he just needed addtional practice in remembering how to do it.......and within a year.....he wasnt "stuttering" at all anymore.....[in fact, his new teacher at school wasnt aware he had ever had a problem !

 

He continued on the catapres until about ? age 14...the neurologist one time said, "you know, he's on such a small dose, he probably doesnt even need it"...and so as a trial we took him off...and he's been off since. He had told me that quite often kids "outgrow" TS....and I thought it was pie in the sky to believe this....

 

but, apparently it CAN happen....because it did..... (yea!)

 

 

In retrospect...

 

I just wish EVERYONE/ANYONE involved with "speech" problems as a vocal tic (or not) could know that ALL SPEECH THERAPISTS are NOT created equally....and, hah...IMO, my son certainly had a disservice to him by the school ST not recognizing that she wasnt adequately trained to handle him and recommending treatment elsewhere.

 

{{{{{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}}}}}}}to all of you moms who are doing all you can to help your wonderful children right now....

 

 

If I can help just one mom get relief sooner for her child...it is certainly worth it....

 

it is SOOOOOO painful to sit by and watch your wonderful child suffer like this......

 

BEST WISHES to all....

 

 

 

Feel free to reply here or PM me if there's anything I can help you with or (?) direct you to.....

 

again..."latitudes" was a (new) monthly newsletter back then....and SOOO helpful.....I"m SOOOOOO glad to see it has evolved to thiday!!s level of support too

 

 

PS:

IN RETROSPECT....

I wish I could remember more about his OTHER vocal tics.

 

He most definitely DID have this high pitched "hee" "hee" sound he'd make. I cant remember others? Obviously I was calling the stuttering a vocal tic, and so when I say the catapres and/or allergy elimination almost completely elimintated the MOTOR TICs, but not the VOCAL TICS....the BIG issue in my mind was always the STUTTERING........as when he couldnt get any speech out....wow....was that difficult....

 

IN RETROSPECT....I wish I could remember if I felt the "hee" "hee" and other "vocal tics" were reduced/eliminated with catapres. I know the stuttering WASNT affected at all, and I know the neurologist confirmed that vocal tics are MUCH harder to eliminate than motor tics.

 

BUT NOW...(again...15 plus years later retrospect)....I wonder if the catapres/etc DID suppress more of the "non stuttering" vocal tics than I recall? (I was just so focused on the stuttering aspect, that elimination of the "OTHER" vocal tics would be positive.......but not the solution I was trying to get to,....KWIM?)

[laurena82]

tried to remove this post, because I "replied" instead of "edited" original !!

[susie]

(Preamble : "stuttering" is listed on all of the TS symptom lists as a "vocal tic"...my son had diagnosed TS as well as stuttering for many years)....

 

Hi everyone,

 

I just found this site the other day...

 

My oldest son (age 24 1/2 now) suffered (alot, IMO!) with tourettes as a child. In retrospect, the hugest struggle was with speech.......and there are some things I WISH I had known sooner....(ALOT sooner!)

 

1. "stuttering" is not just "p-p-p-p-p-please"......

"stuttering" can also be "blocks" where you cant get any sound out to even start a word....

 

(so he struggles and struggles to get the first word out....but once done, the entire sentence is completely fluent...he had this for years before I had a clue what it was)

 

2. (and this is even more important,....or was in my son's case):

 

Not all "speech therapists" are the same!

 

Stuttering etc is known as a "dysfluency" (latin= "difficulty" with "fluency")....and speech therapists can take ADDITIONAL TRAINING in that field........apparently (OBVIOUSLY>>>>>Because it happened to my son)....some speech therapists become a speech therapist WITHOUT this additional training in methods that are SPECIFICALLY GEARED to "dysfluencies".

 

 

Short history:

(OK..it's not really short...it's long and painful ...sigh...):

 

He started talking at a young age. HE was talking in full sentences before age 2. FOlks would remark how CLEARLY he spoke for such a young tyke. (not sure if this is relevent at all?)

 

At age 2 1/2 (at end of summer....if that means anything....later, allergies had such a role in TS tics, I wonder....?...and his allergies always flare at end of summer....pollens then.......hmmm...??.....)...anyhow, he started with *typical* stuttering..."p p p p p p lease"..."MMMMMMMMMom" etc.

 

This lasted ? til the winter it pretty well subsided.....I consulted a speech therapist acquaintance, who suggested reading nursery rhymes slowly with him, and modeling my own speech to him slowly......it helped (or else went away on its own)

 

HOWEVER.....

he did develop these "blocks" where when he tried to talk...no sound would come out......(I Had no idea that was "stuttering" still). As the years went on , this becaome more pronounced....definitely by kindergarten age....but I still didnt know it would be "stuttering" or something a speech therapist helped with....(? call me dense? LOL..). Kindergarten teacher didnt even notice it....large class....he's quiet (cant get any sound out) until he talks....then, he's fluent when he DOES talk.

 

Then I happened across a book at library re: stuttering....and realized this WAS a form....it's just the vocal "block" was occuring BEFORE the word...rather than after he started saying word(as more familiar 'stuttering" is)......

 

So, I contacted school and asked for speech evaluation.......hah!

 

I got a phone call from the speech teacher, who said she got my request, and kindergarten teacher said child had no speech problem, and I got a whole long song and dance re: parents can read books and that's dangerous because you "imagine" your child to have such things, yada yada...but, she'd talk with son and see anyhow.....

 

HAH!

 

Yes, ...so, the NEXT phone call from her she's telling me how she talked with him, and in x many minutes he had Y many "blocks"....and that is VERY SERIOUS amount of stuttering blocks, and she will make up IEP and start him in speech therapy so many times a week, etc etc etc.

 

geesh.

 

sigh.

 

But, at least he was now going to get "help".

 

hahdhahahahahahahahaha....

 

Well, 5 years later, ...at the end of 4th grade....he was no better....those were terrible/painful years watching him suffer.....(and why I want to be able to offer any help or support to others here going through all of this stuff now!)

 

 

OK....of interest perhaps...? (I havent read much on TS etc since he was mid teen years and it started subsiding...YES! things finally got GREATLY improved! )

 

ANYHOW...of interest, perhaps, ...both he and his brother (my middle son) got a full blown case of B strep (they had the whole "scarlet fever" deal....the strawberry tongue, desquamation of fingertips, etc....heck, this poor kid even had desquamation of his penis/scrotum! ) at age 5 also

 

By first grade....he had these noticeable motor tics...facial movements, etc.....

The speech teacher assured me these were "secondary speech characteristics"...that kids who stuttered would do some funny little movement...and ..voila! they were fluent that time! So, ...they'd start doing that movement everytime they tried to speak.....but, ....alas...stutter again...so, then they'd try another movement...voila! it worked....add THAT movement....and, ..pretty soon, they are doing this whole facial movement/foot stomping thing everytime they try to speak.

 

So...OK, ...this made sense.

 

But...eventually I started noticing....huh......HE"S MAKING THESE MOVEMENTS WHEN HE HAS ABSOLUTELY NO INTENTION OF SPEAKING!

 

hmmmmm...strange.....

 

 

eventually...one couple we knew saw him doing that , and said, "that looks like TS".....and I, of course, said, "oh, no, no, no...those are SECONDARY SPEECH CHARACTERISTICS" and went into the speech therapists drill........

 

but, somehow, it must have made me question it all....

 

somehow (there was no interet...and I live in VERY rural area) I got info onTS.....GOSH! those symptoms fit him to a T! I also got a video tape from somewhere (I think it was tourette syndrome foundation or something? ) that showed kids with TS and went over the diagnosing criteria...I think it was a training tape for MDs, actually....to help family MD's identify it and diagnose it....

 

anyhow....I knew/believed it then.

 

I read up on it, got newsletter from that TS foundation.....and they had a kind of sidegroup forming on "alternative treatments" for TS....with its own newsletter...which was very helpful.....(this later morphed into Latitudes)

 

I brought him to pediatrician, who agreed with diagnosis...and suggested she was familiar with clonidine (catapres) cause she used that with ADHD patients, and it was a drug for TS, ...she could start him on that then refer me to neurologist for follow up...

 

I was real hesitatnt on drugs......

 

tried every "alternative" thing I could....because, you'd see some relief......but, never the stuttering relieved.

 

AND....hah!....once the TS was diagnosed, and I "educated" the speech therapist on it....she basically washed her hands of expecting him to improve, "well, the stuttering is caused by the TS...and I cant do anything about that "......

 

By 3rd grade...we had done all of this food allergy stuff.....he had almost full relief from MOTOR TICS by (completely) eliminating offending foods (VERY difficult in real life.....VERY DIFFICULT!!)...but he still had the vocal tics/stuttering

 

So, ...finally decided we needed to try to meds....if it would help his vocal tics...it would be worth it.....

 

Tried both Clonidine (catpres) and Haldol (haloperidol) ....both worked on motor tics, but not vocal tics. (NOTE: I would NOT recommend Haldol to anyone...because risk of Tardive DYskinesias..."permanent side effects".....IMO< you need to SERIOUSLY weight benefits vs. risks there)

 

EVENTUALLY....went to using catapres for motor tics, because food avoidance was SOOOOOOO difficult (FWIW: we did try the allergy neutralization drops....didnt see results with that)

 

He REALLY strugged during 4th grade....sigh....long story, but at end of school year, I started paying out of pocket to take him to speech therapy at local hospital where a speech theraprist TRAINED IN DYSFLUENCY TREATMENT worked....this started in May....by september.....he could speak with out the "blocks".....he just needed addtional practice in remembering how to do it.......and within a year.....he wasnt "stuttering" at all anymore.....[in fact, his new teacher at school wasnt aware he had ever had a problem !

 

He continued on the catapres until about ? age 14...the neurologist one time said, "you know, he's on such a small dose, he probably doesnt even need it"...and so as a trial we took him off...and he's been off since. He had told me that quite often kids "outgrow" TS....and I thought it was pie in the sky to believe this....

 

but, apparently it CAN happen....because it did..... (yea!)

 

 

In retrospect...

 

I just wish EVERYONE/ANYONE involved with "speech" problems as a vocal tic (or not) could know that ALL SPEECH THERAPISTS are NOT created equally....and, hah...IMO, my son certainly had a disservice to him by the school ST not recognizing that she wasnt adequately trained to handle him and recommending treatment elsewhere.

 

{{{{{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}}}}}}}to all of you moms who are doing all you can to help your wonderful children right now....

 

 

If I can help just one mom get relief sooner for her child...it is certainly worth it....

 

it is SOOOOOO painful to sit by and watch your wonderful child suffer like this......

 

BEST WISHES to all....

 

 

 

Feel free to reply here or PM me if there's anything I can help you with or (?) direct you to.....

 

again..."latitudes" was a (new) monthly newsletter back then....and SOOO helpful.....I"m SOOOOOO glad to see it has evolved to thiday!!s level of support too

 

 

PS:

IN RETROSPECT....

I wish I could remember more about his OTHER vocal tics.

 

He most definitely DID have this high pitched "hee" "hee" sound he'd make. I cant remember others? Obviously I was calling the stuttering a vocal tic, and so when I say the catapres and/or allergy elimination almost completely elimintated the MOTOR TICs, but not the VOCAL TICS....the BIG issue in my mind was always the STUTTERING........as when he couldnt get any speech out....wow....was that difficult....

 

IN RETROSPECT....I wish I could remember if I felt the "hee" "hee" and other "vocal tics" were reduced/eliminated with catapres. I know the stuttering WASNT affected at all, and I know the neurologist confirmed that vocal tics are MUCH harder to eliminate than motor tics.

 

BUT NOW...(again...15 plus years later retrospect)....I wonder if the catapres/etc DID suppress more of the "non stuttering" vocal tics than I recall? (I was just so focused on the stuttering aspect, that elimination of the "OTHER" vocal tics would be positive.......but not the solution I was trying to get to,....KWIM?)

 

 

Thanks for this post. My daughter has stuttered for about 2 years now and has developed motor tics over the past 6 months and vocal tics in the past month. I always thought that there was something a little different about her stuttering, but the speech therapist said it was just run of the mill stuttering. We did the Lidcombe program for about 6 months with very little improvement. The most improvement I ever saw in her stuttering was when we started her on GABA for anxiety. It almost completely eliminated the stuttering for a couple of months, but then it came back full force. Strangely, it seems that the stuttering has improved in the past month since the other vocal tics started. I'm really pretty sure that the stutter is a tic. The speech therapist wants me to get a neurologist to confirm that the stutter is a tic, but I seriously have doubts that a neurologist can do that.

 

Do you remember the type of therapy that finally worked for your son's stutter? The speech therapist (who specializes in stuttering) is willing to try something different and I'd love to know what helped your son.

 

Thanks so much.

 

Sue

[laurena82]

(Preamble : "stuttering" is listed on all of the TS symptom lists as a "vocal tic"...my son had diagnosed TS as well as stuttering for many years)....

 

Hi everyone,

 

I just found this site the other day...

 

My oldest son (age 24 1/2 now) suffered (alot, IMO!) with tourettes as a child. In retrospect, the hugest struggle was with speech.......and there are some things I WISH I had known sooner....(ALOT sooner!)

 

1. "stuttering" is not just "p-p-p-p-p-please"......

"stuttering" can also be "blocks" where you cant get any sound out to even start a word....

 

(so he struggles and struggles to get the first word out....but once done, the entire sentence is completely fluent...he had this for years before I had a clue what it was)

 

2. (and this is even more important,....or was in my son's case):

 

Not all "speech therapists" are the same!

 

Stuttering etc is known as a "dysfluency" (latin= "difficulty" with "fluency")....and speech therapists can take ADDITIONAL TRAINING in that field........apparently (OBVIOUSLY>>>>>Because it happened to my son)....some speech therapists become a speech therapist WITHOUT this additional training in methods that are SPECIFICALLY GEARED to "dysfluencies".

 

 

Short history:

(OK..it's not really short...it's long and painful ...sigh...):

 

He started talking at a young age. HE was talking in full sentences before age 2. FOlks would remark how CLEARLY he spoke for such a young tyke. (not sure if this is relevent at all?)

 

At age 2 1/2 (at end of summer....if that means anything....later, allergies had such a role in TS tics, I wonder....?...and his allergies always flare at end of summer....pollens then.......hmmm...??.....)...anyhow, he started with *typical* stuttering..."p p p p p p lease"..."MMMMMMMMMom" etc.

 

This lasted ? til the winter it pretty well subsided.....I consulted a speech therapist acquaintance, who suggested reading nursery rhymes slowly with him, and modeling my own speech to him slowly......it helped (or else went away on its own)

 

HOWEVER.....

he did develop these "blocks" where when he tried to talk...no sound would come out......(I Had no idea that was "stuttering" still). As the years went on , this becaome more pronounced....definitely by kindergarten age....but I still didnt know it would be "stuttering" or something a speech therapist helped with....(? call me dense? LOL..). Kindergarten teacher didnt even notice it....large class....he's quiet (cant get any sound out) until he talks....then, he's fluent when he DOES talk.

 

Then I happened across a book at library re: stuttering....and realized this WAS a form....it's just the vocal "block" was occuring BEFORE the word...rather than after he started saying word(as more familiar 'stuttering" is)......

 

So, I contacted school and asked for speech evaluation.......hah!

 

I got a phone call from the speech teacher, who said she got my request, and kindergarten teacher said child had no speech problem, and I got a whole long song and dance re: parents can read books and that's dangerous because you "imagine" your child to have such things, yada yada...but, she'd talk with son and see anyhow.....

 

HAH!

 

Yes, ...so, the NEXT phone call from her she's telling me how she talked with him, and in x many minutes he had Y many "blocks"....and that is VERY SERIOUS amount of stuttering blocks, and she will make up IEP and start him in speech therapy so many times a week, etc etc etc.

 

geesh.

 

sigh.

 

But, at least he was now going to get "help".

 

hahdhahahahahahahahaha....

 

Well, 5 years later, ...at the end of 4th grade....he was no better....those were terrible/painful years watching him suffer.....(and why I want to be able to offer any help or support to others here going through all of this stuff now!)

 

 

OK....of interest perhaps...? (I havent read much on TS etc since he was mid teen years and it started subsiding...YES! things finally got GREATLY improved! )

 

ANYHOW...of interest, perhaps, ...both he and his brother (my middle son) got a full blown case of B strep (they had the whole "scarlet fever" deal....the strawberry tongue, desquamation of fingertips, etc....heck, this poor kid even had desquamation of his penis/scrotum! ) at age 5 also

 

By first grade....he had these noticeable motor tics...facial movements, etc.....

The speech teacher assured me these were "secondary speech characteristics"...that kids who stuttered would do some funny little movement...and ..voila! they were fluent that time! So, ...they'd start doing that movement everytime they tried to speak.....but, ....alas...stutter again...so, then they'd try another movement...voila! it worked....add THAT movement....and, ..pretty soon, they are doing this whole facial movement/foot stomping thing everytime they try to speak.

 

So...OK, ...this made sense.

 

But...eventually I started noticing....huh......HE"S MAKING THESE MOVEMENTS WHEN HE HAS ABSOLUTELY NO INTENTION OF SPEAKING!

 

hmmmmm...strange.....

 

 

eventually...one couple we knew saw him doing that , and said, "that looks like TS".....and I, of course, said, "oh, no, no, no...those are SECONDARY SPEECH CHARACTERISTICS" and went into the speech therapists drill........

 

but, somehow, it must have made me question it all....

 

somehow (there was no interet...and I live in VERY rural area) I got info onTS.....GOSH! those symptoms fit him to a T! I also got a video tape from somewhere (I think it was tourette syndrome foundation or something? ) that showed kids with TS and went over the diagnosing criteria...I think it was a training tape for MDs, actually....to help family MD's identify it and diagnose it....

 

anyhow....I knew/believed it then.

 

I read up on it, got newsletter from that TS foundation.....and they had a kind of sidegroup forming on "alternative treatments" for TS....with its own newsletter...which was very helpful.....(this later morphed into Latitudes)

 

I brought him to pediatrician, who agreed with diagnosis...and suggested she was familiar with clonidine (catapres) cause she used that with ADHD patients, and it was a drug for TS, ...she could start him on that then refer me to neurologist for follow up...

 

I was real hesitatnt on drugs......

 

tried every "alternative" thing I could....because, you'd see some relief......but, never the stuttering relieved.

 

AND....hah!....once the TS was diagnosed, and I "educated" the speech therapist on it....she basically washed her hands of expecting him to improve, "well, the stuttering is caused by the TS...and I cant do anything about that "......

 

By 3rd grade...we had done all of this food allergy stuff.....he had almost full relief from MOTOR TICS by (completely) eliminating offending foods (VERY difficult in real life.....VERY DIFFICULT!!)...but he still had the vocal tics/stuttering

 

So, ...finally decided we needed to try to meds....if it would help his vocal tics...it would be worth it.....

 

Tried both Clonidine (catpres) and Haldol (haloperidol) ....both worked on motor tics, but not vocal tics. (NOTE: I would NOT recommend Haldol to anyone...because risk of Tardive DYskinesias..."permanent side effects".....IMO< you need to SERIOUSLY weight benefits vs. risks there)

 

EVENTUALLY....went to using catapres for motor tics, because food avoidance was SOOOOOOO difficult (FWIW: we did try the allergy neutralization drops....didnt see results with that)

 

He REALLY strugged during 4th grade....sigh....long story, but at end of school year, I started paying out of pocket to take him to speech therapy at local hospital where a speech theraprist TRAINED IN DYSFLUENCY TREATMENT worked....this started in May....by september.....he could speak with out the "blocks".....he just needed addtional practice in remembering how to do it.......and within a year.....he wasnt "stuttering" at all anymore.....[in fact, his new teacher at school wasnt aware he had ever had a problem !

 

He continued on the catapres until about ? age 14...the neurologist one time said, "you know, he's on such a small dose, he probably doesnt even need it"...and so as a trial we took him off...and he's been off since. He had told me that quite often kids "outgrow" TS....and I thought it was pie in the sky to believe this....

 

but, apparently it CAN happen....because it did..... (yea!)

 

 

In retrospect...

 

I just wish EVERYONE/ANYONE involved with "speech" problems as a vocal tic (or not) could know that ALL SPEECH THERAPISTS are NOT created equally....and, hah...IMO, my son certainly had a disservice to him by the school ST not recognizing that she wasnt adequately trained to handle him and recommending treatment elsewhere.

 

{{{{{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}}}}}}}to all of you moms who are doing all you can to help your wonderful children right now....

 

 

If I can help just one mom get relief sooner for her child...it is certainly worth it....

 

it is SOOOOOO painful to sit by and watch your wonderful child suffer like this......

 

BEST WISHES to all....

 

 

 

Feel free to reply here or PM me if there's anything I can help you with or (?) direct you to.....

 

again..."latitudes" was a (new) monthly newsletter back then....and SOOO helpful.....I"m SOOOOOO glad to see it has evolved to thiday!!s level of support too

 

 

PS:

IN RETROSPECT....

I wish I could remember more about his OTHER vocal tics.

 

He most definitely DID have this high pitched "hee" "hee" sound he'd make. I cant remember others? Obviously I was calling the stuttering a vocal tic, and so when I say the catapres and/or allergy elimination almost completely elimintated the MOTOR TICs, but not the VOCAL TICS....the BIG issue in my mind was always the STUTTERING........as when he couldnt get any speech out....wow....was that difficult....

 

IN RETROSPECT....I wish I could remember if I felt the "hee" "hee" and other "vocal tics" were reduced/eliminated with catapres. I know the stuttering WASNT affected at all, and I know the neurologist confirmed that vocal tics are MUCH harder to eliminate than motor tics.

 

BUT NOW...(again...15 plus years later retrospect)....I wonder if the catapres/etc DID suppress more of the "non stuttering" vocal tics than I recall? (I was just so focused on the stuttering aspect, that elimination of the "OTHER" vocal tics would be positive.......but not the solution I was trying to get to,....KWIM?)

 

 

Thanks for this post. My daughter has stuttered for about 2 years now and has developed motor tics over the past 6 months and vocal tics in the past month. I always thought that there was something a little different about her stuttering, but the speech therapist said it was just run of the mill stuttering. We did the Lidcombe program for about 6 months with very little improvement. The most improvement I ever saw in her stuttering was when we started her on GABA for anxiety. It almost completely eliminated the stuttering for a couple of months, but then it came back full force. Strangely, it seems that the stuttering has improved in the past month since the other vocal tics started. I'm really pretty sure that the stutter is a tic. The speech therapist wants me to get a neurologist to confirm that the stutter is a tic, but I seriously have doubts that a neurologist can do that.

 

Do you remember the type of therapy that finally worked for your son's stutter? The speech therapist (who specializes in stuttering) is willing to try something different and I'd love to know what helped your son.

 

Thanks so much.

 

Sue

 

Hi Sue--

 

I'm sorry I didnt see your reply to this until now. I havent been on the board much, but I checked in and saw someone else wrote re: stuttering, and I went back to try to find an old post to link to her (although I dont know how to "link" posts, either!)---at least this way I can *bump* it up on the posting list--------

 

RE: what type of speech therapy----

 

I dont know the name of it, but it involved teaching him to start his word/phrase R-----e------a-------l------l----y slow----------he had to deliberately drone (was that what he called it? ) the first few words out REALLY slowly and drawn out.......then, as he got into the sentence, he could pick up the pace. My son's "blocks" were primarily at beginning of sentence.

 

What I DO know is that the speech therapist who helped him had additional training in "dysfluencies"----that the therapist at school didnt have---nor did she seem to know she didnt have the right training-----------once she learned of "TS" diagnosis---it was like she washed her hands of being able to help him .."oh, he has TS---I cant do anything about that"-----so, nothing happpened for abour 4 plus years.........

 

I'm glad your therapist is willing to look into other things. I'm sorry I didnt see your post sooner.

 

 

As I recall, at first he had simply a list of words that (I think?) he had to say while looking in the mirror at how he said them SLOWLY....

 

I will PM you also........

[kdnc5716]

Thanks for sharing your story! This was helpful to me to read! I am going to ask our speech therapist her thoughts tomorrow...