Hemophilia Support Group

Hemophilia is the name of any of several hereditary genetic illnesses that impair the body's ability to control bleeding.When a blood vessel is injured, a scab will not form and the vessel can continue to bleed excessively for a very long period of time. The bleeding can be external, if the skin is broken by a scrape, cut or abrasion, or it can be internal, into muscles, joints or hollow organs.

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Starting School

I just registered my little one for Kindergarden, does any one have any tips for stsrting school? How do I get all of the teachers etc. prepared? I have tried giving information but it seems to scare them even more? Any words of wisdom?



In the end, the best thing you can do is sugarcoat it. Telling a teacher that your son could develop a fatal bleeding episode from a bump on his noggin won't end well. The best thing you can do is tell them that your child has special needs (but that he certainly isn't "special"), and tell them he has to wear a helmet during play times, or that he may need to be watched closely during rougher play.
The ABSOLUTE KEY here, more so than the general well-being, is making sure that your child may interact with kids his age as much as possible. Bonds and friendships made in Kindergarden may not last when the trivialities of middle school set in, but the lessons they learn from those short-term friendships will make a world of difference to the entire way he lives his life.

Even if your child is a severe hemophiliac, he may do just about everything a normal kid would do -- he just has to be more careful about it, and more closely watched as well.

Tell the teachers as much, and inform them that yes, he is at more risk than the other students, and he may even need some special help at times if he can't write due to a hand bleed, or maybe if sitting down in a desk is uncomfortable to him due to an episode in his bottom, thighs, lower back, etc.

Tell the faculty that your child needs respectful accommodation, but by no means should he be given special allowances. With luck, he shouldn't be seen as different, or the kid with cooties, or the freak for another few years, or at all.

Hi goofy,

My friend had a similar issue when she was fist putting her daughter into school. She had found this product that was great that she sent her to school with just in case of anything. It didn;t require any medical training to be used and was very helpful. It's called Celox. They have all kinds of stuff that targets specifically nosbleeds to other things to. She gave me the website. I hope this helps.... www.celoxmedical.com

All these folks are right and one last important peice of information they need to have is an IDEA or IEP plan which is by law, your chld will be protected and given everything they need educationally. Without this plan they could cause a lot of trouble for you and your child. For example I did not have one for my son in his kindergarten years and they ended up kicking him out! Because they said he missed too much school due to his bleeds (this was before his prophylaxis was effective) and too many tardys. And they were in fear of being sued, it was a whole mess of things including they were clueless about his hemophilia. It is so so SO important to have a comprehensive visit which involves the nurses, the homecare nurse, the entire school staff, the doctors, etc. And during this meeting you would also go over the Individualized Education Plan for your child. Once my son started first grade I have been having these comp meetings once a year for every grade he reached with his school, making any changes necessary to the IEP plan.
We also handed out information about his condition and instructions, etc. It is called a "protocol." We instructed they followed the "R.I.C.E." treatment as well. "Rest, Ice, Compress, Elevate."
Talk to your homecare nurse or doctors and the school counselors about creating an IEP for your child. It is worth it. This does not mean they get stuck in a special education class or program this is just a health disorder agreement for school and school related activities.

I told my son's kindergarten teacher about nathan's condition and, yes. initially I think it freaked her ou but as time went by she found it was totally manageble and was reassureded by the fact that |I said she could contact me to talk over any concern.
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