Y-BOCS Test

[Worried_Dad]

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!

[peglem]

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!

Wow! What a great feeling to just hear this news about somebody else!

[MomWithOCDSon]

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!

 

That is wonderful news!

 

I'm still figuring out all the pieces to this PANDAS stuff; what is "Y-BOCS"?

[PKM]

That is wonderful that your son is doing so well! You must be thrilled.

 

My son (8) was also diagnosed with Sydenham's (about one year ago) and he was put on Pen VK prophilactically. His primary issues have been related to movment - mostly chorea and tics. He did have some emotional lability but that is gone and it was pretty short lived. He has never had anything that resembles any OCD or even OCD tendencies (and I have read closely what people have described as OCD on this site and elsewhere).

 

My son was progressing nicely up until a few weeks ago. He has had 4 viruses in the last 6 weeks and he has had some VERY difficult days movement wise. I am starting to wonder if it might be a good idea to switch him to Augmentin XR. I am wondering if your son was on Pen VK prophilactically and you switched him to the Augmentin XR or was he on nothing prophilactically before you started the Augmentin XR??

 

Any movement issues with your son or has it always mostly been OCD related issues?

 

Thanks

[thereishope]

Yeah!!!!! I'm so glad you got him retested! How much do you want to copy both test results and send them to all the people who ever said anything negative to you?

 

I believe it stands for Yale Brown Obsessive Compulsive Scale? It's how they deem how extreme the OCD is. It's a questionaire you fill out rating different things. They then score it and you get a number. I can't remember how the numbers are blocked off.

[faith]

I'm still figuring out all the pieces to this PANDAS stuff; what is "Y-BOCS"?

 

MOM, really!!!...............(lol, thanks, I was wondering too... )

 

 

WD, thanks for posting that. So glad to hear things are improving for you.

 

Faith..

[Kayanne]

That is absolutely fantastic news!!! I am so happy for your family....thanks for keeping us posted!

 

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!

[coco]

Worried Dad! That is WONDERFUL news! I am so happy for you and your family! My dd also scored a 35 on YBOCS last summer and I can only pray and hope that someday we will be lucky enough to receive a score as low as your son. Quick question: Do you attribute the most progress from the AugXR rather than the IVIG? Do you think that it all could have been a cumulative effect? Again, so happy for you!!!

[GatsMom]

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!

 

We're on day 4 of the Saving Sammy dose. I couldn't ask to have read anything better than your post! Congratulations to you and your family and thanks for updating, and thereby encouraging, the group!

 

Gat's mom.

[Worried_Dad]

Thanks, everybody, for the encouragement. Yeah, just wanted to post some good news, because that's the only thing that kept my wife and I going at various times over the past few years.

 

MomWithOCDSon: Vickie is right on the money. Y-BOCS = Yale-Brown Obsessive Compulsive Scale, and it's a test administered to "score" the severity of OCD symptoms in a patient. Here's the breakdown:

• 0-7 Subclinical
  
• 8-15 Mild
  
• 16-23 Moderate
  
• 24-31 Severe
  
• 32-40 Extreme
  

PKM: Yep, when our son first got sick, he had "seizure-like" episodes where his limbs would jerk and twitch uncontrollably, migratory joint pain, muscle weakness, difficulty walking. Nothing we recognized as OCD at all. So the ARF / SC diagnosis seemed to fit. Then major exacerbation after abx were discontinued, and this time classic PANDAS symptoms: overnight explosion of OCD, vocal as well as motor tics, emotional lability, anorexia, urinary urgency / frequency, etc. Symptoms have been different with each exacerbation, but progressively more severe. Oh, and we were on augmentin for prophylaxis... but only 500 mg daily, and not XR, and that dose was not sufficient to protect him from exacerbations. Similar to Sammy Maloney's experience: for that 1st year, any lowering of the dose below 2000 mg daily of XR led to a return of behaviors.

 

coco: Great question. Don't honestly know how much of the improvement to attribute to the 2 full rounds of IVIG with Dr. K last summer. I just know that - 3 months after the IVIG's - we had only seen minor improvement (20-25%) and were getting pretty desperate. Within 2 weeks of starting the high-dose augmentin XR, we started seeing dramatic progress and our son started shedding OCD behaviors every day. Sure seemed like too immediate a reaction to be coincidence... but the IVIG could have "set the stage."

[Megs_Mom]

You and your son are on my list of personal heroes. Congratulations, I could not be happier for you. Thanks for the wonderful update.

 

Meg was a 28 at her worst - and the idea of anything higher than that was very frightening. She is now subclinical as well, and we pray to stay there. Using the Y-Boc scale was a very helpful tool to convince doctors that something other than regular OCD was going on, as her score would change by 18+ points overnight. That is a clinical definition of PANDAS, not the waxing and waning that some talk about with regular OCD, which can be a 5-10 point swing

[sf_mom]

Fantastic News and look forward to further updates.

[CZL]

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).

[memom]

You are a guiding light for us all. We have seen glimpses of this with steroids. Hope it is within our reach sooner rather than later. DD was around 30 at her worst. 8 after steroids/ Tonsillectomy/antibiotics. Not sustainable yet for us. Keep adjusting the antibiotics, treating brother, and another month of steroids. So want this to be a distant memory.

 

Ellie

[T_Mom]

Yes!!! Great to hear!!