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Question re: PANDAS


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Justine

Don't get too caught up in working out how/when the first strep event was for your son. My son started to have tics at 4 years old (he's now 9). He was diagnosed with TS. We have no family history of TS, RF or any of those other disorders. I knew about PANDAS back then, but he was nothing like the profile of a PANDAS kid at that time. I even have a friend whose daughter has PANDAS, but never felt it applied to my son. He's never had OCD type behavior in my opinion. Just motor and sometimes vocal tics, and 'difficult' behavior - short-tempered, easily frustrated, but not really extreme - he's doing well in school and most kids accept his tics. Like your son, his tics always die down a lot when he does get sick. Anyway, I happened to ask his enviro doctor about PANDAS a few months ago because I was hearing more about it. I wanted to officially rule it out for my son (I'm a 'check the boxes' kind of person). He happened to have the name of a pediatrician locally who's interested in PANDAS and we scheduled a visit to her. It was a one-off visit, because her practice was full and I just planned to have her rule it out..

 

I have been totally amazed to find that he does appear to be a PANDAS case. This boy has never had a sore throat his whole life. He has been on antibiotics just once when he was 1 or 2. He has just had the normal occasional bouts of stomach flu or colds/coughs but is generally very healthy. By sheer coincidence, the week before we saw the PANDAS doctor, he said he had a sore throat!!! Because of what I'd seen on this forum, I got his throat swabbed that day and made sure I got the numbers back from the cultures. His ASO was 260 which is slightly elevated. although our regular ped said this was normal and not indicative of PANDAS. Further blood tests showed that he had high streptozyme. Our new PANDAS doctor put him on a month of Augmentin and his tics were better than they had been for a few months. We tried steroids a couple of weeks ago, and after 5 days of roid rage -_- he was fantastic for 3-4 days - calm, focused, pleasant to be around. That has really proved it for me. I would never have believed it if you'd told me all this 3 months ago.

 

Keep investigating and getting the tests done. I am so happy that we looked into this and have been able to get to this point with him, and I urge you to keep looking into this even if you don't think the PANDAS profile quite fits your son. I think the range of kids that prove to have this disorder is going to be growing rapidly as more is learned about it.

 

Good luck!

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No, he has never had a negative strep. The two times he did test positive for strep were totally surprising to me. He didn't have a sore throat, just a fever. We actually went to the dr to check his ears.

 

When the recent bloodwork was done, our dr didn't do a throat culture. His Anti-dsDNA was 27 (ref range <150) and the Anti-Streptolysin Ab titer was 97.8 (ref range 0.0-200.0). Our dr felt it was worth trying the antibiotics regardless of the results. Should he have done a culture as well?

 

Has your child ever had a negative strep test?

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That could describe my son - difficult at times, short tempered, and easily frustrated. My son does struggle with math and writing though. But I never really thought I saw OCD behaviors until I started thinking back to how he has to have the cans lined up just so in the cupboard when he helps me unload the groceries or how he straightens things in stores. I always tell him he doesn't work there and so he doesn't have to clean up! Now I wonder if that's an OCD characteristic.

 

Justine

Don't get too caught up in working out how/when the first strep event was for your son. My son started to have tics at 4 years old (he's now 9). He was diagnosed with TS. We have no family history of TS, RF or any of those other disorders. I knew about PANDAS back then, but he was nothing like the profile of a PANDAS kid at that time. I even have a friend whose daughter has PANDAS, but never felt it applied to my son. He's never had OCD type behavior in my opinion. Just motor and sometimes vocal tics, and 'difficult' behavior - short-tempered, easily frustrated, but not really extreme - he's doing well in school and most kids accept his tics. Like your son, his tics always die down a lot when he does get sick.

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First, here's link about how parents here have seen OCD in their children. Often parents don't realize they are seeing OCD...

 

http://www.latitudes.org/forums/index.php?...ic=6153&hl=

 

My son had a lot of OCD.

 

As for the strep, I wish it was easy with these kids! Go for a rapid. If that comes back negative, tell them you want a 48 hour culture. Since your child has never had a negative strep test, there is that possibility he's had strep for awhile. My kids don't get symptoms either. It's very scary. My 8 year old's classmate had strep and I had to take my 8 year old in and my 3 year old since there's no ther way of knowing if they somehow contracted it . Everyone will think you're overeacting, but that's how I found out my 2 non-PANDAS kids are non-symptomatic. My PANDAS son started having his meldowsn, took him in, it was +. So needed to rule out the other 2 kids. They didn't want to swab my daughter since she wa 2. well, they both had strep. They laughed and skipped into the dr office! Anyway, is your son still doing well on the penicillan? If he starts to regress, take him back in. Discuss how your nervous he may be a carrier. You may have to be insistent, so be prepared. Maybe he's not, but that would also affect what abx they give him. Also, take him in for a FOLLOW UP strep test 2 weeks after finishing abx. If any member ever gets a + strep test, take them in for a follow up. Doctors will not tell you to do this. Just call and make the appt.

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This is where it gets somewhat confusing to me. I've read that it can take several doses of an antibiotic before you see progress but that could also mean that the antibiotic isn't working or that it's not PANDAS. Also, if we're assuming his exposure to strep was seven years ago, how can a strep culture come up positive? His symptoms have never changed. Maybe I'm not clearly understanding PANDAS?

 

The tic seems to be back to where it was before the antibiotics. He was doing great yesterday - hardly any tics.

 

An ironic side note, I have had a horrible sore throat (no other cold symptoms just a bad cough) for the past three days. All of this talk about strep and now I'm wondering about myself! I was just telling my husband the other day that I have never had strep (he gets it all of the time).

 

I did put a call into our dr just now. He is an hour away so it's a little trickier to run in for a culture.

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It is VERY confusing. Even the culture may come out negative, but then, it may come out positive. It is easier to the the help of a doctor if the rapid and/or culture come back +.

 

Even if the throat culture comes out negative, it doesn't completely rule out strep.

 

All family members should have strep tests so you should go get one done.PANDAS kids can react to exposure only. And you don't want to reinfect.

 

Even if your child was exposed 7 years ago, there's a chance that he may have never rid himself of that infection or he had many isolated infections. The one at 3 being the first one.

 

There are others who have said they saw some improvement at first then go back to square one. Personally, I would try my hardest to get a different antibiotic. Because you saw improvement then got flooded back with problems, I don't think it would be best to wait a month. Do you still see any improvement? You could try to get a different script with a phone call only. Say you don't think the penicillan is working. Sometimes the will trust you over the phone and call in a new prescription.

 

Did you look at that article I posted about pen and amox failure rate with strep?

 

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

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Thank you for the article link. Yes, I did read it. I am actually on my way to our local dr (our integrative dr is the one who is an hour away) to get a culture. I will make sure they do a rapid and regular culture. I usually never ask for the regular one but will from now on. I plan on asking our integrative dr to put my son on a different med. We did see improvement for a couple of days and now day 5 we are back to square one.

 

All family members should have strep tests so you should go get one done.PANDAS kids can react to exposure only. And you don't want to reinfect.

 

There are others who have said they saw some improvement at first then go back to square one. Personally, I would try my hardest to get a different antibiotic. Because you saw improvement then got flooded back with problems, I don't think it would be best to wait a month. Do you still see any improvement? You could try to get a different script with a phone call only. Say you don't think the penicillan is working. Sometimes the will trust you over the phone and call in a new prescription.

 

Did you look at that article I posted about pen and amox failure rate with strep?

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If you do have strep, then the return to square one may be a result of exposure to your strep.

 

Thank you for the article link. Yes, I did read it. I am actually on my way to our local dr (our integrative dr is the one who is an hour away) to get a culture. I will make sure they do a rapid and regular culture. I usually never ask for the regular one but will from now on. I plan on asking our integrative dr to put my son on a different med. We did see improvement for a couple of days and now day 5 we are back to square one.

 

All family members should have strep tests so you should go get one done.PANDAS kids can react to exposure only. And you don't want to reinfect.

 

There are others who have said they saw some improvement at first then go back to square one. Personally, I would try my hardest to get a different antibiotic. Because you saw improvement then got flooded back with problems, I don't think it would be best to wait a month. Do you still see any improvement? You could try to get a different script with a phone call only. Say you don't think the penicillan is working. Sometimes the will trust you over the phone and call in a new prescription.

 

Did you look at that article I posted about pen and amox failure rate with strep?

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My strep rapid test came back negative. Interestingly, my dr's office doesn't do the 24 hr test - they say their rapid test is 98% accurate versus a accuracy rate of 92% for the longer test. Is that true for anyone else's dr? Since my only symptom is a sore throat, my dr gave me a prescription for Zith thinking that it is probably bacterial.

 

While I was there, I asked him about PANDAS - at first he thought I wanted to talk about the animal but then said he has heard of PANDAS but didn't know much about it. He offered to do some research for me but since we are working with an integrative dr who seems to know more on the subject, I didn't pursue the offer. What I did find out from my dr, which I found interesting, was that over 90% of ear and sinus infections are caused by strep. The dr's don't typically do a throat swab, instead they just prescribe an antibiotic since they would do that even with a neg strep result. I started thinking of how many sinus and ear infections we have had in our house not just with my younger son.

 

If you do have strep, then the return to square one may be a result of exposure to your strep.

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My strep rapid test came back negative. Interestingly, my dr's office doesn't do the 24 hr test - they say their rapid test is 98% accurate versus a accuracy rate of 92% for the longer test. Is that true for anyone else's dr? Since my only symptom is a sore throat, my dr gave me a prescription for Zith thinking that it is probably bacterial.

 

While I was there, I asked him about PANDAS - at first he thought I wanted to talk about the animal but then said he has heard of PANDAS but didn't know much about it. He offered to do some research for me but since we are working with an integrative dr who seems to know more on the subject, I didn't pursue the offer. What I did find out from my dr, which I found interesting, was that over 90% of ear and sinus infections are caused by strep. The dr's don't typically do a throat swab, instead they just prescribe an antibiotic since they would do that even with a neg strep result. I started thinking of how many sinus and ear infections we have had in our house not just with my younger son.

 

If you do have strep, then the return to square one may be a result of exposure to your strep.

 

I think that is a load of bunk about the 98% accuracy. You can search Buster's posts about rapid test accuracy - I think it's at around 60%. Anyway, I am STRUGGLING through the Strep book that Dr. T recommended, and there is one very interesting chapter about ear infections (always our causal symptom with OCD onset) and S. Pneumo. I'll see if I can find a line on-line to this study.

 

By the way, he thought you were talking about the bears? :huh: OMG, it can be scary out there.

 

So maybe the return to square one is "your strep"?

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My ENT thought I was talking about the bear too.... he had this puzzled look on his face until I cleared that up!

 

Interesting about the strep tests because my pediatrician said he has been sending in every single negative swab for a culture for over 20 years because he felt it was necessary.. my kids are prime examples of that.. negative rapids, positive cultures... He said now over the last few years his colleagues who used to tease him about his sending out the cultures are now saying hmm..maybe that was not such a bad idea afterall.

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The doctor saying there's no ned for a culture is BS. I'm sorry, but you need a new doctor.

 

I take this personally. My PANDAS son's first exacerbation...he was crazy over night. no signs of strep. The dr did a rapid because she once read about PANDAS and she had no other answers for us except for a psychiatrist eval.. rapid was negative. 2 days later I got a phone call, the culture they did was positive. He had strep.

 

If that culture was never run...God I can't think where we would be right now.

 

My husband. had a sore throat. being that we now knew our son had PANDAS, he went for a strep test. rapid came back negative., They told him there' sno need for a culture. He doesn't have strep. he insisted on the culture. Guess what...came back postive! He had strep.

 

At least you got a prescription for Zith.

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Welcome.

 

It's important to remember that what works for one child, may not work for another. The first step is trying antibiotics to clear the infection. Once the infection is cleared , healing can begin. But antibiotics isn't as easy as it sounds. One has to find the right antibiotic for your child. It seems most on this board have had most success with Zithromax and higher dose Augmentin. I have also heard a handful with Keflex. Some kids may clear on amoxicillan and penicillan, but that's seems to be on oddity/rarity.

 

Here is one article that explains how pen and amox may not clear strep

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

 

Finding the right antibiotic for your child, unfortunately, is a lot of trial and eror.

 

There is also a research study going on that is the closest thig there is to a diagnostic test. It is being done a Dr Cuningham. You send for a kit, have blood drawn, send it back. The results will tell you if your child falls into a PANDAS range. However, one has to remember that it is still in reasearch phase and it currently costs $400 since funding was lost.

 

Something else is that strep for many children is the original trigger, but they then have oterh triggers like viruses, allergies, etc. Also strep can hide in the sinuses, gut, anal strep, and for girls, vaginal strep. So what symptoms that seen to "just be there" w/o going away could actually be caused by hidden strep that the antibiotic did not erradicate. Alos, get all family members tested for strep. Some kids will have PANDAS symptoms surface from exposure only. One does not need to have a fever or sore throat to have strep.

 

Personally, your family history alone would send up red flags for me.

 

can you please post the link to order this test for dr.Cuningham Vickie?

thank you so much

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