Chronic Nosebleeds and a Mom's Frustration

Hi L.:
I had chronic nosebleeds as a child, as did my mother. My mother and I have recently been diagnosed with Essential Thrombocythemia. According to the doctors this is a "fairly rare" blood disorder that basically causes our bodies to produce too many platelets. Oddly enough, one of the things that can happen with this disorder is nosebleeds. You said your son's platelet count was taken. You might consider taking him to a hemotologist who would know what to look for. My experience has been that most GP's are not familiar with ET. They are more familiar with the opposite condition (Thrombocytopenia) which is more common. My condition was discovered by accident. After that, my mom and brother both went in to be checked and Mom has it too. For the most part, we take meds to keep our platelet counts within reasonalble levels and have blood labs taken every so often. You can find lots of info on the internet. Some is a bit scary, but those are extreme cases and for the most part it's not that big a deal as long as you take care of yourself. Hope I didn't scare you. Just thought I'd put this out there on the odd chance that it might be of help.

S.

My 5 year old daughter had this too. I went to ENT and they did a nasal cauterization. That was last July (two days before I delivered my son). We have not had one nose bleed since. Have you asked your doc about this option?
My daughter's situation was horrible. THe final straw was when I was at the grocery store and bleeding started and lasted for 30 min of GUSHING (think water faucet). Drove her to the doc which was two blocks away, doc sent me promptly to ENT. Cauterization happened. EASY process.
Good luck!

Adding my thoughts here. One of my son's gets nose bleeds a lot as well and some of them can be horrifying w/ the amount of blood that comes out. And yes, he has woken up some mornings w/ a pillow full. My husband said he used to get them a lot when he was little too. Mostly it seems boys get them more often than girls. Usually they are not that serious just scary, but when they bleed for over an hour that can be concerning. He will most likely grow out of them, but I agree w/ the one response that if you don't like what you are hearing from the docs get a second opinion. There are great docs out there who have a natural instinct for stuff that other docs don't consider or see. I grew up in Denver so not only was it dry, but we had the high altitude as well. We had to put Vaseline in our noses to stop getting nose bleeds.

Good luck and hang in there. BTW, how often does he get them?

Hi L.
i am very sorry you are going through and feel bad for your son. My husband and son both get nose bleeds often. Our doctor told my husband he has a severly dry nose so to put neosporin in his nostrils for a week this helped a ton. now he only gets a nose bleed if we go somewhere that is really dry. This may help your son. My other advice is to take him to a chiropractor and see if they may have a answer. I feel for you. Hang in there You are in my prayers.:)T.

I don't have any experience with your issue, I'm sorry to say, but I feel for you and your son. I am going to say something that may sound incredibly stupid, but I overlook the obvious sometimes and ....

well is it possible, kids being kids and all that he is aggressively picking his nose? that would at least justify no medical explanation....

My FIL, BIL, husband and daughter all get nose bleeds extreme nose bleeds. After many doctors and specialists, surgeries, etc. Here is what our family found...
1. Dry air
2. Caffeine- even little things like chocolate
3. Tempature change- when we walk into a building and it is cold outside often my hubby would get a nose bleed
4. Dust

Good luck and from all of us that have been there and are still there... you are in our thoughts and always carry kleenex! :)

Hi L.! I dont know if you found a way to treat the chronic nosebleeds yet, but when I was little around 6 this happen to me, oh I remember those days and nights and it was horrible, I know exactly what your son feels like! I got them all the time, Im talking lots and lots of blood they never stopped bleeding. The doctors never did anything about it and when my mom would take me in they would say "oh its normal" Normal no its not normal, they never did find out really why it kept happening but when I was in high school I finally had enough I use to wake up with bloody noses and have to miss school they would bleed for so long, I could tell when I would be getting one because I could taste the blood in the back of my throat(I use to spit up blood alot too, like bloodclots)anyway finally I had one that bleed for over an hour and I was crying I thought I was dying my dad brought me in and right there and then they finally cauterized my nose its been 16yrs now and I honestly only had 2 since then and I think they were just from dry air or my allergies. I dont know I think I would try the cauterizing thing before you do anything else if the Doctors arent finding anything. Good luck! Its not fun!
J.

Our son had the same problem and I had the same fears.
At age 5 after a very scary hospitalization, he was diagnosed with a vitamin K deficiency. Vitamin K which aids in clotting, is normally produced by the body but our son does not produce it. We put him on a good multivitamin and he is fine. Even now (he is 21) if he gets lazy about taking his vitamins, the nosebleeds come back.
I would see if this was one of the tests the doctors ran. It is rare, but so easily treated.

Hi Lindsay,

I used to get chronic nose bleeds, migraine & cluster headaches. But I was older, and it only lasted during a very rough time in my life.

I ended up in the emegency room only once after an hour of bleeding. They would come out of nowhere too. But never when I was sleeping in the middle of the night.

The doctors found out that a lot was due to stress. Believe it or not. Is your hubby gone a lot? Is your son stressed about his daddy's job?

Or, perhaps Is it dry in your home?
What type laundry soap do you use. He might be allergic to the chemicals in the laundry soap. We sleep on our pillows and sheets. It takes sixteen rinse cycles to rinse the chemicals out of using just one load of (store bought laundry soap).

Windex has a chemical in it that damages the blood and stops the blood from producing blood. Pledge has butane & propane gas in it. Your son might have an allergy to the chemicals in his environment.

Think about. Education is key.

I found out that my migraines were triggered by Pledge, Windex, Tide, etc. .

All I can say is to keep taking him to the doctor's until you get the answer you feel is the right one.

Feel free to give me a call. One thing I do best is educate!

J.

My niece had this problem as well. They had did cauterization and the nose bleeds has stopped. Simple procedure and probably shoud have been done long before the removal of adnoids.