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LMama

please remind me...

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Ok, it has been a while since I posted. Can you please remind me if PANDAS OCD symptoms return with a common cold. The last couple of days, our son has started showing some very clear OCD symptoms but there have been no cases of strep. Can someone tell me if this looks like Pandas or if it looks like Tourettes? Also, do I need him on abx now even though there is no sign of strep? I am taking him to the dr tomorrow for the strep test, but he always tests neg for strep. Please advise...

 

Thank you, and Happy holidays.

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My daughters symptoms always get worse with any virus or infection, not just strep. Usually she will get more defiant, more facial grimacing and more emotional. Right now she is fighting something and I have seen an increase of symptoms. Is your son on any antibiotics long term?

 

Susan

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With my son, when it was during recovery from a strep triggered exacerbation, a virus and allergy set off a decent size "setback". Once I considered recovered, I have still seen PANDAS surface slightly when a virus is there, but not remotely as bad a strep triggered one.

 

Luckily, with my son, the viral induced PANDAS setbacks go away as the virus goes away.

 

The severity and length of a viral triggered exacerbation really varies across the board with PANDAS kids.

 

btw...Your son could have had a double whammy...the virus along with the excitement of the holidays, esp if you had a lot of visitors or were visting with big groups. Stress can be a trigger. Even though excitement may not be considered "stress', it can make a child's blood pressure rise. Try to keep things calm in the house if you can.

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btw...Your son could have had a double whammy...the virus along with the excitement of the holidays, esp if you had a lot of visitors or were visting with big groups. Stress can be a trigger. Even though excitement may not be considered "stress', it can make a child's blood pressure rise. Try to keep things calm in the house if you can.

 

Our son's OCD behaviors almost always increase during a cold or virus, as well, and also during high "excitement" times like Christmas, as Vickie has noted. He feels stressed, I think, because his body is doing something he cannot entirely control . . . the running nose and coughing and feeling tired and achy just feed all the underlying anxiety. And as for the holiday excitement, again, all the anticipation and the interruption in routine, etc. make things harder for him, too.

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No, he is not on any antibiotics long term, however, we were able to get the dr. to prescribe a 10 day treatment even though he had no symptoms of strep. He is on Amoxicillin 400 mg/5ml. The rx says "take 2 teaspoonfuls (10mls) by mouth 2 times a day for 10 days."

 

Is this an adequate dosage?

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Ok, so I am feeling confused. The first time we really saw severe symptoms (multiple motor and vocal tics, and what seemed like very slight OCD type behavior) was after a strep infection (within a month of strep). He was on abx for 10 days, and then it took about 6 months or more for the behaviors to go away. Since then, we have seen some very slight OCD type behaviors emerge a couple of times, but we have been able to treat with antibiotics, and it ALWAYS seemed to resolve with the abx. So we really thought it was PANDAS. On a regular basis, his symptoms are pretty much not there. I know we are blessed to have haaad his symptoms be so mild thus far.

 

But this time around, he doesn't have a sore throat, and the "cold" he has is really minor. No fever or anything. He had a little bit of a stuffed nose and that's about it. And with the holidays, yes, it has been very "off" our normal routine, so stress is very likely a factor here. Right now, I would say that his symptoms are still relatively mild in that it is not impacting his entire life. He is still able to play and be a happy boy. But he is very concerned/anxious with certain things right now. He says that "Mr. Worry" is back. He couldn't sit on his chair at the dinner table tonight because it was "dirty". He has to hop over lines and and as he enters rooms, etc. The tics are not present (whereas with our first severe complication, it was more tics than ocd). This time around it's more of an ocd thing.

 

So I am confused though. Is it PANDAS or is it TOURETTES or is it OCD with Tourettes? How are these disorders different? The dr. today said that he would give abx but that perhaps we should start considering behavioral therapy b/c maybe it is underlying OCD/Tourettes. His dr. is very open to the PANDAS diagnosis, but I don;t think he knows a lot about it. He also suggested a referral to the Infectious Disease Specialist.

 

We were able to get the dr. to prescribe a 10 day treatment even though he had no symptoms of strep. He is on Amoxicillin 400 mg/5ml. The rx says "take 2 teaspoonfuls (10mls) by mouth 2 times a day for 10 days."

 

Is this an adequate dosage? Do you all think he should be on a longer term dosage? How can I get his dr. on board with this? Are there resources out there that I could print out and show the dr. to support the idea that maybe it IS PANDAS and we should try a long term abx? I am just not sure where to go here.

 

We have been incontact with Dr. Cunningham, and we have the kit for the blood draw. We were waiting for an exacerbation. I guess now's a good time...

 

I guess in a way I am worried because up until now, we really thought it was PANDAS, but now we are starting to worry that it is Tourettes or OCD. What are your thoughts?

 

Thanks for all of your replies. I really appreciate all of your wisdom.

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Ok, so I am feeling confused. The first time we really saw severe symptoms (multiple motor and vocal tics, and what seemed like very slight OCD type behavior) was after a strep infection (within a month of strep). He was on abx for 10 days, and then it took about 6 months or more for the behaviors to go away. Since then, we have seen some very slight OCD type behaviors emerge a couple of times, but we have been able to treat with antibiotics, and it ALWAYS seemed to resolve with the abx. So we really thought it was PANDAS. On a regular basis, his symptoms are pretty much not there. I know we are blessed to have haaad his symptoms be so mild thus far.

 

But this time around, he doesn't have a sore throat, and the "cold" he has is really minor. No fever or anything. He had a little bit of a stuffed nose and that's about it. And with the holidays, yes, it has been very "off" our normal routine, so stress is very likely a factor here. Right now, I would say that his symptoms are still relatively mild in that it is not impacting his entire life. He is still able to play and be a happy boy. But he is very concerned/anxious with certain things right now. He says that "Mr. Worry" is back. He couldn't sit on his chair at the dinner table tonight because it was "dirty". He has to hop over lines and and as he enters rooms, etc. The tics are not present (whereas with our first severe complication, it was more tics than ocd). This time around it's more of an ocd thing.

 

So I am confused though. Is it PANDAS or is it TOURETTES or is it OCD with Tourettes? How are these disorders different? The dr. today said that he would give abx but that perhaps we should start considering behavioral therapy b/c maybe it is underlying OCD/Tourettes. His dr. is very open to the PANDAS diagnosis, but I don;t think he knows a lot about it. He also suggested a referral to the Infectious Disease Specialist.

 

We were able to get the dr. to prescribe a 10 day treatment even though he had no symptoms of strep. He is on Amoxicillin 400 mg/5ml. The rx says "take 2 teaspoonfuls (10mls) by mouth 2 times a day for 10 days."

 

Is this an adequate dosage? Do you all think he should be on a longer term dosage? How can I get his dr. on board with this? Are there resources out there that I could print out and show the dr. to support the idea that maybe it IS PANDAS and we should try a long term abx? I am just not sure where to go here.

 

We have been incontact with Dr. Cunningham, and we have the kit for the blood draw. We were waiting for an exacerbation. I guess now's a good time...

 

I guess in a way I am worried because up until now, we really thought it was PANDAS, but now we are starting to worry that it is Tourettes or OCD. What are your thoughts?

 

Thanks for all of your replies. I really appreciate all of your wisdom.

 

There are several threads here about what materials you can take to your doctor regarding PANDAS, and what testing can help support your contention that, irrespective of a positive strep test (or not), your child may be experiencing PANDAS. From what you've described, it does sound like PANDAS to me, especially since you've seen both OCD and TS behaviors during exacerbations.

 

Although it is not at all considered to be a "definitive" test, we were able to convince our regular pediatrician to go with a long-term abx treatment with an ASO titer test that revealed strep titer levels about double the normal range; this test was suggested to me by Beth Maloney, author of "Saving Sammy." Our son has always been asymptomatic for strep, and each and every throat culture always comes back negative, but the ASO titer blood test demonstrated that he had a recent exposure; that was enough to bring our ped on board. I also took her a copy of "Saving Sammy" and asked her to read it.

 

The OCD behaviors you're describing your son as displaying now sound very much like what my DS12 goes through in terms of contamination (the chair being dirty), and what Sammy Maloney in the book displayed in terms of hopping lines in doorways, etc.

 

As for whether or not your abx dosage is adequate, it seems to vary greatly with all kids and would depend to some extent on his size (weight); also, strains of strep vary across the country, and it appears some are more responsive to one abx as opposed to another. And some exacerbations seem to come as a result of exposure to non-strep triggers whether flu, cold, oral issues (tooth pulling or molar cutting), etc., and what abx helps in those instances appears to vary, also. We've had success with Augmentin, while others have had success on Azith. It seems to me the thru-thread, however, is that the heftier abx tend to work more consistently than the "lighter" ones.

 

Good luck! There's lot of information here, lots of experiences (and lots of opinions :huh:).

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We have been incontact with Dr. Cunningham, and we have the kit for the blood draw. We were waiting for an exacerbation. I guess now's a good time...

 

Except that Dr. Cunningham's lab is closed for the holidays!

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We have been incontact with Dr. Cunningham, and we have the kit for the blood draw. We were waiting for an exacerbation. I guess now's a good time...

 

Except that Dr. Cunningham's lab is closed for the holidays!

 

Thank you for your response! I emailed them last night, and Kathy emailed me back and said that as long as we have the blood spun and the serum pulled that we can freeze it until the 4th when they return.

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Ok, so I am feeling confused. The first time we really saw severe symptoms (multiple motor and vocal tics, and what seemed like very slight OCD type behavior) was after a strep infection (within a month of strep). He was on abx for 10 days, and then it took about 6 months or more for the behaviors to go away. Since then, we have seen some very slight OCD type behaviors emerge a couple of times, but we have been able to treat with antibiotics, and it ALWAYS seemed to resolve with the abx. So we really thought it was PANDAS. On a regular basis, his symptoms are pretty much not there. I know we are blessed to have haaad his symptoms be so mild thus far.

 

But this time around, he doesn't have a sore throat, and the "cold" he has is really minor. No fever or anything. He had a little bit of a stuffed nose and that's about it. And with the holidays, yes, it has been very "off" our normal routine, so stress is very likely a factor here. Right now, I would say that his symptoms are still relatively mild in that it is not impacting his entire life. He is still able to play and be a happy boy. But he is very concerned/anxious with certain things right now. He says that "Mr. Worry" is back. He couldn't sit on his chair at the dinner table tonight because it was "dirty". He has to hop over lines and and as he enters rooms, etc. The tics are not present (whereas with our first severe complication, it was more tics than ocd). This time around it's more of an ocd thing.

 

So I am confused though. Is it PANDAS or is it TOURETTES or is it OCD with Tourettes? How are these disorders different? The dr. today said that he would give abx but that perhaps we should start considering behavioral therapy b/c maybe it is underlying OCD/Tourettes. His dr. is very open to the PANDAS diagnosis, but I don;t think he knows a lot about it. He also suggested a referral to the Infectious Disease Specialist.

 

We were able to get the dr. to prescribe a 10 day treatment even though he had no symptoms of strep. He is on Amoxicillin 400 mg/5ml. The rx says "take 2 teaspoonfuls (10mls) by mouth 2 times a day for 10 days."

 

Is this an adequate dosage? Do you all think he should be on a longer term dosage? How can I get his dr. on board with this? Are there resources out there that I could print out and show the dr. to support the idea that maybe it IS PANDAS and we should try a long term abx? I am just not sure where to go here.

 

We have been incontact with Dr. Cunningham, and we have the kit for the blood draw. We were waiting for an exacerbation. I guess now's a good time...

 

I guess in a way I am worried because up until now, we really thought it was PANDAS, but now we are starting to worry that it is Tourettes or OCD. What are your thoughts?

 

Thanks for all of your replies. I really appreciate all of your wisdom.

 

There are several threads here about what materials you can take to your doctor regarding PANDAS, and what testing can help support your contention that, irrespective of a positive strep test (or not), your child may be experiencing PANDAS. From what you've described, it does sound like PANDAS to me, especially since you've seen both OCD and TS behaviors during exacerbations.

 

Although it is not at all considered to be a "definitive" test, we were able to convince our regular pediatrician to go with a long-term abx treatment with an ASO titer test that revealed strep titer levels about double the normal range; this test was suggested to me by Beth Maloney, author of "Saving Sammy." Our son has always been asymptomatic for strep, and each and every throat culture always comes back negative, but the ASO titer blood test demonstrated that he had a recent exposure; that was enough to bring our ped on board. I also took her a copy of "Saving Sammy" and asked her to read it.

 

The OCD behaviors you're describing your son as displaying now sound very much like what my DS12 goes through in terms of contamination (the chair being dirty), and what Sammy Maloney in the book displayed in terms of hopping lines in doorways, etc.

 

As for whether or not your abx dosage is adequate, it seems to vary greatly with all kids and would depend to some extent on his size (weight); also, strains of strep vary across the country, and it appears some are more responsive to one abx as opposed to another. And some exacerbations seem to come as a result of exposure to non-strep triggers whether flu, cold, oral issues (tooth pulling or molar cutting), etc., and what abx helps in those instances appears to vary, also. We've had success with Augmentin, while others have had success on Azith. It seems to me the thru-thread, however, is that the heftier abx tend to work more consistently than the "lighter" ones.

 

Good luck! There's lot of information here, lots of experiences (and lots of opinions :huh:).

 

Thank you for the info! I am looking over some of the "helpful threads" now to see what I can understand and take to the dr. They agreed to do the blood draw. Is amoxicillin a "lighter one" as you mentioned?

 

Also, for your DS12, do her symptoms go away ever, or are they always there?

 

As for my son's weight and the dosage, I think he is at about 55 pounds.

 

Thanks again for the response. It's so nice to have a forum of moms here to talk with.

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Thank you for the info! I am looking over some of the "helpful threads" now to see what I can understand and take to the dr. They agreed to do the blood draw. Is amoxicillin a "lighter one" as you mentioned?

 

Also, for your DS12, do her symptoms go away ever, or are they always there?

 

As for my son's weight and the dosage, I think he is at about 55 pounds.

 

Thanks again for the response. It's so nice to have a forum of moms here to talk with.

 

So far as I can figure out, yes, amoxicillin is generally considered a "lighter" one. My understanding is that Augmentin is a combination of penicillin and amoxicillin, which somehow more strongly "activates" the med overall. I'm no expert, though, so it would be wise, of course, to check with the doctor. The abx I see most frequently noted here are azith, augmentin, keflex and cipro.

 

Yes, my 12-year-old son has experienced more or less complete "remission" from his symptoms for periods of time, the longest "waning" having been for nearly 5 years! His behaviors are almost entirely OCD in character, and during that major wane, he would probably still best be described as a bit "quirky," but none of the behaviors significantly impacted his home, academic or social life. With this latest exacerbation which began about last May, it's been a tougher fight but one that we've seen the abx definitely assist.

 

Your son is obviously younger and smaller than mine, and I have no medical expertise (only experiential), so I'm unfortunately no help with regard to your dosage. :huh: Hopefully one of the other forum posters with a longer range of experience and/or a child of similar age/size will chime in for you on that.

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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.

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So far as I can figure out, yes, amoxicillin is generally considered a "lighter" one. My understanding is that Augmentin is a combination of penicillin and amoxicillin, which somehow more strongly "activates" the med overall.

 

 

Augmentin is a combination of Ammoxicilin and Clavulonic Acid. the Clavulonic acid somehow makes the ammox more effective.

Angela

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So far as I can figure out, yes, amoxicillin is generally considered a "lighter" one. My understanding is that Augmentin is a combination of penicillin and amoxicillin, which somehow more strongly "activates" the med overall.

 

 

Augmentin is a combination of Ammoxicilin and Clavulonic Acid. the Clavulonic acid somehow makes the ammox more effective.

Angela

 

Thanks for the clarification. I knew it was Amox +, but I'd forgotten the other ingredient.

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