Has Anyone Successfuly worked with a Psychiatrist

[philamom]

Thank you Nancy for sharing. I too have become more accomodating...something I need to work on.

I have such an issue with this. I am accomodating because my child is suffering due to inflammation of the brain. When she is better (inflammation is lowered) she doesn't have these OCD issues. They just go away.

 

I don't feel like people with a pandas child should be expected to just stand back and watch their children suffer. (my dd cannot do erp when she is in an exacerbation and she's better when she's not) We went to a well known psychologist who specializes in erp with children with ocd and she is the one who pointed us toward pandas because of her innabilitiy to help her. She said to me, as long as she still has an active infection, I cannot help her.

 

When her ocd begins to ask too much of me (I do refuse to switch lights on and off for her, etc.) I do take a stand in what I am willing to do or not do. But I do things like bring her food when she can't get off the couch seems like a no-brainer if I want her to stay healthy.

 

what do you think?

Momaine-

We are not dealing with severe OCD right now.

 

Since our recent uptick of symptoms mid-January it's been slowly creeping back more & more. My daughter would always go in remission between episodes and her ocd/phobias would go away until her next episode. Then in June 2009, her symptoms became chronic. Her first 3 IVIG's helped some and then we found out she had lyme. We then started treatment for lyme and she did great (best we've seen in 2 years). Her next IVIG set us back 8 weeks (more so in other symptoms). Then in January, I think she got a strep infection and mild ocd/ other symptoms rolled back in. We had a 5th IVIG first week of March, but can't say I've seen any improvement. Her last two IVIG's caused a huge herx for 6-8 weeks afterwards.

 

Anyway, I keep thinking her ocd will go away with the right treatment (like before) so I tend not to address it like I have in the past, but now I'm not so certain. But, my daughter's not in a severe exaberation, just back to her chronic increased baseline...mainly anxiety, emotional, oppositional, and now some increased ocd again.

[momaine]

We then started treatment for lyme and she did great (best we've seen in 2 years). Her next IVIG set us back 8 weeks (more so in other symptoms). Then in January, I think she got a strep infection and mild ocd/ other symptoms rolled back in. We had a 5th IVIG first week of March, but can't say I've seen any improvement. Her last two IVIG's caused a huge herx for 6-8 weeks afterwards.

 

Anyway, I keep thinking her ocd will go away with the right treatment (like before) so I tend not to address it like I have in the past, but now I'm not so certain. But, my daughter's not in a severe exaberation, just back to her chronic increased baseline...mainly anxiety, emotional, oppositional, and now some increased ocd again.

So, do you think that because she had a huge herx from ivig that it is helping kill off the lyme and therefore beneficial or do you feel it is too much and that you should discontinue it? I just realized in reading this, that dd's first month of lyme treatment showed progress but the last 8 weeks, since her last ivig have been terribly difficult and maybe that is from the ivig? I was more thinking it was the cyclical nature of lyme disease that made her worse. Both Dr. B and DR. J feel that IVIG is beneficial when there is autoimmunity along with Lyme. (regardless of the cause of the autoimmunity) I wish I had all the answers. I wish I could see the future.

Edited May 7, 2011 by momaine

[philamom]

Momaine, I just don't know. When we did IVIG #3 in early November my daughter was really doing fantastic from the lyme treatment (started abx combo mid-Sept). We did it because our daughter was still reacting to viruses and hoped we may be able to change that from happening. We had a huge herx and finally started seing improvement again around Christmas. Then days after our appt. with her llmd in mid January she began with an increase of symptoms. Her bloodwork taken at the appt. showed an elevated streptozyme and strep was being reported in her grade. I'm not entirely certain strep was the reason. She started Minocin in the middle of December...could it have taken a month cycle to create a herx. This increase did not make her as bad as she was last year, when things were really bad, but worrisome because of the ocd returning. Her last IVIG beginning of March just stirred the pot again and we're now just getting back to where she was when we just had it done. It did not help this recent increase of ocd. But, I did notice in Febuary her face was becoming very pale again, and it did help with that. So, she may have spiraled downward even more without the infusion...I dunno. Overall, the IVIG's have helped tremendously with her constant sinus issues. She has only had one "true" sinus infection in the last year and has recovered faster from her sinus colds.

 

edit- I should add that I can't imagine doing it every 8 weeks because I would rarely see any "good days", so I usually wait 3-4 months in between. What I need to figure out--is it helping in the overall scheme of things.

Edited May 7, 2011 by philamom

[momaine]

I just remembered something myself. I had written that dd was doing okay till her last ivig, but now I remember that she began to go down hill BEFORE the ivig, because we stopped antibiotics the two days of ivig per her lyme dr., to give her body a break from the herxing and she did come around a bit after stopping the antibiotics for two days. Then things returned to difficult after starting them again, so maybe for us, anyways, it has less to do with the IVIG and more to do with a huge herx that never ends. Her lyme dr. feels like she must have a large spirochetal load to be experiencing such difficulties still. She's 12 weeks into treatment. He said he hopes to see progress by 6 months after starting treatment at the outside. (sort of urged him to give me a number even though he didn't seem to want to)

 

Tonight it is CRAZY. She cannot sleep due to OCD reasons that she is unwilling to try to explain, therefore I can't help her and no sleeping medication is going to make a difference if you don't actually take it and try to sleep. Someone just shoot me!

[Bill]

Thank you Nancy for sharing. I too have become more accomodating...something I need to work on.

I have such an issue with this. I am accomodating because my child is suffering due to inflammation of the brain. When she is better (inflammation is lowered) she doesn't have these OCD issues. They just go away.

 

I don't feel like people with a pandas child should be expected to just stand back and watch their children suffer. (my dd cannot do erp when she is in an exacerbation and she's better when she's not) We went to a well known psychologist who specializes in erp with children with ocd and she is the one who pointed us toward pandas because of her innabilitiy to help her. She said to me, as long as she still has an active infection, I cannot help her.

 

When her ocd begins to ask too much of me (I do refuse to switch lights on and off for her, etc.) I do take a stand in what I am willing to do or not do. But I do things like bring her food when she can't get off the couch seems like a no-brainer if I want her to stay healthy.

 

what do you think?

 

 

Good points raised in all of the posts. We also have knowingly been accommodating though still pushing. I help him shower and at the same time constantly try to address his logical self (I'm sure that it comes across as constant badgering). I am caught between he's still sick and can't help it and why can't he just push a little. To remain sane, I tell myself it's like planting trees while the forest fire is still burning all around.

 

Now on the positive side - and after reading my previous post - I should point out that he has been much worse. The majority of his issues are anything with the bathroom. The psychiatrist and psychologist both told us that when he did get better these areas would be the last to get better. Now, he's not perfect throughout the day and can have his moments but the number of times he asks us if we've washed our hands before doing something for him is waaaaay reduced! We can almost always touch him now including hugging. We can have extremely gross boy talk and he does not freak out anymore (well, most of the time). Does he walk around with his hands held in front of him like a scrubbed surgeon still - yep. Will he shove his hands in his pockets to avoid touching others, sure. But not nearly as often. He also opened the 'contaminated' doors several times in the last few weeks without apparently noticing. He walked the dog (dog goes potty, leash connected to dog, therefor leash is contaminated) when asked without (much) hesitation last week.

 

So, just wanted to add a revised post and suggest that 6-7 months into treatment, we are better than we've been. We just do not know if it's the ABX treatment, SSRIs, or time.

 

bill

[MomWithOCDSon]

Good points raised in all of the posts. We also have knowingly been accommodating though still pushing. I help him shower and at the same time constantly try to address his logical self (I'm sure that it comes across as constant badgering). I am caught between he's still sick and can't help it and why can't he just push a little. To remain sane, I tell myself it's like planting trees while the forest fire is still burning all around.

 

Now on the positive side - and after reading my previous post - I should point out that he has been much worse. The majority of his issues are anything with the bathroom. The psychiatrist and psychologist both told us that when he did get better these areas would be the last to get better. Now, he's not perfect throughout the day and can have his moments but the number of times he asks us if we've washed our hands before doing something for him is waaaaay reduced! We can almost always touch him now including hugging. We can have extremely gross boy talk and he does not freak out anymore (well, most of the time). Does he walk around with his hands held in front of him like a scrubbed surgeon still - yep. Will he shove his hands in his pockets to avoid touching others, sure. But not nearly as often. He also opened the 'contaminated' doors several times in the last few weeks without apparently noticing. He walked the dog (dog goes potty, leash connected to dog, therefor leash is contaminated) when asked without (much) hesitation last week.

 

So, just wanted to add a revised post and suggest that 6-7 months into treatment, we are better than we've been. We just do not know if it's the ABX treatment, SSRIs, or time.

 

bill

 

Man, every time I read a post like this, I am again struck by how dramatically similar our "unique" kids can be! Bill, I think you're raising MY son! Good luck with that!

 

I do think the balance of accommodating versus pushing back on the OCD is a delicate one. Initially, during this most recent flare-up, we were pushing back really hard, and just about every single behavior. But it just seemed to make things worse to a certain degree. Then we started thinking about some of the information/theories floating around about how stress/anxiety may open the BBB and allow even more of those nasty antibodies access to the basal ganglia, and our pushing back on everything was adding to his stress, and keeping the unhealthy cycle going.

 

So we've been picking our battles some, too. But on the "main" issues for him . . . the ones that really cost him what he wants most, TIME . . . we've decided to let him experience that price being paid. And again, like you said, what exactly the formula is . . . time? abx? SSRIs? combination? . . . we don't know, but he's getting better, too.

 

We had the "surgeon's hands" behavior for a while, too; I took to calling him "Dr. ____" when I'd catch him walking around like that. All of his contamination issues seem to have been successfully dismissed though now (knock on wood). Our DS's main issues are locked in with the bathroom tasks, too. And like your DS, we went through a period where his dad had to help him shower. Or else he'd stand in the stream of water for over an hour, doing absolutely nothing. Just locked up. But that's gotten better, too. We've used some of the collaborative problem-solving techniques in "The Explosive Child," he's gotten further away from his re-exposure to strep, he's doing his ERP therapy and homework, and he's taking his meds. So now he showers himself again, brushes his own teeth again. We still use timers to expedite these tasks . . . at least they remind him that time is passing and he's in danger of losing his "free time" and, instead, having to go straight from his shower to bed.

 

Glad to hear your DS is getting better too, Bill. One day at a time!

[sf_mom]

Bill: You definitely made me laugh with the scrubbed surgeon hands.... We also had that problem too. DS would wash his hands several time prior to touching his baby blanket because he didn't want to contaminate it. Yes from the bathroom to jumping in bed with his hands raised like a surgeon's. Thankfully, its a distant memory.

 

My vote is for all of it working... time, antibiotics, SSRIs!!!

 

-Wendy