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For us, CBT has been extremely helpful. ERP is still very hard, especially when the OCD is strong. My son gets discouraged because no matter how hard he tries, it keeps coming back. (i'm also not sure we're doing it all correctly). But I'm starting to view ERP like physical therapy for an injury. If you had a stroke, you wouldn't start out trying to speak in full sentences or walk a mile. You'd start out very slowly and it would be very very frustrating. But you'd keep at it because PT gives you a better chance of regaining a full range of motion and strength. If you re-injured yourself during recovery, you wouldn't give up. You'd have a private tizzy fit and then pick back up. Because PT gives you your best chance at getting your old life back.

 

Like Meg's Mom said, my son only usually has success as the episode is waning. But that sense of success is what keeps him going. In spite of feeling helpless to fight when he's bad, he still lights up and is so proud of himself when he's able to boss back the OCD during his recovery. The sense of moving from helplessness to empowerment is so important to him, since he feels so powerless during an exacerbation. If only for his self-esteem, it's important we keep doing it. We share a vocabulary and even if he fails, it still helps him feel understood when we work as a team.

 

I fight like ###### to get the medical treatment for him because he can't do that for himself. But giving him the ERP/CBT tools allows him to feel like he has a part to play in his own recoveries. It gets very very very discouraging, but we can't give up. It would feel like we were resigning ourselves to losing the battle. I will fight this thing on all fronts, medical and psychological, because I won't always be there and I want him to learn to fight tooth and nail with all he's got. It's going to take him years before he's ready to do calculus. But that doesn't mean we don't teach him multiplication. It's a building process, and like math homework, it's not always easy or fun, but to me, it's a necessary thing.

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[1...do you have to treat this stress esasperaton the same as others..abx..ivig??

can a steriod taper bring it down??

 

Dr. Leckman did not say and I did not think to ask. It seems like an obvious question, now.

 

2..we just started to have a little bed wetting, but waking up...but add vanco...we are have a weird coincidne..more later...does anyone know what the other thing was with tics..

 

I'm sorry I don't remember. I emailed the OCF and they are emailing presenters that have not yet given their slides. I will keep checking to see if he sends his in.

 

3 VERY CURIOS...again maybe my path is being laid out for my......for ticcers....PEX (solely)may be the only thing needed...is that was doc k was suggesting!!!..

 

I'm sorry again. But I believe I heard Dr. B. say something similar when we met with him. If I remember correctly, he also believes IVIG is preferable to PEX except for rare, extreme tic cases (can't be positive - probably shouldn't even write it down - but I think it is worth following up with either him or Dr. K if you can).

4...ds is almost 10 1/2..so does that mean he is over 10 :( or is that like a teeter point?

 

Dr. K definitely said that there is still success with children over 10 - just not as much as with children under 10. So please don't be discouraged.

 

Also, in our appointment with Dr. B, he said he even treats adults that are now discovering they contracted PANDAS as children....so clearly there is hope...

 

Thank you for the info

and thank you to anyone who can help fill in these blanks!!!

 

 

Thank you for getting back to me...

Can anyone else fill in any blanks?

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For us, CBT has been extremely helpful. ERP is still very hard, especially when the OCD is strong. My son gets discouraged because no matter how hard he tries, it keeps coming back. (i'm also not sure we're doing it all correctly). But I'm starting to view ERP like physical therapy for an injury. If you had a stroke, you wouldn't start out trying to speak in full sentences or walk a mile. You'd start out very slowly and it would be very very frustrating. But you'd keep at it because PT gives you a better chance of regaining a full range of motion and strength. If you re-injured yourself during recovery, you wouldn't give up. You'd have a private tizzy fit and then pick back up. Because PT gives you your best chance at getting your old life back.

 

Like Meg's Mom said, my son only usually has success as the episode is waning. But that sense of success is what keeps him going. In spite of feeling helpless to fight when he's bad, he still lights up and is so proud of himself when he's able to boss back the OCD during his recovery. The sense of moving from helplessness to empowerment is so important to him, since he feels so powerless during an exacerbation. If only for his self-esteem, it's important we keep doing it. We share a vocabulary and even if he fails, it still helps him feel understood when we work as a team.

 

I fight like ###### to get the medical treatment for him because he can't do that for himself. But giving him the ERP/CBT tools allows him to feel like he has a part to play in his own recoveries. It gets very very very discouraging, but we can't give up. It would feel like we were resigning ourselves to losing the battle. I will fight this thing on all fronts, medical and psychological, because I won't always be there and I want him to learn to fight tooth and nail with all he's got. It's going to take him years before he's ready to do calculus. But that doesn't mean we don't teach him multiplication. It's a building process, and like math homework, it's not always easy or fun, but to me, it's a necessary thing.

 

So well stated! Thank you.

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Meg's Mom,

 

First, I have to say, the "Bon Jovi" comment is priceless and going to have to stick around awhile!!!!

 

Also.... Did Dr. Cunningham make any mention of the Pepsi Refresh Grant? When it's all "official" I'd LOVE to see her put something on YouTube!!!

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I feel the same way. My son is very mild. He functions just fine. Really at this point it seems you have to be his mother to see it but yes, it's there. I remember reading here how people wouldn't accept that because it's not 100%. From my understanding Dr. K believes that IVIG is the only way.. but there is no way I could justify it for him. He's not even currently on antibiotics. I am fully aware that things can change for us and am most definitely storing up all the information I can take in but at this point, I have to accept 90%.

 

 

 

P Mom - I am totally with you... my son does fairly well between exacerbations... he is happy and functional. I understand that IVIG will not remove exacerabations... so I am having trouble justifying it in our case. I need to talk to the doc more about this. It seems IVIG is really helpful for families who cannot get their kids into remission otherwise... but if you are able to go into remission and be functional without IVIG... is there a point to the treatment? Will IVIG reduce the number of exacerbations he has? That would be a reason to try it... I am still somewhat on the fence in our case.

 

 

We are so, so, very much in the same boat! It is absolutely not the money! In fact we have saved up for the IVIG for "just-in-case." For me it is about the fact that our ds10 is 95% better. It is so nice to hear him laugh again! How can I put him through this h..l all over again and for what reason? What am I hoping to get? But then if he can be 100%, I feel that I am being neglectful by not doing the IVIG. If IVIG's measurement of success is 75% of baseline, (I think I don't have that number exact) aren't we already there with the antibiotics? What if it turns back pages and we only get back to 85%? I will feel horrible that we didn't leave good enough alone and be grateful for the improvements that we did make. The thing that really holds me back is when I read that many are on their 3rd, 4th, or 6th IVIG. Then how is that considered working if it needs to be constant? So I go for the IVIG treatment in hopes of getting my child back when I already do have him mostly back? I know that he could relapse at any moment, but it sounds like that happens with IVIG also. It does seem that many of us are dealing with 10 year old boys and we are worried that we are reaching that "10 year" mark. That is why I was so interested in the comment about antibiotics on Dr. K's site. We had sudden overnight PANDAS and got on antibiotics after 3 months, but in all reality I can name 2 very small but odd times in the past after an illness and to be honest...after his 15month old shots....he was a bit in a fog ever since. Maybe he had asymptomatic strep during his shots and I didn't know.

 

Oh, here is a question I have wanted to ask: We get his blood ASO and Anti dnase tested every 2 months. Although they are going down, it is very slow. Began in January with ASO 1726 and Anti Dnase 1920. Every 2 months they seem to go down by only 200. Now after 6 months his ASO is 1292 and Anti Dnase is 1360. At the rate they are going down, we could be doing this for years and that does not account for re-exposure! When you do IVIG, does that set everything back to normal limits? Anti ASO 200 and ANti dnase 170?

 

I saw someone else post that there son will be attending a small private school for 5th grade with a ratio of 1 to 6! That is odd because our son will also attend 5th grade at a private school with only 6 to 8 other kids in his class. Thought about homeschooling but although my love and passion is teaching kids with needs, it is now what pays for my child that now has needs of his own. Ironic.

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I just wanted to add to the ERP discussion, including consideration of it with comorbid issues, like brain fog, ADHD-type and autism spectrum-type challenges combined.

 

Our DS13 is, as many folks both professional and personal have described him, a "mixed bag," particularly in exacerbation. And he's been in an exacerbation period since last May or so, despite moments of total clarity and "remission" of nearly all behaviors, and moments where we've wondered if we're going down the right path at all. In short, his recovery trajectory resembles not just a saw's jagged blade; its a little more like the climbs and descents you see in a graph of the Tour de France route!

 

At any rate, all of his comorbid challenges certainly make ERP more difficult at times, and I think his ability to accept, build upon and implement the skills/tools is hampered by the attention, cognitive fog and Aspberger-type tendencies he also displays, particularly during exacerbation. So we don't get down the road as quickly or as efficiently as a kid without these comorbid concerns might. But we still get down the road.

 

It's interesting to note that one of the "regular OCD" sessions dealing with comorbid concerns (Dr. Eric Storch was a member of the panel) relayed similar findings in what the community generally considers the "regular" or non-PANDAS OCD population: that comorbidity tends to impact the patient's ability to adopt ERP and, more particularly, to GENERALIZE the exposures so that, for instance, successfully completing an exposure petting the cat (for a patient with a fear that cats are contaminated) readily translates to the patient being successful in petting a dog. This is the type of generalization that our DS struggles with.

 

Therapy costs are certainly a concern, so I wouldn't necessarily recommend that someone BEGIN ERP for the first time at the height of exacerbation. But if your child can self-calm effectively at points, if you can have verbal exchanges about the behavior, the triggers, the feelings brought on by the compulsions or obsessions, I truly believe it is worth a shot. Our DS is just one of a number of living proofs that it does work.

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Hi - We did CBT and ERT with a fabulous psychologist in Oakland CA - Katherine Martinez. We had an elaborate behavior reward system that we worked with and varied for about two years. We would last 3-4 months then take a break for a couple of months. It helped with many behaviors - claustraphobia, bedtime rituals, getting to school and many more. DD's eating issues were the most persistant, dangerous and confounding. We did ERT and CBT. Our daughter continued to restrict food to only white food - rice, noodles -, would not eat with anything metal, took tiny bits and hid food. It was terrible. We switched & added an OT for sensory issues and that helped a bit. It wasn't until we added a small amount of zoloft 25 mg. that she really started eating again. Whew. I felt badly that we had put her through so much time with the CBT, ERT and OT rather than just trying the meds.

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