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Defibrillators for School

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  • Defibrillators for School

    My son who has HCM starts Kindergarten in the fall. We carry a AED with us whereever we go. My concern is a defibrillator at his school. The principal has been very understanding and helpful, but I am receiving some resistance from the head nurse. I have a meeting on Friday to find out what needs to be done to have an AED permanently placed at the school. I am willing to pay, or raise the money to pay for the AED. Has anyone had an expereince with have an AED placed at the schools? Any suggestions? I had a 10-year old nephew who passed away last year suddenly at school. I am very concerned and scared about my son going to school

  • #2
    Re: Defibrillators for School

    Kay, I'm not sure what to tell you. Where in MO are you? I'm in IL on the IA, MO line. Is there anything I can do to help you?

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Re: Defibrillators for School

      Kay--not sure what advice I can give--other than keep pushing--have the pediatric cardiologist contact the school nurse to let her know the urgency of the situation. I am fortunate that --at least for my 6 yr old--who has not been diagnosed--but does have some right bundle branch blockage-the nurse at school is very interested in this condition and has consulted with my son's ped cardio.

      Don't take no for an answer--push until you feel comfortable. They are our kids--and they are worth it!!--Best of luck!!

      Roxann

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      • #4
        Re: Defibrillators for School

        Kay, the school nurse has a supervisor, prob in charge of the whole health care service in the county school system. Go to through the school board and speak with that supervisor. Before school, each year, schedule a team conference with all teachers/staff who will be responsible for your son. It will let them know you are available, that it is a serious situation, and you truly want to work with them to provide the best for your child. Another thing to consider is the possibility of writing a letter with brief info/history to the EMS unit that is based nearest your son's school. They would most likely be pleased that a parent has been pro-active in anticipating potential needs for their child. They will be more than willing to meet with you and learn what they need to know. This is not an unusual way of assuring appropriate care for a child not yet able to give all their own info. As an emergency dept nurse, I can tell you that parents have left info on file with us for emergency situations, just in case. If they have a profile on hand, they can be aware and be prepared for emergencies. If they know they have this child in that school, they would know the seriousness and true need for no delays in response time. You are balancing this info with the need and desire for privacy for your child, but the potential risk may well be worth the compromise in sharing health info. These are just some suggestions that worked for us. I'm sure you will have some other very good ideas posted. Best wishes. Linda

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        • #5
          Re: Defibrillators for School

          linda has awesome advice, but since your child will have to deal with this nurse a lot, i would schedule some time to sit down with her and address her concerns to make sure she is on board.

          you may want to mention that several states (IL for one) have recently passed laws requiring schools to have defibs on premises. she may not be aware that the new ones are idiot proof and don't shock if it isn't needed.

          good luck,

          s

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          • #6
            Re: Defibrillators for School

            Hi Kay,
            This subject is near and dear to many on the board. Do a search on the subject or content of "AED's and School" and you will find those posts. There are other posts about AED's in school and a young girl, Cynthia Patterson, NC, that is doing her senior project on placing AED's in the high schools in her area. She has already raised money for one AED and it has been placed in her school.

            In Phoenix, where I live, only two AED's in one high school in a city with a population of 5.3 million people. This school had lost an assistant football coach to sudden cardiac death and the one unit was donated and the other purchased. That Phoenix school district was very timid at first. When they placed the AED in their school there was initial concern about libility issues with their insurance rider. They worked through that and everyone in the school is now trained on how to use the AED. That took two years from start to finish. Pretty sad, but it's a start.

            Unfortunately, we need to make people aware that "children and adults do have heart conditions" and some of them go undiagnosed. I have a video, "What is HCM?" that might help. The target audience is for high school athletes & parents & coaches, but it still has a very powerful message. If you PM me your address I can send you a copy. Or you can view it on my web site www.AnthonyBates.org

            Best Regards,
            Sharon Bates

            Comment


            • #7
              Re: Defibrillators for School

              Thanks to everyone for your comments. Sharon, I have viewed your videotape on your website. Yes, I am very interested in a copy. How do I "PM" you my address and what do I owe you for the tape. I have found a website for grants for defibrillators in school. I will let everyone know how my meeting on Friday turns out. This website is a Godsend. God bless you all!

              Comment


              • #8
                Re: Defibrillators for School

                Kay, under Sharon's post are some little icons, Profile, PM, Email, and WWW. Click on the one that says PM and it'll take you to the right place.

                Reenie
                Reenie

                ****************
                Husband has HCM.
                3 kids - ages 23, 21, & 19. All presently clear of HCM.

                Comment


                • #9
                  Re: Defibrillators for School

                  Sarah, thanks for adding that part about including the school nurse. I always asked her to schedule the team conference, she always gave a little inservice about the condition, and I supplemented the info. We had a written emergency care plan that each member was given a copy of. An advantage to this was that I was able to see first hand, the nurse's understanding of the whole thing. It worked great for us, everyone was on board and anxious to work together. I guess I just took that part for granted when I posted. The message board takes teamwork too - Thanks.
                  Sharon mentioned the liability issue which was brought up to us one time. It was not about AED's, but in reference to PE teachers being trained in CPR. When you consider the liability of a standard of care available and not offered plus the Good Samaritan coverage, the liability takes on a different appearance. It takes persistance and perserverance, but we're moving ahead. It's also important to point out that the AED is not there for one child only, but anyone in the area - staff, student, or visitor. It's more likely to be used on middle-aged or older staff or visitor than a student. Linda

                  Comment


                  • #10
                    Re: Defibrillators for School

                    You sound just like me. I too had a son who died at 6 years old from the hcm at school. I would reaaly put the pressure down on the school and maybe go to your news papers, maybe they would be interested in making a story that will benefit your child and the public awareness. THAT'S WHAT I DID, and my daughter got her defibrillator at school. Matter of fact she couldn't start school with her class due to the fact they did not have the device there, but they got it now. Your on the right track!!! Maybe sometime if you want I can share more with you on this, I still got the news paper from where the school getting the defibrillator made front page news... Jen
                    Jen

                    Comment


                    • #11
                      Re: Defibrillators for School

                      Hi Kay -

                      Having a child with HOCM has caused me to have the same concerns that you have regarding your son and the schools. We also carry an AED around with us, however, we were uncomfortable with the idea that we might have to leave it at the school with Keanu. Way too expensive to ask the teacher to be responsible for it. After a lot of "think" time on the subject I decided that I would be home-schooling him. As far as your situation, can't something be done under any sort of a disabled persons law in your state? Don't the schools have to do whatever it takes to accommodate your son and his physical handicap...for example... a deaf child has the right to attend his regular school and have signing translators provided by the district. Would this be the same? I really like the idea of going to the newspaper, but I'm the sort that likes to stir things up. Be the squeaky wheel and do whatever it takes.....Go forth and make some noise. Good luck and let us know if there is anything we can do.

                      SheliRenee
                      Mom of Keanu
                      4 years old (will be in March)
                      Dx at 2 days old with Biventricular hypertrophy
                      Dx at 6 weeks with HOCM
                      Dx at 5 months with V-tach
                      Dx at 3 with Noonan Syndrome

                      Comment


                      • #12
                        Re: Defibrillators for School

                        Hi Kay,

                        My son, Jeremy 11 yrs. old, has HCM. Although, he has an AICD I was able to get an external defibrillator for the school. One could never be too cautious. I called my local public official and got in touch with the Department of Public Health in Delaware to obtain one for the school. It was painful and frustrating some days, but persistence is the key. Make the calls and then follow up, follow up and follow up some more. (Make sure you speak to one person all the time to avoid being bounced around). Before I started the process, I informed the school Principal and the Nurse that I was going to obtain one for the school. Once the device was awarded, the Dept. of Health came to the school to provide training for the Nurse and she then trained faculty. The Nurse took it one step further and purchased a cabinet (looks like the ones that keep the fire extinguishers) to place the device. The neat thing about this is that when you open the door and remove the equipment, it signals 911 automatically is help is sent out to the school.

                        Another thing I did for my child beside meeting with the school (and you're doing the right thing) is provide them with a one-pager that has his diagnosis, insurance information, doctors numbers, the children's hospitals, our phone numbers, his meds. -- a quick reference sheet. I give a copy to all of his teachers, principal and nurse. Anytime we change meds, I update it and provide copies. By the way, I always leave this with family members as well. In addition, my husband and I carry one all the time. You would be surprised how you can forget your child's date of birth in an emergency let alone remember meds and miligrams. I can send a copy this way you can get an idea.

                        The other thing is the school has an elevator and I made arrangements for Jeremy to take the elevator with a buddy assigned to him. He also drinks alot of fluids during the day, so he needs to go to bathroom alot and they needed to accommodate him in this respect. Bottom line is, he is your child who has special needs that need to be met. The school needs to comply for two simply reasons: 1) if it is a private or public school - you're paying for it via tuition or your taxes; 2) most importantly, there are disability laws that protect him and the school needs to abide.

                        Almost forgot, Jeremy is restricted from gym but he still attends so that he does not feel different or left out. Some days he's the teacher's assistant (with his own whistle ) When they play kick ball, he kicks someone else runs for him and likewise for other activities.

                        Sorry to have written so much, but I know how hard it is letting go of full control. That's how I feel when he is not with me or my husband. For peace of mind, I felt better putting a proactive plan in place. Hope this helps.
                        Millie Acosta
                        Bear, DE

                        Comment


                        • #13
                          Re: Defibrillators for School

                          Hi all,
                          You reminded me of a time in elementary school – must have been around the fourth or fifth grade. One of the students was an epileptic that had seizures fairly often. Kids can be cruel, but sometimes they can also be inspirations.

                          The boy, let’s call him Jim, was never, ever left alone. His seizures were such that he didn’t fall down, but he would just stand there during the seizure. When we played stick ball in the street there was always someone to guide him to the curb if need be. Someone always called for him to go to school, and returned him home. Then we would call for him to go out and play, and again take him home afterward. It was always like that. Jim was our project, and he lived as full a life as possible because of it.

                          If the kids in school are made to see your children as projects needing their help, I think you will be amazed at how wonderfully they will be treated. It really is a great world.
                          Burt

                          Comment


                          • #14
                            Re: Defibrillators for School

                            Burt,

                            I agree. Jeremy is very fortunate that his buddies at school always help him out!
                            Millie Acosta
                            Bear, DE

                            Comment


                            • #15
                              Re: Defibrillators for School

                              Thanks to everyone for their comments. After my meeting they have agreed to the defibrillator. In fact, we are in the process of having defibrillators placed in all the schools in our area to benefit everyone. Thanks again for the great advice.

                              Comment

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