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Y-BOCS Test


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Once again, Dad, terrific news! Since we're on the same path . . . about a month behind you . . . we're encouraged by your results. Maybe Sammy's response was not just a fluke, and it CAN be repeated!

 

Back to Y-BOCS: okay, we're finally on the right page, there. My son's been suffering with various OCD symptoms and "waxing" since the age of 6 and we have definitely seen the "Extreme" end of the spectrum via the Y-BOCS scale this past summer. He probably went off the chart at that point in time!

 

So, all told, we've been on high-dose abx (Augmentin 875 and Augmentin XR 1,000, both 2x daily) for a total of about 4 months, with the Augmentin XR for about the last 2+. Tonight via the Y-BOCS, he scored an 18, or "Moderate." Looking back at where we were in August-September, I've no doubt that the abx is bringing him back! And I'd put my money on the XR, as well, being as his steadiest gains have been while on that dosage.

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When I look at what the Yale Brown test is online, it's much shorter than what I answered in the psychologist's office. Unless some of the questions were the test, some just for records, but she asked more detailed questions.

 

For those who have done the test in an office, is it the same that's online? Online it's maybe 5 questions on obsessions, 5 questions on compulsions.

 

I then also had to keep track of different things on graphs (not all at realted to the scale).

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First.... : :) Great news!!

 

Second....please refresh my memory.....did your son ever have high strep titers? Either ASO or AntiDNAase B? When were they last tested? Has he had an immune work-up? Just trying to put pieces together.....wondering about the high dose for my kid.......

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Worried Dad,

Thank you so much for sharing your news. It is heartwarming to read. My dd is also slowly coming back to us but I still live with fear every day. Our latest crappy news is that insurance wouldn't pay for Dr. T (out of area) and as of Jan 1st, they won't pay for the XR, only regular Augmentin. I can't contiue to pay close to $300 for monthly drugs and will likely have to switch to regular Augmentin. Since she is on Zith too, hopefully she won't regress. If she does, we'll FIND a way but I'm already going broke. And she won't be able to be on the 2000mg dose becase of too much clav acid. Not sure what we'll do.

 

Thanks for sharing.

 

Angela

 

 

I'll try to keep this brief. Our son, 13, has been fighting PANDAS for almost 3 years. Originally diagnosed with acute rheumatic fever / Sydenham's chorea, then changed to PANDAS. Three major exacerbations, each worse than the previous ones. Three rounds of IVIG that helped but only temporarily.

 

We started the "Saving Sammy" dose of augmentin XR about 4 months ago. Before that, our son's Y-BOCS score was 35 (Extreme). Today he was retested... and his score has dropped to 9 (Mild), almost subclinical!!!

 

Five months ago, we were hanging on by our fingernails, wondering how much longer we could cope. Now, we can see our son coming back to us a little more each week. There is hope for all of our children!

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Honestly, we haven't. We got such pushback from local docs about the 2000 mg of XR daily, it made us worry about the effects of cranking up the dosage long-term. And - after reading "Saving Sammy" and comparing notes with Beth Maloney - our son's case (age of onset, weight / body type, personality, symptom onset and severity) was so similar to Sammy's that we decided to just try what worked for him. Since it's been working so well, we haven't really explored a higher (or lower) dose.

 

If we had seen what Sammy experienced as they increased his XR dose by trial and error - if our son's improvement had stagnated or reversed - then we would have asked Dr. K to up the dose. Luckily, the 2000 mg dosage has worked well. But you bring up a very good point: every child is unique, and the dose that works for one kid (or two) won't necessarily be right for another.

 

 

Worried Dad

Have you ever tried to up the XR dose to speed up the improvement? Curious if it is just working at right dose, neither higher nor lower(absolutely).

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Hi, Vickie:

 

Our experience is like yours. The Y-BOCS testing administered in our psychologist's office was much more involved than 10 questions. Maybe the online version is bare-minimum, or maybe certain answers generate follow-up questions online? Weird.

 

 

When I look at what the Yale Brown test is online, it's much shorter than what I answered in the psychologist's office. Unless some of the questions were the test, some just for records, but she asked more detailed questions.

 

For those who have done the test in an office, is it the same that's online? Online it's maybe 5 questions on obsessions, 5 questions on compulsions.

 

I then also had to keep track of different things on graphs (not all at realted to the scale).

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Awesome! I hope and pray that the high-dose abx approach works well for many, many PANDAS sufferers out there... and that the recent publicity makes it easier for us parents to get prescriptions for them!!!

 

 

Once again, Dad, terrific news! Since we're on the same path . . . about a month behind you . . . we're encouraged by your results. Maybe Sammy's response was not just a fluke, and it CAN be repeated!

 

Back to Y-BOCS: okay, we're finally on the right page, there. My son's been suffering with various OCD symptoms and "waxing" since the age of 6 and we have definitely seen the "Extreme" end of the spectrum via the Y-BOCS scale this past summer. He probably went off the chart at that point in time!

 

So, all told, we've been on high-dose abx (Augmentin 875 and Augmentin XR 1,000, both 2x daily) for a total of about 4 months, with the Augmentin XR for about the last 2+. Tonight via the Y-BOCS, he scored an 18, or "Moderate." Looking back at where we were in August-September, I've no doubt that the abx is bringing him back! And I'd put my money on the XR, as well, being as his steadiest gains have been while on that dosage.

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Our son's titers definitely rose with each exacerbation, but unfortunately we can't prove how high. The lab to which our original DAN doc sent the blood samples was focused on treating adults, I think, so they just considered anything over 200 as "off the scale." So we know his ASO titer was above 200 - and stayed there for at least 4-5 months after his original diagnosis (2nd ASO titer to gauge progress) - but we don't have a specific number. That, of course, prompted all the local specialists to completely dismiss the PANDAS diagnosis because we couldn't "prove" that his titers were "high enough" to be significant. Sigh....

 

His ASO did drop into the 130-140 range at 2 "waning" points after treatment (IVIG, long-term abx at a lower dose than now) and went back up above 200 after 2 subsequent exacerbations. So we can show that his ASO rises along with symptom severity. Again, this did not convince any local docs, though. The last test was done in September by our new DAN doc (whom we spent a full year searching for, after our original DAN doc passed away): this was after 2 rounds of IVIG last summer, and it was still at 280. Not super high, but double what it was last February before his 3rd exacerbation (143), and I assume it would have peaked much higher in April or May of last year (exacerbation 3 hit on 3/29/09). And of course he hasn't been in a school population for almost 3 years, so he's not exposed to strep as much as "normal school-age kids."

 

As far as I recall, his anti-DNAse B was never significantly elevated... but his ANA has consistently come back positive (above normal range), which I believe indicates a general autoimmune issue.

 

Hope that helps!

 

 

First.... : :) Great news!!

 

Second....please refresh my memory.....did your son ever have high strep titers? Either ASO or AntiDNAase B? When were they last tested? Has he had an immune work-up? Just trying to put pieces together.....wondering about the high dose for my kid.......

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WorriedDad,

 

First I want to express how happy (for you) :) and at the results you are seeing with the Augmentin XR. I think it is fair to say that "one size DOES NOT fit all" and that I am so glad you are finding what works for your child. Our children are paving the way to better understanding this crappy disease/syndrome. If only research/science can catch up-quick!

 

For all the newbies out there I want to stress the importance of making sure when you have ASO titers checked that the lab puts a "qunative value" on them. Some do, without requesting, some don't (it's just positive or negative). PLEASE, make sure the doctor writes that on the lab request. Remind the lab, when you are there. These numbers can be very important when it comes to making a convincing case to your doctors. Some of the very best PANDAS doctors sometimes forget the very simple things, like these, as they are so overwhemled with patients.

Until science/research and education catches up (ie: diagnostic tests such as Madeline Cunningham test, etc.), and until doctors know how to diagnose and parents don't have to "convince" the doctores your child is suffereing, we as parents have to take the active role, ourselves!

 

Together, with our doctors and through networking with each other, we WILL win the war, not just the battle(s)!!!!!!

 

 

Our son's titers definitely rose with each exacerbation, but unfortunately we can't prove how high. The lab to which our original DAN doc sent the blood samples was focused on treating adults, I think, so they just considered anything over 200 as "off the scale." So we know his ASO titer was above 200 - and stayed there for at least 4-5 months after his original diagnosis (2nd ASO titer to gauge progress) - but we don't have a specific number. That, of course, prompted all the local specialists to completely dismiss the PANDAS diagnosis because we couldn't "prove" that his titers were "high enough" to be significant. Sigh....

 

His ASO did drop into the 130-140 range at 2 "waning" points after treatment (IVIG, long-term abx at a lower dose than now) and went back up above 200 after 2 subsequent exacerbations. So we can show that his ASO rises along with symptom severity. Again, this did not convince any local docs, though. The last test was done in September by our new DAN doc (whom we spent a full year searching for, after our original DAN doc passed away): this was after 2 rounds of IVIG last summer, and it was still at 280. Not super high, but double what it was last February before his 3rd exacerbation (143), and I assume it would have peaked much higher in April or May of last year (exacerbation 3 hit on 3/29/09). And of course he hasn't been in a school population for almost 3 years, so he's not exposed to strep as much as "normal school-age kids."

 

As far as I recall, his anti-DNAse B was never significantly elevated... but his ANA has consistently come back positive (above normal range), which I believe indicates a general autoimmune issue.

 

Hope that helps!

 

 

First.... : ^_^ Great news!!

 

Second....please refresh my memory.....did your son ever have high strep titers? Either ASO or AntiDNAase B? When were they last tested? Has he had an immune work-up? Just trying to put pieces together.....wondering about the high dose for my kid.......

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GREAT NEWS! My son's Y-BOCS was 38 in late nov. early Dec. I haven't had it tested again since his T&A and many months of antibiotics. We tried the Augmentin 2000 XR for 7 weeks prior to his T&A and it didn't have any effect. We saw results after 13 days T&A and 4 weeks post T&A has been able to return to school and doing great. I am seeing his OCD creep in a little with the added stress. Did your son do daily OCD "work" or did his symptoms just leave with time and abx?

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Honestly, we tried the CBT / ERP therapies and didn't make any progress (or almost none). Our OCD specialist eventually gave up on treating our son in an office setting and just coached my wife and me on what to attempt at home (with minimal luck). After starting the XR, he started shedding OCD behaviors on his own, rapidly.

 

We're assuming there will still be some habitual "OCD residue" at some point when he's close to baseline and we'll need to renew our CBT / ERP efforts then. Hopefully, those skills will help him deal with any flare-ups down the road.

 

 

GREAT NEWS! My son's Y-BOCS was 38 in late nov. early Dec. I haven't had it tested again since his T&A and many months of antibiotics. We tried the Augmentin 2000 XR for 7 weeks prior to his T&A and it didn't have any effect. We saw results after 13 days T&A and 4 weeks post T&A has been able to return to school and doing great. I am seeing his OCD creep in a little with the added stress. Did your son do daily OCD "work" or did his symptoms just leave with time and abx?
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You'll know when you hit the point of residual OCD. I just knew it with my son. But, you know what, when I finally realized the remaining OCD wasn't going to go away on its own and we started to tackle the remaining head on, it actually went away rather quick ( compared to how long it may take for "regular" OCD). Still anxiety, and wasn't easy, but I was surprised.

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This is what I found too. I might try it again down the road. A Doctor friend told me there are two aspects of this and I addressed the PANDAS and now need to address the OCD. I think it is too early still and a bit of a waste of time. Thanks for your input and good luck with continued success.

 

Honestly, we tried the CBT / ERP therapies and didn't make any progress (or almost none). Our OCD specialist eventually gave up on treating our son in an office setting and just coached my wife and me on what to attempt at home (with minimal luck). After starting the XR, he started shedding OCD behaviors on his own, rapidly.

 

We're assuming there will still be some habitual "OCD residue" at some point when he's close to baseline and we'll need to renew our CBT / ERP efforts then. Hopefully, those skills will help him deal with any flare-ups down the road.

 

 

GREAT NEWS! My son's Y-BOCS was 38 in late nov. early Dec. I haven't had it tested again since his T&A and many months of antibiotics. We tried the Augmentin 2000 XR for 7 weeks prior to his T&A and it didn't have any effect. We saw results after 13 days T&A and 4 weeks post T&A has been able to return to school and doing great. I am seeing his OCD creep in a little with the added stress. Did your son do daily OCD "work" or did his symptoms just leave with time and abx?

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Hi Vickie. Do you mean tackling the remaining head on with CBT and ERP? My 15 yr old son is so resistant to do it. It has been 6 years of this and I think he is worn out. It sounded like Sammy's just left with little CBT/ERP work.

 

 

You'll know when you hit the point of residual OCD. I just knew it with my son. But, you know what, when I finally realized the remaining OCD wasn't going to go away on its own and we started to tackle the remaining head on, it actually went away rather quick ( compared to how long it may take for "regular" OCD). Still anxiety, and wasn't easy, but I was surprised.
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