504 help!

[izzi'smom]

So Izz has a 504 plan. We meet with the administration each September and outline any changes. I have a few issues this year
First, the school nurse asked "Did they figure out what was going on with her"?

Um. She has Crohns. As written in the 4 page 504 plan. ???

I actually had a copy with me and handed it to her.

DD told me a week before school started that she went to the nurse with a stomach ache last year, who told her "It's probably your Crohn's; go back to class". WTF? I brought it up to the nurse, and let her know that sometimes laying down, a heating pack, or some TLC helps immensely in this instance. PArticularly since dd rarely complains to people other than me. Said nurse had no comment.

Additionally, how do you ensure each employee is aware of their condition? Her PE teacher had no clue after teaching her for over a year. I hate to be a pain but do I go to each classroom, hand them out and make them sign that they received it? She has new art, PE, classroom teacher X2, and principal, plus a new lunch aid this year.

She is also supposed to go to the nurse an hour before lunch for meds (MUST be done at this time on an empty stomach-she gets it 3x/day). She missed a dose the second day of school. She remembered, but the teacher told her to put her hand down, so she did.

TIA for any input.

 

[Jmrogers4]

I generally email each teacher and just basically said he's on a 504 for crohn's disease you should have received a copy please contact me if you have any questions about his condition.
I'm super excited for next 3 years at high school, just had 504 meeting this morning and his 504 case manager has crohn's, he totally gets it.

 

[izzi'smom]

How awesome!

 

[Momtotwo]

izzi'smom- I thought every person who works with our kids is supposed to get a copy of the 504 plan. Can you request a meeting with the school nurse, principal, primary teacher and school psychologist? The teacher has to be involved in monitoring Izzi's med schedule, too. Isn't she very young?

We are only at the health plan stage now and the 504 comes next, but our school nurse shares the health plan with the other teachers - gym, etc. It includes info about self monitoring for fatigue and rest, reporting any medical sympoms to the school nurse, etc. But not sure how helpful that is if your school nurse responds the way she did last time. It sounds like she needs some education. Feel free to send me a message. I'm in NY, too.

 

[Jmrogers4]

Yes they are supposed to be sent to everyone and most schools have some internal database that the student flash that they are on a 504

 

[my little penguin]

Ours has a database
Plus a fluorscent sheet sent to each teacher so even the subs can see it.
We have found the elementary schools generally don't know how to handle crohn's even with 504 since most kids that visit the nurse have generic stomach aches at that age .
Middle school is much easier .

The key is the nurse
If they are in your side your fine
If not its a very long year.

I email all the teachers the ccfa brochure link every year plus mention the 504.

When DS mentions anything I send an email to the nurse and cc all the teachers as this happened and maybe we could do this instead sorta thing.

 

[Clash]

Our 504 included all of C's teachers including PE, nurse, 504 director, counselor. A packet was given to each of these staff and I was asked to go over the specifics of C's disease to help them better understand. I had pamphlets about his illness then points about him specifically.

Maybe requesting a meeting including everyone to go over these blips that have occurred will get everyone on the same page. C's school nurse was okay but the curriculum director and 504 director for the school were better allies for us.

Of course, C was much older and I can understand the struggles faced may be different. I hope you are able to get everyone on the same page. HUGS

 

[izzi'smom]

I'm going to request a meeting-it's so hectic this early in the year for them and I feel bad but I don't want to wait. (There is an open house in 2 weeks I was thinking of waiting for). I hate to be so pushy but I feel like we aren't being taken seriously.

 

[Mehita]

My son emailed all his teachers (9th gr), told them in three bullet points what he needs in the classroom, said he had a 504 and asked of anyone had questions. Surprisingly, he got a reply from every single one. Like you said, the beginning of the year is so busy, BUT you also need to know your kiddo is safe.

We also have it written in his 504 that he should never, ever be sent to class without a call to me first. That might be something to ask for. I set up a custom buzz and ring on my phone so that I'll always know it's the nurse and will answer.

 

[AZMOM]

So Izz has a 504 plan. We meet with the administration each September and outline any changes. I have a few issues this year
First, the school nurse asked "Did they figure out what was going on with her"?

Um. She has Crohns. As written in the 4 page 504 plan. ???

I actually had a copy with me and handed it to her.

DD told me a week before school started that she went to the nurse with a stomach ache last year, who told her "It's probably your Crohn's; go back to class". WTF? I brought it up to the nurse, and let her know that sometimes laying down, a heating pack, or some TLC helps immensely in this instance. PArticularly since dd rarely complains to people other than me. Said nurse had no comment.

Additionally, how do you ensure each employee is aware of their condition? Her PE teacher had no clue after teaching her for over a year. I hate to be a pain but do I go to each classroom, hand them out and make them sign that they received it? She has new art, PE, classroom teacher X2, and principal, plus a new lunch aid this year.

She is also supposed to go to the nurse an hour before lunch for meds (MUST be done at this time on an empty stomach-she gets it 3x/day). She missed a dose the second day of school. She remembered, but the teacher told her to put her hand down, so she did.

TIA for any input.

Um....I'm pissed reading this. I would ask for a meeting with the Coordinator. Tell them of the non-compliance with Izzi's 504 and ask to either meet with all the teachers in a conference again or double check the plan and tell them you'd like the copy that all the teachers have signed off on.

Claire has 7 different teachers in Jr. High and every teacher came to the meeting.

That's ridiculous for Izzi.

J.

 

[Brian'sMom]

I just had our yearly meeting. At the Elementary, Middle and now the high school the councelor handles this. He has all the teachers that are avail (Which was all of them but 2 this year) meet in the conference room. They go over the 504. I answer questions and make comments or concerns. He then gets signatures from all of his teachers and then I get a copy. It happens every year this way. I can email teachers if I want... but I don't really need to. (Unless something new comes up). The councelor said to me and in front of everyone at the meeting, "If anything comes up that is a problem please let me know and we will address it immediately". They can get into big trouble with the state if the 504 isn't adhered to. It makes me mad that Izzi is being treated that way. You would think all teachers everywhere would have compassion when it comes to this, but I've come to realize that many don't really understand this disease. I always seem to have to educate a few of them every year. Keep us posted!!

 

[MamaHenn]

Sorry to piggyback/highjack this thread but how do you all advise handling things when there aren't many "issues" present? DS (11) just started middle school. We have an appointment with the GI next week and I know she suggests 504's through college but as we've never done this and as he doesn't have the typical Crohn's symptoms, I'm wondering how to handle? I've printed the ccfa 504 info that I've seen in other threads. DS (right now) follows a restricted diet and is on LDN. I know that can/may change in the future (something we'll be talking about with the GI) but as of now his only symptoms have been no weight gain and anemia. The only issue I can see right now with the school is that he can't have any food or snacks between classes or carry a water bottle IN class. This isn't so much an issue but for the fact that we're trying to get him to gain some weight and I realize that this is one of the easier ones to rectify but I'm not sure what else we'd need to do.

 

[my little penguin]

No weight gain in an 11 is a significant symptom.
Having a 504 is easier to add too once you have it then to have to lobby for it.
The gi will give you a letter with the accommodations specific to your child.

That said not gaining weight means your child probably still has underlying inflammation or disease. When crohn's is under control 11 year old kids gain and grow like crazy.
Have you tried supplements (formula)?
These combined with the right meds helped DS take off in growth and weight.
He drinks 2-3 peptamen jr a day .
Good luck

 

[AZMOM]

A - I'm still mad. Any progress with Izzi's school?

J.

 

[izzi'smom]

MamaHenn I am just getting back-sorry!!

I pushed (and pushed) for a 504 when Izz had few symptoms-a lot of items were "in case". When your little one is sick, the last thing you want to do is sit down with admin to hammer out a 504. Do it now. If you don't end up needing it-great!! If you do, you can spend time with your kiddo when they need you most.

Azmom

ugh. I emailed two teachers, the nurse, the principal, the gym teacher, librarian, art, and music teachers.
Not. One. reply.

Two weeks passed, and I asked the principal if she'd received my email. She did, and assumed someone else answered me.

She emailed me that day.
So did the nurse.

"Angie,
The 504 states that the Carafate is to be given 1 hour prior to lunch however I have an order from Dr. X and it states to give Carafate 30 minutes prior to lunch. Legally I need to follow the order that was written by Dr. X. This is to make you aware that the 504 and the medical order is different. If you have any questions please give me a call.
Thanks You"

It took her 15 days to notice the directions I gave her (and that the bottle was labelled with) differed from the script faxed to her. This medication interacts with her supplements and antibiotic, so this could have been a potentially serious problem.


Sent: Tuesday, September 09, 2014 12:48 PM
Subject: Isabelle

Thank you for getting back to me. I appreciate you bringing this matter to my attention. I have concerns that it took over two weeks for you to let me know that the dosing instructions that the medication bottle is labelled with and the script faxed to you by Dr. X office don't match. I will contact Dr. X to rectify this situation.
I believe that communication will help make Isabelle's experience at X school a positive one. She has had a wonderful relationship with school nurses and teachers in the past and I am hopeful that this will continue, allowing her to thrive and receive the support she needs at x school. Please let me know if I can help in any way.

Sincerely,
Angie

(Then the principal replied)

Angie,



Thank you for contacting Dr. X to confirmed the instructions related to Isabelle's medication. To clarify, the dosing on the bottle and the script are the same. The difference is in the timing described in your email (1 hour before lunch) and the script (30 minutes before lunch). (The nurse) has been giving Isabelle the dosage 30 minutes prior to lunch. When reviewing your email and confirming with (the nurse), the discrepancy was identified. Please confirm with (the nurse) the timing for the administration of the dosage. In consulting Isabelle's 504 plan in our system, no specific information was included for the medication administered in school.



We also want Isabelle's experience at x school to be a positive one. Thank you for communicating your concerns with our staff. Let's continue to keep the lines of communication open.

From: angie
Sent: Sunday, September 21, 2014 7:35 AM
Subject: Re: Isabelle
7:18 PM (22 hours ago)

(principal)

There are potential interactions with this medication and the antibiotic and iron containing supplements Isabelle currently takes, which is why the timing of the medication is part of the dosing information.
(The nurse) should have received a new order from Dr. X office today.
The medications change as her disease progress varies throughout the year; her 504 is probably not the best option for reviewing her medication information. I will be sure, however, to keep (the nurse) updated with any changes.
Again, thank you for your time in this matter, and please let me know of any further concerns.
Regards,
Angie

I can't tell-I may be super defensive about my daughters health needs, but I feel some insensitivity here. I tried really hard to not be snarky about my replies and consider where the school is coming from.

This all happened AFTER they forgot her meds the first week-Izz raised her hand to tell the teacher she needed to go take her meds and the teacher said "all hands down". At 7, Isabelle just put her hand down. I totally didn't make a big deal of it, I just sent a note saying Izz tried to tell her but couldn't, and that I talked to her about trying to get the teachers attention (she hates to).

I've only gotten replies from 4 people out of the 8 I emailed.

I am feeling slightly defeated.

Open house is this week-I will approach all of her teachers then.

 

[my little penguin]

Does she have a nurse pass /bathroom pass ?
I made DS a laminated card bright with his name on it
For the nurse .
He placed it on his desk to go to the nurses office without asking or did draw attn to himself. At that point he was using the nurses bathroom.
That way izzi could go to the nurse without directly disobeying her teacher

 

[Brian'sMom]

When my son was 10yrs old the teacher gave him a laminated card. He was allowed to leave it on the desk and also go without asking. But when they are young... sometimes they still don't want to do something that's different. The 'rules' would be discussed in class... I would tell him over and over that those rules don't apply to him and that he has a different rule. It's so hard when they are young. And your sweet Izzi is really young. Bless her heart.

 

[ProudMom]

As a middle school teacher and prior to my own kids being diagnosed I didn't understand the urgency and unpredictablilty of the disease. In fact, when I received a note that a child needed a year round no questions ask bathroom pass I found my self thinking kids at middle school should have control over their bowels by now. I honored the pass, had compassion and read info but until I lived it I didn't understand.
Speaking from a teachers perspective, it is important in your 504 meetings and in the 504 to stress the urgency and unpredictablilty of the disease. How it strikes out of nowhere. And if you attend a meeting and not all teachers can be present be sure you go ahead and send any extra info to the teachers that could be there. Also, it is better to go overboard and get in the what ifs then to wait til it happens (hospitalization, attendance issues..)
In our school we are expected to reply to all emails from parents within 2days. We as teachers should never be too busy to take care of our students needs no matter what time of year it is.