Sunday, August 23, 2009

Nose bleeds

Hello, I'm just curious to see how many other moms out there deal with alot of nose bleeds with their children that have hemophilia. My children have been in school 5 weeks already because they're in year round school. The first week of school I was called three times for a nose bleed. My son has had them since he was a baby. It seems they don't bleed real heavy all the time. Which is good, but it seems his nose is like a faucet. It's like you turn it on and then off. It bleeds for no reason. You all know that we go through so many things with our children, so this isn't really a big deal, but I feel bad for him in school when this happens. I'ts always good to hear what other mothers experience. Have a blessed day, because everyday is a blessing.

16 comments:

Arizona said...

Just a thought....

How does the school condition the air in the classrooms. Maybe the school's air is too dry and his nose is drying out.

If nose bleeds don't happen as often at home, it might be the cause.

Lori said...

DeAnn,
You may want to chat with your HTC. I have read and heard that some Doctors are having their patients use Premarin cream and having a great deal of success. Just a thought!

zaphod ~~ just this guy, you know? said...

Two things- 1) vaseline helps the nose incase it is because of dry air in the school.. a q-tip and grease the insides like a "chapstick".
2) has your son ever been screened for Von Willebrands along with his Hemophilia? We have a friend here in our chapter that has both severe hemophilia type A, and Von Willebrands- one of the biggest symptoms was the nosebleeds.
Hope the vaseline works!

Anonymous said...

My son has lots of nosebleeds also...He has a platelet disorder thought...it bleeds soo much that sometimes it backs up into his ears and starts to come out of his tear ducts.His school calls all the time also..They will do pressure for 15 minutes then i have to go over,,
Cindy

Jennifer said...

Hello, I'm just curious, all of you talk about having a son/sons with hemophilia. Is there anyone else out there with a daughter that has hemophilia? I'm asking because my 15 yr old daughter was just recently diagnosed, and not only was I surprised (and also relieved to finally have an answer to all her symptoms), but the doctors were shocked. All of the specialists we have been working with through the treatment center said they had heard of patients like my daughter, but had never really seen any patients. Like the mom talking about nose bleeds, my daughter has some type of bleed daily. I'm just looking for people who can understand what life is like with this, because when people hear about my daughter, and what we have been going through, they all say, "Oh, I'm so sorry, that's so terrible." And school has been a nightmare. Is there anyone with any comments?

Mom of 4 said...

Hi Jennifer,
Girls with Hemophlia are very rare. Especially those who are severe. Because of the way the genetic defect is carried on the X chromosome it is a predominantly male disorder. Girls can be affected but it is extremely rare. Usually girls become what is termed a "carrier". They may have lower than normal levels of clotting factor but many do not need treatment. My son (9 yrs) is a severe...less than 1% and needs treatment often. One of my daughters (4 yrs) is a "carrier" with low levels. She has not needed factor however she does bruise a lot.

I do happen to know a family who has a severe son...and a severe Daughter...she is only one of a handful in the United States. She is treated with factor replacement like her brother...however she is only 5 years old. I am sure you are dealing with your daughters menstual cycle as well as other issues. I encourage you to learn all you can...you will become your daughters greatest advocate.

I wish I could offer more assistance...but please know daugher or son we are here for you!

Many Blessings!

Alaska said...

Thank you Mom of 4, I'm a nurse, so I am able to research information. And yes, I am dealing with my daughter's menstrual cycle (thankfully, she is not regular yet) and it is very hard for her. She becomes so anemic she can barely function. We are hoping to get her started on hormone therapy with birth control, but that has its own set of problems. I'm sure I'm not the only one having problems getting the school to allow my child to make up missed work because she couldn't come to class for yet another nosebleed, or other problem. Does anyone have any suggestions for communicating with teachers, so that they understand there is no control over a spontaneous bleeding episode? I'm hoping once we find a treatment that works(it seems my daughter may also have an inhibitor problem), that things will settle down to a more "normal" routine. But she was just told by her Spanish teacher that she needs more than 5 minutes notice from the nurse if my daughter can't come to class. Unfortunately, we all know that's not how it works. Last year she had to drop Biology with a medical waiver, because the teacher refused to provide and correct all her missed work, and make up labs. We have had to fight the system since my daughter started school, there has to be a way, hemophilia is not a new disease, and there are many people living with it.

SeansMom said...

Alaska,
I'm not sure if you are on Facebook but there are a few different Hemophilia groups on there, one called "I Have Hemophilia" and I have seen a few girls mention that they HAVE hemophilia. Maybe if you read through the older comments and contacted those girls/women they will be of some help to you. Also, there is a website mybloodbrothers.com and I believe there might be some women with hemophilia on that site as well. Hope this helps you some.

Marsha

Heidi said...

My son is 6 and he used to have terrible nose bleeds every day. I remember one night when he was 3 or 4 sitting on the kitchen floor for an hour and a half with a nose bleed. We have been living in our new house now for 2 years and I can count on one hand how many nose bleeds he has had. I know this is horrible but I'm a smoker and I used to smoke in our old house. In the new house we don't and its made a world of difference!!! I always know when people are smoking around him his nose always tells me.

We live in Northern Wisconsin so the winters are horriblly dry, one thing I did find that works good is vasiline. I put a little on a q-tip and just rub it around up there. We tried the natural powder cut stop stuff. I can't remember what it's called off the top of my head, it's a brown powder with a giant q-tip. Xander (my son)knew the second he saw the brown stuff and would scream bloody murder, it is very painful, he still remembers to this day and we havn't used them for years.

Heidi said...

Alaska,

I just wanted to pass on a number for free legal advice for people that have bleeding disorders. 1-800-520-6154. I had to call them for issues with my son with school as well. You also need to set up an IEP or 504 plan with the school. It is against the law for them not to allow her to make up the work. If you google the plans you can find some that are for hemophilia. I know that if they find she is having problems they have to do everything in their power to accomidate her. If I can be of anymore help please email me at hafpint82@yahoo.com

Anonymous said...

viagra free samples 2007 viagra hmo viagra cialis viagra buy price iframe problems with viagra 2007 viagra hmo cheapest viagra buy viagra in england viagra england where to buy viagra generic viagra cheap viagra pill cheapest viagra in uk splitting viagra

Anonymous said...

[url=http://www.xbox360achievements.org/forum/member.php?u=259462]buy mexitil generic[/url]

Anonymous said...

[url=http://www.xbox360achievements.org/forum/member.php?u=259462]buy mexitil online in usa[/url]

Anonymous said...

[url=http://community.bsu.edu/members/buy+online+Viagra.aspx]Viagra online without prescription[/url]

Heather said...

http://kidsafetyhats.blogspot.com
A great blog for moms looking for protective headgear for small children with bleeding disorders.

Clark said...

Hey I found this website very interesting and I got another one too I think that could be very useful for your health check this link above

generic viagra