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14 replies to this topic

#1 tapiash

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Posted 15 August 2010 - 11:07 PM

My son is having at least 2 bloody noses a day. We haved tried vaseline,he has a humidifer in is room. I am worried it is something else. Tonight at church he had a really bad one. Worst yet. The good thing is he is not getting a headache with them. Could IVIG cause this? Has anyone on this forum experienced this or know someone who has? Im a little worried, but its probably nothing.
Shirley


#2 peglem

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Posted 15 August 2010 - 11:17 PM

Funny you should bring this up-
Allie does not have a history of nose bleeds, but she started school on Wednesday and has had a nosebleed everyday since. I have no idea what's up w/ that. Her last IVIG was 10 days ago, but she has not had nosebleeds w/ any of the previous ones.

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#3 saidie10

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Posted 15 August 2010 - 11:18 PM

Have you talked with his doctor? I hope it stops soon! Poor thing. I wish I had an answer for you....maybe someone else will have an idea of what may be causing it.

#4 kimballot

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Posted 15 August 2010 - 11:18 PM

My son is having at least 2 bloody noses a day. We haved tried vaseline,he has a humidifer in is room. I am worried it is something else. Tonight at church he had a really bad one. Worst yet. The good thing is he is not getting a headache with them. Could IVIG cause this? Has anyone on this forum experienced this or know someone who has? Im a little worried, but its probably nothing.


Nosebleeds are a pain - I had them too when I was young. My son had chronic nosebleeds for years and we could not find anything to stop them... but we found that they stopped this year when he went on a 10 day course of biaxin in March. No nosebleeds at home for 10 days, and none at school for 10 days. Then they started again until he was started on a course of ominicef in April. The nosebleeds stopped. He has gone from omnicef to azith without a break and he has had no nosebleeds since April. None. I now think that the chronic nosebleeds may have been related to underlying sinusitis that we did not recognize until his sinus CT scan.

I don't know if that helps you... but if you have any other signs of a sinus infection maybe get it checked out.

Parent of teenager with PANS from young age. Mild primary immune deficiency. Chronic sinusitis. Possible bartonella,  Antibiotics.  IVIG. History of severe exacerbations.  Continues to show improvement. There is hope for our children.  Let's work together for early identification and treatment!


#5 trubiano

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Posted 15 August 2010 - 11:22 PM

Wow! My son has been getting nose bleeds too. We haven't done IVIG. Wonder if this is another pandas issue because of inflammation? They only thing that has worked for us is saline nasal spray. He uses it daily, but also when it starts to pour we flush it with the spray a few times and the salt makes it stop quickly.

#6 tapiash

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Posted 15 August 2010 - 11:30 PM

Funny you should bring this up-
Allie does not have a history of nose bleeds, but she started school on Wednesday and has had a nosebleed everyday since. I have no idea what's up w/ that. Her last IVIG was 10 days ago, but she has not had nosebleeds w/ any of the previous ones.



Interesting, Our last IVIG was 9 days ago.We didnt have nosebleeds with our 1st one
Shirley

#7 swim

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Posted 15 August 2010 - 11:35 PM

Our son went through a period when he suddenly started getting one bloody nose a day. They would come on suddenly and they would be gushers. After about a week or 10 days of this, we went to the doctor. She took one look in his nose and said there was some sort of infection - did not know if it was strep related, but there was something. He did not have any symptoms of being sick. Maybe there is some sort of infection in the sinuses.

#8 tapiash

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Posted 15 August 2010 - 11:35 PM


My son is having at least 2 bloody noses a day. We haved tried vaseline,he has a humidifer in is room. I am worried it is something else. Tonight at church he had a really bad one. Worst yet. The good thing is he is not getting a headache with them. Could IVIG cause this? Has anyone on this forum experienced this or know someone who has? Im a little worried, but its probably nothing.


Nosebleeds are a pain - I had them too when I was young. My son had chronic nosebleeds for years and we could not find anything to stop them... but we found that they stopped this year when he went on a 10 day course of biaxin in March. No nosebleeds at home for 10 days, and none at school for 10 days. Then they started again until he was started on a course of ominicef in April. The nosebleeds stopped. He has gone from omnicef to azith without a break and he has had no nosebleeds since April. None. I now think that the chronic nosebleeds may have been related to underlying sinusitis that we did not recognize until his sinus CT scan.

I don't know if that helps you... but if you have any other signs of a sinus infection maybe get it checked out.



He is currently on Zithromax but now I am wondering if we should try something else. Maybe they wil stop soon. Thanks for sharing.
Shirley

#9 tapiash

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Posted 15 August 2010 - 11:40 PM

Our son went through a period when he suddenly started getting one bloody nose a day. They would come on suddenly and they would be gushers. After about a week or 10 days of this, we went to the doctor. She took one look in his nose and said there was some sort of infection - did not know if it was strep related, but there was something. He did not have any symptoms of being sick. Maybe there is some sort of infection in the sinuses.



Can he have an infection in his nose even if he is taking Zithromax? I also wonder if this is PANDAS related.
Shirley

#10 peglem

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Posted 15 August 2010 - 11:47 PM

Funny you should bring this up-
Allie does not have a history of nose bleeds, but she started school on Wednesday and has had a nosebleed everyday since. I have no idea what's up w/ that. Her last IVIG was 10 days ago, but she has not had nosebleeds w/ any of the previous ones.

Answering my own post, to call myself a nimrod! Allie has had a bit of nasal congestion so I've been using the Nasonex prescribed by her pediatrician a few months back. I just looked up the SEs- yep, nosebleed and I hadn't realized it was a steroid spray, which will make her more susceptible to viral infections. Dang, I'm usually so good about looking up every med before I give it- but this time, I thought since its not systemic, it'd be no biggie. But, the really nimrod part is that I had forgotten that she had a bad reaction to this @ 4 years ago. (in my defense, she's been on so many things since then that its difficult keeping track!) She ended up with double shiners from kneeing herself in the eyes last time, and, since I was assured by the urgent care physician and the pharmacist that it couldn't be related to the Nasonex, I kept using it (I'm certain she had strep at the time as well!) and she ended up in the emergency room with a hematoma- her entire head was "squishy" from banging. Okay, so only saline in the nose from now on, and xylitol.

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#11 tapiash

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Posted 15 August 2010 - 11:55 PM


Funny you should bring this up-
Allie does not have a history of nose bleeds, but she started school on Wednesday and has had a nosebleed everyday since. I have no idea what's up w/ that. Her last IVIG was 10 days ago, but she has not had nosebleeds w/ any of the previous ones.

Answering my own post, to call myself a nimrod! Allie has had a bit of nasal congestion so I've been using the Nasonex prescribed by her pediatrician a few months back. I just looked up the SEs- yep, nosebleed and I hadn't realized it was a steroid spray, which will make her more susceptible to viral infections. Dang, I'm usually so good about looking up every med before I give it- but this time, I thought since its not systemic, it'd be no biggie. But, the really nimrod part is that I had forgotten that she had a bad reaction to this @ 4 years ago. (in my defense, she's been on so many things since then that its difficult keeping track!) She ended up with double shiners from kneeing herself in the eyes last time, and, since I was assured by the urgent care physician and the pharmacist that it couldn't be related to the Nasonex, I kept using it (I'm certain she had strep at the time as well!) and she ended up in the emergency room with a hematoma- her entire head was "squishy" from banging. Okay, so only saline in the nose from now on, and xylitol.


You are not a nimrod. It is very dificult to keep up with medications. Both natural and prescribed. There is no way I could remember 4 yrs ago. I can barely rember last week . So in my opinion, you are doing pretty darn good:)
Shirley

#12 karam

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Posted 16 August 2010 - 06:05 AM

I had posted a few months ago asking if other's children had lots of nose bleeds. Our daughter did. They stopped after she started abx (with a few exceptions). I mentioned it when we saw Dr. B and he said she probably had a sinus infection. I echo the suggestion of having your doctor check your child for a sinus infection. Not sure whether it can happen while he is already on abx or not, but it's worth checking out.

Personally, I also wondered about whether the inflammation could be causing the nosebleeds as well - all that pressure. We had also been giving our daughter ibuprofin. Is your son taking that as well. This is just my gut feeling - no medical expertise at all....

Kara

DD 11: Severe OCD & other PANDAS symptoms Fall 2009, PANDAS dx spring 2010; Bartonella dx spring 2011; Lyme diagnosis Fall 2011.
On various abx combos for three years. Stopped abx in March 2013. Doing GREAT!!!!!
DS 13: Emotional Lability past 4 years; suspected Lyme spring 2011, confirmed January 2012.
On abx since Feb. 2012. Doing really well, too.
Myself: Lyme dx Jan 2012. Treating. Improving.


#13 suzan

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Posted 16 August 2010 - 06:23 AM

My dd was having nose bleeds last year too. I was very worried about it and took her to the doc. He thought it was from the Flonase so we stopped it and they did go away eventually. Used a humidifier and that finally helped too. I think for her, once the area was irritated, it took a while to heal. Hope you find out what is causing your ds's nose bleeds!

Peglem - Sounds like your dd is having the same thing as mine!

Edited by Suzan, 16 August 2010 - 06:25 AM.

Me - diagnosed with hashimoto thyroiditis in 1996, lyme and parsonage turner syndrome in 2010, mthfr mutation in 2013

dd10 and dd11 - diagnosed with sensory processing disorder in 2006, gluten intolerance in 2007, pandas in 2008, lyme in 2010, mthfr mutation in 2013

 


#14 vickie

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Posted 20 August 2010 - 08:38 AM

Wow! Looks like it the time of year for nose bleeds. I must have missed this thread last week. My non-PANDAS son has been having nosebleeds, congestion, etc. Started giving Claritin and it wasn't helping. Finally, took him to the dr today and he has a sinus infection....right for the start of school. Like my PANDAS son last year, he got an allergy induced sinus infection. Anyway, the dr said the nose bleeds were caused by the congestion and irritation of the sinus infection. I actually looked this thread up because he was also prescribed Nasonex. Which I don't understand how docs decide what brand to prescribe.In Jan, he gave my other son Flonase. Is Nasonex and Flonase comparable or are they different? Is it okay to give my non-PANDAS son Nasonex?

#15 peglem

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Posted 20 August 2010 - 11:18 AM

I just looked it up and both Flonase and Nasonex are steroid, so don't know what the difference is. But, I stopped Allie's Nasonex and no more nose bleeds. I'm sticking with Xclear and saline!

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.





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