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Well, let me start by saying some kids need IVIG or PEX. Some kids may not have found the right antibiotic yet. If you are not seeing any improvement after a decent amount of time on abx, that may be the case.

 

With my son, I saw all the other PANDAS symptoms that had surfaced go away, but a decent portion of the OCD stayed. The OCD wasn't as bad as it was during the exacerbation, but it was still definitely there and affecting life.It was our third step triggered excaerbation so I had the recovery of the others to compare it to and that's also how I got a sense of what was PANDAS for him and what was not.

 

For some, including my son, CBT, ERP or any other type of intervention like that don't work during an exacerbation. Or maybe it slightly works but not enough to make a real difference. Even when it was residual, my son would not cooperate with CBT.

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Well, let me start by saying some kids need IVIG or PEX. Some kids may not have found the right antibiotic yet. If you are not seeing any improvement after a decent amount of time on abx, that may be the case.

 

With my son, I saw all the other PANDAS symptoms that had surfaced go away, but a decent portion of the OCD stayed. The OCD wasn't as bad as it was during the exacerbation, but it was still definitely there and affecting life.It was our third step triggered excaerbation so I had the recovery of the others to compare it to and that's also how I got a sense of what was PANDAS for him and what was not.

 

For some, including my son, CBT, ERP or any other type of intervention like that don't work during an exacerbation. Or maybe it slightly works but not enough to make a real difference. Even when it was residual, my son would not cooperate with CBT.

 

Through our elementary school experience, middle school experience and now high school experience we've been through many different psychs, all well respected among their peers. We tried all manner of learned coping mechanisms and tricks to disassemble his ocd/anx. Nothing worked...nothing. However, once he was in a recovery phase at the tail end of the middle school exacerbation, I would apply some of the therapies that Tamar Chansky wrote about in Freeing Your Child From Anxiety. Only then did they make a dent and I know it was because his brain was functioning, physically, closer to normal. Again, I can only speak for my child, but he continually is aware that when an exacerbation happen the way he thinks changes. He's aware that a few weeks ago his thoughts were different and not stressful. Since we've been historically blessed with nice long remissions, I can tell you when the exacerbation ends, we have a kid with zero residual damage both physically and emotionally. I think that is what separates PANDAS driven ocd from other typical ocd and why psychological treatment, in our case, needed to differ. Sadly, we never found the psych that could understand that. My approach is to fix the physical impairment while offering all of the comfort measures of psychological support that I can think of because when the physical problem abates, he processes information normally and flourishes.

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Well, let me start by saying some kids need IVIG or PEX. Some kids may not have found the right antibiotic yet. If you are not seeing any improvement after a decent amount of time on abx, that may be the case.

 

With my son, I saw all the other PANDAS symptoms that had surfaced go away, but a decent portion of the OCD stayed. The OCD wasn't as bad as it was during the exacerbation, but it was still definitely there and affecting life.It was our third step triggered excaerbation so I had the recovery of the others to compare it to and that's also how I got a sense of what was PANDAS for him and what was not.

 

For some, including my son, CBT, ERP or any other type of intervention like that don't work during an exacerbation. Or maybe it slightly works but not enough to make a real difference. Even when it was residual, my son would not cooperate with CBT.

 

Through our elementary school experience, middle school experience and now high school experience we've been through many different psychs, all well respected among their peers. We tried all manner of learned coping mechanisms and tricks to disassemble his ocd/anx. Nothing worked...nothing. However, once he was in a recovery phase at the tail end of the middle school exacerbation, I would apply some of the therapies that Tamar Chansky wrote about in Freeing Your Child From Anxiety. Only then did they make a dent and I know it was because his brain was functioning, physically, closer to normal. Again, I can only speak for my child, but he continually is aware that when an exacerbation happen the way he thinks changes. He's aware that a few weeks ago his thoughts were different and not stressful. Since we've been historically blessed with nice long remissions, I can tell you when the exacerbation ends, we have a kid with zero residual damage both physically and emotionally. I think that is what separates PANDAS driven ocd from other typical ocd and why psychological treatment, in our case, needed to differ. Sadly, we never found the psych that could understand that. My approach is to fix the physical impairment while offering all of the comfort measures of psychological support that I can think of because when the physical problem abates, he processes information normally and flourishes.

 

As with every aspect of PANDAS, I think it is important to list the tools and acknowledge that they work differently depending on the severity and stage of the child. We were blessed with great psychological support & were able to use ERP very effectively. But NOT as a cure - as a tool to get through the days. To get to a party, or to touch the playground, or to stop washing till she bled. Or to eat. Just getting through an otherwise impossible day. Once we FINALLY became blessed with Medical help, then we did find that shedding residual OCD was really easy using ERP tools as a support. Maybe she would have shed as quickly - maybe not. She is really good at them now, and during the 2 minor blips, those tools have served her very well. We actually use a version of CBT to deal with all kinds of childhood "woes" now, and it helps her think through a lot of situations. The workbook we used at home to help her understand what was happening to her (which was a huge relief to her) is called "What to do when Your Brain Gets Stuck".

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Tamar Chansky's "Freeing your Child from OCD" is what helped us a lot. Is that the book you meant or is the anxiety another one?

 

However, once he was in a recovery phase at the tail end of the middle school exacerbation, I would apply some of the therapies that Tamar Chansky wrote about in Freeing Your Child From Anxiety.
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Well, let me start by saying some kids need IVIG or PEX. Some kids may not have found the right antibiotic yet. If you are not seeing any improvement after a decent amount of time on abx, that may be the case.

 

With my son, I saw all the other PANDAS symptoms that had surfaced go away, but a decent portion of the OCD stayed. The OCD wasn't as bad as it was during the exacerbation, but it was still definitely there and affecting life.It was our third step triggered excaerbation so I had the recovery of the others to compare it to and that's also how I got a sense of what was PANDAS for him and what was not.

 

For some, including my son, CBT, ERP or any other type of intervention like that don't work during an exacerbation. Or maybe it slightly works but not enough to make a real difference. Even when it was residual, my son would not cooperate with CBT.

 

Through our elementary school experience, middle school experience and now high school experience we've been through many different psychs, all well respected among their peers. We tried all manner of learned coping mechanisms and tricks to disassemble his ocd/anx. Nothing worked...nothing. However, once he was in a recovery phase at the tail end of the middle school exacerbation, I would apply some of the therapies that Tamar Chansky wrote about in Freeing Your Child From Anxiety. Only then did they make a dent and I know it was because his brain was functioning, physically, closer to normal. Again, I can only speak for my child, but he continually is aware that when an exacerbation happen the way he thinks changes. He's aware that a few weeks ago his thoughts were different and not stressful. Since we've been historically blessed with nice long remissions, I can tell you when the exacerbation ends, we have a kid with zero residual damage both physically and emotionally. I think that is what separates PANDAS driven ocd from other typical ocd and why psychological treatment, in our case, needed to differ. Sadly, we never found the psych that could understand that. My approach is to fix the physical impairment while offering all of the comfort measures of psychological support that I can think of because when the physical problem abates, he processes information normally and flourishes.

 

As with every aspect of PANDAS, I think it is important to list the tools and acknowledge that they work differently depending on the severity and stage of the child. We were blessed with great psychological support & were able to use ERP very effectively. But NOT as a cure - as a tool to get through the days. To get to a party, or to touch the playground, or to stop washing till she bled. Or to eat. Just getting through an otherwise impossible day. Once we FINALLY became blessed with Medical help, then we did find that shedding residual OCD was really easy using ERP tools as a support. Maybe she would have shed as quickly - maybe not. She is really good at them now, and during the 2 minor blips, those tools have served her very well. We actually use a version of CBT to deal with all kinds of childhood "woes" now, and it helps her think through a lot of situations. The workbook we used at home to help her understand what was happening to her (which was a huge relief to her) is called "What to do when Your Brain Gets Stuck".

 

Meg's Mom: I will see if I can find a copy of that workbook. I'm all for anything that might help. I only meant that in our experience, we had no luck with the 6 different psychs that we worked with over the years. In some cases, they did far more harm than good. I would love to find one who could really help Gat process the things he's going through and add insight that I may be too close to the situation to see. Can the workbook be used without the guidance of a psych?

 

Vickie: I did mean Freeing Your Child from OCD. I do have both books and found them both to be very good.

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Gat's mom-

 

You can find the workbook on Amazon. It is really great! It has been helpful for my 9 and 6 year old. It REALLY breaks ocd down in a simple matter of fact way. It helps them look for ocd thoughts and gives them tools to fight the ocd. If anything, it has been helpful to me to develop a language to use with them. We did have a helpful psychologist- but I have to say, this book has been more helpful.

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Gat's mom-

 

You can find the workbook on Amazon. It is really great! It has been helpful for my 9 and 6 year old. It REALLY breaks ocd down in a simple matter of fact way. It helps them look for ocd thoughts and gives them tools to fight the ocd. If anything, it has been helpful to me to develop a language to use with them. We did have a helpful psychologist- but I have to say, this book has been more helpful.

 

 

Gat's Mom,

I think I have that book upstairs. Send me a private message with your mailing address and I'll send it to you.

 

Angela

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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.

 

I would add reg. amoxicillin onto the reg. Augmentin...so the ratio of amoxcillin/clav. acid approximates the XR. It won't be time release amoxicillin, but hopefully it will be close enough to XR.

 

Also, I would appeal your insurance company's denial...based on the lack of qualified docs in your area (wherever that may be!). We got our out-of-network psychiatrist covered since the insurance co. couldn't provide us with a QUALIFIED in-network doc (nobody wanted to touch a 7-year-old with full-blown anorexia nervosa with a 10 foot pole!).

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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.

 

I would add reg. amoxicillin onto the reg. Augmentin...so the ratio of amoxcillin/clav. acid approximates the XR. It won't be time release amoxicillin, but hopefully it will be close enough to XR.

 

Also, I would appeal your insurance company's denial...based on the lack of qualified docs in your area (wherever that may be!). We got our out-of-network psychiatrist covered since the insurance co. couldn't provide us with a QUALIFIED in-network doc (nobody wanted to touch a 7-year-old with full-blown anorexia nervosa with a 10 foot pole!).

 

There is the new time release amoxicillin Moxatag. Two of those spaced at 12 hours plus two 250mg regular augmentin also at twelve hours would give you 2000mg amox per day, same as two Augmentin XR, 250 mg of clav acid, which Dr. K feels is important, and a very very good time release profile.

Alex

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