Jump to content
ACN Latitudes Forums

Our visit with Dr. Bouboulis


Recommended Posts

We have noticed a difference in our son since my husband has been treated for strep BUT........ We did a couple of other things at the same time so its hard to determine what is helping.

 

Since last IVIG.

 

* Treated DH for strep... still on antibiotics

* Decided to resolve 'leaky gut' and consulted with nutritionist that has worked with many auto-illnesses (high dose: Probiotic, Bentonite Clay and B-12)

* Kept our son on the higher dose antibiotic

 

-Wendy

Link to comment
Share on other sites

  • Replies 39
  • Created
  • Last Reply

Top Posters In This Topic

You know, I've seen parent after parent on here report that their PANDAS kids were diagnosed with sinus infections, often triggering exacerbation. I started a thread on it at one point because it seemed so commonplace. My son has complained of congestion since this PANDAS nightmare started, an MRI showed signs of sinus infection, and our local doc diagnosed sinus infection for him a couple of times (but of course would only prescribe the 5-day zithro Z packs).

 

Coincidentally, I've had persistent congestion and sinus issues for several years now... and my ASO titer recently came back at 303.

 

I'm really curious as to whether there's a particularly nasty, virulent, hard-to-reach and hard-to-kill strain of GAS that likes to hang out in those damned sinus cavities!

 

 

When my son had a sinus infection he wasn't bothered at all by it. I only suspected it since he had an on and off cold for so long. The ped believes his may have been caused by allergies, but it was still infected and he still got antibiotics for it. After the first round, it was still there so Flonase was added to the Augmentin to help drainage.

 

Not sure if you missed my point. But I'm wondering how there would be no symptoms of the 'sinus infection' if you have one. Worried Dad, you had symptoms or suspicions, so I understand that. and Vickie, even tho your boy wasn't bothered by it, he had something to make you suspect, cold and a little mucous I think you said before, ....It is hard to dx a sinus infection even when one has the symptoms of sinsu pressure, mucous, etc.....not all of those symptoms are necessarily an 'infection'..... I don't know, either it is an 'infectiton' or its not, just wondering.....so wouldn't the abx take care of that?

 

momwithocdson, if you have sinus problems, I certainly can see looking into that aspect since there are some symptoms, so yea, let's see if there is a strep problem, but I don't get assuming strep is hiding in there if there are no symptoms.

Link to comment
Share on other sites

But I'm wondering how there would be no symptoms of the 'sinus infection' if you have one.

 

i think that it is that there are some type of symptoms of sinus trouble but as with so much with pandas, they are not 'typical' symptoms.

 

here's what i mean: my son had a strange eye ache that would come on suddenly for a few days with no other symptoms in spring of '08. no other cold/sinus symptoms. the ped found nothing and suggested could be occular migraines. suggested that if it persisted for a few more days, see opthamologist. it went away. at this time, i myself had a sinus infection.

 

fast forward approx 6 mths to fall '08 - ds begins with pandas behaviors. has high titers and + culture. in feb '09, we switched peds. new ped believes based on symptoms, very high titers and exam - redness and bothered nostrils, not necessarily indicating 'infection' - to further investigate sinus infection with CT. CT shows all 6 sinus cavities infected. he didn't have abnormal symptoms other than what you'd think 'normal' for a 4.5 year old through the winter. i think here the ped was a bit 'fishing with a yacht' -- for him, it was an experienced hunch that paid off with an infection.

 

i guess what you're saying, faith, is that there was 'something' that made the ped think sinus infection? is that your question - why look for a sinus infection without any inkling of 'something'?

 

based on titers and CT, ped thinks he may have had infection for quite some time - possibly back 6 mths to eye ache issue. also thought he could be experiencing headaches but maybe not expressing it or maybe not knowing what it was if it was low-level chronic (because of young age). ds denied any headaches. his issue at this time was behavior. he'd have runny noses but he was 4 1/2, so not out of the ordinary; no compaints of sinus pressure/headaches/any other difficulty.

 

i'm not sure where the answers lie - do we need to be doing full batteries of tests on everyone - like dr. t said 'fishing with a yacht'. but where do we draw the line of picking up what is the trouble with a particular kid?

Link to comment
Share on other sites

Well you did have some reason to keep fishing and it took the catscan to prove it. so I was just wondering how that could be deduced by just looking in there. you can see the sinuses, I thought you couldn't. and if they are inflammed, then I would think you'd feel something. You say your boy had eye pain and some drip, that is one of the symptoms at least. and there were high titers, etc. .... I just think it takes more than a look see to dx inflammation and strep.

Edited by faith
Link to comment
Share on other sites

Well, if you have had that swelling for so long, to you it's just life. You don't even realize that you're not suppose to feel like that and you eventually may become accustomed to it, especially in a child. So, the child would not tell the parent that soemthing is wrong becasue they themself wouldn't know it.

 

My 3 and 6 year old probably wouldn't tell me that they have a headache or that they feel congested.

Edited by Vickie
Link to comment
Share on other sites

I wish they did complain. I have to interrogate them about possible symptoms! Then the response is always..."I don't know". Makes me want to scream.Well, except for the 3 year old. She wants to go to the doctor so she can get a sticker. She'll gladly get her throat swabbed for a sticker.She's weird.

 

Well then you're lucky :)

 

momaine's dd is 13.........

Edited by Vickie
Link to comment
Share on other sites

Okay, this is eerily familiar when you mention "eye ache."

 

We had a young boy in our neighborhood (8 at the time) who complained to his parents of pain / pressure behind his eye. Family doc couldn't explain it. Then one night, it came to a head, and the pain became so excruciating that they rushed him to the ER when they noticed that his eye actually seemed to be bulging somewhat.

 

The hospital ended up doing emergency surgery on him. Found a raging infection in the sinus cavity that was literally expanding to the point that it was on the verge of bursting. They said if they had not operated to relieve the pressure, the abscess could have burst with potentially lethal results. After the boy was stable, the surgeon told the mom that they had a young girl with the same problem but had lost her when the abscess burst before she received medical attention.

 

Very scary. The mom told us that the doc said it was strep... but she did not recall what strain, or if the doc even said. So don't know if it was GAS. But this happened around the same time our PANDAS son first became ill. The timing has always made me wonder....

 

 

i think that it is that there are some type of symptoms of sinus trouble but as with so much with pandas, they are not 'typical' symptoms.

 

here's what i mean: my son had a strange eye ache that would come on suddenly for a few days with no other symptoms in spring of '08. no other cold/sinus symptoms. the ped found nothing and suggested could be occular migraines. suggested that if it persisted for a few more days, see opthamologist. it went away. at this time, i myself had a sinus infection.

 

fast forward approx 6 mths to fall '08 - ds begins with pandas behaviors. has high titers and + culture. in feb '09, we switched peds. new ped believes based on symptoms, very high titers and exam - redness and bothered nostrils, not necessarily indicating 'infection' - to further investigate sinus infection with CT. CT shows all 6 sinus cavities infected. he didn't have abnormal symptoms other than what you'd think 'normal' for a 4.5 year old through the winter. i think here the ped was a bit 'fishing with a yacht' -- for him, it was an experienced hunch that paid off with an infection.

 

i guess what you're saying, faith, is that there was 'something' that made the ped think sinus infection? is that your question - why look for a sinus infection without any inkling of 'something'?

 

based on titers and CT, ped thinks he may have had infection for quite some time - possibly back 6 mths to eye ache issue. also thought he could be experiencing headaches but maybe not expressing it or maybe not knowing what it was if it was low-level chronic (because of young age). ds denied any headaches. his issue at this time was behavior. he'd have runny noses but he was 4 1/2, so not out of the ordinary; no compaints of sinus pressure/headaches/any other difficulty.

 

i'm not sure where the answers lie - do we need to be doing full batteries of tests on everyone - like dr. t said 'fishing with a yacht'. but where do we draw the line of picking up what is the trouble with a particular kid?

Link to comment
Share on other sites

Worried Dad - yuck! That is quite a story about the eye! Sinus infections are nothing to take lightly. I do have a friend who ended up with a brain abscess from a sinus infection.

 

You are correct that sinus infections often do come up on this forum. My son is ONLY sinus infections - has never had a positive throat culture and ASO titers have never been elevated. What is it??? Is it still strep? I wish I knew. He's had a couple of sinus surgeries, but he was on ABX so long at that point that the only thing they cultured was fungus (which BTW is a huge cause of sinus infections, so please be sure to talk with your doc about doing an antifungal if you have chronic sinusitis).

 

We need an article in print that looks at the relationship between sinus infections and behavioral exacerbations in PANDAS kids. The focus on strep throat is too narrow and we are missing many kids. I know my local docs have refused to back me on the PANDAS idea because of the lack of strep throat.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share


×
×
  • Create New...