PANDAS dxs after treated Strep vs. PANDAS dxs after untreated Strep

[saidie10]

So here is my question. My first son meets all the criteria for a diagnosis (we just need someone else to see it now). And now I am convinced that my second son who had strep last week could now possibly meet the criteria as well. My question is this; are most of the PANDAS kids on here PANDAS kids from strep that went untreated (they were asymptomatic or you never knew they had it), or was your child or children treated for every strep infection you *knew* about? Both of my children who had lots of seasonal allergy issues, many, many ear infections and many strep infections, were always treated with a course of antibiotics for every positive culture we had. Sometimes we had to change antibiotics to get all symptoms to clear (we NEVER checked to make sure culture was negative after course of antibiotics though). Are they *luckier* in terms of recovery because of this or at this point are the wheels set in motion and catching strep again or even exposure (and apparently exposure to other illnesses too) will trigger exacerbation. I truly hope me asking whether they are luckier doesn't sound bad (because NONE of these kids are lucky by any means), it's just that sometimes I feel guilty on here when I see so many of your children are suffering so much more than mine and I tell myself I shouldn't be so freaked out about mine, look at what some other children and families are going through...my heart truly goes out to all of you and your kids who are suffering.

 

I do think if my son was not on zoloft for OCD things would be much worse, especially this week during his brothers recent infection since he did have an exacerbation, but I know the zoloft is helping him. Do I want him on it, ABSOLUTELY NOT! I want him off of it!!!

 

Just be honest with me people. I can handle it the truth!!!

[Kayanne]

My daughter's strep was being treated prior to her behavior shift. However, I think it was not treated properly. She was only given 5 days of omnincef--it is approved for 5 days, but for strep it is recommended to give for 10...then when she was back a few days after stopping the antibiotic, she was prescribed amoxicillin--a weaker antibiotic that cannot reach intracellular strep. Anywway, the ped's office did finally get it right, and a month long course of prednisone brought her back to 98%....3 months later she was 100%...

 

I don't think there is anything in the diagnostic critera that says it must be UNTREATED strep...It is an increase of symptoms associated with strep.

 

This would be an interesting poll--

 

I'm wondering how many people had PANDAS symptoms before learning about the strep connection and how many had strep infection that was being treated, and then had PANDAS symptoms surface. And for each group...how severe or sudden was the PANDAS exercerbation?

 

For us it was more of a realization over a few weeks that came to a head when her teacher approached us about her change...so I don't have a specific date like many parents do...just a time frame of a few weeks that we realized we didn't have the same daughter. I would say she was bad...OCD shut her down, I was forcing her to eat....etc...etc...

 

However, like you I think we are somewhat lucky...It doesn't seem like we went through as much trauma a many of the families on this forum do...

 

As far as the psych meds are concerned, they do work for some kids with PANDAS...parents just need to be really careful. Certainly, though if you son is in an exercerbation and the medication is not making things worse...now is probably not the time to try to get him off of them.

 

It is hard to accept the medications sometimes, but try to think of it as tool or bridge that is needed for now...especially if you think it is helping!

 

~Karen

[saidie10]

I would say my oldest son who we have suspected PANDAS in since last year but were told by two Neurologists we saw "it's basically a coincidence that he had all these strep infections and then *boom* tics and sudden onset OCD" definitely had lots of strep infections before we ever say these psychotic behaviors, crazy tics and the sudden onset OCD actually came 5 days after his last *known* infection in June of 2009. He had his tonsils and adenoids removed in August of 2009 because of so many infections. What you said about Omnicef and Amoxicillin freaks me out quite honestly. He almost ALWAYS was given Amoxicillin. Sometimes Omnicef was given I think when it was clear that on Amox the symptoms of strep (fever and soar throat) were not clearing up. He may have gotten Zithro once? Not sure, I would have to look in his records. I don't understand Amoxicillin and the intracellular strep thing you were talking about?

 

Thank goodness your child was finally treated correctly and has recovered. Has she had any exacerbations since that onset?

 

My daughter's strep was being treated prior to her behavior shift. However, I think it was not treated properly. She was only given 5 days of omnincef--it is approved for 5 days, but for strep it is recommended to give for 10...then when she was back a few days after stopping the antibiotic, she was prescribed amoxicillin--a weaker antibiotic that cannot reach intracellular strep. Anywway, the ped's office did finally get it right, and a month long course of prednisone brought her back to 98%....3 months later she was 100%...

 

I don't think there is anything in the diagnostic critera that says it must be UNTREATED strep...It is an increase of symptoms associated with strep.

 

This would be an interesting poll--

 

I'm wondering how many people had PANDAS symptoms before learning about the strep connection and how many had strep infection that was being treated, and then had PANDAS symptoms surface. And for each group...how severe or sudden was the PANDAS exercerbation?

 

For us it was more of a realization over a few weeks that came to a head when her teacher approached us about her change...so I don't have a specific date like many parents do...just a time frame of a few weeks that we realized we didn't have the same daughter. I would say she was bad...OCD shut her down, I was forcing her to eat....etc...etc...

 

However, like you I think we are somewhat lucky...It doesn't seem like we went through as much trauma a many of the families on this forum do...

 

As far as the psych meds are concerned, they do work for some kids with PANDAS...parents just need to be really careful. Certainly, though if you son is in an exercerbation and the medication is not making things worse...now is probably not the time to try to get him off of them.

 

It is hard to accept the medications sometimes, but try to think of it as tool or bridge that is needed for now...especially if you think it is helping!

 

~Karen

[Kayanne]

This article gives a general explaination about the amox failure:

 

http://www.entrepreneur.com/tradejournals/.../169459644.html

 

It is commonly posted on this forum...if you haven't read it yet, take a few minutes...it is important because I think most pediatricians go to amoxicillin as their first choice of antibiotic when a child gets strep.

 

Strep hit my house again in Feburary this year, and my other 3 kids were treated w/cephalasporins...one round did clear them. My PANDAS daughter kept testing negative despite having a ramp up in symptoms...she lost a few pounds because she kept thinking the food was getting stuck, was having difficulty making decisions, being emotional, lots of baby talk...we saw these behaviors at home...school continued to say she was fine.

 

She was taking 200mg of pen vk twice a day as a prophylaxis...when her symptoms were a slight blip (my husband and I just kept giving each other side-ways glances, and after the kids were in bed would talk circles about her behavior trying to really see if it was coming back..we just weren't sure), her pediatrician had said that the penicillian was working because she kept testing negative....One week later, it was obvious that PANDAS was back, and a different ped put her on 150mg of Omnicef twice a day for ten days...

 

We saw Dr. L, and she prescribed another month of pred...and we tried amoxicillian again for a week...we were losing the gains we had made on the Omnicef, and she had some minor rashes...so Dr. L put her back on the Omnicef. The pred definitely helped again....she is essentially 99.9%...still taking the omnicef, and 1/2 tsp of omegabrite most days.

[thereishope]

I'm sorry. I'm a little confused on what the question is. As you know,every chhild symptoms and severity of symptoms vary. This is true for recovery too. I think how fast you catch the strep, how long it took to clear it up, if you could keep the immune system calm afterwards can play into the equation. If your children had strep before (prior to first known PANDAS exacerbation) but w/o PANDAS symptoms, perhaps it was the strain that that got your children that "magical time" that set the wheels of PANDAS in motion.

 

I'm guessing your kids show symptoms of strep? If so, that would play into too. My son does not show symptoms of strep so I really have no idea what the timframe is between him catching strep and PANDAS symptoms surfacing. But the PANDAS symptoms are my cue to take him for a test.

[saidie10]

Hey Vickie. Yes, my kids have always shown the signs of typical strep throat when they had positive cultures. What you are saying about symptoms and severity of symptoms and recovery makes a lot of since. And how the immune system plays in. These statements you made help actually answer my question!

 

I guess it is possible (and based on what Dr. K said) that since my son had such a positive reaction to having his tonsils and adenoids removed that his trigger for the tics and OCD was very likely strep, and since he was always symptomatic for strep and was treated (maybe not treated sufficiently since it was almost always with amox) that I believe he truly has not had strep since August of 2009. He has however been exposed and his titers are still elevated and during exposure he did exacerbate. I guess it would be more likely (I don't know) that the poor kids with untreated strep because they were asymptomatic would have the slowest recovery.

 

Thanks for the replies guys, lots of great information!

 

I'm sorry. I'm a little confused on what the question is. As you know,every chhild symptoms and severity of symptoms vary. This is true for recovery too. I think how fast you catch the strep, how long it took to clear it up, if you could keep the immune system calm afterwards can play into the equation. If your children had strep before (prior to first known PANDAS exacerbation) but w/o PANDAS symptoms, perhaps it was the strain that that got your children that "magical time" that set the wheels of PANDAS in motion.

 

I'm guessing your kids show symptoms of strep? If so, that would play into too. My son does not show symptoms of strep so I really have no idea what the timframe is between him catching strep and PANDAS symptoms surfacing. But the PANDAS symptoms are my cue to take him for a test.