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Nose Bleeds:

The following information is a collection of advice, solutions, experiences, hit or miss remedies and even wives tales on how our community of Glanzmann’s patients have dealt with their nosebleeds. You should consult with your doctor before attempting any of the following information.

To contribute to this page please contact Helen Smith at curegt@comcast.net


Thread: new member | Forum: General Discussion | Posted by: breezysmom | Date: September 15th, 2004 10:30 PM
He has also had us using Premarin cream (estrogen) in her nose--this is supposed to help thicken the membranes in the nose and elsewhere so that the blood vessels aren't so close to the surface. This is what is supposed to happen naturally during puberty which is supposed to be why things get better with age. Again, this seems to work some???


Thread: New Product on the Market | Forum: General Discussion | Posted by: breezysmom | Date: October 1st, 2004 11:06 AM

Hi Janet,
I actually got this product a few weeks ago (the same day we got our diagnosis) and have tried both the Nosebleed and the topical. It works great on cuts and scrapes. It also works quickly on low nosebleeds, but be sure to leave the applicator (Q-tip works great too) in the nose while pinching for 15 seconds and repeat treatment several times if necessary. Also know that it burns in the nose, but Breanna said she can survive that if it means she can get back to life quicker!

Our Dr said that the two products are exactly the same only the nosebleed one comes with the applicator and to save unused portion to lower cost. I have also heard that they have been using the exact same stuff on horses for many years and you can get the horse brand in large quantities at feed stores for a fraction of the cost, but I haven't checked on that yet.

Hope this helps!


Thread: Bloody Nose | Forum: General Discussion | Posted by: Aaron Woolhiser | Date: September 9th, 2004 06:09 PM

Alicia had nosebleeds that went on and on. I think she had a nosebleed for 17 days straight. We took her into the hospital after a day of solid running and yes it went down her throat and puked up black old blood. Very disgusting!! Then she wouldn't eat either because she of course didn't feel like eating. Most of the time the Ear Nose Throat specialist would come in and pack her nose, but usually it would soak thru it and just start gushing when they took the packing out after 5 days or so. Doses and doses of amicar and nova 7, but usually it would just stop on its own after trying everything and giving her blood transfusions. But it felt like we were just putting blood in to have it flow out her nose! Very discouraging. We never did give her platelets, but we thought about it, a lot.


Thread: Hematoma's | Forum: General Discussion | Posted by: Elise V | Date: September 15th, 2005 02:56 PM

Hi, Eliza is in the clinic--to make a long story short, she was transfused Tuesday with platelets and factor for a 2 day nosebleed (controlled only with a clamp on her nose) I got sick of it and had her treated-she busted open last night--4am--we pinched , put the clamp on and I sent her to school--I called the clinic and they suggested another dose of novo 7-which she just had. (it doesn't bleed if her nose is clamped, but it does when it is removed) anyway my nurse explained to me that the donor platelets are different ages--some are old, some are newer depending on when the donor made them--drawn off at the same time-do the newer ones work better? probably--so there is a mix in the bag. I was told of a product called surigifoam--( cannot get floseal in the hospital anymore) apparently it is an equivalent, but we didn't use it. Hope to get some sleep tonight.


Thread: Nasal Spray with nosebleed | Forum: General Discussion | Posted by: Tami | Date: November 9th, 2005 01:34 PM

Hi everyone,
Has anyone used over-the-counter Anefrin nasal spray with a nosebleed?

Quinn had a little accident on Monday night. He fell in the kitchen and as he fell he pulled a kitchen chair down on top of him. He got huge hematoma on his forehead and a pretty bad nose bleed (the worst we have had so far). We applied ice and pressure immediately and Amicar. He went to bed that night and kept bleeding, so he took him to Akron Children's Hospital yesterday. They did a facial x-ray and gave him one dose of Novo7. He fought both tooth and nail and all of the trauma caused his nose bleed to get worse. We left there yesterday afternoon and he was still bleeding.

The doctor recomended trying the Anefrin spray. It has seemed to work a little, his nosebleed is reduced to a drizzle. We are giving it to him every 12 hours along with Amicar every 6. I am worried that when it wears off it will have an opposite affect. It restricts the blood vessels so the bleed lessens. But I have used nasal spray with a cold and it restricts the vessels and opens the nasal passage, but when it wears off it seems like my nose is 10 time more stuffed up. Just wondering if this is a smart thing to be using or if it will make the situation worse in the long run?

Thanks,
Tami


Thread: Nasal Spray with nosebleed | Forum: General Discussion | Posted by: Missy Z. | Date: November 10th, 2005 09:52 AM

Peter uses Anefrin when he has mild nosebleeds and it seems to work pretty well. When he has a "gusher" it doesn't work at all.

Last night he was up most of the night trying to control a nosebleed and got sick to his stomach once because he swallowed some blood while he was sleeping. The thing that has worked every time for him lately is a "seal-on" nasal sponge (can get over the counter - made by m-doc - definition: expandable PVA sponge impregnated with micro-dispersed oxidized cellulose) which we cover with bacitracin (so it slides in easier). We then put topical thrombin up his nose with the applicator that comes with the prescription kit. The topical thrombin expands the sponge and seems to stop the bleeding immediately. We usually leave the sponge in for 6 - 12 hours (24 recommended). Peter then takes Amicar for a day or two and all is well.

Topical thrombin has been the key to controlling Peter's nosebleeds since it was prescribed to us last winter. It has been wonderful to be able to take care of the nosebleeds on our own without having to go to the ER or doctor's office.

I hope Quinn feels better soon.

Missy Z.


Thread: Novo 7 | Forum: General Discussion | Posted by: Missy Z. | Date: March 14th, 2005 08:30 PM

This past weekend I brought my son (Peter - 12yrs old) to our local emergency room because of a prolonged nosebleed we couldn't seem to get control of. We have been very lucky for the past 5 years or so in that we have been able to control his nosebleeds with pressure. The emergency room packed it and told us to moisten the packing with neo-synephrine every few hours. That didn't work (no real surprise) and the next afternoon we were on our way to the emergency room about an hour and a half away at the hospital where he was diagnosed. We met a wonderful hematologist (new to the practice) who wanted to give Peter Novo 7. Unbelievably his nosebleed stopped while we were there (??) and we didn't need the Novo 7. We were sent off with Amicar and topical thrombin (a kit of a liquid and powder that you mix together and put in nose with packing to help stop nosebleed) but were never told it was an option to keep Novo 7 with us to bring to a closer ER if needed.


Thread: Joint bleed | Forum: General Discussion | Posted by: Chris | Date: August 8th, 2005 11:47 PM

Dan's doing pretty good. He's glad it's still summer even though it's been pretty hot.
He did have a pretty good nose bleed last week that lasted for about 2 days. He finally tried a product that he got from the hospital Social Worker. It's called Urgent QR or Nosebleed QR. He first tried the powder and it slowed down his bleed. Then he used the liquid and it did the trick! Their phone # is 800 722 7559 or website is www.Biolife.com. I understand that it's available OTC but haven't tried to locate it yet. The flyer talks about free samples. Has anyone heard of this product??
How's everyone else doing?? Hope it's a good summer for you.


Thread: Nasal Spray with nosebleed | Forum: General Discussion | Posted by: jmlee | Date: November 9th, 2005 02:29 PM

Hi Tami,
Sorry to hear about Quinn's mishap. Anyway, I have found QR Nosebleed, as Elise mentioned, very helpful lately. Check out the website, try and get some and give it a try.
I'm really surprised that they let you take Quinn home from the hospital while he was still bleeding?!?!? Did they check his hemoglobin? You may want to keep an eye on that so he doesn't get anemic.
I don't know what Anefrin is but it sounds like it's similar to Otrivin which our ENT told us not to use much either because of the same reason you mentioned. I have personally never used nasal sprays with my kids.
Let us know how Quinn fares.
Janet


Thread: Nasal Spray with nosebleed | Forum: General Discussion | Posted by: Helen Smith | Date: November 9th, 2005 03:39 PM

Tami,
We were told to use Afrin or a similar product whenever Julia has a nosebleed but we were told to make sure we gave it to her every 10 hours instead of 12 so that the medicine didn't wear off and let the vessels expand again. Also we always spray some nasal saline in her nose about 20 minutes after the Afrin so that we can help keep her nose moist. Then we coat the nostrils with Vaseline.

I know this is controversial but it works for us and we do this as a last resort. We have a dear friend who is an exceptional ENT and he "very gently" does a chemical cauterization. We've only had to do it 3 times and each time has been successful. We've not tried the QR yet, I would definitely try that next time before doing the cauterization. Also, you do have to consider the patient. If Quinn fights it like you mentioned than sometimes the treatment can do more damage than good. We had to make that call several times when Julia was a baby!



Member

Posts: 85
Registered: Jun 2004 Posted November 10th, 2005 01:25 PM IP

Can anyone give me some ideas on how long you all let your nose or child's nose bleed/ooze before taking further measures to stop it?

We are just wondering if Quinn is on the mend and we just need to give it time, or if we should be doing more. He is acting fine and running around playing, but his nose is still oozing (requiring a wipe about every 1/2 hour). It has been three days since the incedent that caused it and he had 1 dose of Novo7 two days ago. He has been on Amicar since it started. He really won't allow us to do much icing or anything, he fights too much and we are afraid that by getting so upset, he will breakup the clotting he has been able to do.

Thanks!
Tami


Helen Smith
Administrator

Posts: 63
Registered: Mar 2004 Posted November 10th, 2005 04:09 PM IP

Tami, When Julia was Quinn's age and in the same situation with just a light drizzle but acting fine otherwise we would just ride it out. Alan and I feel like sometimes being conservative and letting the little bleeds resolve themselves is better for the child than putting them through the added trauma of treatment. Save the trauma for the big stuff.

That's just our personal approach. Others are very proactive and treat every bleed aggressively which is fine too. I guess it all depends on each individual and each individual bleed.

Good luck!


jmlee
Member

Posts: 105
Registered: Mar 2004 Posted November 10th, 2005 05:38 PM IP

Hi Tami,
I understand the fear of upsetting Quinn and making the bleed worse. To me, wiping once every 1/2 hour for the past 3 days amounts to quite a bit of blood loss. I'm glad to hear that he is acting fine but you do need to think about his hemoglobin dropping further.
I am the type that doesn't let it go on. With my kids, I don't let it go on. But having said that, they don't usually "ooze". It's either a full-blown nosebleed that we need to treat or they don't bleed at all. When they were little, there were a few minor bleeds that we pinched off. I didn't really let the oozing go on. But like Helen said, every child is different, every bleed is different and every family and their approach is different. That's just me.
As for the Novo7, you might find it more effective if you had given more than one dose. Remember that it only lasts in the system for 2 hours. Standard therapy (according to my hematologists) is at least 3 doses (treatment over 6 hours). That might do the trick for the oozing. In any case, I would really bring him in to check his CBC and like I said in the other message, his ferratin level as well.
Keep us posted! Good luck! (I know how frustrating and worrisome it can be!)

Janet


JaniceL
Member

Posts: 33
Registered: Mar 2004 Posted November 10th, 2005 06:33 PM IP

I just thought I would add this to the post.

I don't know about when I was a child because I can't really remember much about nosebleeds when I was a child but... now, whenever I get a nosebleed that's really bad I usually can't stop it with pressure but it really doesn't look like I have a nosebleed if you were to look at me.

But the fact of the matter is that the bleed is so far back in the sinus that the blood is going down the back of my throat.

I remember going to the hospital once to get my nose packed and the ER Dr looked at me and almost laughed when he saw a few drops of blood on the tissue I was using. I told him that blood clots were going down my throat and when he looked, and I coughed up some blood he realized that I wasn't crazy.

I just thought I would add this because when it seems like you see everything isn't always the case with nosebleeds.


jmlee
Member

Posts: 105
Registered: Mar 2004 Posted November 10th, 2005 07:45 PM IP

That's a great point, Janice because YES, the blood can certainly go down the back of the throat. AND it doesn't even need to be a "back" bleed that is further in the nose.
Tami - I'm pretty sure that Quinn isn't bleeding down the back because he would've thrown it up by now after 3 days. The stomach cannot tolerate blood and it comes back up pretty soon. However, the point that Janice is making is an important one because with nosebleeds - especially more serious ones - there is bound to be some going down the throat. What I have come to do is look at the back of my kids throat with a flashlight when they are having a nosebleed because you can actually see if it is dripping back there. And when Quinn is older, he'll also be able to TELL you if he feels it going down his throat (or if he feels blood clots there) and also get used to asking him if his stomach hurts - blood upsets the stomach and he would have a tummy ache.
All the best!
Janet


Tami
Member

Posts: 85
Registered: Jun 2004 Posted November 11th, 2005 08:38 AM IP

Thank you all for your insights! Here's what happened last night. I was getting dinner ready and he started getting really fussy. He just walked around the house wining and crying and making this little coughing noise. He wouldn't play with play-dough (his favorite) or let me hold him. He was miserable. Then two huge clots came out of his nose (I suspect some went down his throat as well because of the coughing)! Then his nose started running mostly clear with just a little bit of blood. He was rubbing his head like he had a headache or earache. So I put him on the couch with a movie and gave him some Tylenol. He started to perk up within about an hour. I put vaseline in his nose when I put him to bed and he woke up perfectly fine this morning. I am giving him some extra iron, because I am concerned about that, but since he seems fine otherwise, I don't think we are going to take him in again.

Janet, I agree, I don't think he swallowed too much because he hasn't thown-up and his poops are not really dark (yet).

Thank you all so much for helping me through this one! This was our first major nosebleed--and I fear this was not even that bad compared to what some of you guys have described--so there may be worse to come. But I am learning with each bleed so I hope I will be better prepared next time.

Take care All!
Tami


Elise V.
Unregistered

Posts:
Registered: Posted November 12th, 2005 09:49 AM IP

Hi Tami--I am glad Quinn's nosebleed has resolved. My hematologist doesn't like prolonged oozing--even a thimble full of blood loss per day adds up (I have learned the hard way). Anemia and depleted iron stores can make the next bleed even more of a life threatening episode. Quinn is small enough that even a little blood loss over time adds up. It is such a learning experience. Did you ever get Quinn's labs drawn?


Missy Z.
Unregistered

Posts:
Registered: Posted November 13th, 2005 11:41 AM IP

Tami:
Peter just finished (hopefully) a nosebleed that has gone on since Wednesday night. The last blood we saw was last night (Saturday night).

He woke up Wed. night with the nosebleed and ended up throwing up - while he was sleeping he swallowed blood. We packed it Thurs. A.M. (topical thrombin & nasal sponge). Removed sponge Thurs. eve, woke up during night bleeding, used pressure, re-packed Fri. AM, removed Fri. eve, OK to go to swim meet Saturday (oozing pink) and started to re-bleed Sat. eve - finally stopped with pressure (thank goodness - all out of thrombin). He also feels much better when he gets the big clots out - but we try to leave them in as long as tolerable so as to not re-start the bleed.

The feeling of relief when the nosebleed finally stops is amazing - for me as Peter's mom but especially for Peter. I can see a huge weight lifted off his shoulders - he can resume his life. I'm trying to get him to spend some time reading your entries -I think it would be good for him to actually see someone else is going through the same thing as he is. I can't even describe how much this message board means to me!

Take care everyone -

Missy Z.


gtgirl
Member

Posts: 122
Registered: Feb 2005 Posted November 14th, 2005 09:12 AM IP

I woke up w/a nosebleed Sunday morning-yuck! My b/f Randy went and got the QR which was our first experience using it. I am not sure if I swabbed my nose right? I did end up sneezing three times. That warmth stinging feeling-it uncomfortable-but tolerable. I ended up bleeding again in the evening and used another QR, but that didn't seem to work? I am not sure if I didn't put enough powder on the applicator or if the bleed was arterial? This nosebleed was the first one I have had in awhile that oozed frontwards. I took two amicar after using QR and went to bed. My nosebleed is finished!

I don't want to give up on QR, but I will have HHS ship me more than one box-geez.

Helen-do you use Avitene Flour for nosebleeds?

Jyll


Helen Smith
Administrator

Posts: 63
Registered: Mar 2004 Posted November 14th, 2005 10:48 AM IP

-New post-
Jyll,
We do use Avitene flour with nosebleeds. I usually take a small piece of gauze and coat it with vasoline to give the flour something to stick to and then put a pinch of the flour on it before packing the nose. You have to be careful about sniffing hard because Julia has swallowed the flour after a hard sniff before. The Avitene comes in a paper-like form also but it's too hard to try to put that in the nose. It's firm like thick construction paper.

The Avitene flour and/or sheet can be used for lip bleeds and to pack into wounds. We've had great success with it so far.

Glad to hear your nosebleed stopped.
Helen

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