Is this the source of infection?

[kimballot]

Many of you have heard my story. 13 year old son who has had chronic and severe allergies and sinusitis since birth, PANDAS symptoms every time he was off high-dose antibiotics, symptoms decreased substantially after tonsils were removed in 2004, only about 4 sinus infections since then, but PANDAS symptoms still present with sinus infection and now with viral infections as well. Most recently, he had a PANDAS flare up with loss of executive functions after the flu (H1N1?) in November. Local docs all said it was NOT PANDAS as he did not have strep throat, and recommended SSRIs. After consulting with Dr. Trifiletti, Dr. Bouboulis, and Cunningham test, decided it was, indeed PANDAS. Dr. B is treating due to mild immune deficiencies, low S Pneumoniae titres and (now we've learned) elevated C3Ds.

 

Dr. B's strategy was to

 

1. Evaluate the sinuses fully and remove all infection first (he was thinking the sinuses are the source of the problem)

2. Re evaluate allergies and treat appropriately

3. Move to IVIG once infection is cleared and allergies are under control.

 

 

Ok... step one - sinuses. Had a sinus CT scan as we'd not had one in several years. My son's last sinus surgery was in 2004. Just got the results of the newest sinus CT, and my son has a very large mucocele in his ethmoid sinus - right next to his eye. It is so large even I can see it. Apparently, this is an enclosed glob of infection that has been hanging out for quite some time. In fact, the bone between the sinus and the eye is actually worn away and the mucocele is putting pressure on his eye. (so, all the headaches and complaints of pain in his eye were NOT because his mother refused to put him on an SSRI? and when I told the doctor that his face looked asymmetrical to me - I was not just an anxious mother grasping at straws??)

 

I was very upset about all of this as this means yet another sinus surgery (this will be #3), and also means that I have not been a good mommy as this thing has been growing there for a very long time (no one will say exactly how long, but they say "more than several months"- does that mean a year or more?). I am also upset because it is right next to his eye. Sinus surgery is always risky with eyes, but now I am even more afraid because there is no bone between the mucocele and the eye.

 

I met with a relative who is a radiologist last night who helped to turn things around for me and said I should be rejoicing because we found the source of the infection. He is right, and now I am feeling both happy and frightened. He seems confident that, while tricky, it can be safely removed and says these mucoceles are not uncommon.

 

I really do not like sharing my son's personal information on the internet. However, I am doing this because I know so many of you are battling PANDAS and trying to find the source of the infection. I just want to reiterate the importance of finding a good PANDAS specialist, and the importance of being persistent and thorough. I know some people have wondered why Dr. B seems to focus on sinuses often.... in our case it is truly a blessing that he did!

 

We go back to Dr. B soon and I will see what he says about this. I am sure we will have many decisions to make in the next few weeks, but I am just trying to focus on being grateful we found this now before it caused any permanent damage.

 

Thank you for reading all of this!

[tpotter]

Thanks so much. I think I will ask our dr. to check my son's sinuses again, too. It started in his ethmoid sinuses!

[familyof4]

Thanks for posting this. You've added one more thing to my list for the doctor when we go in a couple of weeks. My son had a sinus infection that was so bad as a toddler it resulted in a seizure. Now at age 7 he still does nasal washes 2x a day. I noticed a drastic decrease in PANDAS symptoms when we started him back on Nasonex. I too question if his sinusus aren't the root cause of his PANDAS. 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.

 

Thanks for sharing - you've no doubt helped dozens of other PANDAS kids with your post.

[Fixit]

Thanks for sharing - you've no doubt helped dozens of other PANDAS kids with your post.

 

 

Absolutely........

 

and don't feel like a bad mom.....it's the docs who poo poo the parents

[Joan Pandas Mom]

Thank you for sharing this. It is something to definately keep in mind. An ENT told me that it might be interesting to do a antibiotic flush of the sinuses with my DS a while back. I never did, but might in the future. My friend's son (doesn't have PANDAS) has been dizzy for 2 weeks now. Pedi thought it was a sinus infec. and put on Azithromicin. It didn't help so ENT did an MRI and he does have a sinus infection and put him on Biaxin. His only symptoms was dizziness and light sensitivity.

[simplygina]

You can't feel guilty about knowing this! How on earth would you? Isn't that why we go to doctors? You were a good mommy for finding him the right doctor who is now helping him. Surgery is always scary, but it will be fine. And then the infection will be gone as well as the headaches!

 

I think my son's issues also revolve around the sinuses. the interesting this is that he really doesn't present with sinus problems, i.e. constant congestion or runny nose. however, i have noticed that when he does get a virus, or allergies, or major exposure to something that irritates his respiratory tract, he comes down with strep.

 

most kids who have strep don't have accompanying congestion in the sinuses. when i was a child i also had strep a lot and the first thing my mom would ask was if my nose was stuffy or runny. if it wasn't, she'd take me in for strep. if it was she figured it was drainage down the back of my throat. i've also found a few of the he webmd type websites that state congestion doesn't normally accompany strep.

 

well for my son, it does. ds had strep so often, and his tonsils were always, always so large that after i kept inquiring about them our pediatrician decided we should meet with an ENT. the day before the ENT appt. ds told me his throat felt weird (he always said "weird" with strep, never that it hurt), otherwise he seemed fine. i sent him to school but a little voice was nagging me that it was strep AGAIN. he called mid-morning because he'd forgotten his library books and i asked if his throat felt better. he said he felt fine but it still felt weird. i decided to run him to the express clinic. and it turned out to be strep (which the N.P. was sure it wasn't because ds felt fine) plus double ear infections. the next day at our ENT appt. he confirmed the strep throat, ear infections & told us ds had a bugger of a sinus infection as well.

 

taking the tonsils out helped tremendously for about a year.

 

this february we the same thing happened. he told me his throat felt weird. the next day his ears hurts, and then the sinus infection set in. we went to the dr. who ran a culture that came back negative, but ds was already on full strength augmentin, so i think that, plus the lack of tonsils, is why he didn't have strep throat. but i'm positive he had strep causing the ear infections & sinus infection. we switched to omnicef, which cleared the ears but made ds an emotional and mental nightmare, then Dr. T. prescribed Biaxin & his sinuses cleared up FINALLY.

 

my theory is that he had intracellular strep lurking in the sinuses. whenever an opportunity arose it would go to town in the sinuses, ears & throat.

 

i'm really curious about this muecocele though. ds has complained the last year or so about a pain in one eye about once a week. that same eye also bounces around a bit when we do the neurological reflex test stuff at the doctors. he just got glasses with a really minor prescription, but i figured it was enough that maybe it was causing his eye to become fatigued. but the glasses haven't helped. this really is something i should check into. I love this forum! I love that we can all share what we are learning and help each others kids!

 

I wonder if i should make an appt. with the ENT or a neurologist? i'm over his pediatrician lately. he hasn't come out and said i'm nuts, but he sure isn't jumping on board with me to figure this all out either.

[sf_mom]

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

[FallingApart]

This is so wonderful to find the source of infection! COngrats!

 

I do have a question though and I think that your situation fits this question perfectly. If your child is on HIGH does, possibly long term antibiotics, shouldn't it remove the source of infection? How could this muecocele still exist with so much antibiotics running through his body?

 

I feel we are in the same situation with DD except we don't know the source of infection. Clearly you son does still have an infection even with the antibiotics, but that is so scary to me. I am not sure if this is a question I'm asking or just a frustration I am venting over PANDAS in general. Would antibiotics ever kill the muecocele or dies it have to be removed?

 

Finding the source of infection is HUGE! Congrats!!!

[kimballot]

This is so wonderful to find the source of infection! COngrats!

 

I do have a question though and I think that your situation fits this question perfectly. If your child is on HIGH does, possibly long term antibiotics, shouldn't it remove the source of infection? How could this muecocele still exist with so much antibiotics running through his body?

 

I feel we are in the same situation with DD except we don't know the source of infection. Clearly you son does still have an infection even with the antibiotics, but that is so scary to me. I am not sure if this is a question I'm asking or just a frustration I am venting over PANDAS in general. Would antibiotics ever kill the muecocele or dies it have to be removed?

 

Finding the source of infection is HUGE! Congrats!!!

 

I am sorry - I was not clear in my post. My son was on high dose antibiotics nearly non stop from 4 months of age until he had his tonsils out at 7 years old in 2004. Since then he has only been on antibiotics a handful of times for sinus infections. Each time we treated him until he appeared to be clear - no post nasal drip, mocosa looks pink, no gagging with eating, no fever etc. My son has had fungal sinus infections in the past due to the large amounts of ABX, so we have been very cautious with ABX.

 

The problem with this mucocele is that it is somewhat encapsulated, so it just kept growing, but it never burst and drained. It is kind of like an abcess or a cyst (though I am sure they have distinct properties that I am not aware of).

 

Over the last few years, we only checked blood work once when he had PANDAS symptoms - and we only checked ASO titer, becuase we really did not know what we were doing. ASO was not eleveated, so everyone said "No PANDAS"... therefore, no ABX.

 

Once I called Dr. T in March he ordered the RIGHT blood work and it showed (among other things) elevated DNASE B. This could have been elevated for years for all I know. He has been on Abx since then (along with diflucan for fungus), and the DNASE B is coming down... My son's face also looks a little more symmetrical to me since the prednisone and all the ABX....

 

I don't know if ABX is enough, though, to erradicate thie mucocele. It may remove the infection within it, but I would think this sac will still be there.

Edited May 20, 2010 by kimballot

[kim]

(so, all the headaches and complaints of pain in his eye were NOT because his mother refused to put him on an SSRI? and when I told the doctor that his face looked asymmetrical to me - I was not just an anxious mother grasping at straws??)

 

Another child with a serious medical condition, where SSRI was the recommendation, hau? I'm so sorry you have to go through this frustration (been there too).

 

I just took a quick peek at mucoceles and the info regarding the levels of PGE-2 kinda jumped out. I'm wondering if IVIG will even be necessary after this is treated?

I guess I would wonder about the length of time that this was forming and how that correlates with symptoms.

 

You probably have covered all of this and more, but these were just a few things that I glanced at

 

 

http://www.bcm.edu/oto/grand/110291.html

 

Mucoceles develop from inadequately removed sinus mucosa in a poorly drained space. They expand locally and erode bone due to the secretion of high levels of PGE-2. Pyoceles form when mucoceles become secondarily infected.

 

from the same page.....His final culture results revealed alpha hemolytic streptococcus (not pneumococcus).

 

 

http://www.medterms.com/script/main/art.asp?articlekey=24892

 

Prostaglandin E2: One of the prostaglandins, a group of hormone-like substances that participate in a wide range of body functions such as the contraction and relaxation of smooth muscle, the dilation and constriction of blood vessels, control of blood pressure, and modulation of inflammation. Prostaglandin E2 (PGE-2) is released by blood vessel walls in response to infection or inflammation that acts on the brain to induce fever. The enzyme mPGES-1 is involved in the production of PGE2 and is an important "switch" for activating the fever response

 

http://en.wikipedia.org/wiki/Prostaglandin_E2

 

Like other prostaglandins, dinoprostone can be used as an abortifacient. It is a direct vasodilator, relaxing smooth muscles, and it inhibits the release of noradrenaline from sympathetic nerve terminals. It does not inhibit platelet aggregation, where PGI2 does.

 

http://en.wikipedia.org/wiki/Sympathetic_nervous_system

[kimballot]

I just took a quick peek at mucoceles and the info regarding the levels of PGE-2 kinda jumped out. I'm wondering if IVIG will even be necessary after this is treated?

I guess I would wonder about the length of time that this was forming and how that correlates with symptoms.

 

You probably have covered all of this and more, but these were just a few things that I glanced at

 

 

http://en.wikipedia.org/wiki/Sympathetic_nervous_system

Kim - no 0 I have not really had much of a chance to look into the nuances of this issue. Thank you so much for looking this up and posting it. I hadn't thought about the immonological impact of all of this. I am anxious to see what Dr. B says too.

 

I will check out the links you posted. That was so kind of you. I am still just walking around in shock today and having trouble focusing on much of anything at all!

[EAMom]

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.

[EAMom]

You are an awesome (and smart) mommy!! Thanks for posting your story.

 

I am so glad you persisted and the right docs led you to the answer! Yay!

 

I also do hope Dr. B. writes/publishes some of his PANDAS cases one day (soon)...

Edited May 20, 2010 by EAMom

[lfran]

Thank you so much for sharing. It seems to me that you are doing wonderfully for your son, and also for those of us you are sharing with.

 

I have been trying to see if what you posted might apply to my DS8. I recently noticed bony "spurs" or protuberances on the both sides of his nose, right at the top, next to where his eyes are. You can even see them, and they are hard and bony to the touch. Each is about the size of a pea -- maybe a little smaller.

 

Is this related to what you are reporting? Our pediatrician and orthopedist were not too concerned, but also admitted that they really didn't know. I have an ENT for myself -- I think I will ask him -- but was hoping you might be able to shed some light on this too.

 

Thanks!

 

-- lfran

 

 

Many of you have heard my story. 13 year old son who has had chronic and severe allergies and sinusitis since birth, PANDAS symptoms every time he was off high-dose antibiotics, symptoms decreased substantially after tonsils were removed in 2004, only about 4 sinus infections since then, but PANDAS symptoms still present with sinus infection and now with viral infections as well. Most recently, he had a PANDAS flare up with loss of executive functions after the flu (H1N1?) in November. Local docs all said it was NOT PANDAS as he did not have strep throat, and recommended SSRIs. After consulting with Dr. Trifiletti, Dr. Bouboulis, and Cunningham test, decided it was, indeed PANDAS. Dr. B is treating due to mild immune deficiencies, low S Pneumoniae titres and (now we've learned) elevated C3Ds.

 

Dr. B's strategy was to

 

1. Evaluate the sinuses fully and remove all infection first (he was thinking the sinuses are the source of the problem)

2. Re evaluate allergies and treat appropriately

3. Move to IVIG once infection is cleared and allergies are under control.

 

 

Ok... step one - sinuses. Had a sinus CT scan as we'd not had one in several years. My son's last sinus surgery was in 2004. Just got the results of the newest sinus CT, and my son has a very large mucocele in his ethmoid sinus - right next to his eye. It is so large even I can see it. Apparently, this is an enclosed glob of infection that has been hanging out for quite some time. In fact, the bone between the sinus and the eye is actually worn away and the mucocele is putting pressure on his eye. (so, all the headaches and complaints of pain in his eye were NOT because his mother refused to put him on an SSRI? and when I told the doctor that his face looked asymmetrical to me - I was not just an anxious mother grasping at straws??)

 

I was very upset about all of this as this means yet another sinus surgery (this will be #3), and also means that I have not been a good mommy as this thing has been growing there for a very long time (no one will say exactly how long, but they say "more than several months"- does that mean a year or more?). I am also upset because it is right next to his eye. Sinus surgery is always risky with eyes, but now I am even more afraid because there is no bone between the mucocele and the eye.

 

I met with a relative who is a radiologist last night who helped to turn things around for me and said I should be rejoicing because we found the source of the infection. He is right, and now I am feeling both happy and frightened. He seems confident that, while tricky, it can be safely removed and says these mucoceles are not uncommon.

 

I really do not like sharing my son's personal information on the internet. However, I am doing this because I know so many of you are battling PANDAS and trying to find the source of the infection. I just want to reiterate the importance of finding a good PANDAS specialist, and the importance of being persistent and thorough. I know some people have wondered why Dr. B seems to focus on sinuses often.... in our case it is truly a blessing that he did!

 

We go back to Dr. B soon and I will see what he says about this. I am sure we will have many decisions to make in the next few weeks, but I am just trying to focus on being grateful we found this now before it caused any permanent damage.

 

Thank you for reading all of this!

[kimballot]

Thank you so much for sharing. It seems to me that you are doing wonderfully for your son, and also for those of us you are sharing with.

 

I have been trying to see if what you posted might apply to my DS8. I recently noticed bony "spurs" or protuberances on the both sides of his nose, right at the top, next to where his eyes are. You can even see them, and they are hard and bony to the touch. Each is about the size of a pea -- maybe a little smaller.

 

Is this related to what you are reporting? Our pediatrician and orthopedist were not too concerned, but also admitted that they really didn't know. I have an ENT for myself -- I think I will ask him -- but was hoping you might be able to shed some light on this too.

 

Thanks!

 

-- lfran

 

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.

Edited May 25, 2010 by kimballot