children with bleeding disorders

angeldaisy

Does anyone have first hand experience of coping with a child going to school who has a bleeding disorder?

I have a 4 yr old boy who will be starting school this Sept. I have all the medical information I need - he has Von Willebrands Type 2a. but I want some practical advice if possible, such as playing sports etc...

Banrion

First things first, if not already done, talk to principal and explain everything. Then when time comes ask to speak to his teacher. Give both documentation explaining the disorder. (as a teacher I would appreciate this). Give a run down on the protocol that you want followed if anything happens to him.
Will he be able to do PE, is that your question? I know nothing about that bleeding disorder. PE in infants is fairly easy going. Dancing, jumping, skipping. Do you want him to do PE?
Talk to teacher I suppose and if the PE lesson is going to be a contact game then he cant play. But he should be involved in warm ups and individual/pair games for his own sake.

angeldaisy

thanks for that, I have a meeting with the principal in June and will raise some of the issues with her then. I am waiting for some info to come down from his haematologist in Crumlin as well. I didn't really know what to expect from pe at his age, so I've now started to jot things down as they occur to me.
Thanks for your advice

pwd

I have one myself.

It depends on how severe it is, and what age the child is, what your attitude should be. It also depends on the child themselves. I think it should be their own perogative what sports they should play or not play. Except boxing. Boxing with a bleeding disorder would be crazy.

There are lists of common sports and their risk levels for people with bleeding disorders. Generally small children can't hurt each other as much as teenagers, because they're not as strong or heavy.

If you are going to talk to teachers then I would recommend you talk to the PE teachers. In my experience they either dismiss the condition, or make too big a deal of it - I was warned to be careful one time when I was jumping into a swimming pool lol.

Whatever you do, don't discourage the child from being active in sport. Having strong muscles and joints is probably the best defence against bleeds, and to get them they need to exercise. Weight training is low risk, and is obviously very beneficial in this regard.

I suppose my opinion is that you should educate the child and the PE teachers about it, and avoid interfering beyond that unless it's really necessary. One case where I would say it could be necessary would be if all the PE/games classes are contact sports your child has decided to avoid, and your child is just sitting on the sidelines the whole time. They can and should make provision for your kid to do an alternative activity in such cases.

pwd

I wouldn't bother talking to non-specialist doctors about this tbh, as you'd be surprised at how little most of them know about bleeding disorders. The National Centre for Hereditary Coagulation Disorders is in St James Hospital in Dublin (as you probably know). Doctors there would be able to give you good advice. http://www.nationalhaemophiliacouncil.ie/nchcd.php
There are dentists there too, and you should investigate getting your child's dentistry done there. As far as I remember, bleeding gums can be an issue for people with Von Willebrand's.

angeldaisy

thanks, it's always nice to get another opinion on things. my little boy is tough out and I don't think I could stop him being active or from doing things even if I wanted to . he has already been known to rugby tackle his cousins who are 10 and 12 so I know I'm going to have my work cut out when he is growing up.
His condition is thought to be quite severe, his dad had a really tough time during surgery and didn't react how he should have done with treatment.
So far I've been lucky he hasn't really hurt himself too much, I guess I just worry too much and see the danger in everything as he would even trip over his own shadow!

We thankfully know all the specialists in St James and Our Lady's in Crumlin, but whilst I know all the medical stuff much better than most drs would, its nice to talk to people who are going through it themselves.

cerbeus

The Irish Haemophilia Society is also a good place to go for information.

Here is the section on their website relating to sports:

http://www.haemophilia.ie/content.php?id=7&article_id=154

pwd

The Irish Haemophilia Society should have good information alright. But that article is pants. I've no idea why rowing is on the list of activities to avoid. I've never seen or heard any suggestion it should be avoided before. It strengthens the muscles and joints so it would help prevent injury rather than cause one imo.