OCD/Lyme and Rothman

[laure]

Our daughter is 12 and has been in treatment for 2 + years. We have been very aggressive.

Just finished a 4 month course of IV vanco 1250 mg twice a day. Preceded that with 2 months of Rocephin IV.

Besides coinfections (ART found babesia, bartonella, ehrlichia, etc.) lyme was positive via Igenex,

she also now has high lead and tungsten, low thyroid. At one point she had some physical symptoms - night sweats,

headaches, recurring strep. Now it is all only OCD, but the OCD is debilitating and has been for over a year.

For so long we all have thought the medicine would eventually address it,

but how long do you keep hoping, waiting?

So finally we went to Rothman.

Rothman was a HUGE eye-opener for us. After 2 sessions the doctors

quickly upgraded her OCD from a "solid Moderate" to a "High" and

were checking into Rogers in Wisconsin for a residential facility for

her. She is so stubborn and in denial and hard-headed, she at first did not

make any progress with Dr. Rahman, although he is just as professional, sympathetic,

and excellent at his work as everyone reports.

I think the best part was all of

the discussions happening with her in the room- many things that are difficult to hear were all said right in front of her.

We all cried and it was all very scary. Bottom line is that the simple obsessions

and compulsions at age 12, even if they never get worse, are not good

at 15 or 16. So not being able to put her feet on the car floor now means

that at 14 she can't fit in with friends, and at 16 can't drive and at 24

can't hold down a job. So after hearing all of this she finally

began cooperating. Somehow the negative reinforcement worked so much better

than bribes or positive reinforcement for her.

After a few days of work with us, we do see that she can easily move

by some things and that infection is not the barrier to all of her

obsessions. It plays a role to be sure, but we are unclear at this point how much of a role,

and how much is habit for a child who has felt that way for the last quarter of her life.

At week's end she was happier and joyful - I think she feels more

confident now that she knows there is hope and that she can get past

this.

She says she wishes we did this a year ago - out of the mouths of

babes.

We still have a long way to go. She still has a high infection load according to both

traditional and ART docs. I do think the OCD is worth trying to address - but

you definitely need the best professionals, and I mean the best. We have been to

others who did more harm than good. The trip to Rothman was helpful for all of us,

even if we are not able to implement everything, we learned so much.

We can now be more compassionate, informed, and proactive.

[dcmom]

Laure-

 

I am so glad you made it to Rothman! I can tell you I felt exactly the same way when we were there. At first, I was surprised at how frank and up front Dr R was, and how we did ALL of the conversations with them in there. I was used to being more "sensitive" and talking to the psychs without the kids in the room. But I got to understand how totally right he is. And surprisingly- it is not rocket science, but a whole attitude and expectation shift that our family needed to do. The time there was totally an eye opener for me, and how I in many small ways, due I thought to compassion, was actually accommodating the ocd. I also too realized how most of our previous psychs did do more harm than good as well- how painful it is to have to rehash all of your fears once a week for an hour- without the doc giving you the tools to make progress. We have seen too, that our kids ocd is TOTALLY caused by infection/ autoimmunity, however that doesn't change the fact that we need to address it, and give them the tools to fight it, and have the confidence in them that they can prevail, little by little, every day.

 

I hope your daughter continues to make progress!

[Dedee]

So glad you had a positive experience. Dr. R is awesome. I wish I could bring him to us once a week. Rothman is an excellent place for CBT / ERP. Hopefully your daughter has found some confidence and tools to use moving forward.

 

Dedee