Familiar with Hemophilia?

V.,

I have 3 beautiful children myself which are now 9 years old, 6 years old, & 4 years old. Each one of my children took there binky's until they were 2 years old. The day of their 2nd birthday, I would get a pair of sissors, and cut the tip of the nipple off, and then once it was time to go to bed, I would give them their blankets and binky's and every last one of them stuck it in their mouthes, took it out, and said "Binky Yucky", and that was the end of that problem. Try it. You might be suprised.

A. H.
Midland, TX

My husband's family has hemophilia. His grandfather and brother both were hemophiliacs and his mother is a carrier. I spoke with her today and she said a couple of things that might help, depending on what you are looking for. There is a hemophilia clinic in Houston that my brother-in-law goes to that manages all of his medical care. He sees them at least once a year for a comprehensive check. There is also a hemophilia support group that they belong to and when he was younger, he went to a summer camp for children with hemophilia. If you are interested in more information about any of these things, feel free to send me a message and I can get more specific info from my in-laws.

V.,
The goal is prevention of bleeding episodes and decreasing the risk of injury. Prevention of bleeding episodes is geared mostly toward appropriate exercises to strengthen muscles and joints and to allow age appropriate activity.
Discuss the situation with the school nurse and jointly plan an appropriate schedule of activity. Use protective equipment, such as padding and helmets, non contact sports especially swimming.
To prevent oral bleeding use a water irrigating device, softening the toothbrush in warm water before brushing. Toothbrush should be soft and small in size.
Anyone caring for this child must be aware of the disorder. The child should wear medical identification. Health personnel need to try not to give IM injections. The subcutaneous route is substituted for IM injections when ever possible. Aspirin or any aspirin containing compounds should not be used. Acetaminophen (Tylenol) is a suitable aspirin substitute.
Factor replacement therapy should be instituted according to his medical protocol and supportive measures may be implemented, such as RICE, which is (1) rest, (2) ice, (3) compression, (4) elevation. Plastic bags of ice or cold packs should be kept in the freezer for such emergencies.
You can contact the National Hemophilia Foundation for further information.

I agree with you, your sons' conduct should of not been brought up at the game. His conduct has nothing to do with how he plays his game, unless he is misbehaving during practice or a game, then it is the coaches place to correct him. Personally, I don't think the stepmother had the right to say anything about his conduct.....that was your palce. As far as your ex siding with his new wife....of course he would.....although he should of said this was not the place to be bringing the conduct issue up. He would do anything to get a dig at you. The conduct issue should be brought up when the teacher calls, or during a teacher/parent conference, or when his report card is brought home.

Va;erie, I am not familiar with hemophilia but my son has VonWillabrands. Which is a bleeding disorder. His bleeding time is 20 mins. It should be 3-4 mins. You really need to get online and find out everything you can about hemophilia. It will really help the first time you have to go to E.R. Your knowledge will help understand what needs to be done quickly in case of accident. Now is the time not later. Your sons need to be talked to about this as it affects their life. I started talking to my son, showing him to apply pressure and get help quick ect.. Start early. 8 and 6 year olds can understand this. I know this is hard to deal with but you can do it and lead a pretty normal life with 2 rowdy boys as boys should be. D.

Hemophilia runs in my family & little I know about it I would love to share. It is passed to the child via the mother, so it must be in your family somewhere. First off, I would do some research in your family, find out who has/had it & see how it affected their lives. The main thing my grandmother always told me was that you just have to be a little more careful with them. He probably won't be joining any sports like football & such. Although medicine has come a long way, you still want to be a little more cautious that he doesn't get hurt, that's not to say be paranoid & not let him do anything, he still needs to be a boy, just be cautious. I had 2 uncles that were hemophiliacs, one died at a rather young age from a car wreck (this was a long time ago, today they would have been able to save him - he bleed to death), the other one lived a very long & full life, however he did become crippled in his latter years. I also had a cousin who died at the age of 26 because a few years prior he had a bad blood transfusion & contracted AIDS. Of course this was in the 80's & they are MUCH more thorough & careful about blood screening these days. This is not meant to scare you, just relaying my exeriences. Also, don't confuse hemophilia with free bleeders, these are 2 very different disorders. Again, I would do research into your family background, then do some research maybe at a library since it's hard to tell what sources online are reliable. Your son will have a wonderful life & is lucky to have a wonderful mother that is looking to educated herself on his condition. Good luck & happy mothering!!

I had two great uncles with hemophilia and diabetes as children (sadly they didn't survive to adulthood,but that's probably more due to the times they lived in and not specifically their condition.)

I hope you find the aid you seek,
S.

Hemophilia really isn't too much to worry about day to day. Having hemophilia just means that your blood doesn't clot because of a reduced amount of platelets. You'll see that you're children bruise easy. The only thing that I would really worry about are contact sports such as football. Where they are constantly getting hit hard and even healthy kids rupture internal organs. On the bright side they're at a slighter risk for heart disease because they don't have platelet clots to get stuck in clogged arteries. I do believe that the are medications available for hemopheliacs. But I wouldn't worry too much, it's very common.