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We have been through 3 episodes of PANDAS now - her only symptoms are severe and sudden onset of OCD (well, except for needing to pee all the time, sep anxiety, etc - I just mean no tics, except maybe a cough that comes & goes). We have used ERP therapy each time, and found it to be a lifesaver. Even though we are working as hard as possible on the medical solution, we find that the OCD seems to outlast the episode itself, and to get stronger each time if we don't use the tools. The days of sudden onset are so hard, I cannot imagine her not having tools to at least try to dial it down. At extreme times, they don't work as well, but they do help to keep the overall episode manageable (ie, less panic attacks about the feelings/thoughts, more ability to attend all events & school desite the OCD, more self confidence through the attack).

 

They are great tools - for life as well as OCD. She is certainly becoming a very brave person. I would add that this will not help with tics, of course, and ERP therapy is not really about using logic, so it's not really about rationalizing with her during a meltdown. It's more tools to try to keep the meltdown from coming. Hard work, but since we are now on episode 3 or 4, we needed help from all directions. I'd call this training a different part of her brain to do the work of the part that is affected.

 

Susan

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ERP? Does that stand for something like Exposure/Response? I think what I do w/ my son may fall into that catagory. If that's what it is, that does help him a lot. I did a little of that when he was still experiencing an episode, but not to the extent I do it now. Even during an episode, it did help sometimes.

 

 

 

We have been through 3 episodes of PANDAS now - her only symptoms are severe and sudden onset of OCD (well, except for needing to pee all the time, sep anxiety, etc - I just mean no tics, except maybe a cough that comes & goes). We have used ERP therapy each time, and found it to be a lifesaver. Even though we are working as hard as possible on the medical solution, we find that the OCD seems to outlast the episode itself, and to get stronger each time if we don't use the tools. The days of sudden onset are so hard, I cannot imagine her not having tools to at least try to dial it down. At extreme times, they don't work as well, but they do help to keep the overall episode manageable (ie, less panic attacks about the feelings/thoughts, more ability to attend all events & school desite the OCD, more self confidence through the attack).

 

They are great tools - for life as well as OCD. She is certainly becoming a very brave person. I would add that this will not help with tics, of course, and ERP therapy is not really about using logic, so it's not really about rationalizing with her during a meltdown. It's more tools to try to keep the meltdown from coming. Hard work, but since we are now on episode 3 or 4, we needed help from all directions. I'd call this training a different part of her brain to do the work of the part that is affected.

 

Susan

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Yes, sorry, ERP stands for Ritual and Prevention Therapy - it is done as a part of CBT therapy, but many CBT therapists don't actually practice ERP. Essentially, it is identifing all the things that are done/caused/fear by OCD, and the ritual they use to dial down the anxiety. Then slowly, they learn to overcome the fear, and not do the ritual. As a result, the fear dials down. Until our latest episode, we were very succesful just doing this at home. We read Dr. March's book Talking Back to OCD: The Program that Helps Kids and Teens say NO WAY - and Parents Say Way to Go - to give ourselves a good perspective on what OCD therapy looks like. It is very helpful.

 

Our lastest episode was too complicated for us to handle on our own, and we now have an ERP therapist, and that is working. Meg also loved the book "What do to when your brain gets stuck", that explains OCD. We have a lot of OCD in our family, so we started on this route before realizing that her OCD is atypical, and that she likely has PANDAS. So now we are persuing that route (love this site, thanks all) in terms of testing and treatment (she did the 5 day Prednisone burst - with shocking results, nearly 80% immediate reduction in symptoms for about 7 days, then it came back, and now on Zithro) - but we still do the ERP therapy every day at home as it keeps her much calmer. We don't have meltdowns right now - they seemed to be a result of extreme fear about the thoughts she was having.

 

ERP? Does that stand for something like Exposure/Response? I think what I do w/ my son may fall into that catagory. If that's what it is, that does help him a lot. I did a little of that when he was still experiencing an episode, but not to the extent I do it now. Even during an episode, it did help sometimes.

 

 

 

We have been through 3 episodes of PANDAS now - her only symptoms are severe and sudden onset of OCD (well, except for needing to pee all the time, sep anxiety, etc - I just mean no tics, except maybe a cough that comes & goes). We have used ERP therapy each time, and found it to be a lifesaver. Even though we are working as hard as possible on the medical solution, we find that the OCD seems to outlast the episode itself, and to get stronger each time if we don't use the tools. The days of sudden onset are so hard, I cannot imagine her not having tools to at least try to dial it down. At extreme times, they don't work as well, but they do help to keep the overall episode manageable (ie, less panic attacks about the feelings/thoughts, more ability to attend all events & school desite the OCD, more self confidence through the attack).

 

They are great tools - for life as well as OCD. She is certainly becoming a very brave person. I would add that this will not help with tics, of course, and ERP therapy is not really about using logic, so it's not really about rationalizing with her during a meltdown. It's more tools to try to keep the meltdown from coming. Hard work, but since we are now on episode 3 or 4, we needed help from all directions. I'd call this training a different part of her brain to do the work of the part that is affected.

 

Susan

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Susan and Vickie, I could really use your guidance here!

 

Our son (13) just had rounds 2 and 3 of IVIG in Chicago with Dr. K (June and July). He's shown minor improvement, but (unlike after round 1 in October 2008) his OCD symptoms haven't abated much and are absolutely crippling right now. Contamination fears pretty much keep him a prisoner in our house (sometimes in specific rooms that are "safe"). Coping with the fears and rituals is draining my wife and me to the dregs.

 

We've been trying CBT (ERP) with a local psychologist who specializes in OCD and anxiety disorders. We're making no progress. Our son just insists that he's "doing everything he can to fight the OCD already" and can't (or won't) try ERP with anything new. We've tried having him rank his obsessions / compulsions and tell us which is the "lowest anxiety level" so we can target the easiest stuff first. No dice. He just says he "can't do anything else."

 

Our psychologist is basically out of ideas. He's suggested to us that we need to consider an intensive residential program. The closest such facility is 4 hours away, out of state. Our son would completely freak if he was suddenly thrust into this "foreign setting" and I shudder to think about how he (and the staff) would cope. We want to avoid this option at all costs!

 

Sounds like you've both had success with the CBT / ERP approach. So I'm wondering if you can give me some pointers?

  • Should we force the issue more, pick a ritual to target, and push our son to tackle it by making it a condition for doing something he wants to do (like play computer games)? The books I've read say not to impose these targets, to let the child feel empowered and allow them to pick which rituals to target in which order. But we (and the therapist) have tried this for months, and it's just not working.
  • We haven't tried an SSRI yet. Dr. K is dead-set against these, and Dr. Latimer said she's found them to be largely ineffective for PANDAS kids. Have you tried SSRIs for your children? Did they help? (We have an appt we've been waiting on for 3 months with a local ped psychiatrist, and I'm guessing he'll want to prescribe an SSRI for our son.) Do we need to start with a very low dose? Have read studies by Dr. Tanya Murphy showing that PANDAS children reacted badly to "normal" doses of SSRIs (suicidality, etc.).

Frankly, we're desperate. This exacerbation hit on March 29, and it's been a long 5 months. We'd be extremely grateful for any advice you can offer!

 

Brian

 

 

Yes, sorry, ERP stands for Ritual and Prevention Therapy - it is done as a part of CBT therapy, but many CBT therapists don't actually practice ERP. Essentially, it is identifing all the things that are done/caused/fear by OCD, and the ritual they use to dial down the anxiety. Then slowly, they learn to overcome the fear, and not do the ritual. As a result, the fear dials down. Until our latest episode, we were very succesful just doing this at home. We read Dr. March's book Talking Back to OCD: The Program that Helps Kids and Teens say NO WAY - and Parents Say Way to Go - to give ourselves a good perspective on what OCD therapy looks like. It is very helpful.

 

Our lastest episode was too complicated for us to handle on our own, and we now have an ERP therapist, and that is working. Meg also loved the book "What do to when your brain gets stuck", that explains OCD. We have a lot of OCD in our family, so we started on this route before realizing that her OCD is atypical, and that she likely has PANDAS. So now we are persuing that route (love this site, thanks all) in terms of testing and treatment (she did the 5 day Prednisone burst - with shocking results, nearly 80% immediate reduction in symptoms for about 7 days, then it came back, and now on Zithro) - but we still do the ERP therapy every day at home as it keeps her much calmer. We don't have meltdowns right now - they seemed to be a result of extreme fear about the thoughts she was having.

 

ERP? Does that stand for something like Exposure/Response? I think what I do w/ my son may fall into that catagory. If that's what it is, that does help him a lot. I did a little of that when he was still experiencing an episode, but not to the extent I do it now. Even during an episode, it did help sometimes.

 

 

 

We have been through 3 episodes of PANDAS now - her only symptoms are severe and sudden onset of OCD (well, except for needing to pee all the time, sep anxiety, etc - I just mean no tics, except maybe a cough that comes & goes). We have used ERP therapy each time, and found it to be a lifesaver. Even though we are working as hard as possible on the medical solution, we find that the OCD seems to outlast the episode itself, and to get stronger each time if we don't use the tools. The days of sudden onset are so hard, I cannot imagine her not having tools to at least try to dial it down. At extreme times, they don't work as well, but they do help to keep the overall episode manageable (ie, less panic attacks about the feelings/thoughts, more ability to attend all events & school desite the OCD, more self confidence through the attack).

 

They are great tools - for life as well as OCD. She is certainly becoming a very brave person. I would add that this will not help with tics, of course, and ERP therapy is not really about using logic, so it's not really about rationalizing with her during a meltdown. It's more tools to try to keep the meltdown from coming. Hard work, but since we are now on episode 3 or 4, we needed help from all directions. I'd call this training a different part of her brain to do the work of the part that is affected.

 

Susan

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Hi, I am responding without regard to logic, reason, etc because I also figure you have run out of that, it's the nature of the frustration you are going through.

 

You know what I mean.

 

So I'll venture into the medication morass. Anti-psychotics are the only things that have settled my son. Have you talked to a psychiatrist about them? (NOT SSRI's!!!!)

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Hi – I am so sorry about your son – we also find OCD to be very “sticky” and find that beyond medical options, our daughter has to have ERP therapy to get rid of the OCD. We have OCD and anxiety in our family, so I think she has a predisposition, and that may make it a little more severe. Happily, she can pretty much get rid of it with hard work, versus what we have learned that "regular" OCD looks like in a child who might have a good bit everyday. So there is good news.

 

The thing about ERP is that the child has to be motivated to do it – I have a file about this that I can send you if you’d like. After education, the next big thing that works for us, is rewards. We start with the tiniest thing – like when early on we had to deal with extreme separation anxiety, where she could literally not be a room away from me without complete panic. This was very debilitating. So we agreed on a goal – to spend 30 seconds (doesn’t that sound silly!) in a room while I stood in the hall just out of sight. It took about 4 times to successfully do the 30 seconds. She got a tiny reward (we use points) just for trying, each of the 4 times. When she did it, she got a bigger reward – maybe 4 points. We have a prize box that comes out whenever this strikes. It has all kinds of things she likes, from card games, coupons for ice cream or a bike ride, to extra Wii time, a book that she wants, etc. We make lots of things worth just a few points, and a few awesome ones worth as many as 40 (say a Wii game). We have things that are rights (like 30 minutes of TV a day, or an hour of playtime with friends). Then she can very easily earn more. Like every extra 15 minutes of TV is only 3 points. Playtime with Friends is only 2 points per 15 minutes. We try to give her a plan that is worth about 20 points a day, during the worst of it. And reward for effort, as well as success.

 

The point is that you WANT him to succeed as much as possible, so that they gain confidence. So you might not only pick the hardest thing (playing alone without mom in the room), but then break that down into the tiniest thing (30 seconds). Then once they master that, you move up the goal. So you might, over the course of a week, do 30 sec, 1 min, 3 min, 8 min, 15 min – doing each one 3-5 times until they master it. The first couple of weeks are really just about building confidence that they are in charge. At the worst, this does dominate our lives for a few weeks. We keep a journal for her each day, and in the morning, we start by reminding her of what she succeeded at the day before, and what goal we set the night before, for today. We set goals with her every night. We include at least one fun thing that we want to do, as a goal. We try to start the day with a meal that includes protein, and ensure that she is getting as much sleep as is possible. So for us, this meant sleeping with her for a while, until we could knock that one out as well. Once they master a goal, we don't reward for that anymore - we reward for attempting the next step in ERP. We use a lot of love & hugs and "great jobs" and comments about how amazingly courageous she is, since we are forced to ask her to do things that are very difficult.

 

For books, I’d strongly recommend reading “What to do when your Brain gets Stuck” – great workbook for kids. For yourselves, try reading John March’s book, Talking Back to OCD: The Program that Helps Kids and Teens say NO WAY - and Parents Say Way to Go – this book will help you layout an ERP plan and to evaluate your therapist to see if they understand ERP therapy. You can also read Aureen Wagner’s book, which is fabulous, What to do when your Child has OCD: Strategies and Solutions – this is more general, not so much about ERP, but is really helpful to understanding the way OCD works.

 

I don’t always understand what is going on with my daughter – the OCD arrives overnight, but it does not go away when you’d think that a PANDAS episode is over. It stays longer & longer, if we don’t get really aggressive with ERP. This took us a while to learn, usually we don’t start for a month or two. Now, we plan to hit immediately with anti-biotics & prednisone, start ERP immediately, and then move to IVIG if it is worse than the last few times. My gut, however, is that her OCD is so bad when it hits, that we will always have to use this as well as the medical options. Very frustrating, but once you get used to the therapy, it is not that bad. It feels really slow at first, but then it really moves along. Write a journal for yourself, because once it improves, it will start to seem like it hasn’t, if you don’t keep track of how bad it once was.

 

We have not tried SSRI's - they take a while to work, but if they do work, are a great compliment to helping ERP get started. Also, I just want to comment that while we have not done a residential treatment program, and it would be an incredibly painful decision, I have heard amazing things about their success. Most kids that go in are completely convinced that it will not help, but they do. I cannot imagine the pain of making this decision - but on the other hand, the pain of being trapped in contamination fears and rituals is really bad too. You may also want to post to ask questions about these centers, at www.ocdandparenting@yahoo.com. There are a lot of parents there that have been through this.

 

Sorry for long post, hope this is helpful - I am new here & hope I have not written too much. I have learned so much here about PANDAS. I have written about our experience with OCD and PANDAS at www.joyforanna.blogspot.com. There are a lot of other books there, not sure if it would be helpful or painful to read about this experience or not, but thought I'd offer up in case it helps. Susan – Meg’s Mom.

 

 

Susan and Vickie, I could really use your guidance here!

 

Our son (13) just had rounds 2 and 3 of IVIG in Chicago with Dr. K (June and July). He's shown minor improvement, but (unlike after round 1 in October 2008) his OCD symptoms haven't abated much and are absolutely crippling right now. Contamination fears pretty much keep him a prisoner in our house (sometimes in specific rooms that are "safe"). Coping with the fears and rituals is draining my wife and me to the dregs.

 

We've been trying CBT (ERP) with a local psychologist who specializes in OCD and anxiety disorders. We're making no progress. Our son just insists that he's "doing everything he can to fight the OCD already" and can't (or won't) try ERP with anything new. We've tried having him rank his obsessions / compulsions and tell us which is the "lowest anxiety level" so we can target the easiest stuff first. No dice. He just says he "can't do anything else."

 

Our psychologist is basically out of ideas. He's suggested to us that we need to consider an intensive residential program. The closest such facility is 4 hours away, out of state. Our son would completely freak if he was suddenly thrust into this "foreign setting" and I shudder to think about how he (and the staff) would cope. We want to avoid this option at all costs!

 

Sounds like you've both had success with the CBT / ERP approach. So I'm wondering if you can give me some pointers?

  • Should we force the issue more, pick a ritual to target, and push our son to tackle it by making it a condition for doing something he wants to do (like play computer games)? The books I've read say not to impose these targets, to let the child feel empowered and allow them to pick which rituals to target in which order. But we (and the therapist) have tried this for months, and it's just not working.
  • We haven't tried an SSRI yet. Dr. K is dead-set against these, and Dr. Latimer said she's found them to be largely ineffective for PANDAS kids. Have you tried SSRIs for your children? Did they help? (We have an appt we've been waiting on for 3 months with a local ped psychiatrist, and I'm guessing he'll want to prescribe an SSRI for our son.) Do we need to start with a very low dose? Have read studies by Dr. Tanya Murphy showing that PANDAS children reacted badly to "normal" doses of SSRIs (suicidality, etc.).

Frankly, we're desperate. This exacerbation hit on March 29, and it's been a long 5 months. We'd be extremely grateful for any advice you can offer!

 

Brian

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Brian, that sounds so heart breaking! I've been faced with the "residential treatment" decision. I will not do it unless other family members are in danger, because I believe they will not be as careful with medication as I am and my kid has enough problems without feeling like we don't want her around anymore. That wouldn't be our reason for sending her, but I can imagine pretty well that's what she'd think.

 

Maybe instead of you choosing a target, force him to choose one?

 

We've been through many meds with my daughter. The SSRIs did nothing. Risperdal was good for a month or so, then made things worse...really, really worse. Lamictal has helped some- enough that we noticed improvement. Is your son still on antibiotics. Zith has made a huge difference for Allie-more even than the lamictal. We've been using LDN for the last 6 weeks (still on the lamictal and zith) and are seeing steady improvement in anxiety. We have not done IVIG, even if we could get it approved, I have no idea how I'd get her to tolerate it. And, she's nearly 15, so iffy whether it would even be worth the trouble. If you want to take a look at meds this website has some straight foward information on them, but it is very blunt:

http://crazymeds.us/

 

My prayers are going up for you guys!

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My son's last episode was also in March. What I don't know is at what point would you see the most improvement from IVIG. First let me say my son is 5 so he might view things differently. He doesn't think anything is wrong with him. He wouldn't answer the questions the psychologist asked. We didn't even attempt CBT because the child has to acknowledge soemthing is wrong in order for that to work. There's no way he would have doen therankings the psychologist showed me. Thers' no way he would have named OCD. Afterall, to him ther was nothing to name.

 

So, I took it upon myself to pick a ritual. I warned him a couple days prior that he would have to stop that ritual in a few days. He didn't have a choice.The last time he did the ritual, he even asked me to take a picture of him doing it. I thought that was odd. It was complicated, lengthy, and I was involved I the ritual. Those, I think are the best ones to try to eliminate first. The ones that a parent is invloved in. At first, I mixed it up, then I eventually refused to do anything. Vrey high anxiety the first time, but it eventually went away and w/ each future elimination, the anxiety was a little less. The thing is, if you decide to tackle an OCD habit, you need to stick with the process. If you give in, you are reinforcing the OCD and it becomes worse. It's so hard to do sometimes. I know it would be easier and make him happy to just let im do it, but I know I can't.

 

Even in books, they say it's ok to use "bribes" to eliminate. This worked w/ my son for one of them. I agreed to pay him if he didn't do it. Guess what, he didn't do it! Granted, I had to pay him for a few times but eventually I stopped paying and he still stopped doing it.

 

As for SSRI's, my son is not on any. The psychiatrsit said if he didn't improve, we could try Zoloft. We won't be needing it. But in regular OCD groups, parents have said that their children didn't want to comply to therapy at all until they were on an SSRI. They needed that stabilizer in order even begin therapy. But, like you said, I remember reading on this forum once that PANDAS kids might react different to SSRI's.

 

Is he on any supplements that are suppose to help with OCD symptoms?

 

 

 

 

quote name='Worried Dad' date='Aug 19 2009, 07:44 PM' post='36446']

Susan and Vickie, I could really use your guidance here!

 

Our son (13) just had rounds 2 and 3 of IVIG in Chicago with Dr. K (June and July). He's shown minor improvement, but (unlike after round 1 in October 2008) his OCD symptoms haven't abated much and are absolutely crippling right now. Contamination fears pretty much keep him a prisoner in our house (sometimes in specific rooms that are "safe"). Coping with the fears and rituals is draining my wife and me to the dregs.

 

We've been trying CBT (ERP) with a local psychologist who specializes in OCD and anxiety disorders. We're making no progress. Our son just insists that he's "doing everything he can to fight the OCD already" and can't (or won't) try ERP with anything new. We've tried having him rank his obsessions / compulsions and tell us which is the "lowest anxiety level" so we can target the easiest stuff first. No dice. He just says he "can't do anything else."

 

Our psychologist is basically out of ideas. He's suggested to us that we need to consider an intensive residential program. The closest such facility is 4 hours away, out of state. Our son would completely freak if he was suddenly thrust into this "foreign setting" and I shudder to think about how he (and the staff) would cope. We want to avoid this option at all costs!

 

Sounds like you've both had success with the CBT / ERP approach. So I'm wondering if you can give me some pointers?

  • Should we force the issue more, pick a ritual to target, and push our son to tackle it by making it a condition for doing something he wants to do (like play computer games)? The books I've read say not to impose these targets, to let the child feel empowered and allow them to pick which rituals to target in which order. But we (and the therapist) have tried this for months, and it's just not working.
  • We haven't tried an SSRI yet. Dr. K is dead-set against these, and Dr. Latimer said she's found them to be largely ineffective for PANDAS kids. Have you tried SSRIs for your children? Did they help? (We have an appt we've been waiting on for 3 months with a local ped psychiatrist, and I'm guessing he'll want to prescribe an SSRI for our son.) Do we need to start with a very low dose? Have read studies by Dr. Tanya Murphy showing that PANDAS children reacted badly to "normal" doses of SSRIs (suicidality, etc.).

Frankly, we're desperate. This exacerbation hit on March 29, and it's been a long 5 months. We'd be extremely grateful for any advice you can offer!

 

Brian

 

 

Yes, sorry, ERP stands for Ritual and Prevention Therapy - it is done as a part of CBT therapy, but many CBT therapists don't actually practice ERP. Essentially, it is identifing all the things that are done/caused/fear by OCD, and the ritual they use to dial down the anxiety. Then slowly, they learn to overcome the fear, and not do the ritual. As a result, the fear dials down. Until our latest episode, we were very succesful just doing this at home. We read Dr. March's book Talking Back to OCD: The Program that Helps Kids and Teens say NO WAY - and Parents Say Way to Go - to give ourselves a good perspective on what OCD therapy looks like. It is very helpful.

 

Our lastest episode was too complicated for us to handle on our own, and we now have an ERP therapist, and that is working. Meg also loved the book "What do to when your brain gets stuck", that explains OCD. We have a lot of OCD in our family, so we started on this route before realizing that her OCD is atypical, and that she likely has PANDAS. So now we are persuing that route (love this site, thanks all) in terms of testing and treatment (she did the 5 day Prednisone burst - with shocking results, nearly 80% immediate reduction in symptoms for about 7 days, then it came back, and now on Zithro) - but we still do the ERP therapy every day at home as it keeps her much calmer. We don't have meltdowns right now - they seemed to be a result of extreme fear about the thoughts she was having.

 

ERP? Does that stand for something like Exposure/Response? I think what I do w/ my son may fall into that catagory. If that's what it is, that does help him a lot. I did a little of that when he was still experiencing an episode, but not to the extent I do it now. Even during an episode, it did help sometimes.

 

 

 

We have been through 3 episodes of PANDAS now - her only symptoms are severe and sudden onset of OCD (well, except for needing to pee all the time, sep anxiety, etc - I just mean no tics, except maybe a cough that comes & goes). We have used ERP therapy each time, and found it to be a lifesaver. Even though we are working as hard as possible on the medical solution, we find that the OCD seems to outlast the episode itself, and to get stronger each time if we don't use the tools. The days of sudden onset are so hard, I cannot imagine her not having tools to at least try to dial it down. At extreme times, they don't work as well, but they do help to keep the overall episode manageable (ie, less panic attacks about the feelings/thoughts, more ability to attend all events & school desite the OCD, more self confidence through the attack).

 

They are great tools - for life as well as OCD. She is certainly becoming a very brave person. I would add that this will not help with tics, of course, and ERP therapy is not really about using logic, so it's not really about rationalizing with her during a meltdown. It's more tools to try to keep the meltdown from coming. Hard work, but since we are now on episode 3 or 4, we needed help from all directions. I'd call this training a different part of her brain to do the work of the part that is affected.

 

Susan

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For our DD6, while she was in the midst of her episode, I don't believe that the CBT appointments were helpful.

 

Now that she is not currently in an episode, she enjoys going, and does try to use some of the stratgies that she is learning.

 

The therapist agreed that she was not doing well, but felt that it would be helpful for another person to be able to assess how bad she was, and how she improved.

 

One of our goals while she was in-PANDAS was just to make her smile and laugh a bit each day...frankly I think she just parked herself in front of the TV--it made her happy...so I can really understand about the TV...and yes she LOVES Spongebob!

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Hi Brian, I really agree with EAMom...

 

I wanted to check on your son's history:

 

If I remember correctly, your son is now 13. In 2007, he was diagnosed with SC with severe twitching/seizure like symptoms and insomnia. He was on ativan and zyrexa that sound like they made him worse rather than better. He was on propholactic amoxicillin to prevent recurrance of SC and over that year the seizures/twitching subsided, but the OCD remained.

 

In June 2008, your local doc recommended stopping amox and by August 2008, your son had significant contamination fears, excessive hand washing and significant restrictive eating.

 

You tried azithromycin for 30 days (I think for a sinus infection), got in touch with Dr. K who switched you to augmentin. In addition you tried a pred burst that showed remarkable improvement (if short lived).

 

In October you went for IVIG, and had significant short term improvement -- but this sort of plateau'd in mid November.

 

In Feb you went for round 2 of IVIG but that was aborted -- then you had a nightmare trying to get it rescheduled.

 

You got blood tests for anti-lysogangliosides and CaM Kinase in May and his rates were consistent with SC again -- sigh.

 

In June and July you got round 2 and round 3 of IVIG in Chicago, but didn't have significant improvement. I'm presuming you are still on augmentin and little else.

 

Looking at the history, it looks like the time he most improved was at the switching time he was on azith and prednisone. Granted you were switching from azith to augmentin at the time, but from the history it looks like the two overlapped. Seems worthwhile to try azith and pred again. Inexpensive, orderable though your docs, ... Wishing the best for you and your family

 

Regards,

 

Buster

 

Brian,

I vote for 1 month of Azith (500mg day) and Pred. (start high, 2mg/kg, like what Dr. Latimer used on Kayanne's dd).

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Thanks, everybody, for some great info!

 

Yeah, we're still on prophylactic augmentin (500 mg daily). That and amoxil are all our son's ever been on for any length of time. Buster, we did do 10 days of higher-dose zithro in Summer of 2008 (based on advice on this forum!), but then we hooked up with Dr. K and he asked us to switch to augmentin. Since then, we've only done the 5-day zithro "Z packs" (modest dose) to fight infections that our son got while on augmentin. Frankly, we'd love to try zithro for a while... but Dr. K doesn't believe it's a good choice for most kids in most geographies and strongly prefers the augmentin. (Dr. Latimer seemed to echo that during our phone consult with her, too.) And we still don't have a local doc who "believes" in PANDAS or believes that our son has it (not since or DAN doc passed away last year), so we don't have anyone local who will prescribe zithro or prednisone. Sigh....

 

Dr. K has asked us to be patient and give the recent 2 rounds of IVIG time to work. I guess I'm just tired of "waiting for the miracle to happen." When our son was first diagnosed with SC in 2007, we were of course told that it was "self-limited" and we just had to wait for it to go away. We were told that 9 months was the average duration, but that it could be more than a year. And then he had another exacerbation, and things got much worse... and everybody on this forum knows the pattern from there.

 

We did try lots of different combinations of supplements (including inositol, kavinace, etc.) for the OCD, but none of them so far has made a dent.

 

Vickie & Susan, I did read the book "Freeing Your Child from Obsessive Compulsive Disorder" by Dr. Tamar Chansky. Great book, and it references some of the others you mentioned. We're trying to use it as a guideline. Just not having much luck so far.... :wacko:

 

Appreciate all the posts! Maybe - per Dr. K - I just need more patience. Just don't want to wait and watch things get worse again!

 

 

Hi Brian, I really agree with EAMom...

 

I wanted to check on your son's history:

 

If I remember correctly, your son is now 13. In 2007, he was diagnosed with SC with severe twitching/seizure like symptoms and insomnia. He was on ativan and zyrexa that sound like they made him worse rather than better. He was on propholactic amoxicillin to prevent recurrance of SC and over that year the seizures/twitching subsided, but the OCD remained.

 

In June 2008, your local doc recommended stopping amox and by August 2008, your son had significant contamination fears, excessive hand washing and significant restrictive eating.

 

You tried azithromycin for 30 days (I think for a sinus infection), got in touch with Dr. K who switched you to augmentin. In addition you tried a pred burst that showed remarkable improvement (if short lived).

 

In October you went for IVIG, and had significant short term improvement -- but this sort of plateau'd in mid November.

 

In Feb you went for round 2 of IVIG but that was aborted -- then you had a nightmare trying to get it rescheduled.

 

You got blood tests for anti-lysogangliosides and CaM Kinase in May and his rates were consistent with SC again -- sigh.

 

In June and July you got round 2 and round 3 of IVIG in Chicago, but didn't have significant improvement. I'm presuming you are still on augmentin and little else.

 

Looking at the history, it looks like the time he most improved was at the switching time he was on azith and prednisone. Granted you were switching from azith to augmentin at the time, but from the history it looks like the two overlapped. Seems worthwhile to try azith and pred again. Inexpensive, orderable though your docs, ... Wishing the best for you and your family

 

Regards,

 

Buster

 

Brian,

I vote for 1 month of Azith (500mg day) and Pred. (start high, 2mg/kg, like what Dr. Latimer used on Kayanne's dd).

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I totally understand this - it is not necessarily fast, or frankly easy. I look at it as a tool, since I expect her to have more times that this happens. So we are building that tool's strength over time. During the bad times, using ERP makes it more manageable (and she had severe OCD, tied up in every part of her life), so that she does not miss school or events with friends, and so that we can see her happy smile every day. And so she feels more in control of her life. For just the first small exposure, it can take a week or two to build strength. I have a file about this, if you want me to send to you. I'd also be happy to make some suggestions about how you could get started if you want to talk via email. Might not work - but no harm in trying. I love the post from Vicki as well - the great thing about ERP, is that it can work in a thousand ways, using the same principles, the only limit is your creativity.

 

We came a long way with ERP from May - August - from a severe (on the low side) diagnosis to sub-clinical now. I think that the anti-biotics are also really helping, and plan to use this in combination in the future. My husband and I were discussing this last night & we both feel some anxiety about which parts are specifically helping her - but our final decision was that "next time" (I cringe writing this word), we'll throw the kitchen sink at it week one - immediate antibiotics, steriods for 10 days, and ERP therapy. That will really test it for us - if it is immediately better, we'll know this is PANDAS without a doubt, as we know what it looks like with just ERP therapy. Her therapist wants to use SSRI's if it comes back, but I think we'll wait a few months before we even think about that. I am so appreciative of the medical advice on this site, and hope to learn much more before the next round of this. Susan (Meg's Mom)

 

 

Thanks, everybody, for some great info!

 

 

Vickie & Susan, I did read the book "Freeing Your Child from Obsessive Compulsive Disorder" by Dr. Tamar Chansky. Great book, and it references some of the others you mentioned. We're trying to use it as a guideline. Just not having much luck so far.... :wacko:

 

Appreciate all the posts! Maybe - per Dr. K - I just need more patience. Just don't want to wait and watch things get worse again!

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Hello:

 

I am a little confused about the azith versus augmentin? From this web site, I gather that azithromycin is the way to go for Panda children. And Ed Kaplan's article seems to confirm this theory. However, Dr. K told us as well that we needed to use augmentin. Why does he recommend augmentin when so many people seem to have better results with azith???

 

elizabeth

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