please remind me...

[Tattoomom]

From what you've described, it does sound like PANDAS to me, especially since you've seen both OCD and TS behaviors during exacerbations.

 

 

What is the difference between TS and PANDAS "symptoms?" Aren't they very much the same?

 

I too, struggle to understand if my son's issues are PANDAS or TS...

[peglem]

In my opinion....TS, OCD, ADHD, are all observable symptoms of an underlying disorder. PANDAS may be the underlying cause of these symptoms in some cases. There may be other things that cause these symptoms. I really think medical science needs to stop accepting these things as diagnosis and look for what's causing these symptoms.

An analogy would be if a patient were diagnosed with chest pain. That's a symptom that can be caused by different things, but if you're a patient with chest pain, you're probably going to want the doctor to find out what is causing it before you are treated.

[LMama]

Are you sure it's not a sinus infection? My son had a cold on and off for a month. It was a sinus infection. At first they gave him 15 days of amox. Same dosing as you. A week into it, I called and told them he still soudned like there was swelling. Don't really know if it was the case, but I wanted longer abx and something stronger. Over the phone with no fight, they gave him 15 days of Augmentin. He is nearing the end of the script and he is sounding better too.

 

My son's symptoms at the time was only a slightly runny nose and sounded a bit congested. He wasn't miserable or anything.

 

So, look into a possible sinus infection. Tell them you now realize that may be the culprit since he's been sick with a cold on and off for weeks. They did nothing invasive at the appt. They pretty much took my word and gave the script. At the appt, or on the phone, tell them that the amox isn't working and you want to try something stronger like Augmentin.

 

You may be able to "get away" with just talking through a phone nurse to get something else. Sinus infection will justify their med records for why the changed the script for you too.

 

btw...From what I've read some kids have had bad excaerbations from sinus infections. You can also get strep in the sinuses.

 

Thank you all for your responses.

 

I am beginning to realize that these recurring "10 day prescriptions" for abx are not enough. We keep coming back to symptoms, albeit we have long periods in between. Yes, it very well may be a sinus infection. You're right! And I have read here that strep hides in the sinuses as well.

 

I have him on 10 days of abx now, and he is much better. Still some very mild ocd there...evening out , some hopping over doorways and entrances, etc. but for the most part, it is not "bothering" him as much anymore, and it is not as noticeable to anyone other than myself and husband. He has even gone to the bathroom by himself tonight, which is HUGE because he is fearful at night.

 

I am going to read Beth Maloney's book and pull together some of the many resources here, and take it to my son's dr. I think he needs to be on a long term abx for a while to see if that helps. I can't thank you enough all of you for responding to my questions. Sometimes I feel as though I have a handle on this PANDAS stuff and then many times I feel as though I am going crazy. Also, I know that my son's symptoms are mild in comparison to many of the stories I see here, so sometimes I wonder if I am over-reacting. But then I took my son into the dr. today and even the dr. himself said that he could SEE the marked improvement since my son startes abx a few days ago. And that's what we see every time...symptoms come back, we go to the dr., get abx, symptoms go away for a while. Symptoms come back...go to the dr., get on abx, etc. While I KNOW that we are blessed that it has been so mild thus far, I still live in fear of seeing another exacerbation as we saw last May 2008.

 

Anyway, thank you all for your support. I will let you know once I can get him on a longer term of abx.

[thereishope]

If you at all think it is a sinus infection, I say take him him to the pediatrician or ENT. You can secure almost a month of abx, depending on the doctor. ENT's give longer scripts for it. Also, if he's had it for awhile, it would need something stronger than amox to clear it up.

 

I'm just saying, you may be able to start a longer script sooner w/ a sinus infection dx while you gather all your info for PANDAS abx.

 

I think some parents even got CT scans of the sinuses and found hidden strep that way?

[harmony]

If you at all think it is a sinus infection, I say take him him to the pediatrician or ENT. You can secure almost a month of abx, depending on the doctor. ENT's give longer scripts for it. Also, if he's had it for awhile, it would need something stronger than amox to clear it up.

 

I'm just saying, you may be able to start a longer script sooner w/ a sinus infection dx while you gather all your info for PANDAS abx.

 

I think some parents even got CT scans of the sinuses and found hidden strep that way?

With our experience w/ ENT and Immunologist- they do not prescribe the same type of antibiotic for sinus infection as they would for strep. And unfortunately, they are unable to tell what type of bacteria is in the sinuses by a CT. Is there a way to find out without surgery? That would be awesome!!! My son has already had one sinus surgery and the ENT wants to preform a very invasive surgery now- we decided against this.

[peglem]

If you at all think it is a sinus infection, I say take him him to the pediatrician or ENT. You can secure almost a month of abx, depending on the doctor. ENT's give longer scripts for it. Also, if he's had it for awhile, it would need something stronger than amox to clear it up.

 

I'm just saying, you may be able to start a longer script sooner w/ a sinus infection dx while you gather all your info for PANDAS abx.

 

I think some parents even got CT scans of the sinuses and found hidden strep that way?

With our experience w/ ENT and Immunologist- they do not prescribe the same type of antibiotic for sinus infection as they would for strep. And unfortunately, they are unable to tell what type of bacteria is in the sinuses by a CT. Is there a way to find out without surgery? That would be awesome!!! My son has already had one sinus surgery and the ENT wants to preform a very invasive surgery now- we decided against this.

They can do a nasal swab to check for strep in sinuses.

[LMama]

They can do a nasal swab to check for strep in sinuses.

 

 

I never knew that. It's frustrating that the doctors have never suggested this. Thanks for the info!

[faith]

LMama,

could I ask how long after he started with this latest mild cold did you feel you saw symptoms? and prior to this you've seen symptoms go away after abx, and stay away for a while? thats good. I'm still trying to figure out my son's problem. usually we have viral illness and strep is nowhere to be found. so I wonder too what is going on. even today we were swabbed yet again because we had to go in for a repeat blood test anyway, but last night my son came home from a friend's house and had a slight fever and sore throat......yet its negative to strep. always is. but for us, I always note that during his viral, his tics quiet, but now today that his feeling better, they are starting again. ..... so you have started this abx with negative strep also? and it seems to be helping? could you verify that the trend continues? thanks.

 

Faith

[LMama]

LMama,

could I ask how long after he started with this latest mild cold did you feel you saw symptoms? and prior to this you've seen symptoms go away after abx, and stay away for a while? thats good. I'm still trying to figure out my son's problem. usually we have viral illness and strep is nowhere to be found. so I wonder too what is going on. even today we were swabbed yet again because we had to go in for a repeat blood test anyway, but last night my son came home from a friend's house and had a slight fever and sore throat......yet its negative to strep. always is. but for us, I always note that during his viral, his tics quiet, but now today that his feeling better, they are starting again. ..... so you have started this abx with negative strep also? and it seems to be helping? could you verify that the trend continues? thanks.

 

Faith

 

Hi Faith, Let me see. Yes, he started with the mild cold, and within days we started seeing some slight ocd type behavior (the hopping over door entrances and stuff). Usually we see tics, but this time, it was more of an anxiety ridden hopping behavior. He also has mentioned needing to even himself up by touching things a certain way. As I said, his symptoms are so very mild. My husband and I are the only ones who really see it at this point. (He has had one very severe episode...the first one we saw in May 2008). So anyway, it's odd, literally within a day or two of starting abx he seems to improve. I mean, we still are seeing some hopping and a little of the evening out stuff, but it is almost gone.

 

As for strep, he has only tested positive once, in May 2008, and about 2 months later his titers (blood) were in the 300's if I remember correctly. Other times, he has ALWAYS tested negative. The pediatricians here at least believe PANDAS is a possible diagnosis, so they are good about giving us these 10 day prescriptions, but this last time, the dr. suggested that since we have not seen a positive strep test, and since the last time we were in was November (not long ago), maybe it's tourettes or onset ocd.

 

Also, his strep symptom from that May2008 episode: slight sore throat with no fever that we would have dismissed had it not been for the fact that I was due to have my second child that week, and was concerned about the baby getting sick.

 

I hope you can find an answer for your son too. Let me know how you are doing!

[thereishope]

What kind of abx does your doctor give for a sinus infection? Mine first tried amox, then Augmentin. The Augmentin seemed to work. And I actually got longer scripts than I did for strep. I live in OH, which is a very stubborn state when it comes to abx. From what other moms have told me is an ENT will prescribe loger abx for a sinus infection because they understand it takes longer to get to that area and to clear it.

 

If you at all think it is a sinus infection, I say take him him to the pediatrician or ENT. You can secure almost a month of abx, depending on the doctor. ENT's give longer scripts for it. Also, if he's had it for awhile, it would need something stronger than amox to clear it up.

 

I'm just saying, you may be able to start a longer script sooner w/ a sinus infection dx while you gather all your info for PANDAS abx.

 

I think some parents even got CT scans of the sinuses and found hidden strep that way?

With our experience w/ ENT and Immunologist- they do not prescribe the same type of antibiotic for sinus infection as they would for strep. And unfortunately, they are unable to tell what type of bacteria is in the sinuses by a CT. Is there a way to find out without surgery? That would be awesome!!! My son has already had one sinus surgery and the ENT wants to preform a very invasive surgery now- we decided against this.