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I had never thought to post about this but interesting to read all this. My dd 12- shouts MOM, MOM, MOM repeatedly I think she may being trying to head off her panic that ensues when she needs me FAST and I do not respond. She has so greatly improved in many things since prednisone and zithromax in June.

 

We are at the 2 year anniversary next week of the beginning of this for her. She is now stuttering fairly frequently- this is new in the past 3 weeks, She also hums much of the time. I really think this is a symptom, not some new hobby.

 

At her worst she had a sort of anomia (not being able to say the

correct word for an object)- like white box for microwave and black thing, black thing, black thing with increasing intensity for the tv remote. The PANDAS doc saw her with this. She also could not always saw our names- she would look at us and nod in panic and not be able to say Mom or whoever she was trying to speak to.

 

We have an appt with our PANDAS doc next week. Everyone say a little prayer that she goes- if for nothing else for the doctor and her staff to see her with clothes on (arms in sleeve holes!) and freshly showered and hair mostly brushed. Smiling is frequent these days, too.

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I've been wondering about the language component too.

 

DS9 was a bit late of a talker, but a very early reader and writer. By age 8 and 9, he started writing really, really well. Complex thoughts, ideas,and vocabulary. An extremely engaging style. He started writing a book and a play on his own, and people have responded really well to them (and they weren't just being polite!).

 

However, when speaking, he often gets stuck in the process of getting words out, with a little hiccup-thing before phrases, and then he repeats the phrase. For years, I thought he was being thoughtful (as do my adult friends who hear him). Then, when he started writing so well, I realized there was a larger discrepancy between his spoken and written language.

 

This may be part of a tic, or it may be something more. I have a referral for speech therapy, but honestly don't know if I want to go that route. He is 90-95% better and we are all so tired of going to doctor after doctor and getting treatment and therapies. I've been warned by others that he may start to think that there is something really wrong with him because of all this. And he is so close, and does well in school, etc that I'm really not sure I want to rock the boat.

 

Thoughts?

 

 

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.

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I've noticed this problem with DS14. For some school assignments that he has gotten stuck on, I've had to sit with him and help him "decode" his thoughts into standard American English. They are good thoughts and indicate a functioning brain in there, but it just doesn't come out in the standard noun-verb-modifyer way that you would like to see it in. In general if you read his essays with insight they are pointed and interesting, but unless you are willing to interpolate a lot you will not understand them at all. There is also a lot of the non-specific word problem (everything is a thing.) I never really connecdted this with the PANDAS routine. Wow. If IVIG would fix this, it would be so incredibly helpful.

 

Lfran, I've had the same concerns as you about making DS think there is something really wrong with him. While I don't want to blame him for things he can't help, I don't want PANDAS to be a crutch for him, or an excuse for whatever is wrong in his life and a reason for not doing anything about it. My Mother in law, at 93, is currently out in the back yard doing battle with the squirrels for her bumper crop of tomatoes. She is winning even though she is a bit tippy as far as balance is concerned. Nothing stops her. That's how I'd like DS to be. (I'd like to be like that at 93 myself, but that's a bit OT)

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