'joint' pain and writing

[smartyjones]

the recent post on joint pain and short conversation with ds7 just before made me think. . . . has it been determined what the causes for the handwriting issues with pandas are? do we know if it's a neurological issue from the brain . . . or could it be a physical issue? or a combination of both?

 

we are still in the process of evaluating. he has severe writing refusal -- only really writes single words. a 6 word sentence is an extreme chore. usually needs a template chart to help remember how to form some letters. he can dictate a coherent, well thought out paragraph. if asked to write, even a sentence, usually panics and is unable to generate ideas b/c he is anxious about having to write.

 

prior to pandas he had nicely formed letters but was at an age that he was just learning, so we really don't have 'before' and 'after' comparison -- just behavioral observations of what happens when he's asked to write.

 

today he said it's that it makes his whole arm hurt -- and pointed to mid-forearm. he doesn't seem to have fine motor issues other than this. if there is joint pain caused by infection, is it more constant or could it be in relation to function of writing?

 

OTs -- is there any other activity that is the same as writing as in using the same muscles that would/should also show such a problem?

[MomWithOCDSon]

Smarty --

 

Does he have a tendency to "overgrip" his pencil? Bear down really hard when he's forming letters or words, to the point of frequently breaking the lead?

 

In exacerbation, writing would be a huge avoidance thing for my DS, too, and he behaved as though it was physically as well as emotionally excruciating. In our case, I'm pretty certain it had nothing to do with joint pain, though there may have been some muscular pain involved over time because of how hard to gripped, and how hard he pressed.

 

From the outside looking in, for my DS anyway, I see this as another instance of that atypical "excitatory" response to standard stimuli the PANDAS seems to bring with it so much of the time. Anyone will get a hand cramp after writing for an extended period by hand, but DS feels that "pain" and "drain" almost immediately, having barely gotten started. Anyone will be frustrated by having a difficuly forming letters, words and numbers in legible form when feeling "out of synch" or overwhelmed, but for DS the frustration is almost pre-emptive. Almost like he's "allergic" to writing, so every response is bigger and faster than it otherwise would be.

 

Hopefully someone with an OT background will have some more professional feedback for you!

[tpotter]

I think it's more of a combination of muscle strength (many of these kids suddenly develop low tone...mine included...comes and goes with PANDAS flareups), which make them grasp the pencil harder. Also, if there is any tremor or choreaform movements, they may be trying to compensate, or may not even be able to do that. Another thing that happens is that may get confusion or memory problems...as you mentioned, he said that he forgets how to write the letters. So, physical handwriting changes...may be larger or smaller letters, poor spacing, margin drift, etc. OCD may set in , and you may start seeing a lot of erasures. Language & executive function is affected, so it's hard to put together thoughts, and if so, how do you get mumbled thoughts down on paper (DS also gets bad brain fog). So, I think it could be a lot of things going on. Refer to http://www.aota.org/Pubs/OTP/2011-OTP/OTP-111411.aspx?FT=.pdf (page 14) for some ideas, and I would see if you can get an OT to evaluate and make suggestions for modifications for him.

[dcmom]

smarty (I owe you a pm, busy weekend )

 

Have you researched dysgraphia? There is some good info on the net, will look for it early next week for you.

 

There is a lot with dysgraphia. My daughter seems to have it, mildly. Handwriting not great, some letter reversals (she is in 3rd grade). She loves writing however (thankfully). We and her teacher, do not focus on spelling, handwriting or letter reversals- we praise her for her effort and creativity, in an effort to preserve her love for writing.

 

On another note- this all is very similar to younger dd's academic career. We feel she is MUCH more intelligent than her work shows. She is a solid B student, but I think is AT LEAST as smart as her older sister, honor student. Her speech, vocab and insight is WELL beyond her years. In certain types of testing, she usually tests advanced in Math. YET- what gets onto the paper, and in the report card does not seem to keep pace. Not sure why? Combo of dysgraphia, shyness (borderline selective mutism) and anxiety?

 

Confusing?

[3boysmom]

My son's writing "struggles" seemed to include OCD -profection issues... Write & erase also intrussive thoughts making him trace over certain letters over and over ( so that in itself frustrated him). Also his inability to focus long enough to write on a topic created him to sit unproductably and then get upset at himself for the waisted time. Depending on what the writing assignment is evaluating.... For instance if it is a creative writing assignment or a narrative type paper then maybe he could tell it into a recorder and you can transcribe it for him. (until he improves) If the assignment is evaluating sentence structue, spelling correct use of punctuation then the teacher may have a more difficult time getting an authentic grade. I hope that makes sense?

[MMWG]

I honestly think joint pain has something to do with it for many PANDAS kids. Other autoimmune conditions (such as Rhumatoid Arthritis) affect joints, and it stands to reason PANDAS may as well. For us, our son would not hold a pencil or crayon for 2 yrs (2-4 yrs old) and when he was finally diagnosed and treated, he started to be much more willing to write (but he still hates drawing and coloring, and won't do it). I think it is tough for him because he lost those 2 yrs of practice, I think it sometimes is painful for him, and I think it makes him anxious because he knows he isn't good at it, and for us--anxiety leads to refusal (although sometimes our stubbornness leads to refusal....)