School, 504, enzymes?

[sdavis227]

So we decided to NOT do an IEP or 504 this year for Parker when he started Kindergarten. I kind of came to the conclusion of not pushing for it because the teacher, nurse and I had a sit down talk about all his stuff before school and they seemed like they would be overly cautious with him so I wasn't too worried.

Now I am wondering if we should but not sure exactly how to go about it.

My first issue is with enzymes. I see the teacher send him to the nurses office to take his enzymes BEFORE recess. Granted recess is only about 30 minutes long but they don't eat their snack until they come back in. I know that enzymes are supposed to work for an hour (at least that is what I am remembering) but I have already told her once (when I saw the same thing) that I would prefer him eat right after he took his enzymes. I'm not sure why this is bugging me so and please tell me if I'm out of line!

We had another instance where there was a 5th grader helping out in her classroom. I had been talking to the kiddo about a cough that he had before the teacher grabbed him. He said he had asthma but that his inhaler wasn't helping at the time (he sounded sick to me). Then when the teacher came and asked him how he was he said "good but I have a bad cough" and her response, as she was walking him into my child's classroom was "yeah, I think it's going around". Now, I have no idea what he was doing in the classroom, if he was near my son or not. And looking back I probably should have said something.

I guess I just don't want to be looked at as an overbearing parent and have my children treated differently because they have extra needs. Do you think this warrants me to push for a 504? Is there a way I can go about it so that I don't offend the teacher?

Thanks in advance

 

[Ratatosk]

At the very least, I would send a letter to the teacher and copy it to the principal and school nurse (if there is one) using the letter to teachers from Lisa Greene's site. http://www.happyheartfamilies.com/SchoolIssues.html Also include the CFRI document regarding CF and School and the info on CFF in the Classroom for reference material.

We tailored the letter to the teacher for DS's needs, which the school ended up using as a guide for DS' 504. Primarily it was for the enzyme issue -- they also tried to suggest giving DS his enzymes before recess; however, with DS' past obstructions and digestive issues, it wasn't something we wanted to mess with. Also the germ issue was a biggy. In the midst of the a nasty flu season where the vaccine didn't protect against influenza A it was nice to know that our school was enforcing the sick policy. Also this year there's a younger student in DS' school with CF which needed to be addressed.

DS' does have an IEP, but it was so he can receive speech therapy services.

As for worrying about offending the teacher, using the letter and explaining that "just a cold/cough" or something that's just going around, can have more serious repercussions for your child. She just isn't informed about how dire that can be for someone wcf.

 

[Printer]

Enzymes are to be taken AT FIRST BITE. Not up to an hour later.

Bill

 

[Gammaw]

I have a CFer in 2nd grade. He's been in the same school since pre-school. I haven't yet opted for a 504. What I've done is write a letter giving background on CF, explaining in a fair amount of detail about the lung (infection) mechanics and issues, as well as the digestive ones (needing enzymes, extra food at snacktime, and a Boost at the days end). I've found that those who weren't following along well, didn't fully understand until I wrote them a letter, which I keep for revision and handout to each new teacher. Once I explained things in detail they understood the importance of complying with these issues and were extra careful - and thankful that I explained it all. Detail helps them understand, and understanding increases compliance. As far as the infection issues (chasing children out with any coughs or colds) I found that if I simply suggested I could pick my child up if there was any hesitance to exclude another child, they became much more careful about excluding the other child! I have only one occasion where the teacher opted to let me know so I could remove my CFer instead. I felt that my approach (just notify me if there is a potentially sick child in class so I can pick up my child) was perceived as less difficult to comply with and therefore they were more likely to comply. I hope this helps some!

 

[TreasureGoddess]

I second Bill's comment that the enzymes MUST be taken WITH the first bite of food, NOT up to 30 mins later....leads to BAD G.I. issues later, let me tell you. This is a serious and should be addressed. It can be as simple as sending an email (so it's in writing) to the nurse, teacher and copy the counselor & principal. Make sure you speak with the teacher and the nurse to point out that the meds MUST be given WITH food. If you're not wanting to have the child carry pills with him/her to the cafeteria, at least take the pills right as he/she leaves the classroom to walk to the cafeteria. It still causes issues as they have to wait in line, get their food, etc and that's a lot of time elapsed.

Hang in there and STAND UP for what you and your child needs. If you do it now, you will avoid issues later, with the school thinking they're doing what's necessary for your child.

 

[Aboveallislove]

I'd just add in discussing the enzymes, you might want to make the doctor's the bad guys, by saying, "I wasn't sure if it was a concern about the enzymes coming 30 minutes before meals, but the doctor told me it was very important that she take the enzyme immediately before the first bite and that the delay is dangerous. Not in the short-term, but in the long term it can cause a special kind of obstruction called DIOS which can lead to hospitalization and possibly surgery." In other words, you were trying to be "low key" but the doctors told you you had to make them change! ;-)

 

[sdavis227]

Thank you everyone. I ended up emailing and speaking with the teacher. We will be going forward with a 504 and I'm happy about that.

I really appreciate being able to come here with these sorts of questions and getting such quick answers!

 

[mkloeti]

Hi there. I think you for sure should get a 504. My daughter has had one since kindergarten. They are now trying to get away from them here in my state, but if one is in place they have to update and follow it. We had a battle royale to get it where my daughter could carry her enzymes on her person or in her lunch box. There is nothing overbearing about you wanting the best results for your child's health. I can tell you that my daughters school wanted the office to pass out the enzymes and they too had a short lunch period. By the time she got there and back to the end of the lunch line just for milk and then to the class room she barely had 10 minutes to eat...... then they took microwaves out of the class rooms so that was limiting. Then they made the school peanut free!!!! Now I feel for those with peanut allergies but there was no one in her class. I was furious. they were not only limiting the time she had to intake calories, but severely limiting what she would eat as PB was a staple or left overs she could warm. Getting my child to eat a school lunch, yeah right! I contacted a lawyer in Texas who is an advocate for CF LAW. She happens to have CF as well. She gave me the laws and the numbers and explained that federal law trumps state law every time. I went back to the school and told them they could deal with this one of two ways.... the easy way or the hard way but the end result would be the same for my daughter. She would be have her enzymes with her. I send enough for a day, everyday that way they can't say that even if a child did get them and take them it would be harmful, cause if won't be. They tried to procrastinate and I finally sent them with ehr and called the school and said that she has them with her if there was a problem they could call the lawyer The Nurse a the the school was worried about how she would document if she had or hadn't taken them and how she would let me know that. I am an RN so I told her that was her job to figure out and to deal with, I would know if she hadn't taken them because the next day she would have stomach issues. I hope that you can get it straight for your child and I think you are doing the right thing. Don't let them bully you over them trying to figure out how to do their jobs...... that is their job. Your job is to be an advocate for your child and let the school system know up front that you don't play. Good luck to you.