EXTREME Fidgeting?

[Momto2]

I am starting to go down the road of PANDAS with my daughter. She has become extremely fidgety (some would say hyper)to the point that she is constantly bouncing her legs - even when standing and also practicially bouncing out of her chair. Could this also be a symptom of PANDAS? Has anyone else experienced this?

 

Thx.

 

Amy

[Dean1065]

We are less than a month into PANDAS with our 8 year old daughter. Ours presented will severely intrusive thoughts and constant confessions. You just described our daughter to a T over the last couple weeks.

[BoyIowa]

My ds has fidgeting with his exasperations.

[LNN]

Hyperactivity is very common. You may want to grab a video, as some things we'd label as bouncy could be considered choreiform movements by a neurologist. You can also search YouTube for video examples of choreiform movements (it is a little different than chorea but even if you can only find videos of chorea, you'll get a general idea - chorea is just more severe/pronounced).

 

You can also have your DD put her arms out straight in front of her. As her arms get stressed/tired, you might see her fingers start to move up and down like she's playing the piano. This is a very common choreiform movement seen in Pandas kids.

 

As for coping with all this energy - have her chew gum when doing school work. Give her a squeeze ball or eraser to hold in her free hand while she writes or thinks. If you have one of those exercise balls, let her sit on that for homework time or tv watching. Let her stand for meals. If you don't yet have a 504, ask the teacher to let your DD have some sort of manipulative (an object or scrunched piece of paper or some sort of fidget item) that she can hold while doing quiet work, particularly reading. For ADHD kids, their brains actually focus better when their bodies are multi-tasking. It seems maddening to us, but to them, action brings focus.

[socalmom]

My son fidgeted constantly before we got to this point of being told about PANDAS.

 

Also- LLM, what's a 504?

[LNN]

A 504 is an education plan. There are 2 kinds of plans our kids can qualify for that make the school legally required to accommodate their special needs. Section 504 of the Rehabilitation Act and a IEP (individual education plan. A 504 means the school has to make accommodations within the classroom but the child doesn't need changes to the general curriculum. An IEP gives you both classroom accommodations and adjustments to the curriculum. Both will require a doctor's letter giving a diagnosis and stating a need for accommodations (but the doc letter doesn't need to list what those requirements are).

 

Lots of us have kids who have these plans in place. My son has a 504 that allows him to go to the bathroom as often as he needs to, lets him have a water bottle at his desk, chew gum, take assessment tests like state mastery tests in a separate room in an untimed setting, extra days to complete assignments, special seating consideration (away from daydream-inducing windows) etc. My daughter (1st grade) is about to get a 504 (as soon as I can get the doctor to actually mail the dang thing!) because she has a current epstein barr infection (like mono). It will state that she should only go to school for 4 hrs a day. This means the school will need to figure out how to change her schedule so that afternoon subjects are still covered while she's in school. So maybe during morning snack, a teacher's assistant will take her aside and give her a math lesson or the teacher will make sure her individual reading instruction is done while the rest of the class is at recess. At the moment, I'm picking her up at noon anyway because she's just too tired if she goes all day. But she's missing classroom instruction, because the school isn't legally required to accommodate her illness until they get the doctor's letter.

 

For more info, you can check out http://www.wrightslaw.com/

[Momto2]

We are less than a month into PANDAS with our 8 year old daughter. Ours presented will severely intrusive thoughts and constant confessions. You just described our daughter to a T over the last couple weeks.

 

My DD has also told me about some intrusive thoughts. This makes me feel so bad.

[Momto2]

Hyperactivity is very common. You may want to grab a video, as some things we'd label as bouncy could be considered choreiform movements by a neurologist. You can also search YouTube for video examples of choreiform movements (it is a little different than chorea but even if you can only find videos of chorea, you'll get a general idea - chorea is just more severe/pronounced).

 

You can also have your DD put her arms out straight in front of her. As her arms get stressed/tired, you might see her fingers start to move up and down like she's playing the piano. This is a very common choreiform movement seen in Pandas kids.

 

As for coping with all this energy - have her chew gum when doing school work. Give her a squeeze ball or eraser to hold in her free hand while she writes or thinks. If you have one of those exercise balls, let her sit on that for homework time or tv watching. Let her stand for meals. If you don't yet have a 504, ask the teacher to let your DD have some sort of manipulative (an object or scrunched piece of paper or some sort of fidget item) that she can hold while doing quiet work, particularly reading. For ADHD kids, their brains actually focus better when their bodies are multi-tasking. It seems maddening to us, but to them, action brings focus.

 

Thanks for this info. I did look up some videos and I don't think she has those type of movements. I also just had her hold her arms out, her fingers eventually drooped, but she wasn't moving them. She just said it made her arms hurt.

 

Amy

[momcap]

My DS8 and DS5 both fidget non-stop. I recall one specialist appointment when the oldest was 5 or 6, and the doctor commented that Ds was actually unable to hold still at all and gave it some fancy name. I never got that report because the doc accidentally erased his tape and it didn't get transcribed. My youngest is the same way. Can't hold still to save his life! I notice it gets worse when other symptoms flare too. They are positive for lyme, so I can't say this is 100% a PANDAS symptom - I don't know which things are caused by what, or maybe it's caused by something else altogether. My middle guy has some PANDAS symptoms and is positive for lyme, and has never had this symptom.

[T_Mom]

hi Mom2two, the constant bouncing of the legs, our d did this with the first noticeable episode but it was sudden onset "anorexia" associated with PANDAS and she bounced, hopped, etc trying to obsessively burn calories. If not anorexia compulsive exercising related -- then the advice from LLM is spot on to me, take a look at the Youtube chorea videos, and try to see if she can hold her hands out straight in from of her with arms extended, and if there is any finger fidgets, even slight, or hand drift. * The point is to see IF she CAN hold her fingers perfectly still with arms and fingers outstretched???

 

I would get to a Ps knowledgeable doctor for evaluation asap -- or at least try a 30 day trial of antibiotics myself, to just see--

Edited January 13, 2012 by T.Mom

[socalmom]

A 504 is an education plan. There are 2 kinds of plans our kids can qualify for that make the school legally required to accommodate their special needs. Section 504 of the Rehabilitation Act and a IEP (individual education plan. A 504 means the school has to make accommodations within the classroom but the child doesn't need changes to the general curriculum. An IEP gives you both classroom accommodations and adjustments to the curriculum. Both will require a doctor's letter giving a diagnosis and stating a need for accommodations (but the doc letter doesn't need to list what those requirements are).

 

Lots of us have kids who have these plans in place. My son has a 504 that allows him to go to the bathroom as often as he needs to, lets him have a water bottle at his desk, chew gum, take assessment tests like state mastery tests in a separate room in an untimed setting, extra days to complete assignments, special seating consideration (away from daydream-inducing windows) etc. My daughter (1st grade) is about to get a 504 (as soon as I can get the doctor to actually mail the dang thing!) because she has a current epstein barr infection (like mono). It will state that she should only go to school for 4 hrs a day. This means the school will need to figure out how to change her schedule so that afternoon subjects are still covered while she's in school. So maybe during morning snack, a teacher's assistant will take her aside and give her a math lesson or the teacher will make sure her individual reading instruction is done while the rest of the class is at recess. At the moment, I'm picking her up at noon anyway because she's just too tired if she goes all day. But she's missing classroom instruction, because the school isn't legally required to accommodate her illness until they get the doctor's letter.

 

For more info, you can check out http://www.wrightslaw.com/

 

Not to hijack the thread but you gave me info I REALLY need, my son's school is refusing to help me in ANY way. Thanks LLM!

 

I hope your daughter feels better soon, epstein barr sounds awful from what i've read.

 

P.S. does this law apply to private schools as well?

Edited January 13, 2012 by socalmom

[Momto2]

hi Mom2two, the constant bouncing of the legs, our d did this with the first noticeable episode but it was sudden onset "anorexia" associated with PANDAS and she bounced, hopped, etc trying to obsessively burn calories. If not anorexia compulsive exercising related -- then the advice from LLM is spot on to me, take a look at the Youtube chorea videos, and try to see if she can hold her hands out straight in from of her with arms extended, and if there is any finger fidgets, even slight, or hand drift. * The point is to see IF she CAN hold her fingers perfectly still with arms and fingers outstretched???

 

I would get to a Ps knowledgeable doctor for evaluation asap -- or at least try a 30 day trial of antibiotics myself, to just see--

 

We just got back from our ped. She was very understanding and did give us antibiotics. She also told us that they do have a couple other kids in the clinic that have been diagnosed with Pandas. We have an appointment next month with a doctor at our Children's Hospital, too. Our ped. is going to contact them to discuss our situation and see if we can get in sooner. So, I am at least feeling a little more hopeful today that there is some kind of plan in place.

 

Amy