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HCM kids, schools, busses....AEDs....insights?

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bulybuly Mother of a six-year old daughter diagnosed with HCM, wife of a wonderful man just diagnosed Find out more about bulybuly
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  • HCM kids, schools, busses....AEDs....insights?

    i have so many questions today for this knowledgeable group.

    First, we had our daughter set to take the bus home from school today-a 10 minute ride, she carries the AED in her backpack, according to the district all bus drivers are AED trained. Short story, her 2nd grade teacher took her to the bus yesterday to meet the driver and the driver was "not nice" in fact refuses to take her. I had an "emotional" conversation with the school nurse today...who told me what an experienced, favorite bus driver this is...yada yada but she wouldn't take her...and that they then wanted to place an aide on the school bus. I suggested they switch bus drivers---and the school principal even used the analogy of kids with allergies to bee stings! They're not excluded from the "normal" bus....we were offered the "special" bus to pick her up from home and bring her home. So I now understand even more how cardiac cripples are made and how difficult it is to help kids lead as normal a life (least-restrictive environment) as possible. Any suggestions as we navigate this? Principal is wonderful...and somehow things don't get communicated to the right people. Plan today, the school principal is riding the bus with my daughter----my husband is hanging around the school "volunteering" this afternoon so that if the driver won't let my daughter on the bus, my husband can take her home.

    Second, the school doesn't have an AED so my daughter brings her. They have set up an elaborate system of her checking it in a notebook in the morning and handing it to the secretary and her stopping and checking it out in the afternoon. Seems like a simple system---but for an 8 year old, it does nothing but say "hey kid with disAbility" to her and every other kid/parent/teacher in the school at least two times a day. I'm trying to help the school figure out how they can get an AED so that hers can stay in her backpack (should she be allowed to ride the bus), she would still have to carry it, but she wouldn't have to haul it out and in and check it out and in each day.

    Third, I wrote a Make a Wish grant app trying to get the school an AED so that she wouldn't have to haul it out, sign it in, sign it out, haul it back in--that seems way too much for an 8-year old---, but they don't grant equipment wishes. Can anyone help me figure out how to get the school its own AED? (That doesn't solve the bus, but it would be one small step...)

    Fourth we NEED to meet kids and families with HCM! My daughter hasn't yet met anyone with HCM--feels like an oddball, doesn't want "all the adults watching her every second".... Would also love to have her meet someone with an ICD--a teenager----as that might end up being the psychological option---risk surgery for the peace of mind of others....not what we want to do, when it's not an absolute---but...I am really concerned about the psychological damage of all this to her self-esteem as she gets older. She, like all HCM kids, is already the odd ball because she must limit her activities...ANYONE with kids or teenagers with HCM in the greater Seattle area who would like to meet??????

    I also am so feeling for kids and families--we're a pretty well-educated family and we know how to navigate the system quite well, but if I'm this frustrated, i wonder what happens to others...with all kinds of challenges. Ugh.

    Thanks for the place to vent

  • #2
    Re: HCM kids, schools, busses....AEDs....insights?

    My son is 8 and in second grade as well. I helped my son's school get an AED last year by convincing the PTA/Fundraising arm of the school to purchase the AED, but I was fully prepared to run a fundraiser to raise the money. You can raise awareness at the same time....You could have a bake sale, carwash, lemonade stand, whatever.

    You just have to publicize it and raise awareness about sudden cardiac death as a public safety issue -- not just an issue that affects your child. It is more likely that an ICD at a school is more likely to be used to save a teacher, administrator or parent than a child, but they should be in every public building. Many work places, shopping malls, places of worship, etc. have them or are getting them. I can e-mail you the packet that I prepared for my school and principal to convince them, but it sounds like that your principal is already on board and you just need the money. They cost under $2K even with the cabinets, etc. You also need to see whether your school district has any rules and regulations in place about AED use. My son is in the Los Angeles Unified School District, and they already had an AED plan in place and even got a discount. It was just a matter of coordinating the whole thing, finding out what our school needed to do specifically, and sending over the check. The principal and a few others of us went and got CPR/AED training, and then the school nurse got certified as a CPR/AED instructor, and she has been teaching the rest of the teachers and staff.

    If you e-mail me at: [email protected]

    I can help coach you through this.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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    • #3
      Re: HCM kids, schools, busses....AEDs....insights?

      Just wondering....

      Is your daughter on a 504 plan for her HCM and the related issues with it? If not, I would definitely make sure she gets one for dealing HCM and school. You can easily have it put in the 504 plan that she be allowed to keep the AED in her backpack and allow her to carry her backpack to class or have the AED kept in the classroom with her and just have it carried to each class by an adult, etc...

      I think Cynthia's idea of a fundraiser is a good idea. I am so grateful that my boys school and all the schools in their district have AEDS. All of the schools at the district I teach at (which is not the same as where my boys go) have AED's, so this not a worry for me. My boys do not have HCM, but every person they work with at their school knows their genetic status as do they. I think it's important for every school in this country to have an AED. Frankly, it should be mandatory. I hope you can raise awareness at your school by having a fundraiser for purchasing an AED.

      As for the bus....I wasn't aware a bus driver had the power to say a child, for medical reasons, couldn't ride that bus anymore, and refuse to take that child to school. I would be contacting the superintendent on that issue. I know in our district a bus driver can't simply refuse to take a child...it starts at the top or the director of transportation for the district makes the call about bussing issues. I would definitely contact someone other than the principal about this. Ridiculous!

      Take care,
      Kaye

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      • #4
        Re: HCM kids, schools, busses....AEDs....insights?

        Perhaps a silly thought, but without an aide on the bus, who will respond in an emergency, since the drivers eyes are on the road? Is it expected that the driver would recognize that your child needed help or that other children would recognize the emergency and notify the driver, pull over, access the pads, put them on the chest, all while watching the other children? Logistically speaking, that would be a major safety and liability issue for everyone involved.
        Onward and Upward !

        Diagnosed 4/07 HCM with fixed & dynamic obstruction
        Myectomy with resected cordonae tendonae 4/08 CCF
        ICD 10/08

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        • #5
          Re: HCM kids, schools, busses....AEDs....insights?

          Thanks for the suggestions/thoughts-

          True that in an emergency the bus driver would have to pull over as she called the direct line they have to their emergency center---but the same happens with kids with bee allergies who need that shot, doesn't it? And I guess that would mean on a "special" bus she would also need an aide?

          I don't know the answer, but I think that her chance of needing the AED on the bus is pretty slim and that more likely, the bus driver gets in an accident and uses it on someone else...

          It's an interesting new world...

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          • #6
            Re: HCM kids, schools, busses....AEDs....insights?

            I think Kaye is right on the money. A 504 would give her the accommodations she needs in dealing with that AED. It might even give you the leverage to push the school to get an AED. Locally some of our schools have AEDs and some do not. We have some local Medtronic sales reps who had a hand at getting some donated or at lower cost apparently. My own son is a senior, and whereas he has a HOCM diagnosis, he isn't considered high risk for SCD. STill, I have been asked to write a letter to the local Board of Education as a support for the school nurses who are trying to get AEDs in all of the schools, and with the trainers of the high school athletic teams.

            As for the bus, I also am with Kaye. Since when can a bus driver pick and choose his/her passengers?

            Good luck. You may need an advocate if this continues.
            Jill

            mother of Kyle, now 19 yrs old- diagnosed after 5 years and 2 years later "undiagnosed"

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            • #7
              Re: HCM kids, schools, busses....AEDs....insights?

              Hi Jill,

              My name is Barbara - I read your reply to this thread and noticed it took you 5 yrs to get a diagnosis. Would you be able to elaborate on that. The reason being - my daughter is 3 has two murmurs and tells me often that her heart is bumpy. echo was normal???

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              • #8
                Re: HCM kids, schools, busses....AEDs....insights?

                So sorry for your frustrations with the bus driver. - Have you thought about starting a car pool?

                Also, you might want to have a basket auction or tricky tray to raise money for the aed. have a 50/50 raffle you will make enough no doubt. at the function you can provide information about hcm - use the flyers from the hcm association and maybe you can get an ultrasonographer and cardiologists on site perform screenings on the kids....you may just save a life!

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                • #9
                  Re: HCM kids, schools, busses....AEDs....insights?

                  BarbaraRose, I sent you a private message since its a long story!
                  Jill

                  mother of Kyle, now 19 yrs old- diagnosed after 5 years and 2 years later "undiagnosed"

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