Migraine

just a little update, we have an appointment on june 27th with the attorney. my friend sent me this link http://concordspedpac.org/Section504.html

it is from new hampshire but it is the only place where i specifically found migraines listed under the 504.

I have a 15 yr old son who has lost a huge amount of school from his migraines. I posted in the Introduction section (since I am a new poster, long time reader of these forums) about a workable (for us) solution this past semester. It is a nationwide, accredited, free charter school called Connections Academy. Recommended by my son's Guidance Counseler, you can check them out at www.connectionsacademy.com. There are many charter school out there for kids with attendance problems, this is the only one I have experience with. See my other post for more info.

Cynthia

Hi,

I am currently working on my masters in education. I got my first migraine at 12, and they became chronic at age 17, I am now 26.

I was in a private boarding school when the headaches becanme chronic- the school was great though. The teachers worked with me. In college and even at the Masters level, I have a disability qualification which basically states that I am allowed to make up work missed due to migraine, extra time, and tests in a quiet environment. It helps a great deal. If and when you are looking into colleges, or even high school- definitely see if you can get a 504/disability qualification.

I think you are doing the right thing by getting an advocate. Migraines are classified as a disability under the ADA, so the school should provide services. I hope everything goes well.

I would really love to work with kids who have this kind of disability, who may need some accomadations due to something like this.

Pain free daysm
sconesail

Hi, sconesail. Welcome to the forum!

Jean Ann & Julie,

How are both of you and your children doing now that school is about to start back? Please both of you give me an update on how Andrew and Chloe are doing and what their schools' have worked out with you.

In Alabama, we started back last Thursday. I had a meeting with Chuckie's school on Friday. The principal, one assistant principal, counselor, nurse, three of his teachers, and two PE coaches were present. I was really impressed with his school and the response I got. The meeting was at the request of the principal after I had contacted them a month and half ago when we got Chuckie's diagnosis of hemiplegic migraines.

They met with me for about 40 minutes. I had a copy of a letter from his doctor, and the following info from Teri: "RE: Understanding Migraine Disease and Migraineurs","Anatomy of a Migraine" and "Hemiplegic Migraine - The Basics". I asked them all to read everything on their own time so they would know what to look out for.

The principal said we could not put the 504 plan in place just yet. She said that even though Chuckie has been dealing with this for over 2 1/2 yrs, he has managed to stay on the A-B honor roll. She said it was designed for when a child started suffering academically.

She said as long as everyone was aware of the situation and worked with us, there was no need for it. I am going to give it a try. I have asked for them to change the bus route, so he gets home earlier. The first day he was on it an hour and a half the second day 45 minutes. Last year, two migraines were triggered on the bus ride home. If I don't get cooperation with this, I will definitely check with an advocate as to what our rights are.

I really apprciate all of your posts above. It gave me such valuable information to be prepared for my meeting with his school.

Best wishes to you all.

Yvonne-MigraineMom

Hi Yvonne

Andrew will be starting back to school shortly after Labor Day. I'm sorry to say that he doesn't seem to be any better now with his migraines and New Daily Persistent Headache than he was at the end of last school year. I will be meeting with the school psychologist this month to set up the 504 plan.

I'll be honest. I am starting to get stressed about school already. I know we will have the plan in place, but I wonder how we will manage school with the continued high frequency of headaches. I wish the summer could go on a bit longer.

Andrew has always been on the honor roll. His migraines became disabling in November of 2006. The 504 plan is to accomodate children with disabilities. I don't think that grades have anything to do with it?

We didn't pursue one last year though. The school discouraged it and they were doing everything we wanted so I didn't feel it was necessary. After the fact, I wished we had one in place. I think it would have been helpful.

As long as the school is accomodating you, you may not need one. When Chuckie gets older, you may want one anyhow.

How is Chuckie feeling? Does he take any preventatives? When Andrew started preventatives about 4 years ago (age 10), he used periactin with no side effects. It worked well until November. Andrew is now taking elavil, migrelief, and petadolex.

Good luck with school this year. Please keep in contact and let us know how Chuckie is feeling, and how things workout with school.

Take Care
Jean Ann

Jean Ann and Yvonne,

Y'all's schools not wanting to do 504s is a cop-out on their parts. Having a good 504 in place BEFORE problems start is a good way to avoid problems. PLEASE, listen to someone who's been there, with and without written plans in place for her children.

I found concordspedpac.org/Section504.html to be helpful in explaining the differences between a 505 and an IEP. This site also has good info on how to write a 504 plan.

I've seen too many teachers, both my daughters' teachers and teachers at the middle school where I worked, not teach to their students' disabilities, simply because they "didn't know about the disabilities."

Rebecca

While I'm glad that the staff seems committed to working with Chuckie this year, I think the whole bit about not needing the 504 plan unless he started to suffer academically is a steaming pile of dooky (to put it nicely). I can see no reason why it shouldn't be in place even though he's doing okay right now. To me, it's much like health insurance; You want it in place beforehand, lest something sudden should happen. The 504 plan acknowledges that your son has needs and accommodations, so that everyone will be aware of the plan in the event that the accommodations are needed. It can take a lot of wait time to get a 504 plan in place from start to finish. Should he have problems after a month or so of school, it could take until Christmas or better to have a plan up and running, and in the meantime, any accommodations made aren't mandated, but out of the goodness of the accommodator's heart. I'd push for having a plan in place as soon as possible as a preventative measure.

I'm glad you're meeting with an advocate to discuss your rights as a parent requesting the plan in a timely manner. I would ask about this. Clearly, the staff is acknowledging that there is a basis for a 504 plan. Now they should follow through. It sounds to me like all they are doing is stalling, because of the paperwork involved. Don't let them put you off.

quote:

Originally posted by MigraineMom:


The principal said we could not put the 504 plan in place just yet. She said that even though Chuckie has been dealing with this for over 2 1/2 yrs, he has managed to stay on the A-B honor roll. She said it was designed for when a child started suffering academically.

She said as long as everyone was aware of the situation and worked with us, there was no need for it. I am going to give it a try. I have asked for them to change the bus route, so he gets home earlier. The first day he was on it an hour and a half the second day 45 minutes. Last year, two migraines were triggered on the bus ride home. If I don't get cooperation with this, I will definitely check with an advocate as to what our rights are.

Yvonne-MigraineMom

I totally agree with droolie and Rebecca.

Very big of them to be so agreeable, but get off their butts and get the 504 + IEP going. For goodness sakes, let's get this in gear BEFORE his grades, self esteem and everything else go to pot.


Boy, did that tick me off......

But good job on your part Yvonne for starting out the year early and getting all the "heads" together. Now let's bang them....

Everyone,

Thanks so much for your advice.

Rebecca, thanks for the link for the 504 plan. I still have a lot to learn about all of this. It's nice to hear from people who have been through it and can tell you what to expect.

I was happy with the response from the school until I read everyone's posts. I agree it is a lot of paperwork and the school probably just doesn't want to fool with it.

But, I don't want to wait until Chuckie has another 8 or 11 day episode and then be fighting with his school. They already pointed out that I need to get dr excuses cause I'm only allowed 8 parent notes. (Even though the doctor letter to get the 504 plan stated that he will probably miss several days at a time due to his hemiplegic migraines).

The school did work with me on the bus situation. They are going to allow him to stay in the air conditioned school until it's ready to leave. Then they changed the route so he is the 3rd drop off. He was home today by 2:50. Twenty minutes is much better than 45 to an hour and a half.

They are also allowing him to carry a frozen water bottle and wear his sunglasses-both against school rules.

I'm hoping that the HA specialist will increase his new medicine-Lyrica or try something else. He's only been on it a month and a half but, he is having a lot of breakthrough headaches with pain in his right eye. He has not had a bad hemiplegic episode since on it though. I can live with him having headaches with a 5 or 6 pain scale over the scary effects of the hemis anyday.

Thanks again for all the support. I'm sending my well wishes to all of you. I wish there was some way we could all meet in person. But, here's a since we can't.

Yvonne-MigraineMom

Jean Ann,

I wanted to say good luck with the counselor. I hope everything runs smoothly and you get the 504 plan in place immediately.

I'm sorry to hear Andrew isn't much better than last year and has developed daily persistent headaches. I hope his specialists can get it under control. I know how horrible it is to watch your son suffer.

I feel guilty that Chuckie inherited all of this from me. I beg God to make my migraines worse and to spare him. Mine aren't that bad, I'm not even on a preventative. I maybe have a bad one about twice a year.

Chuckie has been on Neurotin, Topamax, and Inderol and now the Lyrica for preventatives. He took Maxalt as an abortive before we got the dx of hemiplegic. It never aborted the attack but, seemed to prolong it. He would get some relief for about an hour but, then it would hit again with a vengence. Then last for days instead of stopping.

Okay, I better end here or I won't stop either. I have so much I could talk about when it comes to Chuckie's migraines. I try not to bore friends with it. My Mom loves him and is so concerned so I can always talk to her. But, she doesn't have the best of health and I don't like to add stress to her. So, this web community has been such a blessing in my life. Thanks for letting me ask, vent and share.

Yvonne-MigraineMom

Hi Yvonne

I'm glad the school worked out a shorter bus trip for Chuckie. It sounds a lot better than the longer ride he was on.

Glad to hear he hasn't had anymore hemis recently. That must be a relief.

I could go on and on about Andrew's migraines as well. I don't know anyone who understands all the issues surrounding this. This forum has been wonderful for information and support.

If you ask for a 504 plan they have to give it you. Migraine is a disability. Maybe you need an advocate to help? The school should be able to guide you to the advocate even though they won't want you to use them. Or you can call a civil rights attorney and ask them for guidance.

If you know anyone who works in special education, they can be a valuable asset to discuss 504 plans with. That's how I got my start on gathering information.

There is a way around the Doctor's note requirement. Last year the school started threatening my son after he missed the allotted number of days. I called them about it and they never made us get a doctor's note. (He must have missed 30+ days of school before we put him on homebound instruction.) I plan to have that as part of my 504. It's ridiculous to get a doctor's note regularly when they know he has an illness and will most likely exceed the allotted number of days.

Keep us up to date. If I find any other valuable information, I will be sure to share it with you.

Take Care

Jean Ann

Okay, one more medicine. He tried periactin but couldn't tolerate it. It put him in a severe depression. By day 3, he hated himself, me, everyone, everything, life in general. We called the doctor and he said to stop immediately. Within, 24 hours his attitude improved and by day 2 he was back to his old self-very loving.

Hubby says he will want to be called something else besides Chuckie anyday now. He just turned 10. Some of his friends call him Chuck already. Hubby goes by Chuck too so not sure what he will want to be called-Charles or Anthony or Charlie or Tony.

Jean Ann,

Thanks again for the info. I will check into an advocate.

I completely agree about the doctor excuses. His HA specialist doesn't want to see him every time he has a migraine-plus there is not much they can do for him until he reaches the 72 hours mark or if it is the worse pain he has ever had.

And then, family doctor and neurologists have told me in the past to take him to the ER. I'm not sure about the new HA specialist but will probably be the same way.

Yvonne

Jean Ann & Yvonne,

Y'all may want to print out Teri's "letter of introduction" about migraines and severe headaches to put in y'all's sons' files and to give to their teachers.

Also, I don't know how big the towns y'all live in are, but there may be advocacy groups in y'all's towns, or nearby, for students with disabilities. These groups are INDEPENDENT of the school systems and can be a real help for students and their families.

I guess I don't need to tell y'all to document EVERYTHING y'all do with the schools. They can be such pains in the endus rearii!

Now, push for those 504s!!

"Mama Rebecca"