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How many children have/had speech apraxia?


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26 replies to this topic

#1 shadowtails

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Posted 03 November 2010 - 11:20 AM

My DD had a severe case when younger. I had her in speech therapy by the time she was 3yrs. Her speech is perfect now, but I'm just wondering if any others had experienced this. just curious as usual....


#2 vickie

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Posted 03 November 2010 - 11:27 AM

My son has a speech disorder that was labelled as a severe phonological disorder at 4 years old. He had a lot of issues and the slp did have to rule apraxia, but he did not have it. Currently, he is doing very well and I even wonder if this year or the next may be his last IEP for speech!

Side note, during his PANDAS exacerbation, all progress in speech stopped. Once recovered, he was back on the fast track for reaching goals.

#3 peglem

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Posted 03 November 2010 - 11:30 AM

Yes, my 16yo still has apraxia of speech. When she was younger we saw some good progress w/ speech therapy- but it all went away w/ untreated PANDAS flares.

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#4 amyslp

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Posted 04 November 2010 - 04:29 AM

I wonder about the accuracy of the Apraxia dx at age 3-particularly because you say her speech is perfect now. Sounds like it might have been more phonological or developmental because kids with true apraxia of speech usually have problems with preciseness of articulation for years into the teenage years or adult hood. Because there is no "test" for Apraxia, more of a dx. that has too be teased out, it could be that it was misdiagnosed as such. I have not read a whole lot regarding speech (articulation) and PANDAS on the forum, so I never suspected a correlation. There are kids who stutter as a result of what I think is tic based. The key here is early intervention which you sought. Always glad to hear a speech success story. JAG10 is also a Speech Pathologist-she may have more insight into this as well.
Allison, age 8, dx. PANDAS at age 4 after 6 months of chronic strep infection and EBV
Jillian, age 5, dx. PANDAS at age 3 initially after impetigo.
Myself, my sisters, my father and my paternal grandmother all with symtoms consistent with PANDAS/OCD

#5 phillypa

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Posted 04 November 2010 - 07:50 AM

I recommend reading any of Oliver Sack's books. I just started reading The Mind's Eye and it is great. Also, recommend his book on music, although the name escapes my mind right now. I his books, he talks a lot about strange cases of speech loss, partial recovery and spontaneous recovery due to damage of the brain via stroke, injury or infection.

And yes, my son lost his speech at age five due to pandas. It started out that he wouldn't talk much, then couldn't remember the names of things and searching for the right word to finally mutism. He had three ivig's this summer and is doing wonderfully. Language is all coming back. He is now 8 years old. His behavior is amazing. He is the sweet little boy I remember. His pandas doctor said the words will all start coming back but it will take a while. So far, so good!

Edited by PhillyPA, 04 November 2010 - 07:55 AM.


#6 dabel

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Posted 04 November 2010 - 08:40 AM

All three of my PANDAS kids have had years of speech therapy. The first one was classified as severe and was given the typical therapy for omissions/substitutions for two years with not a lot of progress so I told the therapist that she was nice and all but I was going to go elsewhere since we were not seeing results. At that time she decided to look into apraxia. Once his therapy was changed the progress was amazing!!!! The therapist was amazed and so was I. After another 2 years or so and he was discharged from therapy!!! My next one in age lost his speech at age three with what we believe was his first exacerbation. He lost all annunciation. His speech problem fell in the profound range. His therapy also included some stuff for apraxia. He is now 11 and still in speech therapy but doing very well. The youngest has also been in therapy for years (since age 3). His problem was considered severe. He started at age three and is now 10 and his therapy also included stuff for apraxia. He is doing well also. So...all three of my kids are apraxic. From what I understand this is quite unusual. I am just thankful that they are making progress. I missed most of that cute stuff they say when they are little because even I could not understand a lot of what they were saying. I definitely think that this is linked to PANDAS.

Edited by dabel, 04 November 2010 - 08:43 AM.


#7 vickie

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Posted 04 November 2010 - 09:06 AM

This sentence reminds me of a recent conversation I had with a neighbor. I was explaining IEP's, speech, etc and she said that she missed out on all the cute ways kids talk and mispronounce things because her daughter always spoke perfect. I just looked at her and said " Be happy. When my son went to school for the first time, I was fearful they wouldn't understand him if he needed to use the bathroom". I am happy I no longer get that glazed look from adults when my son speaks. I'm sure you've had it before...where they pretty much ignore your child, look over them to you for a translation like they don't exist.

I am confident in saying my son's speech was not a result of PANDAS, but perhaps it was a foreshadowing? Not even sure what I mean by that, though. But I can see how speech can be affected. Like I mentioned earlier, once in therapy my son made progress in record speed. Even the slp was suprised. Then during the exacerbations, progress haulted. Once recovered, lightening speed again.

My son dropped ends of some words, beginning of other words, out of the ordinary substitutions, etc.

I missed most of that cute stuff they say when they are little because even I could not understand a lot of what they were saying. I definitely think that this is linked to PANDAS.



#8 kayanne

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Posted 04 November 2010 - 09:12 AM

I recommend reading any of Oliver Sack's books. I just started reading The Mind's Eye and it is great. Also, recommend his book on music, although the name escapes my mind right now. I his books, he talks a lot about strange cases of speech loss, partial recovery and spontaneous recovery due to damage of the brain via stroke, injury or infection.

And yes, my son lost his speech at age five due to pandas. It started out that he wouldn't talk much, then couldn't remember the names of things and searching for the right word to finally mutism. He had three ivig's this summer and is doing wonderfully. Language is all coming back. He is now 8 years old. His behavior is amazing. He is the sweet little boy I remember. His pandas doctor said the words will all start coming back but it will take a while. So far, so good!

This update made my day!!!! :D :wub:
~Karen


#9 Doug

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Posted 04 November 2010 - 09:26 AM

My neice's son has it but,he also has other things wrong with him,BUT I think I will ask her to watch him when he is on abx's to see if she see's a change
Tracie

Edited by Doug, 04 November 2010 - 09:31 AM.


#10 shadowtails

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Posted 04 November 2010 - 10:08 AM

I wonder about the accuracy of the Apraxia dx at age 3-particularly because you say her speech is perfect now. Sounds like it might have been more phonological or developmental because kids with true apraxia of speech usually have problems with preciseness of articulation for years into the teenage years or adult hood. Because there is no "test" for Apraxia, more of a dx. that has too be teased out, it could be that it was misdiagnosed as such. I have not read a whole lot regarding speech (articulation) and PANDAS on the forum, so I never suspected a correlation. There are kids who stutter as a result of what I think is tic based. The key here is early intervention which you sought. Always glad to hear a speech success story. JAG10 is also a Speech Pathologist-she may have more insight into this as well.


Oh it was definately apraxia. The kid was trying to talk at a very young age, but never got passed the babble? She started Head Start and speech therapy at 3, 2 x's a week there and at the same time was going to an outbranch of Childrens Hospital 3 days a week. When she started Kindergarten she continued at the hospital plus had speech at school 2 days week till the begining of 4th grade. So that was about 6yrs of intense therapy.

Nobody could understand her except her immediate family and my mom. So, I decided to get a job as an assistant at Head Start so I could translate for her. lol After a little more than a month the kids and teacher were able to at least get the jist of what she was saying and then she was able to make friends there. Best thing I ever did for her.

After reading so many posts here, it made me wonder if maybe there was a connection. Probably not, but I figured it could'nt hurt to ask.

#11 kimballot

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Posted 04 November 2010 - 10:47 AM

I recommend reading any of Oliver Sack's books. I just started reading The Mind's Eye and it is great. Also, recommend his book on music, although the name escapes my mind right now. I his books, he talks a lot about strange cases of speech loss, partial recovery and spontaneous recovery due to damage of the brain via stroke, injury or infection.

And yes, my son lost his speech at age five due to pandas. It started out that he wouldn't talk much, then couldn't remember the names of things and searching for the right word to finally mutism. He had three ivig's this summer and is doing wonderfully. Language is all coming back. He is now 8 years old. His behavior is amazing. He is the sweet little boy I remember. His pandas doctor said the words will all start coming back but it will take a while. So far, so good!


Love it!! Glad to hear it!! :) :D

Parent of teenager with PANS from young age. Mild primary immune deficiency. Chronic sinusitis. Possible bartonella,  Antibiotics.  IVIG. History of severe exacerbations.  Continues to show improvement. There is hope for our children.  Let's work together for early identification and treatment!


#12 peglem

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Posted 04 November 2010 - 11:24 AM

I do think apraxia can be related to PANDAS, just like the fine motor skills are for handwriting. Apraxia is a motor problem and PANDAS symptoms include movement dysregulation.

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#13 eamom

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Posted 04 November 2010 - 07:30 PM

Not sure if it counts as Apraxia, but my PANDAS dd10 (5th grade) is in speech therapy at school.

Dd7 (now 2nd grade) is possible PANDAS (some suspicious behaviors, CaM was 130 a while back) is soon to be evaluated (the speech teacher is on maternity leave at the moment). Interestingly, aside from the speech problems, dd7 is doing well academically (no handwriting, spelling, or math facts problems like dd10).

#14 amyslp

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Posted 04 November 2010 - 08:00 PM

In Apraxia, you see very poor speech intelligibility, that does not respond to typical articulation therapy. Sometimes these kids have groping movements when they try to speak, particularly when they are young. These kids usually have pretty good auditory comprehension skills, but the motor plan for speech (sending the signal from the brain) is thought to be interrupted. I've seen apraxia purely in kids with no other language problems, just speech and they are much easier to dx as Apraxic (versus a phonological impairment) which can look very similiar in younger kids. I have seen children with autism or PDD who have apraxia as well, this sometimes takes longer to figure out, b/c you need to improve their language skills & social pragmatic skills to really make a good differential diagnosis here, but thinking along those lines and knowing there are children with PANDAS & a dx somewhere on the autism spectrum-I do believe this is something we will/can see in PANDAS kids. It really opens your eyes to how PANDAS is a spectrum in and of itself. I would be really interested in knowing of how many kids have had speech/articulation issues & also have PANDAS, but I have no idea how to create one of those surveys.

In hindsight, I can remember a child I evaluated about 3-4 years ago. I remember his mom telling me about him being sick with strep all the time. He had his tonsils out at 3, which struck me as so young. He appeared to be on the autism spectrum, but not precisely. I think of him often and knowing what I know now, wonder if he could have PANDAS. Interestingly enough his father was not working b/c he had psych problems, which the mother did share with us b/c she was so concerned that that was what was happening with her son. I can't even recall his name, but I remember everything about him. I always hope I'll run into them in the community to inquire about him.

I have worked with adults for the last 18 months. I had to find a more PT & flexible job due to my daughter's PANDAS. I wonder how many kids I would think potentially have PANDAS if I still worked as an evaluator-I think for now I am better off where I am. I do make sure my former pediatric colleges and any other therapists I know in the community know about PANDAS, so they can be thinking this when they hear about sudden onset of behaviors.
Allison, age 8, dx. PANDAS at age 4 after 6 months of chronic strep infection and EBV
Jillian, age 5, dx. PANDAS at age 3 initially after impetigo.
Myself, my sisters, my father and my paternal grandmother all with symtoms consistent with PANDAS/OCD

#15 jag10

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Posted 04 November 2010 - 08:26 PM

In Apraxia, you see very poor speech intelligibility, that does not respond to typical articulation therapy. Sometimes these kids have groping movements when they try to speak, particularly when they are young. These kids usually have pretty good auditory comprehension skills, but the motor plan for speech (sending the signal from the brain) is thought to be interrupted. I've seen apraxia purely in kids with no other language problems, just speech and they are much easier to dx as Apraxic (versus a phonological impairment) which can look very similiar in younger kids. I have seen children with autism or PDD who have apraxia as well, this sometimes takes longer to figure out, b/c you need to improve their language skills & social pragmatic skills to really make a good differential diagnosis here, but thinking along those lines and knowing there are children with PANDAS & a dx somewhere on the autism spectrum-I do believe this is something we will/can see in PANDAS kids. It really opens your eyes to how PANDAS is a spectrum in and of itself. I would be really interested in knowing of how many kids have had speech/articulation issues & also have PANDAS, but I have no idea how to create one of those surveys.

In hindsight, I can remember a child I evaluated about 3-4 years ago. I remember his mom telling me about him being sick with strep all the time. He had his tonsils out at 3, which struck me as so young. He appeared to be on the autism spectrum, but not precisely. I think of him often and knowing what I know now, wonder if he could have PANDAS. Interestingly enough his father was not working b/c he had psych problems, which the mother did share with us b/c she was so concerned that that was what was happening with her son. I can't even recall his name, but I remember everything about him. I always hope I'll run into them in the community to inquire about him.

I have worked with adults for the last 18 months. I had to find a more PT & flexible job due to my daughter's PANDAS. I wonder how many kids I would think potentially have PANDAS if I still worked as an evaluator-I think for now I am better off where I am. I do make sure my former pediatric colleges and any other therapists I know in the community know about PANDAS, so they can be thinking this when they hear about sudden onset of behaviors.


Many interesting questions, indeed Amy! I have also wondered... as an SLP working so intimately with these children, near their mouths, them coughing and sneezing on me half the year... what have I been bringing home to my own kids all this time?? I seriously considered wearing a lab coat this year, but it just seems awkward in an elementary setting. I have made an effort to leave my shoes in the garage and change my clothing as soon as I get home.




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