Is this the source of infection?

[kimballot]

It will take some effort to convince his pediatrician to order a CT on his sinusus (she hates to expose him to the radiation) but I think, especially after reading your story, that it would be prudent.

 

Can they do an MRI instead? It has less (no?) radiation.

 

Good question - The MRI shows tissue more than spaces, so I don't think it is generally used to look in sinuses. My son is most likely going to be having an MRI now to differentiate the eye muscles from the mucocele since the mucocele seems to be resting on the medial rectus eye muscle. I'll let you know more once I see what the MRI looks like.

 

If my son needs to have routine follow up, I am going to ask if this can be done with an MRI instead. I would prefer that if it is clear enough.

[TessaKrista]

KimBallot,

 

You know, I find this whole discussion about sinuses very interesting. My 7 year old son's pediatrician has always maintained that young children cannot have sinus infections because their sinuses are not developed. I have asked her about my son's sinuses in the past, when he was 4 -6 years old because he always seemed stuffed up, and complained that his ears itched. I was concerned because I used to get frequent sinus issues.

 

I definitely have had sinus issues, and also have itchy inner ears. I have had some sort of antibiotics in the past, flonase, and some prescription headache pills for those sinus heachaches.

 

I guess that I am putting it out there, wondering at what age did their children's pediatricians believe that children could have sinus problems.

[TessaKrista]

Kimballot, thank you for sharing your experience with us.

[smartyjones]

lfran - If they are hard and bony and symmetrical, they are probably part of his skull anatomy. However, I would NOT RISK IT. I would have an ENT check it out, especially if he is prone to allergies or sinus infections. The ethmoid sinus is so tiny, and if it gets blocked in any way it has no choice but to push into the eye orbit.

 

 

kimballot -- thanks for sharing your story. i read it initially but don't think i really got it. how is your son after this surgery?

 

recently, i've somehow dragged this out of my ever-present bag of worries -- you know, i know you all have one as well -- i think this has come back b/c it seems noticeable in my son's t-ball picture. he is making a funny face b/c he made a fake smile and the photographer tried to get him to relax but ended up giving him too many instructions and he just got confused. she somehow did manage to get a pretty cute picture. however - in this picture, which is different from most pictures of him -- his nose looks kind of funny, wide at the top.

 

in the past, i have mentioned to dr's at annual visits to please check his nose b/c it seems to me there are areas that stick out. they've always said it's okay and likely part of his anatomy. now i wonder if perhaps, i should press it further. it's been something i've always noticed about his face, pre pandas - in a worried mother kind of way -- not that anyone else comments on. however, knowing what i know now about worried mothers' ideas. . .

 

when we were first discovering pandas, he did have a sinus ct which showed all sinus cavities infected. after abx, he had another which showed much clearing.

 

is it correct that you found this mucocele on a CT? did you notice anything when looking at his face?

 

thanks!

[Fixit]

Can i ask how you deiced to procede with alleergies...what is doc B's thought on this...?

 

did he say ivig might hlep with allergies..?

[DonnaD]

I am SOOOOOOOOO happy for you!!!!! I also wanted to add that I heard a similar story. Child had a Polip/abscess in sinus, recently removed and child is doing a ton better (TICs drastically reduced). When they biopsied they found Staphylococcus. I believe they are still moving forward with IVIG but suspect they will eradicate any remaining infection easily.

 

I look forward to hearing positive updates regarding your son's recovery.

 

We do Colloidal Silver nasal spray daily.

 

-Wendy

[DonnaD]

I am SOOOOOOOOO happy for you!!!!! I also wanted to add that I heard a similar story. Child had a Polip/abscess in sinus, recently removed and child is doing a ton better (TICs drastically reduced). When they biopsied they found Staphylococcus. I believe they are still moving forward with IVIG but suspect they will eradicate any remaining infection easily.

 

I look forward to hearing positive updates regarding your son's recovery.

 

We do Colloidal Silver nasal spray daily.

 

-Wendy

[DonnaD]

I am SOOOOOOOOO happy for you!!!!! I also wanted to add that I heard a similar story. Child had a Polip/abscess in sinus, recently removed and child is doing a ton better (TICs drastically reduced). When they biopsied they found Staphylococcus. I believe they are still moving forward with IVIG but suspect they will eradicate any remaining infection easily.

 

I look forward to hearing positive updates regarding your son's recovery.

 

We do Colloidal Silver nasal spray daily.

 

-Wendy

[DonnaD]

Recently spoke with friend of family....told me his father suffered sinus infections entire life. He finally had surgery where they biopsied and found strep. My oldest has had chronic sinus issues entire life. Starts as stuffiness along with exacerbation of emotional lability, fatigue, ocd, irritability. Usually ends with some serious strep. Between episodes of throat nearly closing, he will complain of "weird" feeling in throat. Like many of the children I've been reading about on this forum, he also had repeated ear infections that began at 5 months of age. He has also screamed in pain about his right eye intermittently throughout the years. He would grab at it and say "eye, eye, eye" He responded so vicerally, that we just knew it was acute pain. No doc's, thus far, have considered a mycocele. His ENT said that his adenoids probably harbored strep and suggested removal. AFter this post, we will maybe consider it.

[kimballot]

lfran - If they are hard and bony and symmetrical, they are probably part of his skull anatomy. However, I would NOT RISK IT. I would have an ENT check it out, especially if he is prone to allergies or sinus infections. The ethmoid sinus is so tiny, and if it gets blocked in any way it has no choice but to push into the eye orbit.

 

 

kimballot -- thanks for sharing your story. i read it initially but don't think i really got it. how is your son after this surgery?

 

recently, i've somehow dragged this out of my ever-present bag of worries -- you know, i know you all have one as well -- i think this has come back b/c it seems noticeable in my son's t-ball picture. he is making a funny face b/c he made a fake smile and the photographer tried to get him to relax but ended up giving him too many instructions and he just got confused. she somehow did manage to get a pretty cute picture. however - in this picture, which is different from most pictures of him -- his nose looks kind of funny, wide at the top.

 

in the past, i have mentioned to dr's at annual visits to please check his nose b/c it seems to me there are areas that stick out. they've always said it's okay and likely part of his anatomy. now i wonder if perhaps, i should press it further. it's been something i've always noticed about his face, pre pandas - in a worried mother kind of way -- not that anyone else comments on. however, knowing what i know now about worried mothers' ideas. . .

 

when we were first discovering pandas, he did have a sinus ct which showed all sinus cavities infected. after abx, he had another which showed much clearing.

 

is it correct that you found this mucocele on a CT? did you notice anything when looking at his face?

 

thanks!

 

Hi - my son is doing well - I will post an update. I would not worry too much about a mucocele if I were you. I have learned that mucoceles are generally only seen after the anatomy of the sinuses has been disrupted - either by injury or surgery. In my son's case - he had previous surgery. Every doctor who has heard this story or seen the CT scans has said "this is very very rare".

 

However, I would not ignore any sinus issues. The sinuses are so close to the brain and eyes - they really need to be taken care of. When you say you mentioned your concerns to the doctor - was it the regular pediatrican or an ENT? You might want to get copies of his previous CT scans and take them to an ENT. Perhaps they are are just bony anatomy differences - but you should be able to see those on previous CT scans if the are not too old. Is he having any sinus symptoms now?

Edited July 9, 2010 by kimballot

[kimballot]

Can i ask how you deiced to procede with alleergies...what is doc B's thought on this...?

 

did he say ivig might hlep with allergies..?

 

Hi - We switched my son from high dose allergy shots to low dose about 6 years ago and they seemed to be working. Dr. B felt that low dose really could not be effective enough to keep his sinuses clear and he recommended testing for high dose. We stopped his low dose shots and started testing for high dose when we found the mucocele. Then we put everything on hold. I will regroup with Dr. B at the end of the month.

 

Dr. B had said (for us) that we needed to get allergies under control before IVIG. I don't know if that is his order for everyone or just for our case.

[kimballot]

Recently spoke with friend of family....told me his father suffered sinus infections entire life. He finally had surgery where they biopsied and found strep. My oldest has had chronic sinus issues entire life. Starts as stuffiness along with exacerbation of emotional lability, fatigue, ocd, irritability. Usually ends with some serious strep. Between episodes of throat nearly closing, he will complain of "weird" feeling in throat. Like many of the children I've been reading about on this forum, he also had repeated ear infections that began at 5 months of age. He has also screamed in pain about his right eye intermittently throughout the years. He would grab at it and say "eye, eye, eye" He responded so vicerally, that we just knew it was acute pain. No doc's, thus far, have considered a mycocele. His ENT said that his adenoids probably harbored strep and suggested removal. AFter this post, we will maybe consider it.

 

Wow - so much for you to put together. I need to tell you that Mucoceles are very uncommon -(but then again... so is PANDAS -right?)... really, though, they tell me you only see mucoceles in people who have had the sinus architecture disrupted through surgery or trauma. However... that does not mean that your son does not have an ethmoid sinus infection. The ethmoid sinus is very small and is right next to your eye. The next time he complains about eye pain, I would take him to the ENT to get checked out for sinusitis, given his history.

 

Keep us posted!

[kimballot]

UPDATE

 

This post has gotten some action over the past few days, so I thought I'd add a couple of updates.

 

After the initial shock of this thing wore off, were able to get some good advice from Dr. B and the local pediatric ENT and I posted that here

 

http://www.latitudes.org/forums/index.php?...amp;hl=mucocele

 

My son ended up having surgery to drain the mucocele on June 15 and I posted about that here

 

http://www.latitudes.org/forums/index.php?...amp;hl=mucocele

 

He had been doing well since the surgery - though he had so little endurance by the time of surgery I was starting to wonder about rheumatic fever.

 

A the 2-week follow up with ENT I learned that the drainage from the mucocele did test positive for staph. It tested negative for TB. I do not know about other tests as they were pending at the time.

 

My son went to the local amusement park on the 4th of July and started day camp this week (both of which were my goals). However, after 2 days of camp he developed stomach aches and a fever of 104... which Dr B thinks is not related to his sinuses but is likely related to a known mycoplasma exposure (I've posted about that separately)

 

So.. hopefully we are out of the sinus woods for a while. The ENT wants to see my son back in 3 months for check up and says we will do annual CAT scans for at least a few years.

 

I do want to say, again, that mucoceles are very rare and are thought to only happen once the sinus architecture has been disrupted - as in previous trauma or sinus surgery. However, sinus infections are NOT rare. I don't think we understand exactly how sinusitis triggers PANDAS episodes - especially if there is no strep. I do think that anyone with kids with sinusitis history needs to be careful and get those sinuses checked when you see PANDAS symptoms as untreated sinusitis can lead to so many problems including brain infections.

 

Thank you all for your thoughts and well-wishes. I do not even want to begin to think about where I would be today if it were not for this forum. The people on this forum got me to the best doctors, got me asking the best questions, and really pushed me not to give up (see http://www.latitudes.org/forums/index.php?...p;hl=kimballot). The people on this forum are such good role models for me and I can only hope these posts can help someone else to ask the right questions. The person who posts under NEVERGIVEUP has been particularly helpful - and her (assuming it is a female) forum name really says it all!

Edited July 10, 2010 by kimballot