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My daughter is 11 and is diagnosed with PANDAS. We have been to one specialist after another and the news keeps getting worse and worse. For the PANDAS parents: she was punched in the head at school and had NO history of even one nosebleed. She has had nosebleeds everyday since for the past 8 days? Are nosebleeds associated with PANDAS? And if so, can someone explain the agression or lack thereof?

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My daughter is 11 and is diagnosed with PANDAS. We have been to one specialist after another and the news keeps getting worse and worse. For the PANDAS parents: she was punched in the head at school and had NO history of even one nosebleed. She has had nosebleeds everyday since for the past 8 days? Are nosebleeds associated with PANDAS? And if so, can someone explain the agression or lack thereof?

Could have sinus problems and the punch loosened something? Is she on any medications? My daughter sometimes gets nosebleeds- but especially when she gets steroid nasal sprays. I don't understand what you mean by the "aggression or lack thereof." Is your daughter aggressive? Or does she have a lack of aggression?

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Hi,I have never seen nosebleeds as a symptom associated with Pandas I would think it most likely to be from the punch,or at least something other than Pandas. Welcome to this forum, its full of good advice and info.Infact you can do a search for nosebleeds to see if anyone has brought it up before.Good luck.

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My daughter is 11 and is diagnosed with PANDAS. We have been to one specialist after another and the news keeps getting worse and worse. For the PANDAS parents: she was punched in the head at school and had NO history of even one nosebleed. She has had nosebleeds everyday since for the past 8 days? Are nosebleeds associated with PANDAS? And if so, can someone explain the agression or lack thereof?

Could have sinus problems and the punch loosened something? Is she on any medications? My daughter sometimes gets nosebleeds- but especially when she gets steroid nasal sprays. I don't understand what you mean by the "aggression or lack thereof." Is your daughter aggressive? Or does she have a lack of aggression?

 

She is on Klonopin .5 mg at bedtime but no nasal sprays...Aggression of nosebleeds: if they worsen, tend to go and come, or a one time situation? Also does any of yall babies ever complain of their legs "locking up" as in, stiffing to the point of not being able to move them like they are frozen stiff?

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Hi,I have never seen nosebleeds as a symptom associated with Pandas I would think it most likely to be from the punch,or at least something other than Pandas. Welcome to this forum, its full of good advice and info.Infact you can do a search for nosebleeds to see if anyone has brought it up before.Good luck.

 

Really? I am really curious to see what to do to help her? Thank you.

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My daughter is 11 and is diagnosed with PANDAS. We have been to one specialist after another and the news keeps getting worse and worse. For the PANDAS parents: she was punched in the head at school and had NO history of even one nosebleed. She has had nosebleeds everyday since for the past 8 days? Are nosebleeds associated with PANDAS? And if so, can someone explain the agression or lack thereof?

 

My PANDAS dd has had nosebleeds. In fact she went through a 1-2 week period a couple of years ago where she had them on a regular basis (almost daily?).

 

Some meds could cause clotting problems (eg. advil, fish oil, prozac). Also, a respiratory infection (lots of sneezing, nose blowing) can cause more nosebleeds. But also nosebleeds can be normal in kids (or releated to dry air). I got nosebleeds from time to time when I was a kid. It does seem my PANDAS dd has gotten a lot more nosebleeds in her life than my non-pandas dd. But, I don't know if that has anything to do with PANDAS! Nose bleeds haven't been a problem recently. I think she's only had 1 in the past year.

 

If your dd ever picks her nose (which can be an ocd thing) a rheumatologist once told us that nose-picking can cause strep to be released into the blood stream....just something to be aware of!

 

Is your dd on abs? Where are you located?

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My daughter is 11 and is diagnosed with PANDAS. We have been to one specialist after another and the news keeps getting worse and worse. For the PANDAS parents: she was punched in the head at school and had NO history of even one nosebleed. She has had nosebleeds everyday since for the past 8 days? Are nosebleeds associated with PANDAS? And if so, can someone explain the agression or lack thereof?

 

My son has lots of sinus problems and has had periods of months at a time with daily nosebleeds. Last year (when he was finally diagnosed with PANDAS) we noted that the nosebleeds stopped when he started on the right antibiotic. Now I use nosebleeds as one measure of his overall sinus health. If we see nosebleeds (more than once in a one week period), then I start to pay attention to other PANDAS symptoms that signal sinus flare up (urinary frequency, difficulty sleeping at night), along with standard sinus symptoms like stuffy nose and change in taste sensation. This helps the immunologist and ENT address the sinuses before it turns into a big infection.

 

It is interesting that your daugther's started with the punch in the head. Was her nose injured in with the punch? How soon after the punch did the bleeding begin? Have you had a doctor look up her nose to see if they can tell where the bleeding is coming from (that is - does it look like irritation in the nose itself, or is it dripping down from further up in the sinus?)

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My daughter is 11 and is diagnosed with PANDAS. We have been to one specialist after another and the news keeps getting worse and worse. For the PANDAS parents: she was punched in the head at school and had NO history of even one nosebleed. She has had nosebleeds everyday since for the past 8 days? Are nosebleeds associated with PANDAS? And if so, can someone explain the agression or lack thereof?

 

My PANDAS dd has had nosebleeds. In fact she went through a 1-2 week period a couple of years ago where she had them on a regular basis (almost daily?).

 

Some meds could cause clotting problems (eg. advil, fish oil, prozac). Also, a respiratory infection (lots of sneezing, nose blowing) can cause more nosebleeds. But also nosebleeds can be normal in kids (or releated to dry air). I got nosebleeds from time to time when I was a kid. It does seem my PANDAS dd has gotten a lot more nosebleeds in her life than my non-pandas dd. But, I don't know if that has anything to do with PANDAS! Nose bleeds haven't been a problem recently. I think she's only had 1 in the past year.

 

If your dd ever picks her nose (which can be an ocd thing) a rheumatologist once told us that nose-picking can cause strep to be released into the blood stream....just something to be aware of!

 

Is your dd on abs? Where are you located?

Her MRI showed a retention cyst in the right maxillary and she is set to go to an ENT next week. Her MD said the blood is coming from further back than she can see (so not from the nostrils itself from a lesion)? They started after the blow? She is not on abs at this time, she just finished a 10 day dose a week ago. We are from Simmesport Louisiana and we go in a couple of weeks to a Pediatric Rheumatolgist in New Orleans.

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My son has lots of sinus problems and has had periods of months at a time with daily nosebleeds. Last year (when he was finally diagnosed with PANDAS) we noted that the nosebleeds stopped when he started on the right antibiotic. Now I use nosebleeds as one measure of his overall sinus health. If we see nosebleeds (more than once in a one week period), then I start to pay attention to other PANDAS symptoms that signal sinus flare up (urinary frequency, difficulty sleeping at night), along with standard sinus symptoms like stuffy nose and change in taste sensation. This helps the immunologist and ENT address the sinuses before it turns into a big infection.

 

It is interesting that your daugther's started with the punch in the head. Was her nose injured in with the punch? How soon after the punch did the bleeding begin? Have you had a doctor look up her nose to see if they can tell where the bleeding is coming from (that is - does it look like irritation in the nose itself, or is it dripping down from further up in the sinus?)

 

No history of sinus probs? But MRI did reveal a retention cysts in right maxillary. Her nosebleeds started after the blow to the back of the head, no injury to nose directly. Her MD says its coming from further back than she can see? She sees ENT next week, so hopefully they can enlighten me more? Also, my daughter doesn't sleep at night, nightmare, hallucinations, stating her heart stopped and she becomes short of breath and her legs "lock up". Has anyone had these experiences? I am new to this and would appreciate al the help I can get. Thank you all!!

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No history of sinus probs? But MRI did reveal a retention cysts in right maxillary. Her nosebleeds started after the blow to the back of the head, no injury to nose directly. Her MD says its coming from further back than she can see? She sees ENT next week, so hopefully they can enlighten me more? Also, my daughter doesn't sleep at night, nightmare, hallucinations, stating her heart stopped and she becomes short of breath and her legs "lock up". Has anyone had these experiences? I am new to this and would appreciate al the help I can get. Thank you all!!

 

Oh wow! I thought we were the only family with this problem! Do you have the MRI report? The retention cyst is probably a retention cyst in the maxillary sinus. I believe this is basically the same thing as a mucocele, which was what my son had in his ethmoid sinus. His was nasty because it had been there for a year or more and was actually eroding the bone to his eye. Hopefully your was caught sooner. Yes - this would signal sinus problems and could easily be underlying the nosebleeds AND the PANDAS symptoms. Is the blood coming from the right nostril? The blow to the head may have just loosened things a bit to allow the blood to drain out, or it may have not been related at all.

 

It is good that you are going to ENT soon. My son had endoscopic sinus surgery and it was very beneficial. His PANDAS symptoms decreased SO much after the surgery. You can read my story in these links. PM me if you have questions.

 

http://www.latitudes.org/forums/index.php?showtopic=8511&st=0&p=70352&hl=mucocele&fromsearch=1entry70352

 

http://www.latitudes.org/forums/index.php?showtopic=8648&st=0&p=71680&hl=mucocele&fromsearch=1entry71680

 

Also - has your daughter had an immune work up to see if she has any immune deficiencies like low IgA or low IgG s. pneumoniae titers?

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No history of sinus probs? But MRI did reveal a retention cysts in right maxillary. Her nosebleeds started after the blow to the back of the head, no injury to nose directly. Her MD says its coming from further back than she can see? She sees ENT next week, so hopefully they can enlighten me more? Also, my daughter doesn't sleep at night, nightmare, hallucinations, stating her heart stopped and she becomes short of breath and her legs "lock up". Has anyone had these experiences? I am new to this and would appreciate al the help I can get. Thank you all!!

 

Oh wow! I thought we were the only family with this problem! Do you have the MRI report? The retention cyst is probably a retention cyst in the maxillary sinus. I believe this is basically the same thing as a mucocele, which was what my son had in his ethmoid sinus. His was nasty because it had been there for a year or more and was actually eroding the bone to his eye. Hopefully your was caught sooner. Yes - this would signal sinus problems and could easily be underlying the nosebleeds AND the PANDAS symptoms. Is the blood coming from the right nostril? The blow to the head may have just loosened things a bit to allow the blood to drain out, or it may have not been related at all.

 

It is good that you are going to ENT soon. My son had endoscopic sinus surgery and it was very beneficial. His PANDAS symptoms decreased SO much after the surgery. You can read my story in these links. PM me if you have questions.

 

http://www.latitudes.org/forums/index.php?showtopic=8511&st=0&p=70352&hl=mucocele&fromsearch=1entry70352

 

http://www.latitudes.org/forums/index.php?showtopic=8648&st=0&p=71680&hl=mucocele&fromsearch=1entry71680

 

Also - has your daughter had an immune work up to see if she has any immune deficiencies like low IgA or low IgG s. pneumoniae titers?

The MRI did show a a retention cyst in the right maxillary! The blood is coming from both nostrils? She has had so many changes and the hallucinations are what are the most frightening next to her seizure like movements (but without losing consiousness (sp)). They took heart off her OCPD meds b/c Dr say sometimes they aggrivate the PANDAS, but her hallucinations are worse than ever!

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No history of sinus probs? But MRI did reveal a retention cysts in right maxillary. Her nosebleeds started after the blow to the back of the head, no injury to nose directly. Her MD says its coming from further back than she can see? She sees ENT next week, so hopefully they can enlighten me more? Also, my daughter doesn't sleep at night, nightmare, hallucinations, stating her heart stopped and she becomes short of breath and her legs "lock up". Has anyone had these experiences? I am new to this and would appreciate al the help I can get. Thank you all!!

 

Oh wow! I thought we were the only family with this problem! Do you have the MRI report? The retention cyst is probably a retention cyst in the maxillary sinus. I believe this is basically the same thing as a mucocele, which was what my son had in his ethmoid sinus. His was nasty because it had been there for a year or more and was actually eroding the bone to his eye. Hopefully your was caught sooner. Yes - this would signal sinus problems and could easily be underlying the nosebleeds AND the PANDAS symptoms. Is the blood coming from the right nostril? The blow to the head may have just loosened things a bit to allow the blood to drain out, or it may have not been related at all.

 

It is good that you are going to ENT soon. My son had endoscopic sinus surgery and it was very beneficial. His PANDAS symptoms decreased SO much after the surgery. You can read my story in these links. PM me if you have questions.

 

http://www.latitudes.org/forums/index.php?showtopic=8511&st=0&p=70352&hl=mucocele&fromsearch=1entry70352

 

http://www.latitudes.org/forums/index.php?showtopic=8648&st=0&p=71680&hl=mucocele&fromsearch=1entry71680

 

Also - has your daughter had an immune work up to see if she has any immune deficiencies like low IgA or low IgG s. pneumoniae titers?

The MRI did show a a retention cyst in the right maxillary! The blood is coming from both nostrils? She has had so many changes and the hallucinations are what are the most frightening next to her seizure like movements (but without losing consiousness (sp)). They took heart off her OCPD meds b/c Dr say sometimes they aggrivate the PANDAS, but her hallucinations are worse than ever!

 

 

If she has sinusitis then both sides can have inflammation. Do you have the MRI report? Does it say inflammation in both sides? I am just guessing here that there is some sinus stuff going on. Why did they do the MRI in the first place?

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No history of sinus probs? But MRI did reveal a retention cysts in right maxillary. Her nosebleeds started after the blow to the back of the head, no injury to nose directly. Her MD says its coming from further back than she can see? She sees ENT next week, so hopefully they can enlighten me more? Also, my daughter doesn't sleep at night, nightmare, hallucinations, stating her heart stopped and she becomes short of breath and her legs "lock up". Has anyone had these experiences? I am new to this and would appreciate al the help I can get. Thank you all!!

 

Oh wow! I thought we were the only family with this problem! Do you have the MRI report? The retention cyst is probably a retention cyst in the maxillary sinus. I believe this is basically the same thing as a mucocele, which was what my son had in his ethmoid sinus. His was nasty because it had been there for a year or more and was actually eroding the bone to his eye. Hopefully your was caught sooner. Yes - this would signal sinus problems and could easily be underlying the nosebleeds AND the PANDAS symptoms. Is the blood coming from the right nostril? The blow to the head may have just loosened things a bit to allow the blood to drain out, or it may have not been related at all.

 

 

It is good that you are going to ENT soon. My son had endoscopic sinus surgery and it was very beneficial. His PANDAS symptoms decreased SO much after the surgery. You can read my story in these links. PM me if you have questions.

 

http://www.latitudes.org/forums/index.php?showtopic=8511&st=0&p=70352&hl=mucocele&fromsearch=1entry70352

 

http://www.latitudes.org/forums/index.php?showtopic=8648&st=0&p=71680&hl=mucocele&fromsearch=1entry71680

 

Also - has your daughter had an immune work up to see if she has any immune deficiencies like low IgA or low IgG s. pneumoniae titers?

The MRI did show a a retention cyst in the right maxillary! The blood is coming from both nostrils? She has had so many changes and the hallucinations are what are the most frightening next to her seizure like movements (but without losing consiousness (sp)). They took heart off her OCPD meds b/c Dr say sometimes they aggrivate the PANDAS, but her hallucinations are worse than ever!

 

 

If she has sinusitis then both sides can have inflammation. Do you have the MRI report? Does it say inflammation in both sides? I am just guessing here that there is some sinus stuff going on. Why did they do the MRI in the first place?

 

MRI was ordered b/c of the "seizure like" activity she was presenting. EEG showed no seizures, MRI showed right side of brain inflammed? Also showed retention cyst on right maxillary. They then did more bloodwork and after her results came in and it showed her ASO to be 768, he then ordered DNASEB. I will find out the results Monday on that test. She has just been exhibiting alot of these symptoms for years now? I'm new to this so I asm still trying to gather all the information and advice that I can and I thank yall.

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so, just asking, as i have never heard of this and just looked it up online.

 

if a mucocele is formed due to chronic infection in the sinus, and say this chronic infection is strep but is now bound up or enclosed in mucous, is this the same as biofilm?

 

If so, i imagine it would create the same difficulties in diagnosing and the need for biofilm protocol to treat the infection within the mucocele? (using enzymes or sodium edta along with the abx?)

 

would love to know if you have had any experience with this kind of treatment.

thanks.

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so, just asking, as i have never heard of this and just looked it up online.

 

if a mucocele is formed due to chronic infection in the sinus, and say this chronic infection is strep but is now bound up or enclosed in mucous, is this the same as biofilm?

 

If so, i imagine it would create the same difficulties in diagnosing and the need for biofilm protocol to treat the infection within the mucocele? (using enzymes or sodium edta along with the abx?)

 

would love to know if you have had any experience with this kind of treatment.

thanks.

 

Amyjoy -

 

That is a good question. I don't think it is the same thing a biofilm. My understanding of biofilm is that it is a slimy substance that is the result of antigens morphing to try to trick the body from finding them. A mucocele occurs when there is swelling in the sinus mucosa and it pinches off to form a bubble - kind of like a water balloon.

 

Mucoceles are usually sterile (not infected), but they can be infected. If the mucocele is small and the mucus can flow around it then there is really no need to do anything with them. The problem is if they get big - then they can cause damage to the sinus bone. Also, depending on the location and the size they could cut off the flow of mucus, which then sets up a nice environment for bacteria to grow into an infection. Unfortunately, there is not much of a blood supply in the sinuses, so antibiotics have a hard time doing their job in the sinuses.... so if the mucocele is damaging the sinus bone or is the causing an infection around it or is actully infected itself... then it needs to be removed.

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