Public School asking for access to medical records

[AJsmom]

Good afternoon! While I am new to this site, I am not new to epilepsy. My 12 yr old daughter was diagnosed with a seizure disorder 4 years ago. As it was simple/partial and extremely infrequent (at nights - 4 mos apart) we were able to go a number of years just treating after the fact. A year ago, seizures changed. Although still infrequent (and at night) they became grand mal...so, daily medication started. She has responded very well and has only had one seizure in one year. Her neurologist suggested we have her Elementary school keep some Ativan (small pill placed in mouth during seizure) "just in case". Off I trot to fill out forms and such...two weeks later (and MANY heated phone calls) they are saying (1) only medication approved by Co.School systems is a suppository (it's not bad enough having a seizure in front of your friends, let's go ahead and pull down your pants and place something up your rear!) (2) they want me to sign forms giving our clinic technician (not an educated medical personnel - just trained volunteer) ACCESS TO HER MEDICAL RECORDS AND DOCTOR....

EE GADS!

Any help you can send my way (associations fighting for rights of people with epilepsy, laws, ...) is greatly appreciated.

They have poked the grizzly and I'm ready to take them on!

[RobinN]

I live in CA so it sounds like your schools requirements are different than ours.
My daughter has tonic clonic seizures. Most have happened at school. We do not have a trained medical professional on the campus at all times, but there are those that have been educated in how to take care of my daughter.

We have a letter on file as to what to do in case of emergency signed by her neurologist. I was given some Ativan, however I have never given the school that medication. It could be used in the case of a status seizure, however by this time the paramedics would be there. I have never used the medication on my daughter, so I do not even know how she would react to it. I certainly wouldn't put it into the hands of someone else, to know if the way my daughter is reacting is anything to be concerned about.

I would never allow a suppository to be administered. I know that tonic clonic seizures are not fun to watch, but if managed in a thoughtful and compassionate way they should not be a problem for the one person in charge of her care in these circumstances. I usually arrive within minutes of getting a call, and if 911 have to be called I can easily sign their paperwork to relieve them of liability. She can then return to class after a rest in the nurses office.

As far as the medical records... I have never been asked for that. I have signed a consent though for them to speak with her doctors, including her psychologist. This I decided was to my benefit. It shows them that I am working hard to help my daughter medically, and emotionally. It proves to them that I am not holding anything back. They know, that I am following the guidelines that our doctors are working with me on.

My daughter is not on medication, but her neurologist is happy with this course of action, and supports me in nutritional changes, supplements for brain and body health, natural progesterone to balance her cycles, and neurofeedback to stabilize during this time of her life.

Is there a parent / teacher advocate in your district that you can talk to?

[AJsmom]

A parent advocate is a great idea - I'll look into that. We are in Northern Virginia (bureaucratic hotbed!) While I am not concerned with someone educated in medicine confirming with her doctor the use of Ativan, I don't want to sign a liberal open authorization to a parent volunteer. They did say they have to call 911 if she has a seizure and 99% of the time I am within 5-10 minutes of the school (or my husband is). I have not attempted giving the school medication in the past for the same reasons you outlined. I may (after talking with her doctor) go back to what we did before - making sure one of the two of us are always available to get to the school quickly and administer the Ativan ourselves. (She has had Ativan a number of times before. While it does knock her out, her seizures are in the middle of the night and it keeps her from having repetitive ones). THanks for your advise!

[RobinN]

In the beginning the school called 911 each time there was a tonic clonic seizure. Now the letter from the neurologist says to wait 5 min before calling.

No parent volunteer ever takes care fo Rebecca unless she goes into the nurses office to rest afterwards. I have one person in the office that I trust and has been designated to make the call as to how to handle each situation. Rebecca trusts her which is very important.

Something you need to do today, is request a 504 plan. That will protect you both in having your needs met. The school will need to follow what your doctor requests.

I am remembering now that you might need to have her on an IEP to have access to the district mediator. If you can afford an advocate that knows the "ins and outs" of the system, let them lead the way by all means.

There is a site I found that has Educational Information on it. I will look for it.

[AJsmom]

THanks you thank you thank you!!!! As her seizures have ALWAYS been at night, this feels somewhat like an exercise in futility...BUT as she is only 12 (and her condition could change) I want to make sure I have laid the ground work for a smooth future.

[RobinN]

Here it is:
Great Schools

Yes, the one thing I have learned is that this disorder can jump, skip, fast forward, and grind to a halt at it's whim.

I would have a 504 plan on had to let the school know how you want this to be handled in the event she has a seizure at school. This way the teachers are also on alert to see if she is having any different types of seizures ... that only happen at school.

Do be calm about it all. I think when we get worked up over this change in our little ones life, we can over react which then throws them into a stressful tailspin.

[AJsmom]

So true! From the beginning we have treated her seizures as "just one of those things"...everyone has something - this is hers. No drama - we talk openly (age appropriate), her pediatrician and pediatric neurologist ALWAYS talk with her in the room (so she knows she is getting the whole story). Every MRI, EEG, CAT Scan - the technicians have been great. We feel fortunate to have the good luck to be surrounded by people who help us keep this in perspective. While it is important and due diligence must taken to ensure the best possible life for her, it is just one small piece of the pie...Again, thanks for your help!

[LivingFruity]

Hi AJsmom Welcome to CWE! RobinN has given you some excellent advice. I hope you are able to resolve this matter in a way that everyone can agree on and you are most comfortable with.

[sixpack]

Hi,

I, also, have a child with medical needs. She is VERY special ed. So in her case she has always been under the special ed umbrella. She has a seizure plan in place in case seizures occur during school. 911 is only called if status occurs and that has never happened.

Now having to give out all med records in order to give meds AND they are saying that it can only be given in suppository form, seems odd. Many, many kids have to take meds during school. In the many school districts we've lived in, all that is needed is a letter from the doc plus meds in its original container. Then it is put in the nurse's office or school office. Most school districts will only allow asthma inhalers to be carried by the child. Just being devil's advocate here---are they saying suppository form only because they are worried that she couldn't take an oral med if she was having a seizure. Either because she couldn't do it herself and/or personnel don't want to put anything in her mouth fearing choking? That would be the only reason I could see they'd want a suppository. But I completely understand not wanting to pull down her pants and insert a suppository. I'm just wondering if that was the reason. I think her doctor could write a letter or call the school stating it would be fine to do so in her case.

As Robin mentioned, you probably need to look into getting her in the 504 plan. That gives everybody involved a wonderful plan of action. It would also give you a better way to advocate for your daughter. Also I understand your getting upset. However having been an educator and a parent, I can see both sides. Often people come in, and I mean both sides, ready for a 'fight' so to speak. It ends up pitting one against the other and often neither side wants to listen. Then the one that gets hurt is the child. I have a SIL, for example, who has 2 children that have special needs. Everytime an issue arises with the child both sides go in blazing and the end result is mostly tension and mistrust. As I've said I've been on both sides of table. I think the best way to work through it is to get a 504 plan. Perhaps you can get the doctor to talk to the school to help out as well. In NYS you can get your child an advocate that will help you through all of the red tape etc. Generally speaking you can call your school district's simple partial ed dept and ask for the agencies that provide this service. I believe you need to have an IEP and/or the 504 plan to qualify.

Good luck. Man why can't this parenting stuff ever be easy.

[skillefer]

Hi AJsmom! Welcome to CWE. As you've seen, a friendly group. I'm a special ed. teacher out in California. Now, to your questions...I'd suggest getting an advocate, requesting a meeting in writing, and stating in writing that the meeting will be taped. This lets the district know that your not going to be pushed around. You may also find that to avoid the meeting, they back down. Now, lets look at the 3 things that redflagged you.

1. Only medication allowed is a county approved suppository.

-I agree with you. The use of only a suppository med is COMPLETELY unacceptable. There are issues of modesty involved, and when a child is in a state of seizure, they should not be moved and the psychological damage done when a child wakes up to find out that everyone has seen their private parts is totally outrageous. Make sure to point that out to the advocate, as well as your concerns for the sexual safety of your child.

2. Access to medical records and doctor

- As I am not in your state, I cannot say as to whether this is standard practice. Your advocate should know. In California, this is not required. I have grand mals, and the only things I've ever had to give the school was a protocol from my doctor that stated that instead of calling 911 immediately, as per the districts protocols, that the site should call my husband unless my seizures lasted more than 5 minutes or were back to back.

Offer them a compromise. Ask your neurologist to draw up a protocol for the school to use in the even that your child has a seizure at school. Then, offer it to the county. If they refuse it, then at least you can show that you made an effort to meet them half way. Make sure that you have copies of all papers you give them, and that all the papers are signed and dated. (You may need these copies if you file a complaint with the State.) You didn't state whether or not your child has a 504 plan, IEP, or is in Regular Ed. IF she's on a 504 plan or IEP, you could argue that they are not providing her with a Free and Appropriate Public Education. This is major in the world of special ed. Most importantly, I wouldn't give them an open access to her medical records either. Although people who work in schools sign confidentiality agreements, you'd be surprised how quickly things can race through a staff. People tend not to think about careless statements made in the staff lounge or bathroom. The only thing the Health Tech has to have is your doctor's phone number so that they can notify them if the Ativan has been administered, and a letter from the doctor stating that she has a seizure disorder and how to deal with it when she's at school. If they insist on open access to the medical records and won't back down and are within their rights according to your state's laws, then ask that you be notified in writing and vial phone call every time that your childs records are accessed, as well as who accessed them, date, time and who authorized it, as well as each time your daughter's physician is contacted. It's within your rights...and to be quite honest, if you make it an inconvenience for them, they might back down. Good luck!

[wife and mother]

They may only allow the suppositories because you have no physical nurse at school. They are lisenced to handle meds. The lady who answers the phone is not. They probably don't want rx near thier employees for fear of them taking the meds for their gain. You may have to go to legislater on this one, hon.

[Bernard]

Hi AJsmom, welcome to the forum.