Discussions By Condition: Head conditions

Our own nosebleed nightmare

Posted In: Head conditions 17 Replies
  • Posted By: Anonymous
  • August 29, 2006
  • 05:52 PM

My son is almost 3. Right after his first birthday he started having nosebleeds, ranging from minor to fairly bad. At the advice of our primary care doctor, we took him to an ENT, who rolled his eyes and said kids get nosebleeds all the time and acted like we were nuts. My husband and his brother and sister all got nosebleeds when they were children, some of them quite bad, so it does run in the family. Over time, these nosebleeds have gotten worse. It isn't dry air, because it happens when it's humid and we keep a humidifier in his room. He doesn't pick his nose. We average 2 a week, and they're getting more severe. At age 2 1/2 he had a nosebleed that wouldn't stop. It was spurting out like an artery had been cut and no amount of pressure would stop it. He had clots that were 3 inches long coming out of his nose. We finally got it to stop, then 3 hours later it started up again. The amount we could see coming out of his nose was terrifying, but then he vomited an unbelievable amount of blood. It stopped, so we all went back to bed. The next morning, however, I couldn't wake him up. I've never in my life seen someone so gray. His lips were grayish blue. We went back to the ENT who said we were overreacting, then cauterized his nose. We were in the ER the next day when it began bleeding again and my son was lethargic and still gray. He's since been cauterized a second time, and we've seen 2 more ENTs who have scoped his nose and said it's perfectly normal--no polyps or anything. We've also seen a hematologist who drew 8 vials of blood and did dozens of tests on him as far as clotting factors, and everything's normal. I'm telling you it is NOT normal for a 2 year old to have hemorrages from his nose. It is obviously arterial, as the blood is a bright red and it just pumps out of his nose. He clots almost immediately, but that doesn't help. The clots are 3 inches long and like a slug and they hurt way up in his forehead. I don't know what to do--he nearly died from the hemorrage 6 months ago, and the ONLY person who will take us seriously is our primary care doctor (thank you :)) but he doesn't specialize in this type of thing. The bleeds are from either or both nostrils and are both anterior and posterior. He does NOT pick his nose! Our house is NOT dry! I need some serious help here. His nose will bleed sometimes severely 2-3 times a day or 6-7 days a week. We average 2 bad ones a week. It happens when he's just sitting in the floor playing--doesn't have to be doing anything rowdy. I want my son to be a normal child and not have to worry about him having a hemorrage at night and not waking up. It may be extremely rare, but you can DIE from these! I don't want my little boy to be one of these statistics.

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17 Replies:

  • Has anyone investigated the possibility of Osler's Disease? It's uncommon, and most medical practitioners either haven't heard of it, or know little about it. Even ENT specialists can be woefully ignorant.The proper name for the condition is Hereditary Haemorrhagic Telangiectasia. It's a hereditary vascular dysplasia (basically, the patient is born with deformities of the small veins and arteries), and the nosebleeds are the main symptom, however there are other potential problems. There is no simple test for it, and diagnosis is usually based on the patient having a parent with the disease, and having at least 2 of 3 major symptoms, of which nosebleeds are the most common. It's possible for someone with the disease to have only minor symptoms and never be diagnosed, so the family link can sometimes be missed. Others can have frequent and severe nosebleeds, several times a day and/or other problems with their lungs, brain, gastro-intestinal system or other organs. There is no cure, but there's a pretty good treatment available for the nosebleeds, using a KPT laser under general anaesthetic to seal the lesions. There is a great website at www.hht.org - click on the "what is HHT?" link for the basics on this disease. I carry copies of the "HHT for Medical Professionals" page with me whenever I have to see a new doctor. It saves a lot of explaining.
    Anonymous 42,789 Replies
    • October 27, 2006
    • 07:00 AM
    • 0
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  • hi do you know how long the operation would take cause am just wondering ok am so sorry for your little boy am sure he will get over it he will don't worry
    Anonymous 42,789 Replies
    • November 28, 2006
    • 04:26 PM
    • 0
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  • I had many nosebleeds when I was young. I had clots like you talk about that were 3-4 ft long. I fell when I was little (2-3) and broke my nose and it blead all the time. What use to work for me was getting a little piece of a brown paper bag (1 inch long and 1/2 in high) wet this and put this under his upper lip. I also use to get a cold pack and put it on my nose and this would sometimes help. Pinching the nose would also sometimes help when I sat up and held my head back. I couldn't lay down when it was bleading because it would get caught up in my troat and make me choak. When I got older I had a deviated septum operation, that stopped most of the nose bleads.
    Anonymous 42,789 Replies
    • November 30, 2006
    • 07:17 PM
    • 0
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  • My son has nosebleeds in cold dry air but just a bump in the nose too stats it up , a Nurse gave us a good solution when it happens get a tissue roll it till its round and hard and put it up and under the top lip inside your mouth as tight as you can, this stops the blood to the artery thats bleeding within a minute, it works for us hope this helps.
    Anonymous 42,789 Replies
    • December 9, 2006
    • 00:16 AM
    • 0
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  • I had bad nose bleeds as a child and my son experiences the same. I also suffer from anemia and have other bleeding-type problems related to the fact that I am a female. I am currently being evaluated for a condition called Von Willebrand Disease. Apparently 1-2 people out of 100 have this conditon but it often escapes diagnosis.
    Anonymous 42,789 Replies
    • January 13, 2007
    • 07:02 AM
    • 0
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  • Hello : I am writing this because when I was young ( 11-14 ) , I too sufferred from nosebleeds. I went to the doctor several times. Initially it was thought to be an allergic reaction as I also sneezed during this time. I was prescribed an anti-allergen but continued to have nose-bleeds. It was not as severe as the stories I have read here but it was bothersome to never know when I would start having a nosebleed. Also I was hesitant about a cauterization which the doctor said they might have to resort to. After just dealing with it as best I could and taking the anti-allergy medication, I happened to tell my aunt about it and she told me that it might be an iron deficiency. Apparently either a relative or someone she knew had something like this and took iron supplement to aleviate it. I got iron supplements and the condition completely went away. I thought I would mention it here because it was something I hated going through and it was a simple thing that confounded the doctor as to a solution. ALthough I truely believe a doctor is best to consult, this information saved me from going through having my nose cauterized ( which may or may not have solved the problem.) And it ended a very bad problem for me. I hope this helps.
    Anonymous 42,789 Replies
    • January 27, 2007
    • 04:49 PM
    • 0
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  • I would also just sqeeze my nose hoping to block the vein that was bleeding. This would normally stop my bleeding without loosing too much blood. If I released my nose and puddle of blood would come out I knew I was not pressing the right spot or it was too deep. If I could not find it I would just try to breath through my nose, hoping the cold air will contract my veins. Also I would put cold water on my neck.I would never tilt my head backward since I felt the stream of blood going down my throat. By letting blood out through your nose you can see if the nosebleed is getting better. One summer I had no hot water and was taking cold showers. My feet and hands used to be always freezing but those cold showers changed something. Also my nosebleeds became less frequent.It could also be that I started eating iron-rich veggies.Someone has told me drink a lot of OJ but I did not try that yet.
    Anonymous 42,789 Replies Flag this Response
  • Can you tell us how he's doing? I just came across your post looking for something else. It broke my heart. I have two little kids and I can't image having to deal with that. I hope things are better for your family.
    Anonymous 42,789 Replies Flag this Response
  • Hi, I'm so sorry about your problem! I'm not a doctor (in fact, I'm not at all an authority on medicine or anything), but one thing I do know: DON'T GIVE UP. Doctors don't listen. No matter what your problem is, they don't want to hear it. My brother has been deficient of growth hormone all his life. Ever since he was young, my parents have taken him to doctors and dentists to say he wasn't growing. They told us we had nothing to worry about, he was splendid, his jaw would grow, he was fine, etc., etc. Now he's 17 and 5'1. We eventually had to go private a few years ago to get anything done, but by that time, it was really too late for the growth hormone to be of any use. Obviously, the problem we had wasn't potentially life threatening (as your problem sounds), but doctors are the same no matter what. I have to say, I was appalled by their attitude when I read your post. I'm so sorry, and I truly hope that you can find a doctor that'll take you seriously who does specialise in this kind of thing.
    Anonymous 42,789 Replies Flag this Response
  • My son suffers with HHT or Osler Weber Rendu, severe nosebleeds. He also started at a young age and we had to go through the too dry use a humidifier, alergies, and various other things. He would be talking to you and then he would be covered in blood. I took him to a very well known ENT in Orlando FL and he diagnosed him with HHT, look for small red spots on his lips and also check for fine veins in his face, ask other relatives whether they had any of these experiences? We found that 2 of his female cousins had the same problems and one male cousin. Then my grandson started with the same nosebleeds. Go to the website that was listed above and take this information with you to another ENT for another opinion. Good luck, 2 cauterizations later we haven't had any nosebleeds lately.
    Anonymous 42,789 Replies Flag this Response
  • Number 1 I suggest you get your son to a homeopathic physician an M.D. who practices homeopathy and holistic medicine immediately. Number 2 I suffered the same nosebleeds and vomited blood from ampicillan at 3. My nosebleeds were the result of family trauma. My parents and older siblings fought constantly and as a result I had frequent nosebleeds. I also had seere migraines which are another stress-induced type of illness. I too hemorraged one night. You should not have gone to sleep when your child vomited blood. There is a HUGE warning sign right there that this serious occurrence was not handled at the ER. Perhaps your son is sensitive and he is being upset by something in the environment. It does not have to be domestic voilence it could be that he simply is sensitive and you are unaware that something is a stressor. Even the best of parents cannot always know what stressors are to children. Do NOT go to sleep if your child vomits blood ever. Take the child immediately to an ER. Hemorraging from the gut is extremely serious. Take your child to a licensed holistic medical doctor who can give appropriate holistic care. This is serious. Many doctors will dismiss it as not important but it is a sign from the body that something is out of balance and the cause needs to be determined. The most likely cause found for nosebleeds is severe stress. The child cannot express the stress and it manifests in nosebleeds.
    Anonymous 42,789 Replies Flag this Response
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  • Was curious if anyone here has ever tried Nosebudd, www.nosebudd.com , to stop their nosebleeds? I'm a bit tired of frozen bags of peas and don't really enjoy putting anything up my nose to stop my frequent nosebleeds.Looks like they should work and their website says the inventor has hemophilia....Thanks in advance,Maxx
    Anonymous 42,789 Replies Flag this Response
  • Good day.i bumped into your article only to discover the pain you are going through on the condition of your son suffering from nosebleed.Actually, i have heard a lot of people say (even doctors) there is no cure for nosebleed.There is a natural solution i discovered on the CURE not the TREATMENT of nosebleed.this natural solution has no side effects because it is 100 percent natural.Actually,the solution is gotten from a particular spot on the body of an animal in which when taken it is then applied to the nose. i would be the one that would do the application to the nose in your presence and instantly the cure is effected.i am not a doctor but this is just a natural CURE of nosebleed discovered in the creation of God .here is my email address for more information:henryharryus@yahoo.com
    Anonymous 42,789 Replies Flag this Response
  • Hi there :D I am just wondering how your little boy is doing. I would love to know :D
    Anonymous 42,789 Replies
    • December 10, 2008
    • 09:55 PM
    • 0
    Flag this Response
  • Hello : I am writing this because when I was young ( 11-14 ) , I too sufferred from nosebleeds. I went to the doctor several times. Initially it was thought to be an allergic reaction as I also sneezed during this time. I was prescribed an anti-allergen but continued to have nose-bleeds. It was not as severe as the stories I have read here but it was bothersome to never know when I would start having a nosebleed. Also I was hesitant about a cauterization which the doctor said they might have to resort to. After just dealing with it as best I could and taking the anti-allergy medication, I happened to tell my aunt about it and she told me that it might be an iron deficiency. Apparently either a relative or someone she knew had something like this and took iron supplement to aleviate it. I got iron supplements and the condition completely went away. I thought I would mention it here because it was something I hated going through and it was a simple thing that confounded the doctor as to a solution. ALthough I truely believe a doctor is best to consult, this information saved me from going through having my nose cauterized ( which may or may not have solved the problem.) And it ended a very bad problem for me. I hope this helps. Thank you for the suggestion about iron. I took some iron supplements and now i feel much better.
    dizzy2009 1 Replies Flag this Response
  • Has this child had a brain MRI? The reason I ask is because my ex-husband suffered from nosebleeds for probably a decade prior to being diagnosed with a brain tumor. He had numerous exposures to radiofrequency radiation, having spent 6 years working on radar in the military, and then later having become a heavy cell phone user.Same with my mom. She experienced nosebleeds that landed her in the hospital prior to her brain tumor being diagnosed. Hers was caused by the installation of a new cell phone tower.You might want to research this yourself.
    kermworm 81 Replies
    • October 8, 2009
    • 10:02 PM
    • 0
    Flag this Response
  • This happened to a family member of mine rec ently. A very scary situation. We were in and out of the hospital 4 different times. They did cauterize the vessels in his nose. When that didn't work, he was taken to Interventional Radiology where they corked or blocked the main artery in the nasal area. We were told that the body would make new vessels to carry blood to the nasal areas. Never quite understood why the artery ruptered , but it has been approx. 6 months with no more nosebleeds.....
    Anonymous 42,789 Replies Flag this Response
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