Migraine

Hi,
I apologize for the length but I need to set up the problem so I can get help. I am new here although I have been using the site for research for the past few weeks. I have been a life long migraine sufferer and unfortunately I have passed it along to all 4 of my children to various degrees. My youngest is 14yrs. old and in 8th grade. Last August saw an increase in her migraines to the point that she was either absent or going home from school 3-4X a week. We started seeing a pediatric neurologist who specializes in migraines in January (had to wait 6 weeks for the app't.) We tried Topomax but it did not work for her and the side effects were affecting her vision. She is now on Elavil, started at just 10mg, went to 15mg and is now on 20mg. It seems to work for a few weeks but then we need to bump up the dosage. We have another app't in 2 weeks and will discuss that issue.

My problem: In the beginning of the school year most of her teachers thought she was trying to avoid the harder work of 8th grade. I held a team meeting with the school and brought them information about children/teens with migraines as well as a note from her pediatrician. We discussed a few concession such as she can wear sunglasses in the school (the lights bother her), carry water and have a snack available, and the ability to go to the nurse's office for her medication when needed. Most of her teachers then understood but a few still thought it is "just a headache", what's the problem? She has been penalized for not turning in homework on time even though she was legally absent. By the way, most of her grades are in the 90's except for math which is not her strong suit but that is still an 85 average. On the day I had to pick her up because the pain was so bad she was crying on the phone I knew I had to ask for a 504 plan. Her science teacher did not let her go to the nurse even though she said she was dizzy and that she felt a migraine coming on. He didn't want her to miss class, he said. By the time she got to the nurse's office 30 minutes later and then had to wait another 20 minutes to get her medicine, it was too late. She was out of school for 2 days with that migraine.

I just had her intial 504 meeting yesterday, the plan is not written yet. We realize it is too late for this year (school is out in June) but we are setting it up for 9th grade high school next year. The school psychologist (they are in charge of 504 plans here) had no problem with the sunglasses being written in, snack and drink available at all times, and lights being turned off where she sits. Those are easy to do. He did say he would have to look into letting her sit out gym when she has a migraine with no penalty, staying inside if the sunlight is too strong, ability to miss assemblies and eat some place besides the cafeteria if phonophobia is occurring, no penalty for missed school work if she does not hand it in on time because of migraines, getting a teacher/tutor to teach her what she misses when absent (thanks to the site member who got that for her child and posted it), time to make up tests/quizzes if it is on a subject taught while she is out and ability to stop in the nurse's office between classes to get her medication. Right now she needs to go to class, get a pass from the teacher, go to the nurse and wait for her medicine then go back to class-this can take up to 30-40 minutes if the nurse is busy. Between classes the office is quiet since you cannot stop in without a pass. I pointed out better for her to miss 5 minutes of class in the beginning of the period then 30 minutes later. A teacher present at the meeting agreed with me but the psychologist is not so sure. I don't think I am asking for much.

My question: I have tried to find a listing of accommodations others have had written into their 504 plans but have been unsuccessful. Maybe I am not looking at the right threads. I am unsure of what else to ask for that will make Amanda's school life easier to handle when her migraines flare up. The school district has never written a 504 plan for a child with migraines, this is a first for them and me. I need to get this done right the first time because it is hard to get a 504 plan changed in the middle of the year. Can you help me?

Thanks,
Sue

Hi Sue, So sorry to hear about your child having such trouble. I also suffer from migraines and passed them on to my 11 year old son. My daughter is 24 and was lucky, she escaped them. My son is not on a 504 but because he has a learning disbility, he is on an IEP. I recently asked about the 504 and was told that it offers the same accomodations that his IEP does. I found out through the great people on this site that what I was told is not so true. He has missed more than 45 days this year and we plan to homeschool him next year. One thing I have heard about 504 plans is that you could have another student take notes when your daughter is absent. We were told that when my son went to the clinic at school they would turn off the lights for him and allow him to lay down for a while. Although it's a nice thought, I need total silence when I have an attack and people coming in and out is not going to do the trick for my son either. There are so many great people on here who can help you, you came to the right place. Best of luck to you and your children.

Try your county office of education. They usually control the county's schools special needs students and have more resources available. (School districts hate it when the county gets involved.)

Hello, Books4Ever, welcome to the forum.

I'm glad you are jumping right in and asking your questions. Our forum members will have lots of experiences to share, I know.

Sue,

I understand what you and your daughter are going through. I started having migraines everyday in 7th grade. I am now in 10th grade and i have been doing a lot better. I had a 504 plan put in place at the beginning of this year to prevent any problems. This is what my 504 plan includes:

• Preferential Seating (by the air purifier and away from strong perfume and smoke smells)
• Extra time if needed on assignments, tests, and projects if I am unable to complete them on time due to a migraine.
• Frequent Absences – unlimited migraine-related absences without a doctors excuse and without the fear of being forced out of school
• Carrying medication with me instead of leaving it in the nurse’s office
• Ability to leave class to take medication without waiting for the teacher to finish teaching.
• Ability to just call my mom if I need to go home without having to wait and go through procedure (ex. Taking temp., laying down) at nurse’s office
• Arranging schedule to fit core classes as close together as possible if necessary
• Contract gym because exercise can bring on a migraine in the right environment (see doctor’s note)
• Eating lunch in an alternative place other than the cafeteria because of the noise level

I think that the things you have asked for are not out of line. Keep trying. Good luck.

Hi Sue

I'm sorry to hear about your daughter. I have been having a horrible time with my son's school this year. He is in 9th grade. You are right, you want to get your plan in place correctly the first time to avoid a bunch of problems later.

We do have a 504 plan in place, but it wasn't a very good plan when he started having more and more migraines. We really need to have a good one as a sample on here someplace. I wonder if we could get someone to put something together for us?


I found an old post with this info from our 504 plan:

Modifications are:

For hydration purposes Andrew needs to carry a water bottle throughout the day.

Extended time for assignments, 24 hours for assignments, tests and projects. Migraine may come after school time, prohibiting completion of that days work/preparation. Parents will notify school by 8am, notice will be given to teachers (even if student is in attendance that day.)

Student will have a homework/note partner for work missed during absent days.

Student will have access to online homework and email.

When student is absent parent will call school, alternate schedule will go into effect. Alt schedule: 3:30-4:30 (or 5:00); absence from this will count as an absent day (if total of these days surpasses 15, doctor's note each day will then be required.

Extended absences to travel for treatment will be treated as an educational trip. All rules for that are in place i.e. form.

Student will keep supply of medication in office, will be allowed to leave class for office at onset of symptoms. Student may be allowed to rest in nurse's office upon need.

Student should be allowed to sit near an open window or ventilation source when symptoms occur.

As I mentioned this plan was not really good enough when things got bad. First of all, my school did not follow the plan. They never got a homework person for him because he started out the year feeling fairly well. For several months he didn't need it, but when he did need it nothing happened. When I met with the school they wanted my son to go to his teachers at the end of a day if he came in late and gather the work.

I didn't like that at all. First of all, even though he is in school doesn't mean he feels well. If he misses 3 classes he has to run to 3 teacher's rooms. Some of them are in the office or already gone. I insisted that they send the work to the office and he would pick it up at the end of the day.

Another problem with my plan was that it allowed him an extra 24 hours. What if he has migraines everyday for a week. A few teachers would take points off if he didn't meet the 24 hours.

If I were you, I would make sure the plan is not only written, but actually working even when things are good and you don't need it. That was a big mistake I made. We didn't have a 504 plan or any problems in 8th grade, but it all depends on the teachers you are dealing with.

Here is a link to a website run by an advocate. She has a sample plan on there for IBD, but you should read it for ideas and also wording. 504 Link If you need any advice on your 504, you should email this advocate. She has been very helpful to me, and best of all it is free. She is an attorney.

Michelle gave you some great advice too. My school told us that it is illegal for kids to carry any medication with them except the asthma inhaler. My son was not allowed to carry his migraine meds.

I think there are more posts in here with accomodations. You might want to read through some of those for some more ideas.

Let me know if I can provide anymore information for you.
Good Luck

Jean Ann

Originally posted by Hoopsky:
Try your county office of education. They usually control the county's schools special needs students and have more resources available. (School districts hate it when the county gets involved.)

Hi Hoopsky,
In New York there is no county school office. We have regional offices but they tend to stay out of each districts business unless they are mediating a decision, then they get involved. As a parent you are on your own unless you have friends who have gone through something similar or can get in touch with an advocate from a district that has one. After the regional office the next higher up is the State Education Department and their decisions can take a year or more.

Thanks for the suggestion though, I am sure it will help others.

Sue

Originally posted by michelle2958:
Sue,

I understand what you and your daughter are going through. I started having migraines everyday in 7th grade. I am now in 10th grade and i have been doing a lot better. I had a 504 plan put in place at the beginning of this year to prevent any problems. This is what my 504 plan includes:

• Preferential Seating (by the air purifier and away from strong perfume and smoke smells)
• Extra time if needed on assignments, tests, and projects if I am unable to complete them on time due to a migraine.
• Frequent Absences – unlimited migraine-related absences without a doctors excuse and without the fear of being forced out of school
• Carrying medication with me instead of leaving it in the nurse’s office
• Ability to leave class to take medication without waiting for the teacher to finish teaching.
• Ability to just call my mom if I need to go home without having to wait and go through procedure (ex. Taking temp., laying down) at nurse’s office
• Arranging schedule to fit core classes as close together as possible if necessary
• Contract gym because exercise can bring on a migraine in the right environment (see doctor’s note)
• Eating lunch in an alternative place other than the cafeteria because of the noise level

I think that the things you have asked for are not out of line. Keep trying. Good luck.

Hi Michelle,
Thanks for all your suggestions. I did forget to ask about the frequent absences excuse. Our school has an 18 day limit even if they are excused absences so I will definitely ask about that. I am glad that you have the gym one, they are trying to tell me that I may not get that one but I will fight for that. New York law says that students are not allowed to carry medication let alone over-the-counter medication with them. I do not want to have to resort to her carrying it without anyone knowing. I will try for the OTC medication though since you can carry asthma inhalers with you. I think it's the same principal-preventing/stopping an attack that would have a achild miss school.

Again,thanks for listing your plan it will help me when we meet with administration again.

Sue

Originally posted by AndrewsMom:
Hi Sue

I'm sorry to hear about your daughter. I have been having a horrible time with my son's school this year. He is in 9th grade. You are right, you want to get your plan in place correctly the first time to avoid a bunch of problems later.

We do have a 504 plan in place, but it wasn't a very good plan when he started having more and more migraines. We really need to have a good one as a sample on here someplace. I wonder if we could get someone to put something together for us?


I found an old post with this info from our 504 plan:

Modifications are:

For hydration purposes Andrew needs to carry a water bottle throughout the day.

Extended time for assignments, 24 hours for assignments, tests and projects. Migraine may come after school time, prohibiting completion of that days work/preparation. Parents will notify school by 8am, notice will be given to teachers (even if student is in attendance that day.)

Student will have a homework/note partner for work missed during absent days.

Student will have access to online homework and email.

When student is absent parent will call school, alternate schedule will go into effect. Alt schedule: 3:30-4:30 (or 5:00); absence from this will count as an absent day (if total of these days surpasses 15, doctor's note each day will then be required.

Extended absences to travel for treatment will be treated as an educational trip. All rules for that are in place i.e. form.

Student will keep supply of medication in office, will be allowed to leave class for office at onset of symptoms. Student may be allowed to rest in nurse's office upon need.

Student should be allowed to sit near an open window or ventilation source when symptoms occur.

As I mentioned this plan was not really good enough when things got bad. First of all, my school did not follow the plan. They never got a homework person for him because he started out the year feeling fairly well. For several months he didn't need it, but when he did need it nothing happened. When I met with the school they wanted my son to go to his teachers at the end of a day if he came in late and gather the work.

I didn't like that at all. First of all, even though he is in school doesn't mean he feels well. If he misses 3 classes he has to run to 3 teacher's rooms. Some of them are in the office or already gone. I insisted that they send the work to the office and he would pick it up at the end of the day.

Another problem with my plan was that it allowed him an extra 24 hours. What if he has migraines everyday for a week. A few teachers would take points off if he didn't meet the 24 hours.

If I were you, I would make sure the plan is not only written, but actually working even when things are good and you don't need it. That was a big mistake I made. We didn't have a 504 plan or any problems in 8th grade, but it all depends on the teachers you are dealing with.

Here is a link to a website run by an advocate. She has a sample plan on there for IBD, but you should read it for ideas and also wording. 504 Link If you need any advice on your 504, you should email this advocate. She has been very helpful to me, and best of all it is free. She is an attorney.

Michelle gave you some great advice too. My school told us that it is illegal for kids to carry any medication with them except the asthma inhaler. My son was not allowed to carry his migraine meds.

I think there are more posts in here with accomodations. You might want to read through some of those for some more ideas.

Let me know if I can provide anymore information for you.
Good Luck

Jean Ann

Hi Jean Ann,
I did read the old psot and that is how I got the idea for a tutor for Amanda for when she misses work. Two weeks ago, she was out for 2 days when her math teacher taught a new concept. SHe told Amanda to go to the notes on the website and self teach herself what she missed. She did this again yesterday. How can you expect a student to self-teach math? I just don't get it!

I did ask for the 24 hour extra time plan but I see now how that may not work. I will have them reword it so that it will cover what happens for multiple days of migraines. They think I am just trying to get her extra time for all work. I made it clear that if she had an assignment for 2 weeks and waited until the last day and got a migraine and was unable to complete it then she would have to accept the consequences but I do want something in place for those assignments that are given on Monday and due Tuesday. I know this happens a lot in High School since I have 3 other children before Amanda. As the saying goes, "Been There, Done That." I know that about 80% of the HS teachers will accommodate Amanda but there is that 20% that will not accept any excuse and will give a Zero for late/missing work. Amanda puts enough pressure on herself to succeed that I don't need the teachers making the situation worse.

What I am hoping will hlep is that I know most of the teachers and administrators in the school district. The psychologist who is handling Amanda's case is new this year and does not know me and the value we place on education. Our district has a lot of parents who will use any excuse to get their kids out of school work. I just want them to give her break when she is in a migraine cycle.

I am sure all of you still run into the "it's just a headache" idea. This psychologist is trying to understand but he looked at me like I had 3 heads when I said sound hurts and she needed a quiet place to eat and the ability to miss assemblies if needed.

Thanks to all for the suggestions and keep them coming especaiily what works and doesn't. I am planning on writing to the psychologist today to recap the meeting. I have a feeling that he focused on just a few items and may have forgotten some of the other items we discussed. Like the extra time for homework but I also asked that she not be tested on something that was taught while she was out until she it tutored on it. That is something the teachers will do and many times results in poor grades since your child wasn't there to learn it and was in too much pain to get the notes from a friend.

I will keep everyone posted and once Amanda's 504 is in place I will post it for others. I just hope this goes smoothly and I don't have to fight. This is a bad time of year for my migraines-got one in 15 minutes yesterday and still going strong-weather and pollen related.

Thanks,
Sue

Hi Sue, I can't help you much on the 504 end of things as I never had one in place in high school - I wasn't diagnosed until college - but I did want to make a suggestion. If you want to try to help the psychologist understand migraine disease better, perhaps you could show him/her this letter?

Understanding Migraine Disease and Migraineurs

There's more good information here, too: Migraine and Headache Education for Those Who "Don't Get It"

Hope this helps. Best of luck to both you and Amanda.

welcome sue,
where in N.Y. are you? my suggestion is that if you have a hard time getting the school to willingly give you what your daughter needs in a 504 that you consult a lawyer....sometimes just a letter from a lawyer will help you get what you need.

Originally posted by julies517:
welcome sue,
where in N.Y. are you? my suggestion is that if you have a hard time getting the school to willingly give you what your daughter needs in a 504 that you consult a lawyer....sometimes just a letter from a lawyer will help you get what you need.

Hi,
I am on the Westchester/Putnam County border. If you live near here any suggestions on a good migraine doctor for me? We may also be switching my daughters, we will see after the visit next week.
Our district has lawyer happy parents, at last count we had 12 lawsuits pending, so you tend to get put on that "list" if you even threaten them with a lawyer. I will give them until after the next official meeting before I go that route. I won't say that retribution happens but let's just say it makes it harder to get anything from them including the best placement for your child if you go that route.

Thanks for the suggestion I will definitely keep it in mind.
Sue

Sue,
You have been given great information by very well informed people. I won't try to add to that.

Perhaps in consulting a lawyer he/she could help educate you in your rights in your state that will help you be better informed in dealing with the school. You could save bringing them in unless the school does not cooperate at all.

Take care and good luck.

Cindy

hi sue,
i'm on the other side of the bridge in Rockland. Dr. Jay Lombard is good, but i'm sure there are others on your side that are good, usually we're going to westchester for the "better" doctors lol. I hope you'll get what you need from your district, good luck!

Hi Sue,

I felt like I had just won the lottery when I stumbled upon this awesome site and your post while searching for some examples of 504 plans and accommodations for my upcoming meeting at my daughters school. Your post really hit home and the replies had some wonderful advice.

My heart goes out to you and your daughter because I am going through what seems like the same situation with my daughter. Like your daughter, my daughter Allison is 14 and in the eighth grade and has inherited her migraines from me. Hers got progressively worse over the years and we finally reached the point that she was referred to a pediatric neurologist the end of her 6th grade year. She was put on Topamax in hope that it would totally prevent them. It seemed to work for a while but this has been a really bad year for her. After her Topamax dose reached 75mgs. a night with little results I told the Neurologist it was time to try something different because I did not want her taking a higher dose of Topamax. The new plan was to add Propranolol and slowly increase that while decreasing the Topamax. Along with that we have tried the chiropractor and physical therapy with no positive results to speak of.

My daughter will be starting High School next year and our High Schools are on block scheduling which means they have four classes a semester and each class 80 minutes long. When you miss a day it’s like missing three. With that in mind and after an altercation with the Middle School Attendance Clerk two weeks ago I decided to get a 504 in place before High School. It does not seem as if a lot of schools deal with 504 accommodations due to chronic, debilitating migraine headaches and I want to go to my meeting next week with all of my ducks in a row so I am trying to gather any information I can.

My main concern is that they say it is not impacting her education since she has managed to keep her grades to A’s and B’s , but High School is a whole different ball game. It’s hard enough adjusting without the added pressure of missing three to four days a week of school. Yesterday was the first time Allison went to school the entire day in over month. The main thing I’m looking for is that she not be discriminated against for her absences and have ample time to make up work. I also want something in her 504 that will excuse her and allow her to turn in homework late if she comes home from school with a migraine and goes to bed. I feel it’s more important to try to get to school the next day then worrying about getting homework done.

That’s suppose to be one of the advantages of block scheduling is to have class time to get work done instead of having homework. (My son is a Junior and has assigned homework almost every night.) Her teachers this year have been very understanding. I let them know at the beginning of the school year what her situation was and I try to e-mail them occasionally with updates, especially when she is having a rough spell and is missing a lot of school. Last week I e-mailed them to thank them for not making her feel uncomfortable by their actions or attitude toward her when she returns from being absent. Every one of them responded showing their concern and support. I have not had to ask them that very important question I often ask when comments are made….”Have you ever had a migraine headache?”

I am so sorry, I am rambling on and on.

I did find a site that has an article called “Left Out and Left Behind? Missing School Advocacy Kit “.

The site is http://www.healthy-kids.info (It starts on page 12.)

If I can find anything else on 504 accommodations pertaining to our situation I will be sure to pass it on.

You are a wonderful advocate for your daughter and I wish you both well.


Laura