Nosebleed (Epistaxis) in Children

When a Nosebleed is More than a Nosebleed: Understanding HHT with Sara Palmer

Nosebleed (Epistaxis) in Children | Johns Hopkins Medicine

Few people are familiar with HHT, an uncommon blood vessel disorder affecting about 1 in 5000 people around the world.  So today I’ll introduce you to HHT—what it is and when to get tested for it.

What is HHT? HHT stands for Hereditary Hemorrhagic Telangiectasia—a mouthful of medical terminology! Here’s what it means:

Hereditary (genetic; inherited)

Hemorrhagic (causes bleeding)

Telangiectasia (abnormal blood vessel)

 In other words, HHT is inherited; it causes bleeding; and the bleeding comes from abnormal blood vessels. HHT is caused by a mutation in one of several genes related to blood vessel development. If you have HHT, each of your children has a 50% chance of inheriting the disease.  Only some blood vessels in people with HHT are abnormal or malformed.

In these malformations, there is a direct connection between an artery and a vein, while normal capillaries (the smallest blood vessels) are missing. These malformations commonly occur in nose, gastrointestinal tract (gut), or on the skin (where they are called telangiectasias) and in the lungs, brain, or liver (where they are called arteriovenous malformations (AVMs)).

The location, size and number of these abnormal vessels are different in each person with HHT, even within the same family. Some people with undiagnosed lung or brain AVMs will have serious medical complications, while others remain symptom-free. And many medical problems associated with HHT can be caused by other illnesses.

All of these factors make it difficult to know if you or your family has HHT.

When to Get Tested for HHT? A variety of symptoms and medical complications result from HHT.

Nosebleeds (caused by bleeding from telangiectasias in the nose) are the most common symptom of HHT, affecting about 95% of people with HHT by the time they reach middle age. Anemia can result from telangiectasias bleeding in the gut (or from frequent nosebleeds).

Anemia causes fatigue, shortness of breath and weakness. Multiple small red spots (telangiectasias) on the lips, tongue, fingertips or face, while not harmful, are important in diagnosing HHT. Heart failure can result from AVMs in the liver, though this is uncommon.

Stroke, brain abscess (infection) and lung or brain hemorrhage (bleeding)—most of the serious complications in HHT—come from AVMs in the lungs and brain that have not been diagnosed or treated.

HHT should be suspected if a pattern of these symptoms and complications exists in one person or in multiple family members. If you have frequent nosebleeds and you had a stroke or brain abscess with no known cause, then you might have HHT.

If you have nosebleeds and your father has many red spots on his face and lips, then you and your family might have HHT.

Nosebleeds alone may be a reason to suspect HHT, especially if they are frequent, persist into adulthood and/or are present in multiple generations of your family.

 The best way to get tested for HHT is to visit one of the many HHT Centers of Excellence in the US, Canada and other countries (a list of Centers can be found in Living with HHT or at www.curehht.org).  The diagnosis of HHT is made by a physician using established criteria including symptoms, family history, and screening tests, or by genetic testing.

What happens after I’m tested?  If you’ve been diagnosed with HHT, there are two essential steps you should take: 1) get screening tests to find out whether you have AVMs in your lungs or brain.

Strokes, brain abscesses and brain hemorrhages due to lung and brain AVMs are almost all preventable—but only if the AVMs are discovered and treated. 2) Tell your parents, siblings and children that they are also at risk for HHT.

They should be tested, either with genetic testing or by clinical examination and screening for AVMs in the lungs and brain.

If it turns out you don’t have HHT, then you cannot pass it on to your children; but if your family has the symptom pattern described above, then one of your parents and one or more of your siblings could have HHT, and they need to be tested. 

When you know you have HHT, you can get the tests and treatments you need to stay healthy, learn to manage your symptoms and prevent many serious complications.

Most people with HHT can live full lives, and researchers are developing new treatments for those who are limited by   HHT related illness and disability.

So if you think you have HHT, get tested, get screened and get treated! Tell your family and encourage them to do the same.

Want to know more about HHT? In Living with HHT, you will find in-depth discussions of symptoms, diagnosis and screening tests; treatments, procedures and preventive measures; research advances; and how to cope with the emotional and social stress of having HHT. Stay tuned for a future blog post on treatment options. And for more information, visit www.curehht.org .

Sara Palmer, PhD, is a psychologist and an assistant professor in the Department of Physical Medicine and Rehabilitation at Johns Hopkins University School of Medicine.

She is the coauthor of Spinal Cord Injury: A Guide for Living; When Your Spouse Has a Stroke: Caring for Your Partner, Yourself, and Your Relationship; and Just One of the Kids: Raising a Resilient Family When One of Your Children Has a Physical Disability.

Her latest book, Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia, deals with managing this little known disease. 

Source: https://www.press.jhu.edu/news/blog/when-nosebleed-more-nosebleed-understanding-hht-sara-palmer

Nosebleed (Epistaxis) in Children

Nosebleed (Epistaxis) in Children | Johns Hopkins Medicine

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A nosebleed is bleeding from tissues inside the nose (nasal mucus membranes) caused by a broken blood vessel. The medical word for nosebleed is epistaxis. Most nosebleeds in children occur in the front part of the nose close to the nostrils. This part of the nose has many tiny blood vessels. These can be damaged easily.

A nosebleed can look scary, but is usually not a serious problem. Nosebleeds are common in children. They happen more often in dry climates. They also happen more during the winter. That’s when dry heat in homes and buildings can cause drying, cracking, and crusting inside the nose. Many children outgrow nosebleeds during their teen years.

What causes a nosebleed in a child?

Nosebleeds can be caused by many things. Some common causes include:

  • Dry air
  • Picking the nose
  • Blowing the nose too hard
  • Injury to the nose
  • Colds and allergies
  • Object in the nose

In many cases, no specific cause for a nosebleed is found.

Which children are at risk for a nosebleed?

A child may be more at risk for nosebleed if he or she:

  • Lives in a dry climate
  • Picks his or her nose
  • Has allergies
  • Has a cold

What are the symptoms of a nosebleed in a child?

The main symptom of a nosebleed is blood dripping or running from the nose. Bleeding from the mucus membranes in the front of the nose comes from only one nostril. Bleeding higher up in the nasal cavity may come from both nostrils. It may be painless. Or your child may have pain caused by an injury or an area of sore tissue inside the nose.

The symptoms of a nosebleed can be other health conditions. Make sure your child sees his or her healthcare provider for a diagnosis.

How is a nosebleed diagnosed in a child?

The healthcare provider will ask about your child’s symptoms and health history. He or she may also ask about any recent accidents or injuries. He or she will give your child a physical exam.

How is a nosebleed treated in a child?

  • Calm and comfort your child.
  • Have your child sit up and lean forward slightly. Don’t have your child lie down. This is to prevent him or her from swallowing blood. Swallowing blood may make your child vomit. Don’t have your child put his or her head between the knees. This can make bleeding worse.
  • Tell your child to breathe his or her mouth. Gently pinch the nostrils closed for 5 to 10 minutes. Don’t stop pinching to check if bleeding has stopped.
  • Apply a cold compress to the bridge of the nose. Don’t put tissues or gauze in your child’s nose.
  • If bleeding does not stop, repeat the above steps again.
  • Once the bleeding stops, tell your child not to rub, pick, or blow his or her nose for 2 to 3 days. This will let the broken blood vessel heal.

If your child’s nose doesn’t stop bleeding, take him or her to see the healthcare provider. In some cases a provider may apply heat to close a blood vessel. This is called cauterization. It is a quick procedure.

Talk with your child’s healthcare providers about the risks, benefits, and possible side effects of all treatments.

How can I help prevent a nosebleed in my child?

If your child has nosebleeds often, you can help prevent them in these ways:

  • Run a cool mist humidifier in your child's room at night, if the air in your home is dry. Clean the humidifier regularly so germs and mold don’t grow in it.
  • Teach your child not to pick his or her nose or blow it too hard.
  • Put petroleum jelly inside your child’s nostrils several times a day. This is to help protect the mucus membranes.
  • Use saltwater (saline) nose drops or spray as directed by your child's healthcare provider.
  • Talk with your child's healthcare provider if your child has allergies that may lead to nosebleeds.
  • Don’t smoke in the home or around your child.

When should I call my child’s healthcare provider?

Call the healthcare provider if:

  • You can’t stop the nosebleed
  • The nose bleeds again
  • Your child has an injury to the head or face
  • There is a large amount of blood
  • Your child feels faint, weak, ill, or has trouble breathing
  • Your child has bleeding from other parts of the body, such as in the stool, urine, or gums, or bruises easily
  • An object is stuck in your child's nose

Key points about a nosebleed in children

  • A nosebleed is bleeding from tissues inside the nose (nasal mucus membranes) caused by a broken blood vessel.
  • A nosebleed can look scary, but is usually not a serious problem. Nosebleeds are common in children. They happen more often in dry climates. They also happen more during the winter. That’s when dry heat in homes and buildings can cause drying, cracking, and crusting inside the nose.
  • Nosebleeds can be caused by many things, such as dry air, nose picking, and allergies. In many cases, no specific cause for a nosebleed is found.
  • Have your child sit up and lean forward slightly. Don’t have your child lie down. This is to prevent him or her from swallowing blood. Swallowing blood may make your child vomit.
  • Gently pinch the nostrils closed for 5 to 10 minutes. Don’t stop pinching to check if bleeding has stopped.
  • Run a cool mist humidifier in your child's room at night, if the air in your home is dry. Teach your child not to pick his or her nose or blow it too hard. Apply petroleum jelly inside your child’s nostrils several times a day.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

  • Know the reason for the visit and what you want to happen.
  • Before your visit, write down questions you want answered.
  • At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.
  • Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.
  • Ask if your child’s condition can be treated in other ways.
  • Know why a test or procedure is recommended and what the results could mean.
  • Know what to expect if your child does not take the medicine or have the test or procedure.
  • If your child has a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.

Source: https://www.hopkinsmedicine.org/health/conditions-and-diseases/nosebleeds

Getting Too Many Nosebleeds? When You Should Worry

Nosebleed (Epistaxis) in Children | Johns Hopkins Medicine

Nosebleeds happen. They don’t discriminate whether you have tissue at hand — and they don’t delay because you’re in a job interview or penned in a crowded theater.

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There’s just that rush of blood and a race to contain it. If you frequently get nosebleeds, you probably know all too well the sense of urgency and embarrassment.

But why do nosebleeds happen? And who is most at risk? Otolaryngologist Brandon Hopkins, MD, answers these questions and shares tips for prevention. He also offers steps to take when you get a nosebleed to promptly stop the problem.

Also, while nosebleeds are generally nothing more than a nuisance, in rare cases, a chronic problem can be a sign of a rare, serious disorder called hereditary hemorrhagic telangiectasia. It often goes undiagnosed and involves abnormal blood vessels that enlarge in the lungs and brain. Find out who is at risk.

Is your child prone to nosebleeds?

In all of us, children and adults a, the nasal cavity has a large blood supply. In particular, a lot of blood flows into the front bottom part of the nasal septum, known as Kiesselbach’s plexus. Nearly 90 percent of nosebleeds happen in this region, which houses five arteries.

Children have more blood vessels in the nasal plexus, which makes nosebleeds more ly for them than for adults. If your child picks his nose, the risk for nosebleeds is further elevated. Picking sometimes scratches the plexus and triggers a nosebleed, Dr. Hopkins says.

“Nosebleeds tend to happen more often in the summer because warm temperatures cause your plexus to be engorged, and also during the winter, because dry air can irritate the blood vessels in your plexus,” he says.

The good news? If your child suffers from nosebleeds, he or she will probably grow it by the teenage years, he says.

What causes nosebleeds in older adults?

In older adults, medications and atrophy of the skin are the most ly culprits when it comes to nosebleeds, says Dr. Hopkins.

If you regularly take blood thinners such as aspirin, ibuprofen or Coumadin®, or other drugs that dry out your nasal cavity, you are at greater risk for nosebleeds.

Atrophy of the skin, a common condition in older adults that causes a loss of elasticity, also makes nosebleeds more ly. The tissue in your septum and surrounding blood vessels becomes more fragile as you age.

How can you prevent nosebleeds?

If you suffer from chronic nosebleeds, these tips may help keep them at bay.

1. Use a humidifier. In winter months when air is dry, use a humidifier (especially if you have radiant heat in your home). This helps keep your nasal plexus from drying out.

2. Use saline spray. An over-the-counter saline spray may help keep nasal passageways moist.

3. Try a water-based lubricant or nasal cream. If saline spray isn’t providing relief, try a more sticky/thick spray, which may do a better job of coating the nasal passages, Dr. Hopkins says.

4. Don’t pick your nose. Nose-picking often irritates or scratches the nasal plexus, and that damage makes more nosebleeds ly.

If you have nosebleed, how can you stop it quickly?

When a nosebleed happens, Dr. Hopkins suggests doing the following:

  • Use an over-the-counter, nasal-decongestant spray that contains oxymetazoline, such as Afrin®. This often helps stop bleeding. However, only use nasal decongestants for brief periods of time (one to three days). After that, you’ll need to take a break for a week or so. If not, you can get rhinitis medicamentosa, or extreme congestion.
  • Sit down and lean slightly forward (don’t tilt your head back).
  • Using your thumb and index finger, firmly pinch the bottom, fleshy part of your nose. Pinch for between 8 and 10 minutes. Hold a tissue or damp cloth under your nose to absorb any blood.

While nosebleeds are sometimes bothersome, they are usually not cause for concern, Dr. Hopkins says.

However, if you have applied firm pressure for 20 minutes and used a decongestant and your nose is still bleeding heavily, seek medical treatment quickly, he advises.

Source: https://health.clevelandclinic.org/do-you-get-too-many-nosebleeds-when-to-worry/

Nosebleeds

Nosebleed (Epistaxis) in Children | Johns Hopkins Medicine

Nosebleeds can be scary, but they’re usually not dangerous. Also known by the medical term epistaxis, a nosebleed is any loss of blood from the tissue in the nose. The front part of the nose contains many fragile blood vessels that can be damaged easily. Most nosebleeds in children occur in this area of the nose, close to the nostrils.

Nosebleeds are fairly common in children, especially in dry climates or during the winter months. Dry air and dry heat inside homes and buildings can cause drying, cracking or crusting inside the nose.

Often, children outgrow the tendency for nosebleeds during their teenage years.

Nosebleeds can be caused by many factors, but some of the most common include:

  • Picking the nose
  • Blowing the nose too hard
  • Injury to the nose
  • Dry air
  • Colds and allergies
  • A foreign body (or object that doesn’t belong) in the nose

Sometimes, no apparent cause for a nosebleed can be found.

To treat a nosebleed:

  • Calm your child and let him or her know you can help.
  • Have your child sit up and lean forward to avoid swallowing blood. Do not have him or her lie down or tilt head back.
  • Pinch the nostrils together for five to 10 minutes without stopping to see if bleeding has stopped.
  • If bleeding does not stop, try the above steps one more time.
  • Do not pack your child's nose with tissues or gauze.

When to call your primary care provider

Sometimes, a nosebleed requires more than minor treatment at home. This can be determined by your child's primary care provider. In general, call your child's primary care provider for nosebleeds if:

  • You are unable to stop the nosebleed or it recurs.
  • Your child also has a nose injury that may indicate a more serious problem (such as a fractured nose or other trauma to the head).
  • There is a large amount or rapid loss of blood.
  • Your child feels faint, weak, ill, or has trouble breathing.
  • Your child has bleeding from other parts of the body (such as in the stool, urine or gums) or bruises easily.
  • A foreign body is stuck in your child's nose.

If your child has frequent nosebleeds, you can help prevent nosebleeds from occurring by:

  • Using a cool mist humidifier in your child's room at night if the air in your home is dry. Be sure to follow the manufacturer's advice for cleaning the humidifier so that germs and mold do not grow in it.
  • Teaching your child not to pick her nose or blow it too forcefully.
  • Applying nasal saline gel, spray or drops (available over the counter in drugstores) inside the nostrils 2 to 3 times per day, especially at bedtime, to help keep the area moist.
  • Antibiotic ointment applied into the nostrils with cotton swabs daily for 4 weeks if directed by your child's primary care provider. 
  • Seeing your child's primary care provider for treatment of allergies that may contribute to frequent nosebleeds.

Reviewed by Jennifer M. Spellman, MSN, RN, CRNP, CORLN, Kimberly L. Bennett, RN, MSN, CPNP

Source: https://www.chop.edu/conditions-diseases/nosebleeds

Hereditary Hemorrhagic Telangiectasia – NORD (National Organization for Rare Disorders)

Nosebleed (Epistaxis) in Children | Johns Hopkins Medicine

TEXTBOOKS
Guttmacher AE, Marchuk DA, Trerotola SO, Pyeritz RE. Hereditary hemorrhagic telangiectasia (Osler-Weber-Rendu syndrome). In: Rimoin DL, Pyeritz RE, Korf BR (eds). Emery and Rimoin’s Essential Medical Genetics. Oxford: Academic Press, 2013;192-5.

JOURNAL ARTICLES
Bernhardt BA, Zayac C, Trerotola SO, Asch DA, Pyeritz RE. Cost savings through molecular diagnosis for hereditary hemorrhagic telangiectasia. Genet Med 2012; 14:604-10. doi: 10.1038/gim.2011.56. PMID: 22281938

Faughnan, M. E., et al. International guidelines for the diagnosis and management of hereditary haemorrhagic telangiectasia. Journal of medical genetics. 2011:48.2:73-87.

Karnezis, Tom T., and Terence M. Davidson. Efficacy of intranasal bevacizumab (Avastin) treatment in patients with hereditary hemorrhagic telangiectasia-associated epistaxis. The Laryngoscope. 2011: 121.3: 636-638.

McDonald J, Bayrak-Toydemir P, Pyeritz RE. Hereditary hemorrhagic telangiectasia: An overview of diagnosis, management and pathogenesis. Genet Med 2011;13:607.

Trerotola SO, Pyeritz RE. PAVM embolization: an update. AJR 2010;195:837-45.

Govani, Fatima S., and Claire L. Shovlin. Hereditary haemorrhagic telangiectasia: a clinical and scientific review. European Journal of Human Genetics. 2009:17.7: 860-871.

Jameson, John J., and David R. Cave. Hormonal and antihormonal therapy for epistaxis in hereditary hemorrhagic telangiectasia. The Laryngoscope. 2004:114.4: 705-709.amcaseyFuchizaki, Uichiro, et al. Hereditary haemorrhagic telangiectasia (Rendu-Osler-Weber disease). The Lancet . 2003:362.9394:1490-1494.

Sabbà, Carlo, Mauro Gallitelli, and Giuseppe Palasciano. Efficacy of unusually high doses of tranexamic acid for the treatment of epistaxis in hereditary hemorrhagic telangiectasia. New England Journal of Medicine. 2001: 345.12:926-926.

INTERNET
McDonald J, Pyeritz RE. Hereditary Hemorrhagic Telangiectasia. 2000 Jun 26 [Updated 2014 Jul 24]. In: Pagon RA, Adam MP, Ardinger HH, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2017. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1351/ Accessed January 30, 2017.

McKusick VA, ed. Online Mendelian Inheritance in Man (OMIM). Baltimore. MD: The Johns Hopkins University; Entry No: 187300; Last Update: 09/21/2015 Available at https://omim.org/entry/187300. Accessed January 30, 2017.

McKusick VA, ed. Online Mendelian Inheritance in Man (OMIM). Baltimore. MD: The Johns Hopkins University;Entry No: 600376; Last Update:01/31/2014; Available at https://omim.org/entry/600376. Accessed January 30, 2017.

McKusick VA, ed. Online Mendelian Inheritance in Man (OMIM). Baltimore. MD: The Johns Hopkins University;Entry No: 601101; Last Update:12/22/2010; Available at https://omim.org/entry/601101. Accessed January 30, 2017.

McKusick VA, ed. Online Mendelian Inheritance in Man (OMIM). Baltimore. MD: The Johns Hopkins University;Entry No: 615506; Last Update 11/01/2013; Available at https://omim.org/entry/615506. Accessed January 30, 2017.

Source: https://rarediseases.org/rare-diseases/hereditary-hemorrhagic-telangiectasia/

PERMANENT CONTROL OF NOSEBLEEDS IN PATIENTS WITH HEREDITARY HEMORRHAGIC TELANGIECTASIA

Nosebleed (Epistaxis) in Children | Johns Hopkins Medicine

Recurrent familial epistaxis was first recognized by Babbington1in 1865. He reported “hereditary epistaxis” in five generations of a family. Legg in 18762confused the disorder with hemophilia, as did Chiari in 18873and Chauffard in 1896.

4Rendu5distinguished it from hemophilia in 1896.

Meanwhile Osler,6at The Johns Hopkins Hospital, had been observing three patients with the disorder, and in 1901 published his classic description, “On a Family Form of Recurring Epistaxis with Multiple Telangiectases of the Skin and Mucous Membranes.”

After Osler's account, Kelly in 19067presented excellent color drawings of patients with multiple telangiectases. Weber9described a…

Bibliography

  • 1. Babbington BG : Hereditary epistaxis, Lancet 2: 362, 1865. Google Scholar
  • 2. Legg W : A case of hemophilia complicated with multiple naevi, Lancet 2: 856, 1876. Google Scholar
  • 3. Chiari O : Erfahrungen auf dem Gebiete der Hals und Nasenkrankheiten, 1887, Toeplitz & Deuticke, Vienna, pp. 60 et seq. Google Scholar
  • 4. Chauffard MA : Hemophilie avec stigmates telangiectasiqucs, Bull, et mém. Soc méd. d. hôp. de Paris 13: 352-358, 1896. Google Scholar
  • 5. Rendu : Epistaxis répéteés chez sujet porteur de petits angiomes cutanes et muqueuex, Gaz. d. hôp. 69: 1322, 1896. Google Scholar
  • 6. Osler W : On a family form of recurring epistaxis with multiple telangiectases of the skin and mucous membranes, Bull. Johns Hopkins Hosp. 12: 333 (Nov.) 1901. Google Scholar
  • 7. Kelly AB : Multiple telangiectases of the skin and mucous membranes of the nose and mouth, Glasgow M. J. 65: 411-422 (June) 1906. MedlineGoogle Scholar
  • 8. Osler W : On multiple hereditary telangiectases with recurring hemorrhages, Quart. J. Med. 1: 53-58 (Oct.) 1907, plate II. Google Scholar
  • 9. Weber FP : Multiple hereditary developmental angioma ta (telangiectases) of the skin and mucous membranes associated with recurring hemorrhages, Lancet 2: 160-162 (July 20) 1907. Google Scholar
  • 10. Hanes FM : Multiple hereditary telangiectases causing hemorrhage (hereditary hemorrhagic telangiectasia), Bull. Johns Hopkins Hosp. 20: 63, 1909. Google Scholar
  • 11. Snyder LH and Doan CA : Is the homozygous form of multiple telangiectasia lethal?, J. Lab. and Clin. Med. 29: 1211, 1944. Google Scholar
  • 12. Weber FP : Letter to the editor, Brit M. J. 1: 569, 1954. CrossrefMedlineGoogle Scholar
  • 13. Livingston SO and Carr RE : Hereditary hemorrhagic telangiectasia, report of a case with hemothorax, J. Thoracic Surg. 31: 497, 1956. Google Scholar
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Source: https://annals.org/aim/fullarticle/677578/permanent-control-nosebleeds-patients-hereditary-hemorrhagic-telangiectasia

HEALTH: We’ve got a bleeder! My Story living with HHT

Nosebleed (Epistaxis) in Children | Johns Hopkins Medicine

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I’ve been a nose bleeder for as long as I can remember.  I have vague memories as a young boy with my parents holding towels up to my nose trying to get the bleeding to stop.

 I remember a specific instance my freshman year of high school of a major nosebleed during gym that was something a slasher horror film.

 Its wasn’t until years later that I was diagnosed with an inherited disease that causes malformed blood vessels called HHT (Hereditary Hemorrhagic Telangiectasia) also known as Osler-Weber-Rendu syndrome.

It is amazing the things in life that we will suffer through.

 Things that we have learned to incorporate into our daily lives, work around, or just try to avoid instead of attempting to find the root cause and eliminate the problem once and for all.

 I was no different with my constant nosebleeds. Watch a movie, get a nosebleed. Stand in the checkout line, get a nosebleed. Sit in a business meeting, get a nosebleed. In the middle of the night, get a nosebleed.  

I have years of evidence of my nosebleeds.  I’ve lost count the number of times that I have run the room with no warning to others.  The ruined shirts and pillow cases. Blood marks on the seatbelts of my vehicles. The bathroom sink that looks it should be a crime scene investigation.  

I don’t remember what my breaking point was.  I don’t recall the exact moment where I said enough was enough and I had to get a grip on this.  Back in 2007, I finally reached that limit. And it was good that I did, as things were going to get whole lot scarier.

I scheduled an appointment with a local ear, nose and throat doctor or otolaryngologist (ENT).  I remember the first visit distinctly. A quick scope of my nose and he said “hmm, that’s strange”.

 Instead of the normal tree branch shape of blood vessels, he described it as little pods.

But I underwent the typical treatment for a nosebleed which was a chemical cauterization of the surface level blood vessels with powdered silver nitrate.

Let me explain the silver nitrate procedure really quickly.  Both nostrils are hit with a numbing spray and the silver nitrate is put on a something a Q-tip.  It burns, cauterizing the vessels.

I had two main side effects of this treatment. The worst running nose you can possibly imagine that lasted 12-24 hours.  And once the numbing spray wore off, the sensation was if someone lit a match inside my skull.

It wasn’t fun.

I thought the problem was solved. And it was.  For about a year. Then the nosebleeds came back.

We repeated the silver nitrate treatment a couple more times.  Each time with less of a result. Finally, my ENT recommended an outpatient electrical cauterization procedure at the hospital.  The main difference I experienced with this procedure is my nose was packed with a gel substance that was supposed to dissolve in a couple of days.

But the gel didn’t dissolve.  It hardened concrete and was extremely uncomfortable.  

I got an emergency follow up with my ENT who had to use the equivalent of medical needle nose plyers to pull out the now solidified gel packed in each of my nostrils.  Again, not fun.

This triggered a decent nosebleed in the office.  He chose to treat it with more silver nitrate, on the open wound, without numbing spray.  It was a full bonfire going on in my head.

My ENT leaves me in the room for roughly an hour.  And he comes back and says I need to setup an appointment at the Johns Hopkins Hospital HHT Center of Excellence.  He thought I had this rare disease that he hasn’t encountered before called HHT.

At this point we are in 2011, nearly 4 years since my first trip to the ENT.  I wasn’t my normal self. Friends of mine were noticing how I seemed breath doing mundane activities.  Watching TV, I would sit and sweat.

I was bowling and if you saw me it looked I had just run a marathon. I was worn out all the time.

 I didn’t know it at the time, but the fatigue and the shortness of breath turned out to be another symptom of HHT, but in my lungs.

The time for my testing and appointments at Johns Hopkins finally came around mid-2011.  It was at these appointments where I finally understood the potential gravity of HHT and my situation.  I was given an expansive list of tests: brain MRI, chest CT scan, heart echo, EKG and blood work. Also, physical exams from multiple doctors. The Johns Hopkins team is great.

The doctors were looking for arteriovenous malformations (AVM) in my brain and in my lungs.  These are abnormal blood vessels that form in people with HHT. They disrupt normal blood flow and oxygen circulation.  They can have abnormal structures or pool up blood.

And I had several in my lung. Including a big one in my lungs that resembled a small water balloon filled with blood.  My oxygen saturation level was in the 80s. This explained the crazy sweating and being breath.

I was at risk of having a stroke or having my newly discovered AVM burst and hemorrhage.

My procedure to fix the AVM was scheduled within a couple days of the diagnosis. It was in an older building at Johns Hopkins back then.  The prep room and the surgical rooms were divided by the family waiting room. They ran gurney’s right before my procedure. I threw on another gown, so my rear wasn’t hanging out and walked thru the waiting room a boss.  And jumped on the table myself.

The procedure to treat this from the patient prospective is relatively simple.  A catheter goes up through the groin and it’s completely painless. It is similar in nature to angioplasty, but the catheter goes into the lungs.  

I won’t ever forget the first time I sat up after the procedure.  It was getting a shot of adrenaline. My O2 level was back up in the high 90s.   I felt fantastic.

There are some areas too small to be treated.  I just completed my 3-year checkup (May 2019) and will have to undergo the procedure again.  One of the vessels has grown to the point it needs to be dealt with.

I am fortunate at this stage in life to be on the lesser end of the severity scale.  I currently sit between an 1-2 on the 10-point nosebleed severity chart. I must remember to take antibiotics before dentist appointments as I am more susceptible to a blood infection.  That is easier to prevent than to treat.

We have installed a whole home humidifier to help with the dry air during the winter months.  It has greatly reduced the amount of horror film style nose bleeds that I used to get when the dry heated air is cranking full blast during the cold months.

I participated in Johns Hopkins double blind clinical trial a few years ago.  They were testing out different sprays to help with nosebleeds. I get a follow up call from that once a year.  They check in to see how I am doing.

I will be monitored for the rest of my life.  I am crossing my fingers that as I get older, the progression of HHT in my GI tract, liver, etc. will be on the minor side.  But I do expect something. I just turned 40 and I get to experience my first colonoscopy before my next lung treatment later this summer.  Joy.

I urge everyone, if you know someone that has regular consistent nosebleeds to go see visit your nearest HHT Center of Excellence or local ENT if you are not near one. Ask your local ENT if they are aware of HHT.

 If you don’t have nosebleeds, but your oxygen level is lower than a 97%, ask to get checked.  Don’t let an aversion to doctors prevent you from getting a test that could save your life.

It is estimated that 85%-90% of people are currently undiagnosed.

I never got my nose bleed problem solved. And probably never will.  But I know that finally getting checked prevented me from experiencing a potentially deadly outcome.

Don’t wait!

For further information please visit https://curehht.org.  The Cure HHT Foundation website contains information about HHT Centers of Excellence, Physicians, and other resources.  

You will find a donate button, where 93 cents of every dollar funds scientific research, drive awareness campaigns, and help create Centers of Excellence.

John Barker

jbarker@barkerleadership.com

Source: https://www.insidenova.com/culpeper/health-we-ve-got-a-bleeder-my-story-living-with-hht/article_ab97932e-935e-11e9-b0cb-93eae8dc1cf6.html

What to Do:

  • Stay calm and reassure your child.
  • Have your child sit upright in a chair or on your lap, then tilt his or her head slightly forward.
  • Do not have your child lean back. This may cause blood to flow down the back of the throat, which tastes bad and may cause gagging, coughing, or vomiting.
  • Gently pinch the soft part of the nose (just below the bony ridge) with a tissue or clean washcloth.
  • Keep pressure on the nose for about 10 minutes; if you stop too soon, bleeding may start again.
  • Have your child relax a while after a nosebleed. Discourage nose-blowing, picking, or rubbing, and any rough play.

Call the Doctor if Your Child:

  • has nosebleeds often
  • may have put something in his or her nose
  • tends to bruise easily
  • has heavy bleeding from minor wounds or bleeding from another place, such as the gums
  • recently started taking new medicine

Get Emergency Care or Call the Doctor if Bleeding:

  • is heavy, or your child also has dizziness or weakness
  • is the result of a fall or blow to the head
  • doesn't stop after two attempts of applying pressure for 10 minutes each

Different Kinds of Nosebleeds

The most common kind of nosebleed is an anterior nosebleed, which comes from the front of the nose. Capillaries, or very small blood vessels, inside the nose may break and bleed, causing this type of nosebleed.

A posterior nosebleed comes from the deepest part of the nose. Blood flows down the back of the throat even if the person is sitting or standing. Kids rarely have posterior nosebleeds. They're more common in older adults, those with high blood pressure, and people who have had nose or face injuries.

What Causes Nosebleeds?

Most anterior nosebleeds are due to dry air. A dry climate or heated indoor air irritates and dries out nasal membranes. This causes crusts that may itch, then bleed when scratched or picked. Common colds also can irritate the lining of the nose, with bleeding following repeated nose-blowing. Having a cold during dry winter weather is the perfect formula for nosebleeds.

Allergies also can cause problems, as doctors may prescribe medicine (such as antihistamines or decongestants) to control an itchy, runny, or stuffy nose. The medicine can dry out nasal membranes, leading to nosebleeds.

An injury or blow to the nose can cause bleeding, but most aren't a serious problem. But if your child has a facial injury that causes a bloody nose and you can't stop the bleeding after 10 minutes or have other concerns about the injury, get medical care right away.

While nosebleeds are rarely serious, there might be a problem if they happen a lot. If your child gets nosebleeds more than once a week, call your doctor. Usually, frequent nosebleeds are easily treated.

Sometimes tiny blood vessels inside the nose are irritated and don't heal, which happens more often in kids with ongoing allergies or who get a lot of colds. A doctor might be able to help in these cases.

For bleeding not due to a sinus infection, allergies, or irritated blood vessels, a doctor may order tests to find the cause. Rarely, a bleeding disorder or abnormally formed blood vessels could be a possibility.

Can Nosebleeds Be Prevented?

Since most nosebleeds in kids are caused by nose-picking or irritation from hot dry air, using a few simple tips may help your kids avoid them:

  • Keep your child's nails short to prevent injuries from nose-picking.
  • Keep the inside of your child's nose moist with saline (saltwater) nasal spray or gel, or dab petroleum jelly or antibiotic ointment gently around the opening of the nostrils.
  • Run a cool-mist humidifier (or vaporizer) in bedrooms if the air in your home is dry. Keep the machine clean to prevent mildew buildup.
  • Make sure your kids wear protective athletic equipment during sports or other activities that could cause a nose injury.

Even with proper precautions, kids can still get a bloody nose occasionally. So if your child gets a nosebleed, try not to panic. They're usually harmless and are almost always easy to stop.

Reviewed by: Michelle P. Tellado, MD

Date reviewed: September 2019

Source: https://kidshealth.org/en/parents/nose-bleed.html