Has anyone had success like Sammy with ADD meds?

[Joan Pandas Mom]

I know I have asked this before. Has anyone had any success with ADD meds? Dr. K wants to wait another 2 weeks, making it 12 weeks post IVIG to think about starting them. He wants to give the IVIG a full 12 weeks before introducing chemicals. He feels they might cause tics. I think he is right, but was curious if anyone has any success with these other than Sammy.

[MomWithOCDSon]

Yes, we think so.

 

About 3 months into his abx treatment, our psych added Intuniv, a non-stimulant ADHD med along the lines of Straterra, to DS13's meds. Within a couple of days, he reported improved ability to focus and pay attention at school, and it seemed to help throughout the school year.

 

Over the summer, however, we've faced some increasing behavioral symptoms, despite remaining on high-dose abx (Augmentin XR), the Intuniv, and the supplements we've had him one for the last several months. We think a lot of it has to do with the loser, less structured summer schedule that gives him too much time to ruminate, feeding some of the OCD obsessive thoughts. We also think he may have been re-exposed via plane travel and/or public places while on vacation.

 

At any rate, during the increased OCD behaviors/ramp up, I couldn't say that the Intuniv was having any impact at all. It it was, it wasn't noticable because all the other behaviors were taking focus. It has left me thinking that, yes, perhaps an ADHD med in the waning phase or an exacerbation is helpful . . . helping push them just "that much" more into being able to focus more on what they're supposed to be focused on, rather than the OCD distractions. But sort of similar to the thought that ERP/CBT is of less efficacy in the raging phase of an exacerbation, it seems to me this sort of medication might have a similar profile.

 

Also of note: at the IOCDF conference, in a session with Dr. Eric Storch and others on treating kids with OCD and other comorbid conditions (including ADHD and ADD), the entire panel, along with a number of practitioners and researchers in the audience, agreed that when OCD is at the forefront of a behavior manifestation, then the "OCD comes first" in terms of treatment, and the other comorbid things next. There was even some discussion that ADD and ADHD aren't really stand-alone concerns with an OCD kid, that's its just another manifestation of the obsessive thinking/distraction. That being said, everyone agreed that some ADHD meds may be of assistance, and that the non-stimulant options (Straterra or Intuniv) are probably best for those with OCD behaviors because the stimulant meds (Ritalin, etc.) can send 'em into the stratosphere.

 

Finally, I did ask Beth Maloney about the reason for Sammy taking Straterra . . . whether or not he actually was thought to have ADHD, or if it was being used more in response to the OCD behaviors. She replied that it was more about the OCD, giving him that extra support in focus to stay tuned into what mattered in front of him, rather than being distracted by some of the extraneous compulsive thoughts. I guess he's off the Straterra now, though.

[Joan Pandas Mom]

Thanks Nancy, you hit on a few key things discussed here. One of the two psychologists we met with had/has PANDAS/OCD as a child. She told my son she hated summer break because it gave her too much time for OCD. She had to keep busy and the busier she got the less time she had for it. She also thought he didn't have ADHD, that is was the OCD getting in the way. It is so hard to tell. Does your son take any SSRI's. Mine stopped in Oct. of 2009 after I read Dr. Murphy's study. It is so hard to know what to do. Like OCD wasn't complicated enough without PANDAS thrown in!

[MomWithOCDSon]

Like OCD wasn't complicated enough without PANDAS thrown in!

Oh, I SO agree!!

 

At the beginning of our PANDAS journey (last October), our DS was taking 200 mg. of Luvox. He was such a mess, we couldn't discern that the Luvox was hurting him; then, once we started abx without changing the Luvox, and he began to improve, we left the Luvox in place because we didn't want to change anything else while he was on an upswing. I read the paper by Drs. Murphy and Storch, also, but at that time, we didn't see any signs that the Luvox was having a negative impact.

 

But when the upward trajectory of his improvement waned while still on the full-strength abx, we decided to try taking down the Luvox. First we decreased it to 150 mg., and DS improved; then we decreased it again to 100 mg., and he improved yet again. When we decreased it again to 50 mg., there was an uptick in his OCD behaviors, but it's really difficult to isolate whether or not that uptick was related to the change in dosage or other triggers.

 

After meeting Storch at the IOCDF conference and attending that particular session, I found out that Zoloft had been determined to be a preferred SSRI among the "comorbid OCD" pediatric contingent. Additionally, I had talked to the NIMH about potentially enrolling DS in the riluzole trial, and the doctor heading that trial said that Luvox was contra-indicated with riluzole, so if we were to continue to have interest in entering the trial, DS would have to be transitioned to a different SSRI. Coincidentally, at our next psych appointment, the psych indicated that he didn't feel the Luvox was helping DS much, and would we want to try something else, at a low dose (in keeping with my concerns and the Murphy/Storch paper). I asked if we could try Zoloft, so we began 50 mg. of that just one week ago today.

 

The standard talk is that it takes SSRI's anywhere from 2 to 6 weeks to reach full efficacy; frankly, today was the first noticably "improved" day here in our house for the last 10 days or so. His attitude was improved, his ability to push past some of the obsessive thinking was sharper, and he moved through his daily tasks faster. Is it the Zoloft? I don't know; I'm just glad he seems less bogged down by the OCD today!

 

I'll add that we were one of a few families here who've had previous success with SSRIs, prior to our having discovered PANDAS and DS's strep connection with his OCD. He took a low dose of Lexapro for more than 4 years with only positive results in terms of the OCD behaviors.

 

I look forward to hearing how your DS fares on the heels of the intensive ERP work and the IVIG. I think it is SO cool to have come across a therapist who knows both PANDAS and OCD!! That's awesome! And seeing her be successful and helpful must provide some comfort and inspiration for your DS, too.