pacemaker in public school

Hi all,
I am the mother of a child with a pacemaker. My daughter is totally pacemaker dependent and just entered kindergarden. She had her pacemaker implanted the day she was born--she was born with complete heart block. I am concerned about rought recess play since her pacemaker is in her abdomen and her wires are external to veins at this point.

Anyone have any experience with public schools? Any suggestions for an anxious parent? I have already had a meeting with her teachers, principal, etc. and as of yet they have not been overly helpful.

All suggestions for dealing with this problem are appreciated, send email to me at pk0503@yahoo.com.
Thanks!
pk

11 Comments

How about a buddy?!

by ela-girl - 2007-08-30 03:08:00

Hi, pk!

I just wanted to let you know that I am a public school teacher who can understand your concerns. I'm a middle school teacher who blacked out in her classroom, almost died, and had a pm implanted via emergency surgery. My EP is always telling me "it's nobody's business that you have a pm unless you want to tell them blah blah blah." I know he means well, but I really don't mind people knowing. I was sure to let my students know because they can be intentionally and unintentionally rough in the halls and such (bumping and running into people) along with bringing shock games and toys to school to mess with their teachers and friends (which can affect pacemakers).

I'm not saying that her teacher has to make a spiel to all her classmates (they wouldn't probably understand much anyways) but maybe she can be assigned a buddy or something to help her or look out for her. Usually kindergardeners are all lined up and trying to please teachers with following the rules, so I am sure all will be okay! You did the right thing by meeting with and informing the teachers and administration. Is there a school nurse (or even a counselor, perhaps) at her school that might be able to lend a hand and give some advice? What exactly have the teachers and admin. said or done to help? You say that they are not overly helpful, what exactly do you mean? I know my administration was not at all helpful to me upon my return when I needed certain things for awhile (and I was travelling and teaching on a stage etc.). It was hell.

Please keep me informed...I would be really curious how this all pans out for you. My husband just finished his Master's Degree for admin., so I'm sure he'd like to know how you are treated as well. He wants to be a better administrator than those he has had to work for!

Feel free to email me at profe@murrayhq.com

Wishing you a successful year!
ela-girl

Get Best Information

by japresler - 2007-08-30 08:08:07

I share a similar concern. My granddaughter was also born with 3rd degree heartblock due to a high level of an antibody in my daughter's blood related to rheumatoid arthritis and sometimes lupus. She had her pacer implanted at 4 days old and also had a short bout with heart failure that left her heart moderately enlarged so she takes a couple of meds also. She is doing quite well, and will go to school in a couple of years. I can really relate to your concern.

You do need to make yourself of the education act that affects American's with disabilities - and that would include your daughter. Is she eligible for SSI or medicare (or your state's health insurance) or services?
You can get them involved and they should be able to work with you and the school to develop a plan that would protect your daughter's safety without making her feel like someone "weird". The school's administration owes you this - but having worked as a school secretary for 20 years I'm sorry to have to tell you you will have to be your child's strongest advocate.

On the other side of the coin, what kind of a neighborhood does your child go to school in? Are the children known for fighting, roughness, etc? If the truly are a rough school, you might want to consider home schooling. But, if they're fairly normal you probably won't have any problems. Think of all the times your little one tumbled, jumped off the sofa, knocked into something, etc., and nothing happened - it won't be much different. If she has made one or two nice little friends you might want to talk to their parents about helping her stay clear or any overly rough play situations.

The other thing is to educate her - tell her what kind of situations to avoid - although she probably already knows. Has she had her first replacement yet?

Isn't it amazing how active these little kids are - and how cute. My granddaughter is so used to doctors and tests know that she can go through her bi-annual echos and joke and play while they're doing them.

Another idea

by ela-girl - 2007-08-30 09:08:22

You also may want to check with the special education coordinator for your school. He or she would definitely be aware of services the school can provide your daughter and know the various laws and how they would apply to your situation. Perhaps a parapro is needed to watch for your daughter?

ela-girl

You must be nervous

by Vicki - 2007-08-30 11:08:42

Hi PK,
My granddaughter started Kindergarten a few days ago and has some issues which might need to have special attention. Like you, my DIL has met with the principal and teacher. They merely put a note in the file and it's business as usual. I know you must be anxious. Wish I could be of more help. I know there are some people on this site who have children with PM's. Hope they can help you. Hard enough to send your baby to school for the first time; let alone worrying about health issues. But if she has had her PM since birth, I would think she will do just fine. Good luck and prayers for your sweet little girl.

Hi

by randrews - 2007-08-31 12:08:01

I hope your daughter does well this year. Kids are the best. A few things come to mind. If school is beginning it may be possible that the school staff is overwhelmed and not able to give you the attention that they should. Or perhaps they just don't get it. I also wonder if she would be eligable for a 504. I'm a high school counselor and if a student has a condition that isn't provided for by special ed services we will write them a 504(it's basically and IEP) that lists accomodations teachers are legally bound to make. A committe comprised of teachers, administrators, parents etc meet to consider the childs best interests and determine the accomodations that will level the playing field. I'm thinking the school nurse might be an advocate for you, she may get it better than most.
My prayers are with you,
Rusty

dont worrry too much

by marisab - 2007-09-01 10:09:31

As a teen who's had a pacemaker in kindegarden I know that being on the playground is not the safest, but you shouldn't worry to much, just make sure her teachers and people who watch the kids on the playground know. Also make sure your daughter knows not to play so rough and she should be fine.

Have been there, sort of

by slarnerd - 2007-09-06 03:09:06

My son also has complete congenital heart block and has a pacer in his abdomen. He is only 13 months now and has an older sister who is 32 months old. She is constantly on top of him, wrestling and tickling. She has also pushed him quite hard and he has, in the normal course of learning to crawl and pull up, fallen on his pacer. At first, we were hypervigilent and very upset with my daughter for being so rough. However, the Electrophysiologist and pacemaker program nurse have said that it would take a substantial blow to do any harm - certainly more than even the full weight of a 2 year old could do, more than my son putting all his weight against the leads on the side of the pool and more. My concerns, in your place, would not be rough recess play alone - but other recreational games like kickball, dodgeball, etc. Apparently, a child with an abdominal pacer could fall quite hard on the site without damaging the leads. I know that this will not completely dissapate your fears but hope it helps a little. You might find more moms that understand in the yahoo group - http://health.groups.yahoo.com/group/heartblockkids/
It's a great support group with many moms who have been there. Good luck!

Sterling

Don't Panic!!!

by scotsman - 2007-09-18 12:09:40

Got to agree with Marisab, try not to worry too much. My daughter ,also, ha complete congenital heart block and is on her 3rd PM, the most recent being placed 2 weeks before she started school. She is now in P4 (8 yrs old) and what we did was make sure the school were completely aware, any friends she made we let the parents know so they could keep an eye out and told her how careful she must be. It has never, touch wood, caused her any problems and there are times I wish I could control the thing and turn it down a bit.....she is hyper at times!!!!!

Can Relate!

by Sadiesun - 2007-10-08 08:10:42

My son, also completely dependent on his PM, started kindergarten this Fall. His PM was installed about 18 hours after he was born and he also has a complete heart block. During kindergarten roundup last April, I talked to the nurse and felt like I was being pooh-poohed about it. She told me "we have had lots of kids with health issues". I told her she hadn't had my kid yet. During the open house right before school started, I met with her again and talked to her some more. I explained my uneasiness and how hard it was to let my baby (we have 3 other sons) go to school and that I felt helpless to protect him. I also talked with his teacher. A couple of weeks ago, my son came home and told me that his class was doing crunches in PE. I freaked out! I got our cardiology nurse to send me a "does and don'ts sheet" and I faxed it to the school nurse along with a note to call me immediately. She called me and read me the "concerns' sheet that she had sent around to all of the teachers. This made me feel better, but still unable to protect him totally. He no longer does crunches in PE and we have talked about why he has to sit out. Every other month when we send in our EKG, we have a long discussion about why he has to be different -- it usually breaks my heart.
If you find a better solution, please share with me. My older boys rough-house with him and he hasn't suffered any side effects. Unfortunately, I think we will always be hypersensitive to their condition.
We're on our second PM. Last April a lead broke, so we had to do the whole implantation again. His battery was running low, so we were looking at replacing it soon anyway.

Relax

by uvagershwin - 2007-12-24 10:12:44

Hello! I am 13 and have had my PM since I was less than 24 hours old. I haven't had any problems on the playground, so you shouldn't worry. Oh yeah, I have congenital heart block.

Become more involved with the school?

by makermom - 2008-01-30 03:01:46

Hi! Since it's January, I'm sure your coping just fine by now with your daughter in Kindergarten. My oldest started K a year ago and it's definately scary enough as it is to hand over your baby to the school system, let alone with a heart problem. Just after my daughter started K, we found out our 2-yr old son needed open heart surgery and he had it last X-mas (2006) including a pacemaker (due to heart block from an unfortunate stitch in surgery). In talking with the school discussing possible changes in our daughter's behaviour and such, the principle and teachers started to get to know us.

This year, now that our lives are calming down (including my emotions) I am trying to be as involved as possible with the school. I figure that the more students and teachers who know me and our children the better - especially when our son starts school in a few years.

We do have a rural school and it is quite small in comparison to many others (about 430 kids), but many schools do encourage parent volunteers in the classroom and on the playground, as well as field trips, Parent Advisory Councils, etc. The more trusted parents that you meet and know your children as well, the better too. I think it just creates a larger support group in case anything happens and it gives you a greater sense of security.

You know you're wired when...

Like the Energizer Bunny, you keep going.

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Life does not stop with a pacemaker, even though it caught me off guard.