Do your PANDAS kids get "sinus infections" ?

[Kbossman1]

I've become very fascinated with this forum over the past week.....SO helpful! I was going over my dd(7)'s bloodwork and paperwork from when we went to see an infectious disease dr at the children's hopital in Chappell Hill this summer......and came across the paper from the Radiology Reports and remembered that she had Pansinusitis in June 2010, and then I remembered that I had seen a post on sinus infections or maybe a child with pansinusitis on this forum. Just wondered if anyone else with a pandas child had seen this type of infection....or if anyone knew if strep in the sinuses would cause this kind of infection. I did ask this dr about PANDAS as I do every dr we meet, and he just like all the others told me that he didn't believe my dd had pandas. We were sent to this infectious disease dr because of recurrent strep infections.......but her AntistrepO was 38, and DNase B AB was <70. I'm guessing this dr didn't think pandas b/c of those numbers.....? don't know. I was told that her sinus infection, which the dr couldn't detect just by looking at her.....they only knew because of the xray, was really bad, and the dr wanted to put her on Clyndamiacin for 6 weeks. She refused to swallow this tiny pills ( fear of choking) and she also refused to drink this liquid ( which by the way was $140) so the dr finally changed her medicine to something similar, but I can't remember the name. This dr told me that he thought the recurrent strep was coming from her sinuses and that the anitbiotics prescribed each time she had strep throat were enough to kill the bacteria in her throat but not take care of this horrible sinus infection, so that's why she needed the meds for 6 weeks. Infact, I have 4 children; ages 7,6,4, and 3.....they all 4 have recurrent strep infections, and all 4 were seen by this infectious disease dr, bloodwork and sinus xrays.....All 4 had normal bloodwork, and a sinus infection. I had also told this dr that I suspected that they had strep while we were there b/c of the behavior that I was noticing at home, and other complaints from the children like tummy aches and head aches along with very bad breath.

All 4 kids get strep alot.....and none of them have your regular symptoms like fever or anything. Infact, the rapid strep test would come back positive, but then each pediatrician would look at them and say that their throat didn't look "that" bad. I'm telling you this because this crazy dr, called my pediatrician and told them that the kids all had sinus infections......and his guess was that they were all 4 carriers and there was no need to test my children for strep because he didn't believe it was affecting them and they should not be treated, so they should stop preforming the test all together. WHAT????? The strep would be gone.....sometimes we would go back to test again and make sure it was gone.....but it would always come back. So I didn't return to see this dr after the 6 weeks and hundreds of dollars spent on antibiotics b/c I had basically decided that I thought he was crazy.

Sorry for rambling on...but what I was trying to get at is, have your pandas children ever had strep in their sinuses, or pansinusitis? I'm a newbie.....and we've been on this road for over 2yrs, but I have yet to find a dr that will actually help me. Since my dd was 4 she has had recurrent strep, sinus infections, a sensory disorder (out of the blue) dramtic mood swings, strange fears about running out of gas, elevators, nightmares, seperation anxiety, what the pyschologist at Duke likes to call the "just right" type of OCD, and continued to get strep even after T&A at age 5. It's extremely frustrating because when she's on Omnicef or Zithromax.....she's a very happy little girl.....we feel like we have our "real" daughter back. Then the 10 or 14 days is up.....and we're right back to where we were. I finally wrote a letter to our dr telling him that I fully believe she has PANDAS and after seeing how she reacts to being on antibiotics, I know that's all we need. I have begged him to put her on something for a longer term ( like 6 months) to see how she does. That's when he sent us for the bloodwork first, and because it all came back normal.....he now says no pandas.....and thinks I'm crazy! Anyways, just wondered about the strep in the sinuses. I took her back this week, we are right in the middle of an exacerbation and they said that her strep test ( which I had to demand that they do) was negative and so was the culture. I can't help but wonder if they would lie to me since I know that the infectious disease dr thinks that they shouldn't even test them......it's hard to believe because for the past 2 years whenever I've seen this behavior.....the rapid test has always been positive, if not....the culture would come back positive. So right now I have no answers, no antibiotics, and no dr who cares.....and a child in the middle of crisis! Thanks for anything that you can let me know to help.

[Joan Pandas Mom]

Can you go to one of the docs that treat PANDAS listed on this site? It sounds like PANDAS to me.

[PhillyPA]

Both of my sons have low titers.

 

You can absolutely get strep in the sinuses.

 

I would also recommend a pandas specialist. My boys see Dr. L in Bethesda, MD.

Edited November 7, 2010 by PhillyPA

[peglem]

The chronic strep, without typical symptoms, without elevated titers, only behavioral manifestations, is exactly how my daughter was for years. Several specialists said it was only "carriage". And you know what? Maybe it was carriage- but definitely not benign. I am blessed w/ a pediatrician who respected the input of those specialists, but acted on the fact that the behavioral symptoms responded to abx.

If you let us know what area you live in, somebody can probably help you find a doctor nearby who will help, and if you can get to one of the PANDAS specialists.

And it might be a good idea to get the Cunningham test done and share that with your physician.

[kimballot]

Kbossman - welcome to the forum! You bring up many interesting questions. If I am reading your post correctly, your daughter has a history of unusual (PANDAS-like) behaviors and when she has these you have found positive strep throat cultures, a clinical diagnosis of pansinusitis, but negative titers for strep.

 

This is not an uncommon pattern. Some of our kids have poorly functioning immune systems. As a result, they do not mount a typical response to strep, so their titers do not rise, even though they have the infection. Because their immune systems do not function properly, the infection rages on, causing lots of inflammation, and sending the immune system into overdrive as it tries to fight the infection.

 

My own son had severe chronic sinusitis for many years, without elevated titers. He did not even have positive throat cultures, so it took a long time for us to get a PANDAS dignosis. He actually now has PITANDS (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorder). That means that he gets PANDAS symptoms with Any type of infection - even viruses - and also with allergies. Our PANDAS doc has helped us to understand how this all works for our son.

 

I would agree with others on this board that you should consider seeing a PANDAS doc. You should get a full blood workup for your son, including mycoplasma and immune levels so you know what you are dealing with. That will hep you to make sense of this all.

 

Best of luck !

[Worried_Dad]

I actually did a poll on this a while back because I'd noticed so many parents on here mentioning sinus infections for their PANDAS/PITAND children. More than half of the respondents said their kids did in fact have sinus infections. Here's the link:

 

http://www.latitudes.org/forums/index.php?showtopic=6421

[cobbiemommy]

DS, 11, is even now being treated for a sinus infection (strep) with Bicillin shots. I kept telling every doc that he always seemed to have a sinus issue-like trying to clear something out that he just couldn't get. Finally, doctor #11, did a nasal swab. She put him on the Bicillin and it is getting better. Stick to your guns-you live with your child so you know them best.

[Joan Pandas Mom]

We went to the ENT a few days ago. My son was having bloody noses a couple times a day for about 2 weeks about 5 weeks ago. The ENT said he had either strep or staph in his nose and recommended Bactroban antibiotic ointment for 1 week. I mention to him that he was on Azithr and had been on it for 3 1/2 weeks, prior to that was on high dose Augmentin. He said that will help. Evidentially it wasn't helping because he had this infection. Thank God for Dr. B. I e-mailed him, he changed his script from 500 Azithro a day to 300 mg Omnicef twice a day. I'm hopeful this change will make a difference. Both Dr.'s recommended a cat scan in three weeks if it doesn't improve. My ? is how will I know if it improves? You can't see the sinuses unless you have a cat scan. Will the Bactroban Ointment take care of the visible infection, still leaving a sinus infection deep in his sinuses? My son NEVER has visible symptoms. His pedi did a throat culture and ASO titer on him 6 yrs ago when this started because he had just heard about PANDAS. He did not have any strep symptoms at that time.

[kmom]

Welcome! Just know you are not crazy and you know your child better than any doctor who meets with them for a matter of minutes and scoffs at a PANDAS diagnosis. And, there are doctors out there willing to help and who will completely understand. Problem is, you have to get in touch with those doctors who devote their time to treating PANDAS kids, otherwise you will have doctors who look at you like you are nuts. The nice thing about this forum is that people will help get you to the good docs who can help you. To get to see your "real daughter" while on Zithromax is huge. Unfortunately, PANDAS isn't as clear cut from one child to the next. If I stuck with one opinion from a book I read where your child needs high titers, I don't know where I'd be right now. Both of my kids have extremely low titers but my DD had stubborn a strep infection for months (positive strep cultures on record) b/f PANDAS symptoms and my DS never had a strep inf. but many sinus inf's and also tested positive on culture when we tested family--dr. figured he was a carrier b/c asymptomatic for strep throat but he did have a sinus inf. around time we tested the whole family with a throat culture. So I think DS's sinus inf. were the culprit for his PANDAS issues. I always knew the smell on his breath. It irked me when we moved just over a year ago and the ped. would say, "It's a virus/cold." Then I'd always be back a week later saying, it's worse and he'd finally Rx an abx. It was like pulling teeth. I think we always kept PANDAS in check for him earlier on b/c the ped where we used to live always gave him Zithromax when he suspected a sinus inf. So in hindsight the PANDAS symptoms--ODD, OCD, joint and stomach pain were never constant and we just thought of him as our child who gave us a run for our money at times b/c sometimes (now I realize after Zithro for sinus issues or prednisone for croup) he was happy, kind little boy. There are so many variables to think of when I try to put pieces together from the last year...moving to a colder climate, H1N1 vaccine last year (all 3 PANDAS docs wonder how that played a role in this), new ped not willing to Rx an abx easily so strep lingered longer, etc.

 

I am not sure where you are located but if not w/in a reasonable distance to a top PANDAS doc, you can always have a phone consult with one of them to get the ball rolling and get long term abx. It's not cheap but boy it's refreshing to see a positive change in your child. Our PANDAS specialists have not only dx'd PANDAS but realized the children have a specific immuno deficiency to strep. The goal in the long run is to minimize PANDAS symptoms and build them a more robust immune system with IVIg treatments.

 

Best of luck on your journey!

[MarcyJ]

My son has PANS he has strep and chronic sinusitis . Both cause cause PANS. They are both genetic reversible conditions.