Is it PANDAS?

[saidie10]

If my son has not had strep symptoms since his last bout of strep in July of last year (we had his tonsils out in August) and that was the bout where we saw the dramatic increase in OCB, could he still have elevated titer levels now (7 months later) that could indicate PANDAS?

 

His OCB seems to be currently controlled with zoloft which he has been on since July of 2009 (or are his symptoms just less because the strep is gone?), and his motor and vocal tics have been very mild for the past 6 months or so with only occasional flare ups that seem brought on by stress. So basically, it was during one of his last bouts of strep (he swabbed positive 6-7 times in a 10 month period during which we were working with a Neurologist separately trying to figure out what was happening with our son and these new facial and body tics that had progressed from eye blinking to multiple complex motor tics and weird behavior issues) that we saw what seemed like exaggerated OCB. It was a dramatic bathroom urination frequency thing along with other germ issues that was crazy and the night before we started him on the zoloft he literally stood in front of the toilet for 3 hours saying he had to pee over and over again. He has also been dealing with attention problems, poor impulse control, hyperactivity, mood swings, is irritable, has rage behavior, sleep issues, difficulty with handwriting and we have seen his math skills decrease as the school year has progressed.

 

I want to have his blood tested for these strep ?antibodies? to see if it is all his strep infections that caused the tics and behavior issues we are dealing with. His Neurologist did not think at the time that there was a connection between the two when we were trying to diagnose the tics and behaviors but that was before the OCB craziness. She wanted to know if his tics and behaviors wore worse or better during, before or after the strep infection and quite honestly he was having strep so many times that it all ran together and I really could not pinpoint that! It was not until I read up more on PANDAS and realized the crazy OCB started about 4 days after a positive strep swab that we could be on to something and may need to do this testing.

 

Is it too late to tell by the blood work though?

 

Thanks for any input!

 

Cindy

[thereishope]

Welcome.

 

How is your son's OCD and other behavior changes now? Have you ever taken him for a follow up strep test since the last known infection? Is he on any meds besides the Zoloft right now?

 

 

Here is a link to a PANADS FAQ page

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

On it, there is a whole section devoted to Anti-DNAseB and ASO titers. If you are thinking about having the blood test done, I would first do a rapid and culture. If either is +, you don't have to do the blood test.

 

Just so you know, the Anti-DNAseB and ASO titers is not a diagnostic test for PANDAS, There are some PANDAS kids that do not show a rise in either.

 

There is a research study being done by Dr Cunningham that is the closest thing there is to a diagnostic test. The ideal is to have this done during an exacerbation of symptoms.

[saidie10]

Thanks for the response. Right now his OCB is very under control but he is on the zoloft so I guess it would be hard to tell if he is having episodes of increased OCB since that is controlling it? I am so confused over all of this but my motherly instinct is telling me there is something to it. His tics like I said have been pretty mild for the last 6 months with only increased motor tics related to increased stress. He has had motor tics since eye blinking started sometime in the Fall of 2008. Towards the end of that year the other tics began showing themselves and got progressively worse during the winter and going into the spring months of 2009. During that time between fall 2008 and summer of 2009 is when he had all the positive strep cultures so you know we were continually treating with antibiotics. We went to the first Neurologist in June of 2009 about the tics. At that time we did NOT see any OCB. I asked about the PANDAS because of all the strep but they did not see a correlation. It wasn't until that strep infection in July that the OCB just seemed to show up, plus the fact that now I find out the frequent urination thing is common in PANDAS OCD freaks me out because that was his OCB. At the time though of course both Neurologists said, no they did not see a connection so I didn't even think twice about just putting him on zoloft.

 

As for other behaviors, the poor impulse control and behavior issues in school and at home persist and of course some days are better than others. So many things I am reading about PANDAS just sounds like I am reading about my child though!

 

Why would I do a culture first? Isn't the culture checking for an active infection, while the blood test is testing for antibodies? I am confused about that. I do worry about the timing for the blood test in that he is not exhibiting exaggerated symptoms right now, but wonder if his titer levels are elevated above normal since we still have the tics and these other issues.

 

Thanks again for your response and any further help is appreciated!

 

Welcome.

 

How is your son's OCD and other behavior changes now? Have you ever taken him for a follow up strep test since the last known infection? Is he on any meds besides the Zoloft right now?

 

 

Here is a link to a PANADS FAQ page

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

On it, there is a whole section devoted to Anti-DNAseB and ASO titers. If you are thinking about having the blood test done, I would first do a rapid and culture. If either is +, you don't have to do the blood test.

 

Just so you know, the Anti-DNAseB and ASO titers is not a diagnostic test for PANDAS, There are some PANDAS kids that do not show a rise in either.

 

There is a research study being done by Dr Cunningham that is the closest thing there is to a diagnostic test. The ideal is to have this done during an exacerbation of symptoms.

[peglem]

The ASO and antiDnase are not the antibodies that cause PANDAS, they are antibodies to strep exotoxins and are used to confirm a past, missed strep infection. Timing post infection is important (there is a post about this in the pinned thread at the top of the forum). These titers do not rise in all children who have or had a strep infection. Normal titers do not rule out a previous strep infection, raised titers do confirm a previous strep infection. My daughter, with almost constant + throat swabs, has not had high titers. The problem is that doc's frequently interpret low titers as ruling out PANDAS...and refuse to treat based on that.

[simplygina]

Cindy,

 

Your situation is so similar to mine. My son's tonsils were taken out Nov. 2008 and I don't think we've had strep since. Prior to that he had strep over and over, along with some sinus infections and a bajillion ear infections.

 

His OCD/tic showed up noticeably in Dec. 2007, though looking back I'm thinking it started earlier than that. He started Zoloft a month or so after his tonsillectomy and we attributed his improvements to that. But his OCD and tics do get better and worse and they usually improve as we head into Spring.

 

They definitely got much much worse when his brother had strep in September 2009. He's never had great handwriting, though it also gets better and worse. It really deteriorated. His math abilities also diminished after being something he always had an A in. He also added a bunch of new vocal and head/shoulder tics, started having trouble sleeping again and wet the bed a few times.

 

I mentioned all this to his doctor in October, so he swabbed him and it came back negative. I wasn't surprised because he was doing pretty good again by then (it's never been REALLY horrible). I didn't know enough then to ask for him to do the blood tests. The dr. wanted to increase his zoloft, which we did for a few days but I realized it was making him quite manic. We also realized that he had gained 15 pounds in the past 6 months and figured it was the zoloft. We decided to slowly wean him off and see if we noticed a difference.

 

By Christmas he was down to 25 mg (he was up to 150 mg at his highest manic dose) aside from a few days of emotional volatility, which we expected because withdrawal from zoloft is very hard, it hasn't changed anything except his weight is no longer increasing.

 

I read Saving Sammy about a month and a half ago and something inside me just knew that that is what we're dealing with. I decided we needed to talk with his doctor about PANDAS. 3 weeks ago we took him in to let the dr. know we were taking him off the zoloft and to talk about PANDAS. We weren't in an exacerbation, but he always has some OCD and some tics and emotional lability. We've always said he was an intense child. Now I knew that he was like all these other kids dealing with this disorder. We had his blood tests done then and started Augmentin.

 

Both his ASO and Anti-DNAase came back normal. Now his doctor really doesn't think it is PANDAS based on that alone, though he will admit he fits the diagnostic criteria. He did agree to talk with an infectious disease dr. he knows and admires and said he would look up Dr. T and his work. He also gave us another 10 days of Augmentin after I told him it helped and my son agreed, but said that without a current GABHs infection or elevated titers he really didn't see why it would help. I told him I didn't know either, but it was helping some. I'd like to see a more dramatic improvement, but I understand that recovery comes in small doses over a long period of time. I just wonder if we should be using Zith?

 

 

 

I would have them run, but I would make sure to make it clear to your doctor that he isn't at his worst and you wouldn't be surprised if his titers are normal and that you are just trying to get a baseline to compare the next exacerbation to. I would also make sure you run mycoplasma and lyme as well. We didn't, and still haven't, but plan to when we see the doctor again in a week and a half to discuss what he has learned. So many of the kids here have elevated titers I just want to know. Plus then I would know that Augmentin isn't the right abx.

 

Please keep us posted because I'm learning so much from what works or doesn't for others.

[EAMom]

Why would I do a culture first? Isn't the culture checking for an active infection, while the blood test is testing for antibodies?

 

Some kids will get strep infections with no symptoms (other than behavioral). Definitely culture. A culture isn't 100% (since strep can hide out elsewhere, like the sinuses), but it is the best place to start. I would also culture household contacts (esp. siblings) to check for carriers since household contacts with strep will cause behavior issues in pandas kids.

 

re titers: Lots of PANDAS kids will have low/neg ASO/anti-dnase b....even if there is full-blown pandas and a recent strep infection (mine did!). Some pandas kids just do not get elevated titers and misinformed docs will tell you that your kid doesn't have pandas. the FAQ explains lots about these titers.

 

Like VIckie said, also consider blood testing by Dr. Cunningham. This is much closer to a "test" for PANDAS than strep titers. Your son's symptoms and hx certainly sound consistent with pandas.

 

btw. where do you live? maybe someone can rec. a doc.

[saidie10]

Thanks so much for the reply Gina. It does appear we have very similar situations!! Sorry you are going through this too, it is so hard isn't it! You just want answers. I have never liked the unknown and I don't like it now!

 

Well I am hoping we have a plan, tell me what you think and any others with opinions, thanks. Spoke with the Neurologist this AM. We have an appointment next week. I am forwarding her all the information I am reading about on PANDAS and why I think it sounds like my son so she can take a look at all of it before our appt. When we go in, we are going to talk to her about weaning him off the zoloft and doing some baseline testing to see what we have currently going on with regards to strep since right now his tics and behaviors are not out of control. Then when he has a true exaggeration of symptoms, I gather that is the time to look again at the possible strep connection, right? I just really want to get him off the zoloft. Obviously if we find out down the rode that it can't be related and he needs medication for his health, we will do what we have to do for him, but I would be willing to try alternatives to these types of medications first.

 

What do you think? Does this sound like a good plan so we can find out if there is a connection? I just don't think we can while he is on the zoloft, would you agree?

 

Thanks so much and hope you find the answers you are looking for too.

 

Cindy

 

Cindy,

 

Your situation is so similar to mine. My son's tonsils were taken out Nov. 2008 and I don't think we've had strep since. Prior to that he had strep over and over, along with some sinus infections and a bajillion ear infections.

 

His OCD/tic showed up noticeably in Dec. 2007, though looking back I'm thinking it started earlier than that. He started Zoloft a month or so after his tonsillectomy and we attributed his improvements to that. But his OCD and tics do get better and worse and they usually improve as we head into Spring.

 

They definitely got much much worse when his brother had strep in September 2009. He's never had great handwriting, though it also gets better and worse. It really deteriorated. His math abilities also diminished after being something he always had an A in. He also added a bunch of new vocal and head/shoulder tics, started having trouble sleeping again and wet the bed a few times.

 

I mentioned all this to his doctor in October, so he swabbed him and it came back negative. I wasn't surprised because he was doing pretty good again by then (it's never been REALLY horrible). I didn't know enough then to ask for him to do the blood tests. The dr. wanted to increase his zoloft, which we did for a few days but I realized it was making him quite manic. We also realized that he had gained 15 pounds in the past 6 months and figured it was the zoloft. We decided to slowly wean him off and see if we noticed a difference.

 

By Christmas he was down to 25 mg (he was up to 150 mg at his highest manic dose) aside from a few days of emotional volatility, which we expected because withdrawal from zoloft is very hard, it hasn't changed anything except his weight is no longer increasing.

 

I read Saving Sammy about a month and a half ago and something inside me just knew that that is what we're dealing with. I decided we needed to talk with his doctor about PANDAS. 3 weeks ago we took him in to let the dr. know we were taking him off the zoloft and to talk about PANDAS. We weren't in an exacerbation, but he always has some OCD and some tics and emotional lability. We've always said he was an intense child. Now I knew that he was like all these other kids dealing with this disorder. We had his blood tests done then and started Augmentin.

 

Both his ASO and Anti-DNAase came back normal. Now his doctor really doesn't think it is PANDAS based on that alone, though he will admit he fits the diagnostic criteria. He did agree to talk with an infectious disease dr. he knows and admires and said he would look up Dr. T and his work. He also gave us another 10 days of Augmentin after I told him it helped and my son agreed, but said that without a current GABHs infection or elevated titers he really didn't see why it would help. I told him I didn't know either, but it was helping some. I'd like to see a more dramatic improvement, but I understand that recovery comes in small doses over a long period of time. I just wonder if we should be using Zith?

 

 

 

I would have them run, but I would make sure to make it clear to your doctor that he isn't at his worst and you wouldn't be surprised if his titers are normal and that you are just trying to get a baseline to compare the next exacerbation to. I would also make sure you run mycoplasma and lyme as well. We didn't, and still haven't, but plan to when we see the doctor again in a week and a half to discuss what he has learned. So many of the kids here have elevated titers I just want to know. Plus then I would know that Augmentin isn't the right abx.

 

Please keep us posted because I'm learning so much from what works or doesn't for others.