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Had First "Does My Son Have PANDAS?" appt this week...


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Hi everyone!

 

I took my son (7) to a pediatric neurologist (a PANDAS "friendly" - as she has treated children with PANDAS) this week - but kind of left with more ?'s than answers and my head was spinning.

 

Her stance was this...she does NOT believe in doing the blood tests as she says "the results do not affect the treatment - if the strep tests come back positive, and the child exhibits the behavior, I treat it as PANDAS." In my head I was thinking "but WAIT....I've heard the tests are VERY helpful....blah blah blah". I knew she was at least receptive to treatment and I didn't want to p her off so I just let it go (for now).

 

So I asked her what do I do the next time my son exhibits these behaviors? She said take him to his ENT, have his cultured, and if the symptoms correlate - call her and she will treat with an extended round of antibx.

 

But help me ladies....doesn't that seem too simplistic? Based on what I have read....IF he DOES indeed have PANDAS...it would likely be considered mild-moderate (nothing like Sammy's story)....but it is still affecting his life significantly! She does NOT, by the way, believe in the IVIG treatment or steroid treatments, etc. Hmmmmm?

 

My next question is.....is PANDAS only affected by THROAT strep? Or can it be any strep? Meaning - my son has had strep in his sinuses on multiple occasions....but did not have it in his throat. Wouldn't this still cause the same PANDAS symptoms? I would have to think so....Thoughts?

 

Also, what about kids who always have some degree/level of OCD/anxiety....are they going to be looked over about the possibility of PANDAS because they already exhibited symptoms anyway? Hope that makes sense.... I guess I'm thinking...what IF my son has straight-up OCD (he has not been diagnosed)? I know for a fact that when he is sick - those symptoms go off the chart...but are always there to some degree, just more manageable when he isn't sick.....

 

My son has started to obsess about things......to the point of tears and stomach upset? His obsessional thinking is just awful....like he constantly confesses stuff to me - as if what he is telling me he did/thought was/is wrong....and I'll reassure him and tell him "it's ok, that is NORMAL, do not feel bad..." but he just keeps it up. He basically can't stop his racing thoughts at times. I thought I was going to lose my mind this morning as we were on our way home to do Friday work (he schools at home on Fridays, which is how his private school is set up). Redirecting him to other thoughts does not help....

 

Thanks for listening....and I will be so happy to check back later and see what you all had to offer about the dr.'s stance AND strep/sinuses. Many thanks...G

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Well, the strep titer tests (the blood tests) really made it harder for us to get treatment because my daughter always tested neg. on those, despite many, many, many +step tests, so I see her point there.

 

If the treatment she RXs for your son works for him...stick with it, if not, seek more expertise. Some kids do resolve w/ only abx therapy and its a good starting place.

 

And yes, strep in other places than the throat can trigger PANDAS, but a lot of things can cause PANDAS-like symptoms.

 

My opinion (just mine) is that there is no such thing as "straight up OCD". I think there is always an underlying cause, be it infectious or other trauma- OCD is a symptom of something.

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Our pediatrician took the same approach as your dr when it came to the blood work. He said that the blood work can be useful, but it also can be misleading (as in peglem's case) and if he's responding to the abx, why muddy the waters. It wasn't until we saw Dr. Murphy that we got any titers run, and guess what - they were negative, and her response "that doesn't mean it's not PANDAS". So score 1 for my pediatrician for not wanting to poke my child needlessly.

 

Can it be related to strep in places other than the throat - YES!! My son's PANDAS was triggered by a skin infection - not strep throat. And whenever there is strep going around, our ped treats with muciroprin (sp) ointment in the nostrils since the bacteria likes to hang out there too and it won't be caught there with abx. Our dr has now suggested at the first rise in symptoms to have him come in and get checked out. On at least one occassion he tested + for strep without fever or any other outward symptom that I would've noticed. (there were some things the ped noticed - elevated heart rate, etc...) For the record, my son has never complained of a sore throat.

 

As far as the OCD always being there between infections - we have the same issue. The way it has been explained to us is that their brains are still constantly forming new neural pathways - and even after the underlying cause (the infection) is eliminated, some residual OCD may be left b/c they just get "stuck" - so used to thinking that way that they continue. That's why we're also doing behavior therapy - which has been helping us immensely.

 

You might want to also consider a deatiled tracking of symptoms to help you see what's hanging around between infections and with what severity. (I have a spreadsheet based on Busters system if you'd like it - PM me with your email address) I know that's helped us alot - it also helped us identify his one "go to" behavior that ALWAYS means strep exposure.

 

I agree with peglem - if the treatment is working (we've been abx only for +9 months and have been happy so far), stick with it. And be thankful that you have a PANDAS friendly neurologist! We have one too - but from what I understand they may be a rare breed B)

 

Good luck!!

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Hi everyone!

 

I took my son (7) to a pediatric neurologist (a PANDAS "friendly" - as she has treated children with PANDAS) this week - but kind of left with more ?'s than answers and my head was spinning.

 

Her stance was this...she does NOT believe in doing the blood tests as she says "the results do not affect the treatment - if the strep tests come back positive, and the child exhibits the behavior, I treat it as PANDAS." In my head I was thinking "but WAIT....I've heard the tests are VERY helpful....blah blah blah". I knew she was at least receptive to treatment and I didn't want to p her off so I just let it go (for now).

 

So I asked her what do I do the next time my son exhibits these behaviors? She said take him to his ENT, have his cultured, and if the symptoms correlate - call her and she will treat with an extended round of antibx.

 

But help me ladies....doesn't that seem too simplistic? Based on what I have read....IF he DOES indeed have PANDAS...it would likely be considered mild-moderate (nothing like Sammy's story)....but it is still affecting his life significantly! She does NOT, by the way, believe in the IVIG treatment or steroid treatments, etc. Hmmmmm?

 

My next question is.....is PANDAS only affected by THROAT strep? Or can it be any strep? Meaning - my son has had strep in his sinuses on multiple occasions....but did not have it in his throat. Wouldn't this still cause the same PANDAS symptoms? I would have to think so....Thoughts?

 

Also, what about kids who always have some degree/level of OCD/anxiety....are they going to be looked over about the possibility of PANDAS because they already exhibited symptoms anyway? Hope that makes sense.... I guess I'm thinking...what IF my son has straight-up OCD (he has not been diagnosed)? I know for a fact that when he is sick - those symptoms go off the chart...but are always there to some degree, just more manageable when he isn't sick.....

 

My son has started to obsess about things......to the point of tears and stomach upset? His obsessional thinking is just awful....like he constantly confesses stuff to me - as if what he is telling me he did/thought was/is wrong....and I'll reassure him and tell him "it's ok, that is NORMAL, do not feel bad..." but he just keeps it up. He basically can't stop his racing thoughts at times. I thought I was going to lose my mind this morning as we were on our way home to do Friday work (he schools at home on Fridays, which is how his private school is set up). Redirecting him to other thoughts does not help....

 

Thanks for listening....and I will be so happy to check back later and see what you all had to offer about the dr.'s stance AND strep/sinuses. Many thanks...G

 

Our ped takes the same stance as your neurologist and doesn't rely on the blood work to diagnose. If the antibiotics are working then she feels that is what we need to do. We did see an increase in symptoms at one point when he had some sort of infection in his sinuses. So, we feel PANDAS is not only affected by THROAT strep. Our son also stresses between periods of increased symptoms, but it is not bad. I wonder if it is just that his body is not completely healed and that is lingering symptom for now.

 

I would say feel lucky that you found someone willing to treat based off of symptoms vs just off of blood work.

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I would say that titers are a piece of the puzzle which is helpful in some situations, but not all.

 

If a child doesn't have positive cultures (maybe strep is hiding out somewhere that is difficult to culture, like the sinuses) then high (or actually rising) titers might provide some "evidence" of a strep infection. This information would be esp. useful if your child turns out to be one that doesn't respond easily to "typical antibiotics" so the non-reponse (combined with elevated/rising titers) would be an indication to fight even harder with a different antibiotic combo. or stronger antibiotic.) VS>>> if you didn't know titers where high, and didn't have positive cultures, you might give up after the first or 2nd antibiotic didn't make much headway.

 

But, your doc is right, in that low titers do not rule out PANDAS. (My dd has always had low titers...we don't bother to check them anymore.) However, for the kids that do get high titers (yet culture neg), they can be useful. I think Worried Dad uses them (and did check titers on the family, to find out that he may be the culprit/source of strepm, and they consequently treated the whole family with antibiotics based on elevated titers.)

Edited by EAMom
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