Twinkle Toe Shoes cause epileptic seizures?

[onescgirl]

OP Just clearing up my one quote you pulled out about misbehaving. Please yes I know your child isn't misbehaving that isn't what I meant. I was replying to all the "well the shoes are a distraction, all the kids do is kick and fidget". My point was deal with the misbehavior don't just blame it on the shoes, they (the shoes) aren't misbehaving the wearer of the shoe is so deal with the child.

Good Luck finding out the story on Monday.

Thanks for clarifying, I took it out of context. I removed my comment.

 

[Scurvy]

Maybe you have to have a severe case of epilepsy like this for the shoes to affect?
I know we do not have any children at our school that have epilepsy this severe to have several a week. Children this severe would have to wear protective headgear at school & most likely would be attending a 'Special Center' school.


I don't think anyone should be inconvenienced. But, if it is a legit case, all parents should know about the sparkly shoe ban. It would prevent others, like me, to buy the shoes in the 1st place. Then, others would not be inconvenienced.

OP, thanks for all the responses. You're braver than I am - I think if my thread had grown this much I might never have come back! I wanted to respond to a couple of your points. While you are probably right that you'd need a severe case of epilepsy for seizures to be an issue, you don't need a severe case for them to cause migraines. I don't have migraines nearly as often as some people I know, but there are some flashing lights that will almost always trigger mine, and the ones on those shoes are a problem for me. They could be a trigger for your child's classmate or teacher as well. I do think you have a good point that everyone in the school needs to also be told that they can't wear the shoes any longer if there's any chance that they will encounter the affected person. At the least, everyone in your child's class should certainly be informed that the shoes aren't allowed in that class. Regardless, it does sound like you are handling this well. I can understand why you would want more information about this ban, and I hope the school is able to explain it to your satisfaction.

OP Just clearing up my one quote you pulled out about misbehaving. Please yes I know your child isn't misbehaving that isn't what I meant. I was replying to all the "well the shoes are a distraction, all the kids do is kick and fidget". My point was deal with the misbehavior don't just blame it on the shoes, they (the shoes) aren't misbehaving the wearer of the shoe is so deal with the child.
Good Luck finding out the story on Monday.

Of course the shoes aren't misbehaving. However, teachers have limited time with their students and they need to be able to focus on teaching as much as possible. That's one reason Silly Bands have been banned in so many schools. No, the Silly Bands weren't misbehaving and it's a shame they have to be punished by being banned but since they are inspiring the kids to misbehave then the best solution is just to eliminate that temptation to misbehave so the students are more likely to focus on their studies. It's the same with the shoes. The teacher could keep correcting the students for kicking and fidgeting, but that takes valuable time from the actual teaching. If the shoes are inspiring students to misbehave, the best solution is simply to remove the shoes from the classroom. I can remember my classmates trading shaped and scented erasers in class. They were banned. Trading cards suffered the same fate. So did shoes that fastened with Velcro, when the kids couldn't seem to keep themselves from adjusting the shoes every two seconds. Any time an item starts taking up too much valuable teaching time, it makes more sense to remove it from the classroom than to spend half the year telling the kids not to fiddle with whatever it is. The more unneccessary distractions the school can remove, the more time can be spent focusing on learning.

 

[RadioNate]

Maybe you have to have a severe case of epilepsy like this for the shoes to affect?
I know we do not have any children at our school that have epilepsy this severe to have several a week. Children this severe would have to wear protective headgear at school & most likely would be attending a 'Special Center' school.

I'm wondering how you KNOW that no one in the school that has sever epilepsy. Or even epilepsy in general. There very much could be a student in your DD's class that has epilepsy. I think it is actually pretty likely given what's happened. I think the nurse added "or migraines" as to not violate HIPPA laws and give out a students private medical information.

I have a friend who's DD has a problem with seizures. While she isn't epileptic...she does get seizures several times a week due to another medical condition. As an infant, she went to a special day care but now she goes to regular school. There is nothing wrong with her ability to learn. She isn't "challenged" in any way but she does deal with frequent seizures. She doesn't need "protective head gear." For what? Not all seizures result in the person falling on the floor and shaking around. There is no need for "special center" school.

I'm strongly leaning towards their being a child in your DDs class that has epilepsy or another "issue" and they are being (possibly overly) cautious to minimize the risk of any medical issues happening at school.

 

[C.Ann]

I'm strongly leaning towards their being a child in your DDs class that has epilepsy or another "issue" and they are being (possibly overly) cautious to minimize the risk of any medical issues happening at school.

I agree - and I certainly wouldn't make such a fuss over a pair of sneakers if there were even the remotest possibility that it could be detrimental to someones health..

 

[PrincessKsMom]

I did just want to add, about the so called 'months' it can take to have an IEP in place.....

NOT necessarily true....
Yes, as a parent of a child with some learning disabilities, I know, that it can be a complete ongoing nightmare to get any meaningful ACADEMIC accommodations or services.

But, this would NOT be an IEP.
This would be a medical necessity....
Possibly a 504 at most....
All this would take is a legit physician's report/request/excuse.

If a child had an accident and had broken their leg, a medical concern, they would IMMEDiATELY be excused from running the mile run in PE. They would immediately be given excuse for reasonable tardiness due to extra time needed to get from one class to another across the school, etc....

Thanks. I was the one who brought this up, and I don't really know anything about it, so I wasn't sure how this would be categorized.

 

[Scurvy]

I'm wondering how you KNOW that no one in the school that has sever epilepsy. Or even epilepsy in general. There very much could be a student in your DD's class that has epilepsy. I think it is actually pretty likely given what's happened. I think the nurse added "or migraines" as to not violate HIPPA laws and give out a students private medical information.
I have a friend who's DD has a problem with seizures. While she isn't epileptic...she does get seizures several times a week due to another medical condition. As an infant, she went to a special day care but now she goes to regular school. There is nothing wrong with her ability to learn. She isn't "challenged" in any way but she does deal with frequent seizures. She doesn't need "protective head gear." For what? Not all seizures result in the person falling on the floor and shaking around. There is no need for "special center" school.

I'm strongly leaning towards their being a child in your DDs class that has epilepsy or another "issue" and they are being (possibly overly) cautious to minimize the risk of any medical issues happening at school.

I was thinking the same thing, just from the other side. The privacy laws are drilled into teachers' heads contantly these days. Divulging medical information about a student is a Really Big Deal, and no one wants to be the one to do something like that. If I had to ban something because of a medical issue, there's no way on earth that I'd be specific about the problem. I'd be as vague as possible. I would have hoped that simply saying the reason was "a medical issue" would be sufficient, and hopefully it would be for most parents. It would be for me, but then I don't assume people are lying like many on this thread do. From this thread, though, I see that some parents feel entitled to know exactly what the student's diagnosis is, and they expect to actually see proof of it. If I had to be more specific, I'd probably list several possible things. People are good at adding up all the clues to figure out who the likely "problem child" is, and I wouldn't want the other parents to be able to figure out that little Suzie has seizures (or migraines or whatever) because of something I told them.

Also, I agree about the headgear. A friend of mine married a girl who was later diagnosed as epileptic. She apparently had been having seizures for years but no one realized it. She did have a tendency to stare off into space sometimes, and people just thought she was daydreaming. They are still trying to figure out all her triggers and regulate her medications. You certainly couldn't tell by watching her that she was seizing, and there was no need for headgear for her, either.

 

[mom3sonstt]

I would be curious to know how big some of the schools your children are enrolled in. My children go to a school where there are at most 30-some kids in a class (in a grade - not a classroom) and at the least about 20. A good majority of these kids have lived here their entire lives, and their parents had gone to school here. There is a girl in my youngest son's class whose mother was in my graduating class and her grandfather was in my mother's graduating class (and the 2 of them went to prom together last year ). All of this is to say - at my school - we would probably already know who the child with epilepsy was - we would have probably known shortly after the parents had found out. There was a girl in my oldest sons class (again I went to school with both parents - they moved back when their daughter was in 5th grade after the father got out of the military) The first day that the daughter started classes the mother came in and explained to the class that the girl had a medical issue (I forget specifically what it is - I don't think it was epilepsy) and that sometimes this causes her to have seizures. She wanted the kids to not be scared if something happened.
My middle son is in the Lifeskills class. He has never been given a specific diagnosis but it looks like Aspergers to me. He is extremely socially awkward - does not pick up any cues that he is talking too long (he can talk about WWE wrestling forever!), but the kids he goes to school with know him and they humor him. It's not like some stories I read on these boards where kids are ridiculed for being slow or different, the kids here just kind of accept him for who he is. That said, they don't invite him over for sleep-overs - but they do talk to him at lunch, or at a ball game, or if he runs into them somewhere. At graduation last year he got invited to several graduation parties, and several kids came to his. A lot of the kids wanted pictures taken with him (and their other friends) in their caps and gowns. So maybe my school is different -we all know each other.

If we got a call saying don't wear twinkle shoes because it could cause a seizure. I would probably know (especially if it were limited to one classroom) who it was.

The bad side of all that is that when your kid does something to get in trouble - everybody knows about that too

 

[onescgirl]

I'm wondering how you KNOW that no one in the school that has sever epilepsy. Or even epilepsy in general. There very much could be a student in your DD's class that has epilepsy. I think it is actually pretty likely given what's happened. I think the nurse added "or migraines" as to not violate HIPPA laws and give out a students private medical information.

I have a friend who's DD has a problem with seizures. While she isn't epileptic...she does get seizures several times a week due to another medical condition. As an infant, she went to a special day care but now she goes to regular school. There is nothing wrong with her ability to learn. She isn't "challenged" in any way but she does deal with frequent seizures. She doesn't need "protective head gear." For what? Not all seizures result in the person falling on the floor and shaking around. There is no need for "special center" school.

I'm strongly leaning towards their being a child in your DDs class that has epilepsy or another "issue" and they are being (possibly overly) cautious to minimize the risk of any medical issues happening at school.

Your friends daughter & the post I was commenting on are not in the same category.

I was replying to the poster that had a co-worker who had grand mal seizures 3x/week falling on the floor. One was caused by the shoes. I think this is the only poster that actually knew someone that was affected by the shoes. The co-worker could not even be in a room with fluorescent light on. I was stating maybe it would have to be this severe of epilepsy for the shoes to affect.

There could be students at our school that have epilepsy.

I do know there is no student at our school that has grand mal seizures 3x/week as severe as poster's co-worker that I was commenting on.

I would have thought a elementary child would have to have protective headgear if they were having that many severe grand mal seizures a week. I was thinking of child I saw at a different school wearing a protective helmet for that reason. I guess that would just be up to the parent/doctor.

 

[PrincessKsMom]

I would be curious to know how big some of the schools your children are enrolled in. My children go to a school where there are at most 30-some kids in a class (in a grade - not a classroom) and at the least about 20. A good majority of these kids have lived here their entire lives, and their parents had gone to school here. There is a girl in my youngest son's class whose mother was in my graduating class and her grandfather was in my mother's graduating class (and the 2 of them went to prom together last year ). All of this is to say - at my school - we would probably already know who the child with epilepsy was - we would have probably known shortly after the parents had found out. There was a girl in my oldest sons class (again I went to school with both parents - they moved back when their daughter was in 5th grade after the father got out of the military) The first day that the daughter started classes the mother came in and explained to the class that the girl had a medical issue (I forget specifically what it is - I don't think it was epilepsy) and that sometimes this causes her to have seizures. She wanted the kids to not be scared if something happened.
My middle son is in the Lifeskills class. He has never been given a specific diagnosis but it looks like Aspergers to me. He is extremely socially awkward - does not pick up any cues that he is talking too long (he can talk about WWE wrestling forever!), but the kids he goes to school with know him and they humor him. It's not like some stories I read on these boards where kids are ridiculed for being slow or different, the kids here just kind of accept him for who he is. That said, they don't invite him over for sleep-overs - but they do talk to him at lunch, or at a ball game, or if he runs into them somewhere. At graduation last year he got invited to several graduation parties, and several kids came to his. A lot of the kids wanted pictures taken with him (and their other friends) in their caps and gowns. So maybe my school is different -we all know each other.

If we got a call saying don't wear twinkle shoes because it could cause a seizure. I would probably know (especially if it were limited to one classroom) who it was.

The bad side of all that is that when your kid does something to get in trouble - everybody knows about that too

My daughter's grammar school had approx. 600 students (PreK-8). Her high school has approximately 2500-2800 (I'm assuming based on an incoming class of 700 freshman).

 

[Wishing on a star]

I live in what would be considered a small town...
Not completely out in nowhere...
But, not a large town.

700 students at the elementary school in this district.
It is an overcrowded mess with temp building classrooms, etc...
They built a big county-wide high school, it's like a small college.
Huge backups and sheriff's traffic control there everymorning.
DH will go the l-o-n-g way around to work everyday to avoid this at all costs.

 

[daughtersrus]

I would be curious to know how big some of the schools your children are enrolled in.

We're in a suburb of Chicago. There are approx 13,000 students in our district. Our local elementary school has about 800 students. (there are 12 elementary schools, 5 middle schools, 2 high schools and an early childhood school).

 

[C.Ann]

Your friends daughter & the post I was commenting on are not in the same category.

I was replying to the poster that had a co-worker who had grand mal seizures 3x/week falling on the floor. One was caused by the shoes. I think this is the only poster that actually knew someone that was affected by the shoes. The co-worker could not even be in a room with fluorescent light on. I was stating maybe it would have to be this severe of epilepsy for the shoes to affect.

There could be students at our school that have epilepsy.

I do know there is no student at our school that has grand mal seizures 3x/week as severe as poster's co-worker that I was commenting on.

I would have thought a elementary child would have to have protective headgear if they were having that many severe grand mal seizures a week. I was thinking of child I saw at a different school wearing a protective helmet for that reason. I guess that would just be up to the parent/doctor.

As I posted waaaay back, someone very, very close to me suffers from epilepsy - both the grand mal type and the "space outs" and/or garbled language.. Said person has not had a grand mal seizure in almost 11 or 12 years now.. That particular seizure was the result of being over tired - nothing else.. (Others prior to that have been caused by any number of things - even with meds..) So - one grand mal seizure (even while taking meds) would not be a reason to wear a helmet or other protective head gear for 11 or 12 years.. No head gear really says nothing about someone who has epilepsy..

 

[onescgirl]

I just talked with the school's vice-principle, who by the way is the nicest VP ever!
From K5-5th, I have NEVER had to talk to anyone, including teachers, about a problem. I had a hard time keeping my voice from quivering I was so nervous.

Here is what she said:
There had been a complaint about my daughter's shoes because there was concern about epileptic student(s). There was concern a health issue could occur from shoes. The shoes had not caused any health issues when she wore them.
I do not know if complaint was from a parent or a teacher, but it was not from the student.
The VP said that, yes, there are other students wearing the Twinkle Toes. There has not been a complaint made about those children & that's why their parents were not informed.
She said there were no school rules against the Twinkle Toes. I could let my DD wear them, but asked if I could not have her to wear them everyday.
She was happy to hear that I had contacted the Sketcher company and what they had said. She is going to do research herself & contact the epileptic(s) parents & talk with them.
She will then talk with other school administrator's to see if a ruling needs to be placed district wide.
This is something already on her agenda to work on. Not because of my discussion with her today. But, because this is a new issue as these shoes have become popular recently.
I did explain they need to let parents know if the Twinkle Toe shoes are going to be a safety problem because there will be more Twinkle Toe shoes bought for kids if parents do not know.

My DD does Safety Patrol in the morning & afternoon car line where she opens & closes the door for students. I now have the feeling that maybe a parent saw her wearing the shoes in car line last week & complained about them. That would explain why DD is the only student to have received a complaint.

Anyway, there you go. I am on the PTA board & I am friends with several of the school teachers away from school. I appreciate that I was able to vent on here instead of to others at the school. I like keeping things quiet.

 

[diznygirl]

FYI - there are other Twinkle Toes that do not have the lights on them. If they are going to make a ruling due to the medical nature of blinking lights on shoes they will have to be sure they do not state just one brand.

Sounds like the school is being very reasonable about the issue.

 

[cat83]

First off- I love how you've been able to keep your cool around here, when a few posts are borderline attack. I'm hardly so gracious.

Second- one point of what you've just confirmed from the VP- that she is the only one who was asked not to wear them- very much angers me. If there was a true danger, then the proper thing to do would be to either ban them, or politely request that ALL students stop wearing them.

There are two ways to look at it: either it does cause a risk to another student, or it doesn't.
Either way, they handled it wrong. If it does, then they shouldn't limit it to just your daughter just to please the parent. That is doing the bare minimum and not solving the problem. If it doesn't, then they shouldn't single you out just as a means to please that parent. (Ok, they don't know for sure yet...but still)

I know I'm not being clear here, having been up all night. But I do agree that the VP is being reasonable- probably in response to how reasonable you have been.

 

[tinker&belle]

I just talked with the school's vice-principle, who by the way is the nicest VP ever!
From K5-5th, I have NEVER had to talk to anyone, including teachers, about a problem. I had a hard time keeping my voice from quivering I was so nervous.

Here is what she said:
There had been a complaint about my daughter's shoes because there was concern about epileptic student(s). There was concern a health issue could occur from shoes. The shoes had not caused any health issues when she wore them.
I do not know if complaint was from a parent or a teacher, but it was not from the student.
The VP said that, yes, there are other students wearing the Twinkle Toes. There has not been a complaint made about those children & that's why their parents were not informed.
She said there were no school rules against the Twinkle Toes. I could let my DD wear them, but asked if I could not have her to wear them everyday.
She was happy to hear that I had contacted the Sketcher company and what they had said. She is going to do research herself & contact the epileptic(s) parents & talk with them.
She will then talk with other school administrator's to see if a ruling needs to be placed district wide.
This is something already on her agenda to work on. Not because of my discussion with her today. But, because this is a new issue as these shoes have become popular recently.
I did explain they need to let parents know if the Twinkle Toe shoes are going to be a safety problem because there will be more Twinkle Toe shoes bought for kids if parents do not know.

My DD does Safety Patrol in the morning & afternoon car line where she opens & closes the door for students. I now have the feeling that maybe a parent saw her wearing the shoes in car line last week & complained about them. That would explain why DD is the only student to have received a complaint.

Anyway, there you go. I am on the PTA board & I am friends with several of the school teachers away from school. I appreciate that I was able to vent on here instead of to others at the school. I like keeping things quiet.

It sounds like you have a great VP to work with and she sounds very professional. Due to this, I think your chance of having a positive resolution that works for everyone is more possible. I am curious about what is finally decided.

 

[The Mystery Machine]

Good for you for handling well.

However as an FYI to you the light up shoes were around when my dd was in preschool which was over 13yrs ago, so they are not "new". Maybe the brand Twinkle Toes, but not the light up part.

I just wanted to tell you since you seem to think they are "new" and then you don't look like a dork in a meeting.

 

[Scurvy]

Good for you for handling well.

However as an FYI to you the light up shoes were around when my dd was in preschool which was over 13yrs ago, so they are not "new". Maybe the brand Twinkle Toes, but not the light up part.

I just wanted to tell you since you seem to think they are "new" and then you don't look like a dork in a meeting.

My son actually had some light up shoes about 10 years ago, so shoes with lights are definitely not a new thing. However, these Twinkle Toes are very different that the older light up shoes. The shoes my son had were fairly dim and just sort of blinked a little, and you really wouldn't notice them in a lighted room unless you were looking directly at them. These new shoes are very bright and vivid, and they flash much more dramatically. They are much more noticeable and eye catching than the older light up shoes. The old ones didn't bother me at all; the new ones bother me quite a bit. So even though the concept has been around for a while, the newer technology could easily be an issue for people who have never had problems with that type of shoe before.

 

[onescgirl]

FYI - there are other Twinkle Toes that do not have the lights on them. If they are going to make a ruling due to the medical nature of blinking lights on shoes they will have to be sure they do not state just one brand.

Sounds like the school is being very reasonable about the issue.

You're right. And, I think if they make a ruling against it, it will just state light-up shoes or something generic like that.

First off- I love how you've been able to keep your cool around here, when a few posts are borderline attack. I'm hardly so gracious.

Thank you . I was quite shocked with some comments, not just at me, but to other posters.

It sounds like you have a great VP to work with and she sounds very professional. Due to this, I think your chance of having a positive resolution that works for everyone is more possible. I am curious about what is finally decided.

She is new this year & I think they did a great job hiring her! I just love how I broke her 2nd week in with a light-up shoe problem!

Good for you for handling well.

However as an FYI to you the light up shoes were around when my dd was in preschool which was over 13yrs ago, so they are not "new". Maybe the brand Twinkle Toes, but not the light up part.

I just wanted to tell you since you seem to think they are "new" and then you don't look like a dork in a meeting.

Thanks, I don't want to look like a dork!
My daughter also had the old version of the light up shoes when she was a toddler. When VP said new issue, I think she was referring to how this brand has become really popular this past year & no previous complaint had ever been made until the one my daughter received. These shoes do blink a lot more than the older style light-up shoes. But, I still stand with my opinion that you do not see the lights if you're not looking at the feet (unless you're in the dark).

 

[DVCBELLE]

I think that unless they make a school wide ban - then the school needs to be specific with you about why it is for your daughter only.

When my son was in preschool - one of the children in his class had a severe peanut allergy. We were notified that a child in our class had a peanut allergy at the beginning of the year and that no nuts were to come in the classroom. I felt this was reasonable and our district notifies the classrooms every year if the room has an allergy in them. Doing so does not jeopardize confidentiality since we weren't told who - although we all knew b/c the mom wanted everyone to know who...so I would think if a child in the class had a problem where these shoes were causing an issue that a notice would go home to the parents in that classroom and then I would be respectful of that. But without a clear directive and understanding of what is happening - I think that someone blew this way out of proportion by complaining about the shoes...

Now to go one step further - the child in my son's class had a reaction on the playground one day - turns out a student who had eaten a Peanut butter sandwich for lunch at home had touched him. So then everyone who had a child that went to recess with or was in class with this child all got notices that our child was not allowed to eat Peanut butter prior to going to school. That one made me mad. I was perfectly happy to make the accomodations at school but I did not think asking us to feed our kids a certain way at home is acceptable. Now - I did make the accomodation mostly b/c he didn't eat a ton of peanut butter but it still seemed to me that was going overboard.