Intensive ERP Treatment

[Joan Pandas Mom]

Hi everyone. I haven't been able to write. I am in LA with my son starting week #2 of intensive outpatient ERP. He is doing a little better. His YBOC went from a 33 Monday to a 24 Friday. We have another week out here so I'm hoping to get it much lower. We have started week #11 post IVIG and he was still so bad with compulsions. I hope this treatment works and he can attend school in the fall. I hope and pray everyone is getting better out there.

[kimballot]

Hi everyone. I haven't been able to write. I am in LA with my son starting week #2 of intensive outpatient ERP. He is doing a little better. His YBOC went from a 33 Monday to a 24 Friday. We have another week out here so I'm hoping to get it much lower. We have started week #11 post IVIG and he was still so bad with compulsions. I hope this treatment works and he can attend school in the fall. I hope and pray everyone is getting better out there.

 

Joan - Thanks for letting us know. I've been wondering how you were doing. Please keep us posted on the ERP. Do they have programs in other locations?

 

Wishing you all the best as you work through this - and giving you lots of credit for finding this program. Your son is very fortunate to have you!

Edited August 9, 2010 by kimballot

[JAG10]

Wow, Joan!!!

 

Sending love and prayer your way.

[LNN]

Please tell your son he's an inspiration. I can't imagine how hard this is for both of you, but wish you so much strength and success.

[Megs_Mom]

I'm so glad you are finding some relief. That is SO impressive that he has already come down from a 33 to a 24! I can't imagine how bad it is at a 33, and how much courage it must take at that point to do the work. I know a lot about the upper 20's and they are not pleasant. I hope the next week brings him down into the teens and that you can sustain those gains at home. It take a tough and caring mom to do a program like this - and a very brave child. Please tell him that he has our utmost respect.

 

In combination with ERP, thus far, we find abx to be quite effective. For us, Azith was the right combination.

 

Hope to hear more when you get back home.

[Megs_Mom]

 

 

Joan - Thanks for letting us know. I've been wondering how you were doing. Please keep us posted on the ERP. Do they have programs in other locations?

 

Wishing you all the best as you work through this - and giving you lots of credit for finding this program. Your son is very fortunate to have you!

 

There are quite a few in and outpatient ERP programs. Another great one is in FL - we considered traveling there at the worst. If you go to the OCD Foundations website, they have a section on intensive therapy programs.

[MomWithOCDSon]

 

 

Joan - Thanks for letting us know. I've been wondering how you were doing. Please keep us posted on the ERP. Do they have programs in other locations?

 

Wishing you all the best as you work through this - and giving you lots of credit for finding this program. Your son is very fortunate to have you!

 

There are quite a few in and outpatient ERP programs. Another great one is in FL - we considered traveling there at the worst. If you go to the OCD Foundations website, they have a section on intensive therapy programs.

One of the best is in Oconomowoc, Wisconsin, run by Rogers Memorial Hospital. They get folks from all over the country there.

[MomWithOCDSon]

Hi everyone. I haven't been able to write. I am in LA with my son starting week #2 of intensive outpatient ERP. He is doing a little better. His YBOC went from a 33 Monday to a 24 Friday. We have another week out here so I'm hoping to get it much lower. We have started week #11 post IVIG and he was still so bad with compulsions. I hope this treatment works and he can attend school in the fall. I hope and pray everyone is getting better out there.

Joan --

 

All the best coming your way! What an undertaking, but it's so wonderful to hear about the gains! It's downright inspirational! Big hug!

[Joan Pandas Mom]

Thanks so much for the support. I think I spoke too soon though. We worked through the weekend and he was doing so good but, today and tonight are HORRIBLE. I feel like we are getting back close to day one of treatment here. We are in the same hotel room and he is trying to do his OCD exposures (writing) and he keeps flipping the pages of his notebook over and over and over. I am really starting to wonder if my son has permanent brain damage from untreated strep/PANDAS. I know that was mentioned on Mystery Diagnosis and Dr. K. briefly started to talk about it to me, but stopped. I'm wondering if that is what he is thinking.

[Joan Pandas Mom]

All of you are so great. I just finished reading all the posts. I read them to my son. They help. One of the Dr.'s my son met with today had PANDAS as a child and OCD as an adult. She noticed she was having obsessions over the weekend and started with a sore throat yesterday. She also started an abx yesterday. Today was my son's first meeting with her. I met with her on Wednesday. She is excellent too. I wonder if the exposure caused a downturn in my son. Can it happen that quickly though--after a couple hours after we met with her he started on a downward spiral. Or, is he getting really exhausted from this very difficult work?

[Megs_Mom]

Thanks so much for the support. I think I spoke too soon though. We worked through the weekend and he was doing so good but, today and tonight are HORRIBLE. I feel like we are getting back close to day one of treatment here. We are in the same hotel room and he is trying to do his OCD exposures (writing) and he keeps flipping the pages of his notebook over and over and over. I am really starting to wonder if my son has permanent brain damage from untreated strep/PANDAS. I know that was mentioned on Mystery Diagnosis and Dr. K. briefly started to talk about it to me, but stopped. I'm wondering if that is what he is thinking.

 

Please don't worry about this! The brain is so vast, and so powerful - even a small damage could be taken over by other areas, so this is just not worth your time. Think about it - he was doing well - if it were brain damage, he would not get better & then worse! It is much more likely that he has either had a re-exposure, or that the hard work is so much for him to process, that he is having a "burst of OCD". Sometimes this happens as "ocd fights back" and then you win, and it calms quite a bit. You'll know in a day or so. Hope it improves quickly.

[thereishope]

I'm glad to hear he is making progress! Don't get too discouraged when some OCD that was shed comes back. That would happen to my son when he was still overcoming everything and he'd get tired, stressed or starting to attack another OCD tendency. I hope you continue to make great strides. After a while, once my son start overcoming a decent amount of the OCD. I would start seeing some OCD tag along for the ride and shed without us trying. Minor things, but still good to see. Hopefully, you will have that too!

[Joan Pandas Mom]

I can't thank you enough for these posts and encouragements. As all of you know it is really tough being away from home trying to conquure this monster ocd. I refuse to give ocd capital letters anymore! It doesn't deserve it!! He did seem a little calmer this AM. I asked the psychologist if we could cut back a little on the work. My son said his ear hurt him a little this AM. I am wondering between the exposure to the sore throat and ear pain if he is fighting another infection. Dr. K put him on 3 more days of Biaxin, 500 mg 2x day. Then wants to go to 500 mg augmentin. I love Dr. K. he is so smart and good, but I still ? his abx protocol. From everything I have been reading and so much help from everyone here, it seems like HIGH doses of abx work.

[MomWithOCDSon]

Joan --

 

WorriedDad was able to convince Dr. K. to try Augmentin XR at 2,000 mg. per day for his son following IVIG. Why don't you give it a shot and see if he will prescribe the same thing for your DS, at least on a trial basis? It seems worth a shot!

 

I agree with Meg's Mom and Vickie about the OCD, also. We see "stutter steps" a lot with our DS13, too; one day we're convinced he's conquering it, and the next day will have some decidedly tougher moments, either with behaviors we'd thought he'd left behind, or a new "worry" or fear that pops up, like a cousin to another one. But in the big picture, he continues to move forward. We've been working intensively with ERP with our DS this summer, also, though not away from home; he has one or two long sessions with an ERP therapist each week, and then we have daily exposure homework and one or two "exposure field trips" each week. Our thought was that we would use the summer for more intensive work at the OCD to better equip him for the coming school year. So, yes, I think all the pressure to persevere and do the homework and face the fears . . . in our case, almost relentlessly . . . ups the anxiety a bit and he can get just flat out worn out with it all.

 

Hang in there! You're moving forward, moving on!