Educating Caregiver about vWD

Hi all! I am the mother of a 2 year old little boy who has vWD Type 1. I am looking for some advice for educating his daycare providers about proper treatment and supervision for him. I work at the same daycare (his hematologist suggested this) and can somewhat monitor him, but lately he has been coming home with bite marks from the other children. Some of these bite marks are very badly bruised. I have tried educating them, but I feel like maybe it's falling on deaf ears where his teachers are concerned. I've had a meeting with the director and she has assured me the biting will stop, but last week he had 4 bites in one day. :(

I don't want to uproot him and move to another center for us to work/attend, but I am at my wit's end.

Also, I would appreciate some treatment remedies for bruising...as that seems to be the primary problem for him at this time.

Thanks! So glad to be part of a community and support group!

Trutland. I am sorry to hear about the biting at your sons nursery. I have always had issues with bruising throughout my life but it never got in my way in doing anything. Does your son get nosebleeds as well?
Amicar is great for minor bleeds and bruising. They also now have an amicar mouthwash for dental bleeding.
Humate P has been amazing for me over the years when I have needed protection from bleeding during operations. I have had seven operations in the last 9 years and humate p has worked like a charm.
Also DDAVP has been ok for me for minor issues as well as intra nasal is another backup for minor issues - definitely ask about it.
Hope this helps.

We carry DDAVP with us, but the hematologist says to treat the bleeding and not the bruise. He has not had any nosebleeds yet, and I hope he doesn't. I will have to ask about the Amicar...how does it work for bruising? Does it prevent the moderate/severe bruising? It seems to take his little body sooooo long to reabsorb the blood and allow the bruise to fade. He's often bruised for many weeks after even the most minor accidents. He can literally bump into something and have a huge bruise.

The only time we have had to use his Stimate was for a fall that resulted in a huge hematoma on his forehead.

The bruising doesn't prevent him from doing anything, but they look terribly painful. :(

Looking back at my vwd over the last 30 plus years after I was diagnosed at 6, I feel like the brunt of the bruising happened when I was younger and same with the nosebleeds. I can remember akways being black and blue as a kid due to the vwd and always needing to hold my nose to stop it from bleeding.
I am glad to hear how active your son is. I played ice hockey from 9 to 18 years old and now compete in triathlons now, run marathons and continue to live a very active life.
Definitely ask about amicar.

Just an update, met with my son's pediatrician today and she said she will be writing a letter to his daycare to encourage them to be more vigilant about preventing bites for my son. :) Hoping this helps them realize the issue at hand.

Trutland,

I've had bleeding issues since I was a child, nosebleeds, heavy menstrual bleeding, trouble taking nsaids, vitamin E or fish oils, to name a few. Had some scary bleeding episodes in fingers and feet. Unfortunately, I wasn't diagnosed with von willebrands until I was fifty years old and before that I was bleeding all over the place. Hopefully, they are diagnosing people alot earlier than that these days. I have Type I Von Willebrands. As long as I am careful to avoid anti-inflamatories, vitamin E, fish oils, primrose oil, nsaids, and check all the herbals before taking them, I am fine. I research everything myself too. Bromalain(digestive enzyme)made me bleed. I Google everything now. Just type it in and put bleeding disorder next to it and read the info.

I always check with the hematologist before taking anything and research it myself. I require DDAVP IV infusion before any invasive procedure followed by oral Amicar for several days afterwards. So far, I have gone through surgeries with no problem following that protocol. It's great that they have treatment for this disorder.

Here is a link to Phoenix Children's Hospital that has some safety tips. Same precautions apply to von willebrands as to hemaphaelia. http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=194&contentid=66

Hope that is some help.

Take care,

Allergic

I forgot to include Aspirin to the list of meds that can cause bleeding.

Allergic

Thank you for the insight! :)

allergic said:

Trutland,

I've had bleeding issues since I was a child, nosebleeds, heavy menstrual bleeding, trouble taking nsaids, vitamin E or fish oils, to name a few. Had some scary bleeding episodes in fingers and feet. Unfortunately, I wasn't diagnosed with von willebrands until I was fifty years old and before that I was bleeding all over the place. Hopefully, they are diagnosing people alot earlier than that these days. I have Type I Von Willebrands. As long as I am careful to avoid anti-inflamatories, vitamin E, fish oils, primrose oil, nsaids, and check all the herbals before taking them, I am fine. I research everything myself too. Bromalain(digestive enzyme)made me bleed. I Google everything now. Just type it in and put bleeding disorder next to it and read the info.

I always check with the hematologist before taking anything and research it myself. I require DDAVP IV infusion before any invasive procedure followed by oral Amicar for several days afterwards. So far, I have gone through surgeries with no problem following that protocol. It's great that they have treatment for this disorder.

Here is a link to Phoenix Children's Hospital that has some safety tips. Same precautions apply to von willebrands as to hemaphaelia. http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=194&am...

Hope that is some help.

Take care,

Allergic

You're very welcome. I am not a doctor so I can't recommend anything for bruising but you may want to ask your doctor is Arnica topical ointment would be ok to use on your son's bruises. It works very well for me. It speeds up the process of bruise healing and makes it go away sooner. I stress, you must check with the doctor first before using it. It is homeopathic made by Boiron brand.

Take care,

Allergic

I have used Arnica as well. It seems to help.