Saturday, July 19, 2008

Does your child have a lot of nose bleeds?

I got this question from a reader and the story that we did on the topic turned out to be very interesting.

Hi Jen,

I am the proud mom of a great 5 year old boy named Chase. For the last couple of years he has suffered nose bleeds. 98% of the time are when he sleeps. Sometimes he has failed to wake up and is gagging and choking in his sleep. He bleeds for more than 10 minutes. Sometimes up to 45 minutes to an hour. After many painful packing of the nose and countless doctors visits we have found a part of the cause. My son suffers from Von Willebrands Disease.

There are many kids with the same ailment but often go diagnosed. Von Willebrands is a factor in the blood we all have. It helps in the clotting of his blood. However, Chase lacks this factor. There are three levels and he has the level one. Which is the lowest and least worrisome to have. It took many needle pokes and test to determine this.

However, with so few bleeding disorder clinics we didn't know where to go. Until October of last year....we learned that Peoria had its own Bleeding Disorder Clinic. The other nearest are St. Louis and Boston. Dr. Tarantino is Chase's physician and he is right here in Central Illinois. Also rated one of the top specialists in the country. How lucky are we? It is still a learning process and the medication doesn't always have the greatest side effects but at least it is a step in the right direction.

There are more people out there with this than is known. Often it is hereditary possibly coming from a mom who has had what has been diagnosed or misdiagnosed has endometriosis or heavy menstrual cycles. I know that I have been thru 8 surgeries to treat endometriosis and was ready to undergo a hysterectomy to try and "fix" this problem. After being tested and knowing how to treat it, I don't have to have surgery...well at least not yet. Here is the link to Von Willebrands Disease. Here's the National Heart Lung and Blood Institute.

Here's the story that aired on WHOI:

Do your kids have nose bleeds that don't go away within a few minutes? Does your menstrual cycle last seven days or longer?
You could be one of the hundreds of people in the Heart of Illinois who has a bleeding disorder and doesn't know it.

Five-year-old Chase Murgo is doing what he loves most, playing baseball. It's one of the few sports he can play. Chase has a bleeding disorder called Von Willebrand's Disease. Renee Murgo said, "You would bump him and your elbow would hit him. He would be fine that day, but that night he would have a nose bleed because of the bump to the head." That's why Chase has to avoid all contact sports. What seems like a minor injury for him can be a scary nose bleed. “He would cover a pillow case, a full beach towel. They were white to begin with and then they were completely covered,” said Renee.

Dr. Michael Tarantino is one of the nation's leading hematologists. He runs the Comprehensive Bleeding Disorder Clinic in Peoria. Dr. Tarantino said,"I think in truth we're really still in the process of understanding Von Willebrand’s disease. "

We talked to him about the risk factors for a bleeding disorder:
1. Nose bleeds that lasts more than a few minutes
2. Gums that bleed when you brush your teeth
Dr. Tarantino said, "If your teeth or gums are healthy, they really shouldn't bleed when you brush them.”
3. A family history of bleeding disorders
4. Women with heavy menstrual cycles
Dr. Tarantino said, "It really shouldn't last for more than 7 days and the amount of time a woman should tend to the bleeding, it shouldn't be more than every couple of hours.
5. Women who become anemic during menstruation

Dr. Tarantino estimates there are around 3000 people in the Heart of Illinois with Von Willebrand's Disease like Chase. If those people are in an accident, have surgery or have a tooth pulled.. it could lead to passing out, infection, or even death. Dr. Tarantino said, "If the hematoma is big enough, it can cause the person to become anemic, that can lead to pressure on the heart. so it can be very serious."

Chase's mom has a slight case of Von Willebrand’s, Chase's is more serious. Renee’s mom said, "In the beginning he was terrified. he would kick and scream. It would take 7 of us to hold him down to draw blood." But chase is handling the disease like a pro. He now carries his $700 medical nasal spray with him in a cooler in case of an injury. It's something other people don't have to do, but just knowing he's protected is a relief.
Renee said,"He's gonna have this for the rest of his life. And we'll just educate. He'll know what to do. He'll lead a completely normal life."

The little baseball fan already has a goal in life: to play baseball on T.V. That dream came true when this story aired. Chase will continue his baseball dreams. When he turns six this August, he will be throwing the first pitch at the chief's game.

I will post the video for this story when I get back to work on Monday!

-NewsAnchorMom Jen

Methodist Medical Center's new online healthcare program, MyMethodist eHealth, is a proud sponsor of this blog post. MyMethodist eHealth is the secure link to your doctor's office that lets you request appointments, order prescription refills, update your personal health record, and more. Sign up for MyMethodist eHealth here.


Rixblix said...

Also visit the National Hemophilia Foundation - as well as the Hemophilia Federation America - These agencies advocate and educate individuals with all bleed disorders. Parenting a child with a bleeding is very, very manageable...we've just got a couple speed bumps to contend with.

Shannon said...

My dad (Dave Tebben) has Von Willebrand disease. He wasn't diagnosed with it until he had surgery for Hodgkin's Disease at the Mayo Clinic when he was 52 years old. Until that time, he thought he had a different bleeding disorder, thrombocylotopedia. So did my grandmother, who had been misdiagnosed and so did not know until she was in her 80's about it really being Von Willebrand's. As mentioned in the stories, she had suffered from heavy menstural bleeding much of her life. You can imagine how this diagnosis shook up my family and everything they thought they knew about their own bodies!

I would point out that Von Willebrand's is actually very different from hemophilia. While my father's platelets are low, he doesn't have trouble with blood clotting, just bruising. The same is true for another of my family members who has it. So they are both bleeding disorders, but for some reason it's always bothered me when I explain my dad has a bleeding disorder and the other person says, "oh? like hemophilia?".

There is a book my dad really likes called "Living with Von Willebrand's Disease." I'm not sure of the author, but it wouldn't be hard to find.

Ultimately, my father and other family member (Just trying to protect identity here) have found the disease very manageable. I think it's fair to say it hasn't affected anything in their daily lives, aside from a few precautions during certain medical procedures for unrelated issues. said...

I have so much to say to both of you, but I am swamped right now. I will write tonight! said...

Dr. Tarantino did explain to me the difference between hemophilia and Von Willebrand's Disease. I didn't really understand it, but I did get that hemophilia is usually a lot more dangerous. He said in the early 1900's people with hemophilia used to only live to their 20's, now they can live a normal life. Most of them carry around a needle to give themselves and intravenous dose of medicine in case of an emergency. Does that sound familiar?

I think it's important for moms to read this information because Dr. Taranino said women who have slight cases of Von Willebrand's Disease probably don't realize they have heavy periods. It is normal for them. But that is a key indicator that if the woman has a son, he may have a bleeding disorder too.

He also said Von Willebrands is much more common than hemophilia, but more people know about hemophilia. It was an interesting interview. Do your family members see Dr. Tarantino or is there another blood disorder specialist in town?

Rixblix said...

I've read estimates indicating the incidence of von Willebrand Disease (vWD) at 1-3% of the population. Women tend to be diagnosed more because of heavy periods, however, many, many more go undiagnosed because their heavy bleeding is not adequately addressed by their OB/GYNs.

The National Hemophilia Foundation and the Hemophilia Federation of America do have specific outreach programs for less "familiar" bleeding disorders, (despite a higher incidence).

Also, is an online site just for vWD. And (under the "our books" link) is a source for the "Guide to Living with von Willebrand Disease that a previous commenter mentioned. It was written by and for those with vWD.

It's astonishing the number of women who have undergone hysterectomies simply because they had an undiagnosed bleeding disorder. And while many with vWD don't have to infuse clotting medicine, there are many who do. It can be just as dangerous and life threatening as hemophilia. In fact, some individuals with vWD experience more bleeding episodes than my children who have severe hemophilia. Like any disorder, the effects of vWD and Hemophilia vary greatly from consumer to consumer.

One final note, pharmaceutical companies who manufacture and homecare pharmacies who sell medications sponsor and produce a significant amount of the materials "out there", please keep that in mind if a source of information continually touts one product over another and consult with a hematologist.

Shannon said...

riblix- thanks for all that great info! I think my dad's case is on the "less serious" side of the spectrum, but in retrospect I think my grandmother likely fell more in the middle.

It's amazing how little is known about this disease. I can't tell you how many times a nurse has said to my dad, "so tell me what this means?" When my dad was having some heart issues, we had to - SEVERAL TIMES - point out to medical staff why a blood thinner would NOT be a good idea for him. I think it's one reason I've become so passionate about a person's need to be their own health advocate.

Jen, I'm pretty sure that's the same specialist my family sees.

Rixblix said...

Shannon, I can relate to all the crazy questions. Because I carry the gene that causes hemophilia and because of the way the genetics works, I am a "symptomatic carrier"...that's what the docs what to say. But doctors are often unwilling to concede that a female can have hemophilia. We've also been asked "Oh, how long have you had this?" by doctors and nurses.

You hit the nail on the head when you spoke of self advocacy. Most doctors are very receptive to helping and explaining and admitting lack of knowledge if approached appropriately.

Courtney said...

Hemophilia is a different bleeding disorder. It's neither worse than or more dangerous than von Willebrands disease. It just depends on what KIND you have and the severity of the lack of factor in your body.
My husband is a severe Factor 8 hemophiliac. He was diagnosed at birth after his brother was diagnosed shortly before him.
I have von Willebrands disease, as do both of my children (it's hereditary...there was a 50% chance they would have it or be carriers). Mine is moderate, my youngest son is severe, and my older son is moderate. However, my older son tends to have more bleeds than my younger son. Not sure why, but it's often this way.
I want to impress upon you that there's not just one kind of hemophilia and one kind of von Willebrands. There is, in fact, types of von Willebrands that (if undiagnosed and if continual bleeds occur in joints...yes, joints) can leave a person with completely attrified joints, unable to use them. And joint replacements pose another issue...that is surgery.
So please, everyone, do not assume that von Willebrands is simply heavy menstruation, bleeding gums, and nose bleedsa dn bruising easily. It's much more.
And please do not say that hemophilia is worse than von Willebrands...they are very much the same.
When you have to abort a child to save your own life because you are bleeding too much, you will understand.
When you have an autistic 4yo with a bleeding disorder and he has meltdowns and needs infusions because of self induced injuries.
When your husband contracted HIV because pharmaceutical companies and doctors didn't care and it would save money not to heat treat the blood products, then you will understand.
When your kids can't play contact sports because they could bleed to death, then you'll understand.
When you have to call into work almost every month because you are on your cycle and the DDAVP and infusions aren't helping to control the bleeding, then you'll understand.
When you spend your entire last 5mos of pregnancy on bed rest, then you'll understand.
When people snear and stare and give you dirty looks because both your preschoolers are covered in large, nasty bruises, you'll understand.
Don't say 'I understand'. I doubt you do. said...

Hi Courtney, Thanks for all the great info. You really have your hands full. I hope things go as well as they can for you.

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