seizure moms - school question

meldoo2002

My boys both have epilepsy.  So far they have only had seizures during sleep and they are very specific - vomiting, incontinence, awake, but not responsive verbally for up to an hour.  I did have to administer Diastat on Friday night to Nathan.  The school nurse wants him to have the Diastat at school now in case of emergency.  The neurologist is ok with it either way saying that if it's that bad a paramedic can administer the medication the child needs.    I have some issues I've never dealt with before now.  The school nurse leaves at 3:00 and preschool goes til 3:30.  She says she's the only one that can administer the Diastat.  According to what I can find of the law another trained professional could administer it (like his teacher), but do I want to push that???  And what happens come to Kindergarten.  Can they still ride the bus??  Go on field trips?  

They don't have IEPs as there are no delays currently.  They could use 504s I would think if it comes down to it.  My point is it they only ever have happened when sleeping so in K it won't be an issue (unless their type of seizure changes which it could), but in PreK they do have a rest period and sometimes they do actually sleep based on teacher report.  

If your kids have Diastat at school what is the protocol?  

funchicken

My DD doesn't have seizures, but she does have severe food allergies that require her to have an epipen available in the classroom. She's in kindie now, but when she was in preschool all of the lead teachers were certified to administer medication. It might just be a matter of their teacher getting some additional training, which shouldn't be a big deal. Have you asked the school about it? ETA: DD does ride the bus. She carries extra epipens in her backpack. The bus drivers have a list of who has allergies and they are also certified. I'm sure schools vary on this, though.

mommyof4boys

The school has a medical plan in place for Chris.  They said they'll have someone on staff that understand how to pick up on his seizures to make sure he's ok.

meldoo2002

mrszee2b said:

My DD doesn't have seizures, but she does have severe food allergies that require her to have an epipen available in the classroom. She's in kindie now, but when she was in preschool all of the lead teachers were certified to administer medication. It might just be a matter of their teacher getting some additional training, which shouldn't be a big deal. Have you asked the school about it? ETA: DD does ride the bus. She carries extra epipens in her backpack. The bus drivers have a list of who has allergies and they are also certified. I'm sure schools vary on this, though.

My understanding is it varies state to state, but the nurse tells me that Diastat like Insulin needs to be given after an assessment of the child's needs/state so it can't be administered by anyone other than a nurse (unlike epi pen which can).  She says that's the law in MA though I do see loopholes... just not sure how far to push it.  

meldoo2002

-auntie- said:

Is this a public school? Normally kids with issues that have the potential for needing immediate care have plans in place for training staff who will be there until first responders can be on site.

When DS's classes had field trips a school nurse attended since there were always medically fragile children included from the self contained classrooms.

DS's high school marching band always had a nurse available with them during camps, practices and performances. One even traveled to Argentina with them. Good thing, too, since about 99% of them contracted Norovirus.

It is a public school.  She told me that she would go on field trips.  We are now in the process of developing a "seizure action plan."  We had a good meeting on Tuesday.  Part of my issue is she immediately wants to call 911 and stated so in an email, but that's not always necessary.  I find it ridiculous you would walk a child on to an ambulance when a little TLC is enough to get them through (out of 13 seizures between the 2 of them I've had to call 911 once).  

She does leave at 3 though and school goes til 3:30 so there's going to be some issues around that.  She says the Diastat can't be given by someone other than her trained that it has to be a nurse so they are going to figure that out once the doctor faxes the seizure plan and med orders.  DH just picked up the meds for school today... 1 kid $253.  That means at this point we have almost $500 of "in case of emergency" meds sitting in the nurse's office between seizure and asthma.  

meldoo2002

-auntie- said:

meldoo2002 said:

It is a public school.  She told me that she would go on field trips.  

This is good. Do they bring in someone to cover her when she does? Because there may be other kids who need an RN to accompany them on trips which could put your kid at risk of not having a trained medical professional in the building.

I don't know yet... she made it seem like this never happens. I do think they would bring someone in to cover her, but it's a moot point.  They don't go on any field trips this year.  They are peer models in a full inclusion autism program and the teacher already told me they won't be going anywhere.  In K they will be in a totally different building so we'll be starting over with the nurse.  

We are now in the process of developing a "seizure action plan."  We had a good meeting on Tuesday.  

Great. I'm glad you and the school are working together.

Part of my issue is she immediately wants to call 911 and stated so in an email, but that's not always necessary.  I find it ridiculous you would walk a child on to an ambulance when a little TLC is enough to get them through (out of 13 seizures between the 2 of them I've had to call 911 once). 

You're probably going to have suck this one up. Sorry.

There are a lot of reasons why-

1. Liability. It is best practice as a medical professional to err on the side of caution here. Job one is keeping your boy safe.

2. She is not a physician with the training to determine with certainty the difference between an emerging crisis and a hiccup.

3. She may not have the training to manage his care. Not all school nurses are nurses. Is she even an RN? Some schools use LPNs or medical assistants because the focus of a school nurse is almost all public health and first aid. 

4. He's not the only child in her care. This is a biggie. She may feel it important to remove your child from the situation to spare scaring the other kids or to preserve his dignity if he become incontinent. She also has to be more or less free to deal with all the other bumps, fevers and vomiting they go along with her job

While I get this, they do not have convulsive seizures, they are not always incontinent either.  At times they have vomit a small amount and then are verbally unresponsive for up to an hour (though they can sit, follow a basic direction, etc.)  To meet that would be totally traumatizing to make a child go on an ambulance at 4 years old when they could rest in the classroom until I get there... I've been called twice for illnesses already (though one wasn't really) and I was there in 10 min. both times.  The nurse did say she'd follow whatever the neurologist wrote up.  The I'm calling 911 seemed to wane and she even mentioned she was ok without the Diastat if the neurologist was.  

She did say she'd follow whatever plan the neurologist came up with so hopefully there's some relatively clear steps.  She is an RN.  Which is why she said she can administer the Diastat because she can assess the situation like in Insulin which is also not allowed to be delegated out because they require assessment.

She does leave at 3 though and school goes til 3:30 so there's going to be some issues around that.  

That's just wack. It's ironic that IDEA has put more and more kids with significant health needs into public schools and budgets cut nurses. Especially given that they have to deal with public health concerns, calculating BMIs for report grades while looking out for child abuse and kids making dangerous choices. Grrr. 

Yep she' thinks it's wack too... just now showing how important it is to have coverage.  Though so far my kids seizures are only when they sleep so by 3:00 they should be fine.  As it is they sleep about 50% of the time seeing rest is only 20 min.  Last week the teacher had Nathan do quiet work at the table instead of resting to avoid a seizure.  

She says the Diastat can't be given by someone other than her trained that it has to be a nurse so they are going to figure that out once the doctor faxes the seizure plan and med orders.  DH just picked up the meds for school today... 1 kid $253.  That means at this point we have almost $500 of "in case of emergency" meds sitting in the nurse's office between seizure and asthma.  

That's a hella lot of cash tied up in prescription futures. 

I wonder if the Diastat itself is part of the issue. Could this be outside of her comfort zone? I could totally see where teachers would be uncomfortable with administration of rectal gel in a way they wouldn't around a Epipen. Especially if he were having a seizure. 

One of my friends went through the EMT thing with her younger son a few years ago. When he hit his growth spurt he would pass out almost monthly. Like every 27-29 days. His mom and I joked it was like AF. The doctors at first thought he'd outgrown his blood supply and had postural hypotension. 

But it continued and got worse. He passed out once on my watch at scout camp while rock climbing, another time he was with his parents working on a Order of the Arrow project- they transported him 0.5 miles in a wheelbarrow without him regaining consciousness. 

Then it got really scary- he started having conversion reactions. When he'd convert, he'd lose the use of his arms, sometimes legs too. Once he couldn't speak for a week. It was hell. Especially since he had a full team of specialist and all they could do was speculate. After a time, the team determined that this dip in BP wasn't an emergency, and contacted the nurses at the school to suggest they let him chill out in the office until his mom could come. But they insisted on transporting him to the hospital. His parents have excellent insurance, but even so the 3 mile ride set them back close to $400 each time.  

The teacher is my friend's mom so never mind that, I don't want her to be "responsible" for anything she's not comfortable with.  If it was legal I might push it, but I would have a side convo first with the teacher to find out if it was something she wanted to be responsible for.  She says no... then I don't push it.  It's not worth it to me.  

I can see it could be scary, but you can't tell me they've never had to deal with seizures before.  There's another little girl in their class that has the same diagnosis as them.  Crazy that 3 out of 12 kids have the same seizure syndrome.  I almost feel like they'd be more comfortable if they convulsed.  The fact that they are more autonomic responses really seems to have thrown the nurse, though she did say she was much  more comfortable after I gave her a bunch of literature and we had a sit down.  

meldoo2002

And coming back... I get the 911 thing.  I really do.  I just am hoping the seizures never occur there (they didn't at daycare over the past couple years) and it's not a problem.  I just hate the idea of throwing a conscious 4 year old on an ambulance and sending them off when they will likely be fine by the time they reach the ER... never mind their ID twin being left behind who will probably be freaking out worse about having one sent off.  If they need the ambulance obviously by all means I just wish they'd be willing to assess the situation a tiny bit.  Not something I'll fight about... I would think 4 adults to 12 kids could cover the lone child that needs support til mom gets there but maybe that's too much to expect.  

funchicken

meldoo2002 said:

And coming back... I get the 911 thing.  I really do.  I just am hoping the seizures never occur there (they didn't at daycare over the past couple years) and it's not a problem.  I just hate the idea of throwing a conscious 4 year old on an ambulance and sending them off when they will likely be fine by the time they reach the ER... never mind their ID twin being left behind who will probably be freaking out worse about having one sent off.  If they need the ambulance obviously by all means I just wish they'd be willing to assess the situation a tiny bit.  Not something I'll fight about... I would think 4 adults to 12 kids could cover the lone child that needs support til mom gets there but maybe that's too much to expect.  

I apologize--I didn't realize how the med had to be administered.  And I can see why a nurse would need to assess them.  I'm sure the 911 call is a liability issue.  Plus, on an average day you could probably be there in 10 minutes, but unforeseen things can happen, and you'd want them to have the best most professional care possible if you couldn't be there right away.

It's funny, epipens have become so commonplace in schools, and lots of doctors prescribe them without really giving parents detailed information about how/when to use them.  We've only had to administer the epipen to DD once (thank goodness), but it is no easy task on a terrified 4-5 year old having an allergic reaction.  I keep four sets of unexpired pens on hand at all times (two sets for school, two sets for home), so I can sympathize with having hundreds of dollars worth of meds on hand that you hope you never have to use.

meldoo2002

-auntie- said:

So they're not on spectrum but they're in an ASD classroom? And considered NT peer models even though they have epilepsy? 

I hate the idea of calling an ambulance for no good reason, but I hate the idea of not calling one and having a bad outcome even more.

Yes the way our town is set up there is 1/2 day preschool, full day preschool.  The full day (for NT students) is in the autism program.  There are 6-8 classes that vary in intensity of how ABA services are provided.  They are in the "highest functioning" classroom so there are 7 or 8 NT models and 4-5 children with ASD.  I have them in there because they NEED the structure to be ready for K.  

They have epilepsy, but no delays at this time so they count at NT, yes.  

meldoo2002

mrszee2b said:

meldoo2002 said:

And coming back... I get the 911 thing.  I really do.  I just am hoping the seizures never occur there (they didn't at daycare over the past couple years) and it's not a problem.  I just hate the idea of throwing a conscious 4 year old on an ambulance and sending them off when they will likely be fine by the time they reach the ER... never mind their ID twin being left behind who will probably be freaking out worse about having one sent off.  If they need the ambulance obviously by all means I just wish they'd be willing to assess the situation a tiny bit.  Not something I'll fight about... I would think 4 adults to 12 kids could cover the lone child that needs support til mom gets there but maybe that's too much to expect.  

I apologize--I didn't realize how the med had to be administered.  And I can see why a nurse would need to assess them.  I'm sure the 911 call is a liability issue.  Plus, on an average day you could probably be there in 10 minutes, but unforeseen things can happen, and you'd want them to have the best most professional care possible if you couldn't be there right away.

It's funny, epipens have become so commonplace in schools, and lots of doctors prescribe them without really giving parents detailed information about how/when to use them.  We've only had to administer the epipen to DD once (thank goodness), but it is no easy task on a terrified 4-5 year old having an allergic reaction.  I keep four sets of unexpired pens on hand at all times (two sets for school, two sets for home), so I can sympathize with having hundreds of dollars worth of meds on hand that you hope you never have to use.

Yeah like I said I hope it never happens, but yeah if they need to call 911 they need to.  Like you said I'd rather they be safe than sorry.  

meldoo2002

When we met with the nurse last week we met with the teacher and director of preschool special ed. also.  They were confident it didn't fit even a 504 plan because the boys are not restricted in any way by their diagnosis from accessing the regular curriculum.  (though I'm not sure when we say a nurse has to go on fieldtrips.)

meldoo2002

-auntie- said:

That's different. Most places would not consider a child with a seizure disorder to be neurologically typical. My district wouldn't consider a kid with ADHD NT either. But it works...

Yeah they just had to pass a screening and then if there were concerns on that they would do an evaluation, but they passed just fine.  I don't know maybe it's different around here because I've worked in 4 different districts as an SLP and each one as long as you passed the screening you counted as a peer model.  Even if the teachers had an inkling that further in to the year there may be issues (like ADHD or undiagnosed ASD) they still accepted them.  I guess their schools don't go with NT as much as "typically developing" is the wording the school uses and the boys are "typically developing" as far as a peer model goes.

fancynewbeesly

-auntie- said:

That's different. Most places would not consider a child with a seizure disorder to be neurologically typical. My district wouldn't consider a kid with ADHD NT either. But it works...

I respectfully disagree. I had a seizure disorder since I was 2. Now, I only had absence seizures--so not the typical seizures, but I have never been restricted as a kid in anything. I know my parents never had to fill out a 504 or IEP (even though the names were probably different in the 80s). I was always in a regular education classroom---from preschool on up. I was in Track 1 classes in middle and high school. My only restriction is lack of driving  

meldoo2002

This is why I distinguished... I agree that NT means neurologically typical which you're right... they aren't.  Something in their brain is wired differently.  Making it not typical.  But they are "typically developing" so far which is what the district was looking for.

And as they get older they are likely to outgrow the seizures though it's not a guarantee.  Could it affect their learning?  Sure.  And of course if their type of seizure changes that can too.  At this point they count as "typically developing" peers though.  

There also was no wait list or lottery for the peer spots in this program as in many years there are so I don't think they were turning people away from paying them.  

meldoo2002

Thanks Auntie... oh yeah we do pay... over $600 a month total.  No sibling discount.  

I agree about the learning stuff.  They were very early.  I already see ADHD aspects in both of them though different.  My family has a rough history in that my brother is undiagnosed ASD, probably my father also, and my 1/2 sister is diagnosed with Aspberger's though I think her delays are more than that.  I also see tiny bits of Aspberger's tendencies in Nathan though I think it's more the professional in me and Joey looked autistic on paper at 18 months, but not so much now.  They both are adverse to change and like routine but now that they are in school that has gotten better.  Cleaning out toys and giving them away has been difficult (though getting much better... they willing each donated 3 things last week on their own accord).. they still complain I took away their toddler beds 2+ years ago.  

They have amazing memories, great phonological skills, phonemic awareness, and are doing some beginning reading really without any instruction.  They have really good play skills and imaginations which I attribute some to being on lockdown their 2nd winter... they never left the house except for appointments from 8months - 15 months due to potential illness... they certainly learned how to be home and play with their toys.  They are pretty good friends too... busy boys, but definitely nice models all around.

Thank you for your insight.  Off to call the neurologist again this morning to follow up on the med orders and action plan as I haven't heard from her about the status in a few days.  

Paigeo

My DD has epilepsy. She is in kindergarten and the school does not keep our Diastat on hand. We are lucky that right now her medications have kept her seizure free. If she has a seizure at school they would call 911. In your situation I would be fine with just the nurse being able to administer the Diastat. Sounds like the chances of your boys having a seizure while the nurse is not there is pretty small. Only you know your boys best though so ultimately you have to do what makes you feel most comfortable.

meldoo2002

The diastat is now in place.. mostly because it makes the nurse feel more comfortable.  They are working on having a nurse there til 3:30.  It's a huge issue not just from my point, I guess they've been fighting it for a couple years.  Right now as of 3:00 her office is locked so the 6 preschool classrooms don't even have access to an Epipen from 3-3:30.  It's just my kids and the whole Diastat thing that may finally get a nurse there til 3:30.  

meldoo2002

News today - nurse on staff there til 3:30 now.  The classroom teacher came running out to tell me after school.  She said she's never seen progress so fast on a medical issue since teaching in this district.  (even the meeting I had with principal, nurse, and special ed director she said happened exceptionally fast compared to usual).  So here's to moving forward....

macchiatto

Oh wow, mel, that's great that they were able to get the nurse issue resolved!

mommyof4boys

WAHOO!