Update - and speech - baby talk

[Megs_Mom]

So Meg is in "remission" at this point - she has had 2 minor exacerbations about 5 days ahead of a cold, that calm right down once we go to full strength abx, motrin & some ERP so that she did not sprial out of control. I still worry a lot about what the next steps might be, and what the true cause is for Meg, but overall, I am also feeling much better. So I know that is a sign that Meg is well. I find myself reading things, and it's not always about PANDAS, talking to friends & not bringing it up (well, more than once an hour ). For those of you on a different side of the journey, I hope the same for you, and want you to know that there was a time that we really thought our beautiful brave child was destined to a life of full time care. There was a time that I could not imagine her future without breaking down into tears. I don't take it for granted - every day is a blessing, and when the minor exacerbations start, I still panic. But overall, we are good.

 

Despite how well she is doing, she has retained the "baby talk" that was one of the hallmarks of the bad times. Honestly, unless I am looking for it, it is such a part of our life, that I don't even notice it. But it drives dh crazy, and he bugs her about it a lot, thinking it was on purpose. Frankly, I could care less - we got through so much more, and I guess I am just tired of the doctor/psychologist/OT weekly route. Anyway, I started paying attention so that I could end the issue between them, and decided to take her back to OT for a speech evaluation & to learn some tools to help her break what I perceived as an unconcious "habit".

 

Well, I learned at OT that she cannot hear the difference, and uses her tongue in a wrong way, making the "s" sounds actually make a noise like "th" (she sticks her tongue in between her teeth instead of on the roof of her mouth). So Rabbits becomes "rabittth". She can do it right if taught or if really thinking, but the rest of the time, all her "s" sounds are "slushy". The OT advised us that this is not a habit & she can teach her tools, but that it will likely take a few months to get to the point when she can recognize the difference and start to self correct. She suggested that we not call it baby talk anymore, but refer to it as the "slushy s".

 

I will tell you that she did not have this issue until she was around 6 and a half - sometime around the time that PANDAS came in.

 

I was thinking that maybe the "baby talk" that many of us refer to as a hallmark of PANDAS, is actually a change in the way that their tongues work, causing issues with the s or r sounds. Is this the same kind of speech issue that others have challenges with as well? Maybe the basil ganglia is in charge of the tongue movements?

[thereishope]

My son's SLP in early childhood said that there are various parts of the brain that controls speech and the basal ganglia is part of it. My son, earlier on, had/has a severe speech disorder. When he started therapy he made improvements very fast. Than he got sick. All improvement stopped dead in its tracks. Then he recovered and he's back to making strides.I wonder, if like residual OCD, speech problems can end up being residual. After awhile, the brain learns to say the sound wrong. Hopefully since she is in remission, she will perfect her "s" sound quickly. It really can take only a few months. Just do any sound homework with her that they give too and keep up with those Omega 3's.

Edited May 13, 2010 by Vickie

[Stephanie2]

Well, with my 5 yo I perceive it to be pure baby talk b/c he changes his sentence structure to 1 and 2 word sentences as if he were just learning to talk. Then he has a meltdown if I don't understand what he is saying

 

With my 2 yo, he is speech delayed and the ST says that maybe he has apraxia. She can't quite figure out why speech comes and goes. She has also wondered if his Chiari Malformation (brain disorder) could be hindering speech from time to time. But the more and more I read this forum, it seems that pandas does cause speech delay.

 

So, I guess it affects speech in multiple ways ??

Glad to hear you are in a better place!

Stephanie

 

So Meg is in "remission" at this point - she has had 2 minor exacerbations about 5 days ahead of a cold, that calm right down once we go to full strength abx, motrin & some ERP so that she did not sprial out of control. I still worry a lot about what the next steps might be, and what the true cause is for Meg, but overall, I am also feeling much better. So I know that is a sign that Meg is well. I find myself reading things, and it's not always about PANDAS, talking to friends & not bringing it up (well, more than once an hour ). For those of you on a different side of the journey, I hope the same for you, and want you to know that there was a time that we really thought our beautiful brave child was destined to a life of full time care. There was a time that I could not imagine her future without breaking down into tears. I don't take it for granted - every day is a blessing, and when the minor exacerbations start, I still panic. But overall, we are good.

 

Despite how well she is doing, she has retained the "baby talk" that was one of the hallmarks of the bad times. Honestly, unless I am looking for it, it is such a part of our life, that I don't even notice it. But it drives dh crazy, and he bugs her about it a lot, thinking it was on purpose. Frankly, I could care less - we got through so much more, and I guess I am just tired of the doctor/psychologist/OT weekly route. Anyway, I started paying attention so that I could end the issue between them, and decided to take her back to OT for a speech evaluation & to learn some tools to help her break what I perceived as an unconcious "habit".

 

Well, I learned at OT that she cannot hear the difference, and uses her tongue in a wrong way, making the "s" sounds actually make a noise like "th" (she sticks her tongue in between her teeth instead of on the roof of her mouth). So Rabbits becomes "rabittth". She can do it right if taught or if really thinking, but the rest of the time, all her "s" sounds are "slushy". The OT advised us that this is not a habit & she can teach her tools, but that it will likely take a few months to get to the point when she can recognize the difference and start to self correct. She suggested that we not call it baby talk anymore, but refer to it as the "slushy s".

 

I will tell you that she did not have this issue until she was around 6 and a half - sometime around the time that PANDAS came in.

 

I was thinking that maybe the "baby talk" that many of us refer to as a hallmark of PANDAS, is actually a change in the way that their tongues work, causing issues with the s or r sounds. Is this the same kind of speech issue that others have challenges with as well? Maybe the basil ganglia is in charge of the tongue movements?

[T_Mom]

Wow-- what great news to hear about Meg--

thanks for posting that tonight...a bright spot in the evening.

 

--and I agree, (as we have some of the same here at times...) baby talk is no big deal

T.

[AmySLP]

Just wanted to weigh in on this as one of the speech-language pathologists on the forum. Development of accurate articulation of /r/ and /s/ is expected by 90% of kids by the age of 8-these are some of the latest sounds to become precise in typically developing kids. So yes, these errors are very common in children without PANDAS. Sounds as though your daughter has a frontal lisp-the "th" for the /s/ and the addition of a lateral lisp, which results in "slushy"speech. Frontal lisps are developmentally normal whereas lateral lisps are an atypical error and rarely resolve without direct treatment. Treatment is effective, but remember these kids need to learn a new pattern so practice is key in between sessions. Also you mentioned an OT did the evaluation---speech sound errors are not in their scope of practice so I would encourage you to seek a licensed and/or certified Speech-Language Pathologist to eval and treat your daughter.

 

PANDAS can cause chorea-like tongue movements in kids (as my daughter exhibited) making it harder for them to get the voluntary movements needed for speech practice. I feel that these would need to be resolved, if present, before expecting good results from treatment. Feel free to private message me if you have any other questions.

 

Amy

[Megs_Mom]

Thanks all! I appreciate it.

 

Amy, so glad we have a pro here! I said OT, as the speech is in the same practice as OT, where we spent a lot of time. But this therapist is SLP (I just double checked the card) - I just don't have the lingo down yet! She did do a full evaluation today, but I did not know a lot of the questions to ask yet.

 

I'm very patient (it's a learned skill at this point), so I don't expect any change quickly, and we're happy to do such low anxiety homework . I do have two questions for you, if you don't mind? So Meg did not have this "slushy" sound before PANDAS came - at 6, I'd say that she had a very articulated speech pattern. When PANDAS hit, the "baby talk" came and is still worse when she is excited or worried. So is your guess that the "attack" on the basil gangia changed her speech pattern? And then I guess I'd say she is fairly well treated now (chorea in fingers is gone, as is the pulling in on arm when stress test walking) - and I was never aware of any sort of tongue-chorea. She did have issues with feeling that she had too much saliva in her mouth a lot of the time. How would you identify tongue-chorea? Is it obvious?

 

Amusing side note - her dad was tucking her in tonight and said to her "Meg, you know I love you, no matter how you talk, right?" and she got a wicked little grin on her face and said (very deliberately) "YETHHHHH, Dad!" and then erupted into giggles. Funny kiddo!

 

Thanks!!!