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PianoGirl

Forgetting Words/Reading Comprehension Difficulties

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Has anyone else experienced language problems due to PANDAS/PANS? If so, what kind of accommodations in school have been helpful? I already have double-time for timed work, but I think I need something more.

I’ve started forgetting common words multiple times per day. I can picture the thing that I’m trying to tell you about, and I often will pantomime or demonstrate so that people know what I mean, but I just can’t remember the word. Sometimes I can tell you what letter or sound it starts with, but often I can’t even do that.

The biggest problem is that I just went back to college, and I’m having tremendous difficulties understanding my textbooks and assignments. It is not the material so much as the words themselves. While I do have some problems with concentration, no matter how hard I focus on a sentence, I just can’t grasp what it says. I read the words fine, but I cannot explain to you what the sentence as a whole means.

It feels the same way it felt when I was learning a foreign language a few years ago and trying to make sense of a written passage—I would read it once and maybe catch the gist of what it was saying, but I couldn’t quite comprehend the full meaning. I have to break things down very slowly, word-by-word, and eventually, I understand what it says. Once I get past the words to the concept, I’m fine.

Anyone else seen or heard of any of this? If so, what has helped make it better? As it is, I’m three weeks post-IVIG and taking Cefdinir, Prednisone, ibuprofen, fish oil, and vitamin D every day.

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We did experience this, but our DS was much younger than you when it happened. And we didn't know at the time that it was PANDAS. He was in second grade, and after school's winter break, he had a precipitous decline in functionality and academic capabilities. He actually appeared to have forgotten how to read, after having been reading at a 5th grade level just before the winter vacation.

 

Unfortunately, I don't have any magic bullets for you. Only an experience that tells us this is one of the potential impacts of the PANDAS onslaught that time . . . and treatment . . . will curb and then give your brain a chance to regain its purchase in this regard. Time, though; it takes time.

 

Are you better, currently, at understanding the spoken word, as opposed to the written word? If so, then for the meantime, I would see if you could perhaps get some of your books on tape? Or maybe the college has a resource for the vision-impaired in which your assignments could be read out loud to you by others, until your brain regains some of its capabilities? We did some reading aloud to our son for a period of time, and for novel reading and the like, we purchased the books on tape versions.

 

Hand in there, and good luck to you!

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you might be describing two different problems. one is recall of words, the other is inability to translate a meaning of a sentence. for the first, p2p and biotin help me. I am not sure about the second.

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NiMH, when testing Pandas kids, found that visual memory, actually, any form of "working" memory is affected with Pandas kids...

 

If memory serves me correctly, working memory is in the front of the brain, coincidentally where the basal ganglia resides....

 

My Pandas child.....Good God....his visual/short term/working memory is awful. Just awful.

 

He is in recovery and doing very well. However, the last to heal is his memory and evening bed wetting...

 

Stress, can also create the kind of problem you are describing. Stress will create havoc with focus. I have experienced that. Also, the more you dwell on it, the worse it can get if stress is the root cause...

Edited by qannie47

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NiMH, when testing Pandas kids, found that visual memory, actually, any form of "working" memory is affected with Pandas kids...

 

qannie -- how are you saying this? are you referring to your personal experience having your child tested at NIMH? is there something published that states this?

 

thanks!

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pianogirl -- my son, much younger, has his language (and language retrieval) effected by PANS. Different medical interventions seems to help his language. At its worse, he echos what we say to him. When he is improving, his wording is off; at the grocery store this evening, he was referring to the donuts he wanted to buy as "dunkin donuts", or he will refer to a milkshake as a "smoothie''.

 

Given the long-standing impact this has had on my son's language, I found it very helpful to read Brain on Fire, since the writer talks about what it was like to have her language and her ability to speak impacted...

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