scorpio1 Posted January 11, 2011 Report Posted January 11, 2011 I am amazed at the difference in my son's handwriting since he has been on penicillin for PANDAS! It has taken a few months, but we cannot believe the before and after. In addition, his tics have improved as well as his focus. He was a zombie before starting the medication.I am interested in reading about what others are experiencing...
JAG10 Posted January 11, 2011 Report Posted January 11, 2011 So glad you are observing improvements. My dd had PANDAS years before I ever knew it. I remember telling her psychiatrist in second grade "I can tell how she's doing by her handwriting. If her homework notebook comes home looking like an EKG, we're headed downhill." Other handwriting/cognitive issues I and other parents here have observed is a marginal shift where each line the child indents further and further, increased reversals (even in cursive!) spacing and mechanics errors. My dd would "zombie" so badly, she's had 3 EEGs done for seizures she would stare so hard and so long (Dr. T actually wanted to order another one when he saw her and I said THAT'S PART OF THIS!!! She's had 3 normal EEGs!!!) It is so refreshing to hear that your child's issues have resolved with abx. I believe my dd was sick for so many years before we knew what was really going on and she was almost 10 before the PANDAS dx that she needed IVIG to get her to make significant strides toward recovery. I would guestimate she is 75-80% improved and scheduled for her 2nd IVIG to hopefully get her the rest of the way there. She is also beginning puberty and there are some who say PANDAS can significantly resolve with menstration onset in girls, but that is not a given by any measure. Welcome Scorpio1 Jill
Phasmid Posted January 11, 2011 Report Posted January 11, 2011 Hi, yes, it is extremely fascinating. We have lots of before and after writing samples. My son had very severe margin shift (starting in the middle of the page rather than at the left margin), and his writing was very large, leaned to left, leaned to write, cursive in the middle of print and vice versa, and was basically illegible. He also drew stick figures for people into the 5th grade! His writing is normal, same as peers pretty much no
LNN Posted January 11, 2011 Report Posted January 11, 2011 Handwriting decline (dysgraphia) is one of the secondary symptoms listed for Pandas. You can see examples at www.webpediatrics.com Be sure to save samples and date them. After a long struggle, we finally got my son a 504 plan (whole other post). But every year, we have to try to explain the disease to a whole new set of teachers who've never seen anything like it. In the past, they've nodded, empathized, but never really grasped what I was saying. Most of the meeting was spent educating instead of planning. This year, I started off showing five writing samples from the past 12 months, at various stages of health, various stages of treatment. Within the first 5 minutes, the whole room was on board. I no longer needed to convince them, explain how Pandas impacted cognitive skills. It was something they could grasp, see, and work with. We then spent the rest of the meeting talking about moving forward, not rehashing history. It was amazing. I'm so glad to hear you're seeing improvements!
T_Mom Posted January 11, 2011 Report Posted January 11, 2011 (edited) It is not only handwriting that is affected by PANDAS, but also the ability to express oneself in writing (written language.) "Writing" and math abilities are the primary academic subjects parents typically see drop through the floor with Ps episodes. I remember reading about writing ability deterioration w/ PANDAS on Dr K's website (www.webpediatrics.com) over two years ago, and it was like a light bulb went off--THAT was the first, and only place I had seen it referred to--(Thank you Dr K!!) We just came back from a school meeting today -- round two with our youngest d, and again, writing and math abilities are gone-- (Good news, these abilities come back again.) I agree with LLM, keep those writing samples, dated and filed for reference when you need to demonstrate the effects of Ps. Edited January 11, 2011 by T.Mom
JAG10 Posted January 11, 2011 Report Posted January 11, 2011 Handwriting decline (dysgraphia) is one of the secondary symptoms listed for Pandas. You can see examples at www.webpediatrics.com Be sure to save samples and date them. After a long struggle, we finally got my son a 504 plan (whole other post). But every year, we have to try to explain the disease to a whole new set of teachers who've never seen anything like it. In the past, they've nodded, empathized, but never really grasped what I was saying. Most of the meeting was spent educating instead of planning. This year, I started off showing five writing samples from the past 12 months, at various stages of health, various stages of treatment. Within the first 5 minutes, the whole room was on board. I no longer needed to convince them, explain how Pandas impacted cognitive skills. It was something they could grasp, see, and work with. We then spent the rest of the meeting talking about moving forward, not rehashing history. It was amazing. I'm so glad to hear you're seeing improvements! As someone who sits in about 100 IEP mtgs a year, this is one of the BEST suggestions I've read!!! Dang, wish I'd thought of it!!! Don't mind if I steal it, do you?
amyjoy Posted January 12, 2011 Report Posted January 12, 2011 Yay, improvement. Documented improvement! That's a good day:)
swim Posted January 12, 2011 Report Posted January 12, 2011 Absolutely! Watching our son's handwriting is one of the tools I use to monitor PNADAS flare ups. I always know when somehting is coming because his handwriting goes downhill. When symptoms are under control, handwriting is great. When we are in a bad place with symptoms, handwriting is a mess. I think of it as his body's way of telling me that something is coming when the handwriting gets messy.
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