I know there are some parent of children with Dys, so I am putting this here. I really need some advice and support.

My son went back to school just this week on a modified schedule of only 3.5 hours. He made 2 days straight, but had to stay home yesterday due to feeling really crappy. Today, he was feeling better and went in. There was testing today, so I told him to pace himself. I get a call right before I am to pick him up. It is from the nurse. She has him in the health suite and she wants me to come down.

Now, keep in mind, we sat down to a 504/IEP plan just two weeks ago. Today, which is only his 3rd day there, NO ONE did what I asked them to do.

When he became symptomatic in class today, he let them know he wasn't feeling well. I had asked them to let him immediately lay on the floor. Instead, they walked him six hallways down to the nurse's office and left him there. In there, they began to pepper him with questions, like 'why are you here,' and "where is your pass." Then they proceeded to walk him back to his class!! Halfway there, he drops his books and water bottle, and they end up holding him up, while someone went to get a wheelchair. They wheel him back to the nurse's office, but still don't let him lay down.

I get called to come up there, to meet him crying with hot, flushed cheeks, still sitting, and a nurse who begins to tell me that she wants more doctor documentation, that she has had other children with OI, but since he didn't just drop, she doesn't know what he has, and if he is stressed about testing, she needs to know that. On it goes, with this is middle school and she has so many other students who are faking it. Also, she says she took his bp (only once!) and it was fine, even a little high.

I won't go into anymore detail, but it took everything in me to remain calm and get my child out of there. We both came home and cried. Now my son doesn't even know what to believe. He asked me, maybe the test was wrong. This is while he is laying on the couch, trying to recover.

I need some help. The nurse wants to talk to the doctor, but I am very wary of letting schools talk directly to our docs. I like things to be in writing. Also, should I have someone come to the school to explain POTS (I don't even know how to do that)? I handed out definition/symptom sheets that specifically said, no two children are the same. I don't want to get mean-spirited, but I am quite angry over this whole thing.

Can anyone give me some advice on what to do?

Thanks,

Judi

You did the right thing by staying calm and thinking of your son's health first. I don't know if I would have had the strength if I was in that situation. I turn into the biggest mama bear when it comes to anything with my kids, even though they are all grown now.

Does your son have an advocate for his 504/IEP? If so, I would recommend another immediate meeting with the advocate, the nurse, the teachers, and the principal. And whoever else. They need to understand that it doesn't matter what the nurse wants - they did not follow the 505/IEP and that is the bottom line.

And tell that nurse that students who are 'faking it' don't have 504/IEP's and modified schedules. If she chooses to become educated, she can do this on her time on the internet just like we do. Until then, she is required to follow the 504/IEP.

Regarding your son questioning the test results, talk with him about the amount of education that the dr.'s who diagnosed him had gone through. This school nurse has not had the medical education (in general) and definitely not within the dysautonomia field.

And keep fighting for your son's best interest. You are so strong to have gotten as far as you have with the diagnosis, 504/IEP, etc.

BEST OF LUCK

ARGH!!!

I would put "specific instructions" in writing as to what to do when your son becomes symptomatic. Then have him carry it with him at all times, give a copy to everybody that he comes in contact with, including the hall monitors (they see my son every day, and still ask him "what are you doing in the halls" when they know he comes in for a 1/2 day every day!)

As hard as this may sound, you may want to reduce your son's schedule down to 2 hours, that's what my son did for almost a year, then just increased it to 3 hours recently.

I totally understand you being hesitant about the school having access to your son's doctor and discussing his health. I am totally leary of the whole idea.

Now that your school's nurse has seen your son, (we don't have school nurse's at our schools)type out what works for your son when he becomes symptomatic (like laying down, drinking fluids, eating something salty) etc, and tell her to take the BP often. Even most doctors are baffled, so she can't be an "expert" on this just because she has "others students with OI".

My son does not "drop" or "faint" with POTS, he does get weak, hot, etc and has major abdominal pains when his symptoms flare up.

I take it you already printed out the www.dynakids.org website part for "schools". That's what I did, and it goes over everbody's head, and I'm not really sure anybody really read it (except for 1 teacher)

Hang in there, my other suggestion is to make it easy for your son's doctor, and tell him exactly what happened, and maybe he can specifically note what needs to be done for your son at school.

Nothing worse that being accused of "faking something" when you feel awful.

You know your son the best, if it takes marching yourself directly to the school board to complain, that's what I would do. We had to threaten a lawsuit, because the school was going to kick my son out because of his attendance (or lack thereof) before he was diagnosed. For 2 years we went from doctor to doctor with no diagnosis, and they told us these doctors notes were "not acceptable" because it didn't have a diagnosis. My son was ill with something, and they were going to kick him out.

Hang in there, don't give up!!

Judi,
I was happy to see that you posted this today. I am still upset about this and I hope that you and Russell have calmed down. I knew that you would get some good info on here about what to do, but I really wanted to drive down there today when I got off the phone with you just to give you a big hug.

I hope all goes well tomorrow and this "nurse" does some updating of her information.

Hugs
Tammy

Just to give an update.

One, my son was not even feeling well enough to go to school this morning. But I had already made the decision that he would not return until this was settled.

I refused to give consent for the nurse to speak directly with the doctor. After reading here and speaking with others, I felt is was best to remain the liaison between school and medical.

What has been determined was that the steps to take if he became symptomatic outlined in our meeting and his first day of school were not followed.

No one from the school got back to me this morning, so I called our County Ombudsman. A wonderful woman called the school and within a half an hour, the principal called me. She tried over and over to discuss what the nurse wanted over the phone. I had to keep my cool and keep repeating, please fax it to us in writing.

From the gist of it, she wants a re-statement of what is his diagnosis (they have this already, but this just shows how much the nurse does not believe us), what do to if he becomes symptomatic (again, covered in the meeting and his first day of school) and does the doctor feel he needs a 1-1 aide.

I requested an aide at our meeting, but was denied. I was told that the staff has to SEE an event on the school premises for an aide to be brought in. Which means, yesterday now qualifies him for an aide.

I spoke with our doctor who feels that everyone was not brought on board after our meeting or that the whole matter was handled lightly. I don't think that will happen anymore. Why do our children have to literally fall out in front of someone to be given proper attention?

Your encouragement went very far this morning. My cheeks were burning, but I kept the flutter out of my voice. Thanks again.

Judi

GO JUDI!!! Give your son a hug from ALL OF US! You are NOT alone in this.

It took me years to get the nerve to stand up to anybody (I tend to be very quiet and non-confrontational) NOT ANY MORE!

You are SOOOO patient. You are probably getting farther along by being nice while pushing them to do their job.

I on the other hand, would ask the principal to explain why is this being asked by the nurse when the information was provided previously? And who is this nurse to question the diagnosis that has already been provided? Then I'd share with the County Ombudsmen what was shared initially and what is now being asked (duplication). And I'd proceed to raise holy H**L. But I'd probably annoy everyone so much that they wouldn't want to work with me on what is neede for my child.

so KUDOS to you for keeping your cool!!!!!

Oh, it is so hard to not freak!

What is coming down the pike is that there was a lack of communication between all the parties. Of course, everyone is now scrambling to C*Y*A, but I have noticed the sudden omissions. Only the spec. ed coord. had the guts to slightly admit that she may not have communicated with everyone. In fact, things I told her his first morning back were never told to the nurse.

It is calming down. By the end of the day, I received the letter from the nurse. She must not know (who does?) about POTS/dysautonomia, because she asked for a definitive diagnosis of dysautonomia. Everyone is having a semantic problem. Which term to use-OI, POTS or Dys or all three. She also wants updates from the whole team, ENT, Psych/Therapist, developmental ped, GI, etc. She doesn't think laying down in hallways and classrooms are safe. I agree, so I know our doc will recommend a wheelchair be parked ready just in case. She agrees NOT to walk him anywhere when he is symptomatic. And we will get our aide. I will really celebrate when I meet the person.

Anyway, it has been a very long day and night. My body, of course, had a reaction to all this stress, and I developed a migraine, major(!) fatigue and joint pain. If you don't here from me for a day, I am under the bed! lol.

Take care,

Judi