Expressive language

[smartyjones]

from another post:

 

She kept saying "listen, listen" but couldn't express what was driving her extreme behavior

 

glad to hear your daughter is doing well!

 

Is there a name for that? My son does something very similar but he yells and whines "I'm trying to tell you something" while he may be sitting in my lap with my full attention trying to help him sort it out.

 

We met with a new psych today who I am hopeful will be more helpful than the last who was next to useless. I believe my son to be about 90% pre-pandas with issues being potty delay and what I call an inappopriate fight or flight reaction. I don't so much refer to it as "rages" b/c he really doesn't have an angry component - just extreme upset. Still, I think it's the same reaction others refer to as rages. When/If we are able to get to the bottom of the problem, I have been surprised at how reasonable his concern is, it's just the reaction that is over the top.

 

The new dr. was trying to engage him. He was answering her and then when she asked about foods he started answering with his mouth shut or humming his answers. (He is gluten-free, casein-free - so also could be anxious discussing food with a new person) She suggested having him tested for a delay/issue in expressive language. She said many times kids have this as an issue and it is never discovered until 3 or 4th grade or later b/c they have a very rich vocabulary and have learned to read and write with no problems. However, they have trouble, especially when upset, communicating it. She's seen kids really turn around behavior when this is addressed.

 

I find that interesting b/c my son was a very early talker with an extensive vocabulary at age 2 - fitting the pandas profile. Perhaps it's another piece of the puzzle? I don't know where language and/or expression is located in the brain - could it be affected by the basal ganglia? Could it be a side effect of basal ganglia problem? Could it just make a pandas issue so much more extreme? Not sure where if anything this will go, but thought it interesting to share.

[pixiesmommy]

This is really interesting to me b/c we are in the same boat. Pixie was a very early talker (we laughed at the ped when he asked at her year checkup if she was starting to put 2 words together- that girl was putting paragraphs together by then and asking what "judicial" meant and then using it correctly!!!) But then around the same time she started having PANDAS behaviors, she started grunting instead of speaking, having huge non-verbal periods, using sign-language some instead of speaking when she was upset (which is not a problem for us at all, but it was unusual for her to sign in this manner,) and doing things like mixing up the first letters of words or speaking with baby-talk or strange accents. She also does the "listen, listen...!" thing periodically.

 

When we saw Dr K and had printed a list of symptoms, he highlighted all of the verbal/non-verbal issues and said those are "classic" PANDAS symptoms, so the answer must be that the language center is affected. I wonder how/if therapy for this could help or to what degree? I wonder this about all therapy though since this is not really a chemistry issue so much as a swelling issue, but we plug ahead in any area that we can.

 

Thanks for posting. Another thing to chew on...

[bronxmom2]

I wonder if this also plays into their writing difficulties? My son is physically able to write just fine... but cannot put words on paper without panicking. It's like the process of selecting words is excruciating.

 

Mine was also an extremely early talker and now seems to lose his linguistic abilities sometimes. He just shouts "mom?!?" "mom?!?" "mom?!?" several hundred times a day.

 

During his first real PANDAS episode, last fall, we had a psych eval done because we didn't know what the #$$# was happening... He scored a perfect 155 on the verbal section of the IQ test. I am really hoping that is all still there, under the swelling...

[faith]

hi,

would you mind explaining a little more about the language thing? (again, I don't know where I fit re PANDAS yet, but still awaiting cam results), alot of symptoms of tics/ocd/anxiety/sensory/attention/irritability. SO...

you all are saying your kids were early talkers, and that is the profile of a PANDAS child? do you just mean that they talk early? My son did not say a word until about 30 months, so 2 1/2 yrs old. Prior to that he would just grunt and point at what he wanted, like this "eh, eh, eh, eh, eh". it wasn't a tic, just his way of "talking". then we had early intervention beginning at about 2 1/2 and he responded fairly quickly. no other issues until tics started at 3 1/2.

 

Does this sound in line? or no? just wondering and still trying fit all the peices.

 

 

thanks

Faith

 

edit: Oh wow, bronxmom, I hear that all day too "mom, ....mom......mom!". I'm always telling him to stop calling me.

[peglem]

hi,

would you mind explaining a little more about the language thing? (again, I don't know where I fit re PANDAS yet, but still awaiting cam results), alot of symptoms of tics/ocd/anxiety/sensory/attention/irritability. SO...

you all are saying your kids were early talkers, and that is the profile of a PANDAS child? do you just mean that they talk early? My son did not say a word until about 30 months, so 2 1/2 yrs old. Prior to that he would just grunt and point at what he wanted, like this "eh, eh, eh, eh, eh". it wasn't a tic, just his way of "talking". then we had early intervention beginning at about 2 1/2 and he responded fairly quickly. no other issues until tics started at 3 1/2.

 

Does this sound in line? or no? just wondering and still trying fit all the peices.

 

 

thanks

Faith

Faith, my baby didn't really develop language as an infant...by age 7 she had about 100 understandable words-but she was on her way in speech therapy (I think her PANDAS started in infancy)....then suddenly every speech attempt turned in to "puh, puh, puh" and then even that was gone. Every once in a while, when she's not doing too bad, a clear, appropriate word pops out...its still there.

[smartyjones]

sorry - i should have used the word "phenotype" instead of profile. i get that from dr k's website of a particular patient phenotype - "pandas patients are frequently highly intelligent, very communicative child who is also a very good student. " "pandas is more likely to occur in certain phenotype of children - with a history of an early speech development and who usually prior to illness excel in school, particularly in math and sciences." my son fits every characteristic of the 7 signs and symptoms except he has never had a steroid burst.

 

i don't believe this means if you do not fit the phenotype, to rule out pandas. rather, it just seems to be characteristic of many pandas patients.

 

 

bronxmom - yes i think that's exactly it. interesting! the selecting of words and putting them out. my son is only 5 so doesn't so much write. does your son seem to do it verbally too or just in writing?

[Stephanie2]

For a long time we (myself and his audiologist) thought tha tmy pandas ds had auditory processing disorder (problems with receptive language) and also some expressive language issues (stuttering, not being able to "get the words out"). Come to find out that we really think it is pandas related. I see a noticable difference in his expressive language when he comes out of pandas, even my husband notices it without me asking him.

 

Also, we give him Methyl B12 injections every 3 days which seems to help "get the words out" (this is part of the DAN protocol). I do notice a lag in words when we are overdue for his shot...

 

Stephanie

http://thelight-stephanie.blogspot.com

 

 

This is really interesting to me b/c we are in the same boat. Pixie was a very early talker (we laughed at the ped when he asked at her year checkup if she was starting to put 2 words together- that girl was putting paragraphs together by then and asking what "judicial" meant and then using it correctly!!!) But then around the same time she started having PANDAS behaviors, she started grunting instead of speaking, having huge non-verbal periods, using sign-language some instead of speaking when she was upset (which is not a problem for us at all, but it was unusual for her to sign in this manner,) and doing things like mixing up the first letters of words or speaking with baby-talk or strange accents. She also does the "listen, listen...!" thing periodically.

 

When we saw Dr K and had printed a list of symptoms, he highlighted all of the verbal/non-verbal issues and said those are "classic" PANDAS symptoms, so the answer must be that the language center is affected. I wonder how/if therapy for this could help or to what degree? I wonder this about all therapy though since this is not really a chemistry issue so much as a swelling issue, but we plug ahead in any area that we can.

 

Thanks for posting. Another thing to chew on...

[thereishope]

My son had his expressive language tested a few times as part of his speech evals and it is fine. He does have a phonological speech disorder. Many parts of the brain are affected when a child as any speech disorder. It is also common for kids w/ speech disorders to have other disorders too like sensory.

[Megs_Mom]

edit: Oh wow, bronxmom, I hear that all day too "mom, ....mom......mom!". I'm always telling him to stop calling me.

 

For us, this turned out to be OCD - the yelling "mom" was a compulsion - there were a few reasons for this, but once she learned the language to communicate OCD, she can better explain why. Often it is just because the thought "my mom has left me" has popped into her head with great urgency. So even if she can see me, she may still have a moment of panic. Yelling mom, and my answering is the compulsion that calms the urgency. I also would tell her to stop calling me (or stalking me from room to room). However, that did not work. Calming the anxiety for a time did not keep it from coming back again, sooner & sooner.

 

When we did ERP therapy, even before any anti-biotic, we were able to calm this behavior. The antibiotic really got the thought to go WAY down - then the ERP was even better able to work. But before that, we could calm it down enough that she did not spend much of the day panicing that I was leaving her, screaming mom, and following me around the house. She could play alone, take a bath alone, play with a friend, etc.

[faith]

peglem,

did your daughter "lose" some speech that she developed early on, or didn't really develp in the first place? once my son got the intervention and he started to communicate, he progressed fairly quickly. (now won't shut up!) my mother said that would happen, lol. he is not on the autistic spectrum, he could always communicate what he wanted, his receptive was fine. I think just lazy to talk. he was also a late walker (15 1/2 months).... maybe the service was too good at this hotel.

 

Another thing I see people talk about here is poor handwriting. We are opposite of that. my son is and always was "perfectionist" about his writing, it's one of his ocd tendencies. he likes his letters to be perfect or to have the proper sapce between words, or he erases it, and erases it, and erases it, you get the picture. I've never seen his writing deteriorate, its always good, but takes a long time because of these things. so don't know if I'm in the minority here.

 

Stephanie,

re the B12 shots? is your child on autistic spectrum? we are not, but I did try a year of methyl b12 shots whenn I was going to a DAN doc for some guidance for my son's tics. I don't think it did anything one way or another for any issue. but that was 2 years ago, so really who knows if he'd be better for it now with any issue, but then I was focusing on the tics, and really it did not seem to help much, so at $100 per month, I decided to stop. I might add that my son's blood testing thru the DAN doc did show that he has the MTHFR gene mutation which reflects a problem with methylation, specifically B12. its like his gets high, because it is not converted properly. I don't know really if this is important for him or not, but I tried it, and ddidn't see any real results to speak of so that is that. I've corresponded with a couple of people who tried that too and I believe they ultimately felt the same way. ... (Betty04 ??)

 

Faith

[peglem]

Faith, my daughter managed to develop some speech, despite the PANDAS, then THAT has been completely lost.

[PhillyPA]

My son was totally normal. Early talker. Really bright. Great communicator. He got PANDAS at age 5. He lost all of his language over night. Acute, sudden onset. Rheumatic fever rash and headache included. Sometimes he gets out words. There is nothing like seeing your child fall on his knees, cover his face and cry and say, "I want to talk. I want to talk." He is 8 now. He started ivig this past May, 2010. Words and sentences are coming back.

 

People think he is autistic. I know better. Who gets autism at age 5? What autistic child says, "Mommy, I have a terrible sickness."

[MomWithOCDSon]

Smarty et. al. --

 

Very interesting in terms of the psych's "label" for what your son is going through, and I'll be very interested to hear how she plans to approach it therapeutically.

 

Our DS also fits Dr. K.'s phenotype, and when not overwhelmed by PANDAS OCD has an incredible vocabulary, is extremely articulate, and can write a poem or an essay that will bring tears to your eyes.

 

But when the PANDAS is in exacerbation or the OCD ramped up, he "can't get the words out," either on paper or verbally, and it doesn't matter, even, if he has a computer keyboard instead of a pencil and paper in front of him, or even a microphone and a speech recognition computer program at his disposal. He cannot organize his thoughts appropriately for expressing himself. It is a dramatic regression in this skill set, particularly for a 13-year-old.

 

During our IEP testing, we were told that our DS has some "processing differences" which, though on the highly-functioning end of the range, might play into some of his challenges in terms of time management on academic tasks, etc. I wonder if this is part of what your psych is talking about? And if it is not tied to inflammation (which it may well be, but who knows?), how does one treat it?

 

Also Smarty, re. the "raging," our DS has never had violent or aggressive rages, either, but he's had periods where he gets extremely upset, cannot express himself, cannot move on, cannot complete a task, etc. We refer to them as "meltdowns." Anyway, in our case, we've come to recognize after many years that these are emblematic of his OCD; that he's being overwhelmed by an obsessive thought or thoughts, or being lured into some OCD mental ritual, doesn't know what to do about it, feels conflicted about what the two sides of his brain (the logical and the OCD) are telling him, and thus gets either "stuck" or upset. When he was younger, we would unknowingly trigger such a meltdown episode by interrupting one of his private mental rituals by urging him to "hurry up," or asking him what he was doing. I don't know if that's playing any role in your DS, but it might be something to keep an eye on.

[sptcmom]

DS had started saying basic words like mama and dada at 5 months of age. At 18 months he lost 50% of his expressive language and retained 100% of receptive. He started reading spontaneously at 2 years of age, developed a huge vocabulary of 3000 words! BUT couldn't put those darn words into sentences at all. He talked in mini sentences at 4 and stayed 18 months behind in expressive language till 6 years of age and then developed a sematic pragmatic language disorder. he was treated for that and was only 6 months behind at age 7.5 At age 8.25 huge PANDAS episode, did abx and IVIG with Dr K and his language is unbelievable! Age appropriate actually but awesome to us and DS as we've never had this before.

All of the skills you guys are talking about regarding putting thoughts down on paper and freezing- we've been thru those. It was unbelievable that this child with such good reading couldn't process what he'd just read to come up with an answer.Really bad visual/auditory retention and recall.

He has also improved in fine motor, gross motor, praxis, motor planning, bilateral coordination, visual motor integration and auditory processing.All after abx and IVIG. His ESR was ^@ prior and after treatment the inflammatio is 29 now- still three times normal but half of what it was in March. We never knew DS has had PANDAS since 22 months of age.

[Priscilla]

Very interesting, thanks for posting this. My dd 8 has always has a large vocab. She does the MOM...MOM....MOM thing too. drives me crazy, she says it 3 times before I even have a chance to answer. I have noticed in the past, that she would take some time to respond to me, and the thought that she was having trouble processing did cross my mind. Now her rage is out of control, to the point that I have thought of hospitalization for intensive therapy (a week or so). She doesn't want to talk about anything, even punched me in the stomach when we left the therapist office last week. Maybe this is where some of the frustration is coming from. She cries alot and doesn't tell me what is wrong, she seems to get angry because I don't know.I am not sure what to do at this point, but having this in mind may help. Thanks again.