Severe stuttering

[Lydiasmum]

Hi,

I'm really scared for my 9 year old DD at the moment.  She has always stuttered ever so slightly, nothing that would impact her self esteem.

She is being treated as PANDAS by her ped and is still taking prophylaxis.  She was classic presentation at 4 years old - overnight tourettes, OCD and separation anxiety.  History of strep/scarlet fever and various other untreated infections as a toddler (they were always 'viral'.....).

We are much better these days, however her speech gets really messed up at times.   3 weeks ago she seemed a bit out of sorts, headache, rosy cheeks, blocked nose and one day of running to the toilet but couldn't go.  These symptoms passed quickly after a day or two and back she bounced.  A week later she lost the ability to talk properly.  Right now it's awful.  A mixture of blocks, prolongations, and um er, um er... for ages.  She cannot hold a conversation.  It breaks my heart.  I did try upping the abx to treatment dose for 10 days (this seemed to help last time) but it hasn't made any difference.  Apart from being conscious of her stammer, she is generally OK in herself.

Is this PANS?  Has anyone else experienced this with their child.  Can she grow out of this?  b.t.w. puberty is definitely starting to kick in......

 

[bobh]

If you put "PANDAS stuttering" into google scholar you will see several hits definitely suggesting some connection.  Here is the link to those hits:
https://scholar.google.com/scholar?hl=en&q=PANDAS+stuttering&as_sdt=1%2C47&as_sdtp=&oq=PANDAS+stutter

We haven't experienced stuttering per se, but we had strange verbal problems with our PANS son at one point (for a couple of months), where he couldn't think of a common word, or would say something that didn't quite make sense, jumbling things.  We definitely put those things together with PANS, as he had increased in some of his other symptoms as well, so it seemed a bit too much of a co-incidence that this was independent and unrelated.  And, it went away with as his other symptoms reduced as well.

[DreamingPanda]

Wow, this is definitely among the most frustrating symptoms to deal with.  Sorry your DD is having these difficulties. 

I'm 22, diagnosed at 19, and I've never exactly stuttered, but speech difficulties have been a symptom that comes and goes.  Sometimes, I start saying gibberish syllables.  Other times, I just don't remember words and take long pauses in the middle of a sentence while I try to remember.  I also have a few nonsensical words and phrases that tend to come out when I can't remember what to say (for a while, I called everything a "butt," which led to some interesting exchanges with strangers...).  I almost always know what I'm trying to convey in my mind, but I'm unable to say the words. 

I've always thought of these issues as part of my PANS/Lyme, and they tend to come and go with my other symptoms.  Hopefully they will resolve for your daughter soon, too.

[bws1565]

I know this from personal experience with my niece.  She used to get a strep every spring, go onto antibiotic, and start stuttering...Several years in a row.

Her pediatrician mentioned to my sister that there is research linking strep to stuttering.  Not sure if this is definitely Pandas, or only strep.  However there are soooo many things you can do beside abx for strep.

To name a few:

Streptococcus

Thieves oil on the sole of the foot

Blis K12  (an oral probiotic)  

I am especially leaning to the BlisK12.  I know people have had wonderful results with it.  Very easy to take and really effective.  I have heard that the co NOW is best.

[Hitman3161]

On 19/05/2017 at 1:31 AM, DreamingPanda said:

Wow, this is definitely among the most frustrating symptoms to deal with.  Sorry your DD is having these difficulties. 

I'm 22, diagnosed at 19, and I've never exactly stuttered, but speech difficulties have been a symptom that comes and goes.  Sometimes, I start saying gibberish syllables.  Other times, I just don't remember words and take long pauses in the middle of a sentence while I try to remember.  I also have a few nonsensical words and phrases that tend to come out when I can't remember what to say (for a while, I called everything a "butt," which led to some interesting exchanges with strangers...).  I almost always know what I'm trying to convey in my mind, but I'm unable to say the words. 

I've always thought of these issues as part of my PANS/Lyme, and they tend to come and go with my other symptoms.  Hopefully they will resolve for your daughter soon, too.

DreamingPanda, you've  described it perfectly. It is probably the most troubling of all my symptoms, and I haven't seen hardly any referenced publication of it with regards to pandas. Like you, it tends to 'come and go' with a wax and wane quality. I've heard some people say it can be a sign of behavioural regression - a hallmark of pandas- but this seems very unlikely in my case. 

Lydiasmum, I can't advise for sure by any means, but I hope that in your case that seems more likely. You also mention blocks? Paucity of speech is listed as a symptom, if this is the case the speech disfluency should hopefully resolve in time with appropriate care. Wishing you all the best!

The problem is PANDAS is a very specific diagnosis, so you know exactly what your dealing with, this is always desirable. PANS; on the other hand, is a non-specific descriptor for a type of AE, which really leaves us in the dark. I've tried everywhere to find at least one case study connecting pandas to speech impediment but I can't.

Again, I'm in your position with no favourable explanation absolutely crapping it. Although, IMO I honestly believe your case can be explained as PANDAS, in taking into account age and regression.

Anyhow, It would be awesome if some more people on here could come forward with similar symptoms. It would definitely help to put my mind at rest! 

 

 

 

 

[Cleopatra]

Definitely yes. My dd had stuttering and also would go mute every night. I had to have a boogie board next to the side of the bed so she could communicate with me (she slept with me). 6 months of HD IVIg got rid of it. Finally. BTW... if you go on the FB PANDAS parents pages you can find tons of parents with similar stories about stuttering and mutism due to PANDAS/PANS.

[itwontwin]

Yes!  My son is 3.  He was diagnosed a few months ago, and was finally able to start treatment last week.  In the 3-4 weeks leading up to treatment, there was a huge increase in stuttering, inability to recall common words, inability to maintain a train of thought, lots of "uhhh, ummm, hmmm," and ultimately, lots of, "Mommy, I just don't know what I'm talking about."  Broke my heart.  When we met with the PANDAS specialist and I told him about the speech issues, he added daily doses of Motrin to his treatment plan.  His speech still isn't great, but it's definitely improved from where it was a week ago, before we started the Motrin (and other treatments).

[Hitman3161]

Thanks for sharing guys, I hope the treatment goes smoothly well with curative effect. I was supposedly a 'late talker' but the more I think of it, the more I'm starting believe that I was only exhibiting mutism! My condition follows a continuous relapse/remit pattern. Up until yesterday, for several months I've been very muted and showed a high degree of paucity and stuttering! What kind of baffles me is how I've kinda snapped halfway out of it, very strange.

 

Cleo - I'm so glad you found success! Thanks for sharing.

It won't win - Stay strong; I can't imagine what it feels like to see your own little ones struggle so much; it must be awful, but I honestly believe you will pull through. I'm 24 and only looking for treatment now! I'm sure your little  one will make a full recovery, I'm counting on it!

Very best wishes! 

[MamaBeartoCharlie]

We don't have stuttering exactly but other speech issues. One is a bit of a slurred sound when my son says hard "c" sounds - my daughters name starts with a C and he says her name constantly to get her attention so it's quite obvious. It's almost like he adds a "L" so the hard "c" becomes a "cl" sound, but it's a bit more garbled. His "s"'s sometimes sound more like "sh" too. 

He has also started a tic where he speaks in a growl type voice sometimes. It's very strange. Some sentences will be half growl and half his normal voice.

 

 

 

[Hitman3161]

It would be interesting to know though, if the speech disfluencies were a product of basal ganglia dysfunction or rather a manifestation of behavioural regression? I know some sources in the literature report a new onset of selective mutism, paucity of speech and/or stuttering. To be honest though, during severe exacerbations I find myself constantly tripping over my words, only in the last few days has my speech fully returned to its baseline fluidity.

[Hitman3161]

29 minutes ago, MamaBeartoCharlie said:

We don't have stuttering exactly but other speech issues. One is a bit of a slurred sound when my son says hard "c" sounds - my daughters name starts with a C and he says her name constantly to get her attention so it's quite obvious. It's almost like he adds a "L" so the hard "c" becomes a "cl" sound, but it's a bit more garbled. His "s"'s sometimes sound more like "sh" too. 

He has also started a tic where he speaks in a growl type voice sometimes. It's very strange. Some sentences will be half growl and half his normal voice.

 

 

 

Couldn't the 'cl' sound be a manifestation of a phonic tic that interrupts with normal speech patterns?

Edited July 28, 2017 by Hitman3161

[PansLymeMom]

My 18 yr old daughter with PANS and Lyme also goes through short periods (15 min to 1 hr) where she can only speak gibberish.  This started with stuttering that went off and on for a few months.  Now she will start stuttering, then speak gibberish, then not be able to speak properly (sounds like she had a stroke) and finally go back to normal.  This really scared us at first but she has never stayed like this for long.