Advice needed?

[Bio and adopt]

I have two kids with PANDAS (my diagnosis). They are 19 and 14. They have been seeing a Neuro for tics, ADD, OCD since they were about 5. I have known for many years that strep was the culprit but every time I mentioned this to Neuro they always dismissed it. I am getting ready to take 14yr back to neuro for check up and want to ask nicely (demand) alternate treatment. Currently he is on Zoloft and Strattera and has been for years. My 19 year old had been on same treatment for many years and when she turned 18 she decided she was not taking meds anymore. I noticed no difference when she was on or off meds. The only thing that makes a difference in their severity of symptoms is illnesses especially strep. As they have gotten older their symptoms have gotten milder, but they also have not contracted or been exposed to strep as much. In December my sons symptoms were worse, total change in mood (even crying about things) tics more severe, etc. I started giving him 800 mg ibuprofen 3x day and he improved quickly.

So her is my question, what would you recommend that I ask (tell) the neuro to prescribe?

I do know I want to wean him off of his zoloft and stratterra.

He is 5'3" and 110 lbs.

Any advice would be great.

We live in SE Virginia so we are to far from Dr. Latimer but I would prefer to have the local Neuros begin treating PANDAS and want to insist they

try what I want (wish me luck).

Thanks Melissa

[Bio and adopt]

bump

 

I have two kids with PANDAS (my diagnosis). They are 19 and 14. They have been seeing a Neuro for tics, ADD, OCD since they were about 5. I have known for many years that strep was the culprit but every time I mentioned this to Neuro they always dismissed it. I am getting ready to take 14yr back to neuro for check up and want to ask nicely (demand) alternate treatment. Currently he is on Zoloft and Strattera and has been for years. My 19 year old had been on same treatment for many years and when she turned 18 she decided she was not taking meds anymore. I noticed no difference when she was on or off meds. The only thing that makes a difference in their severity of symptoms is illnesses especially strep. As they have gotten older their symptoms have gotten milder, but they also have not contracted or been exposed to strep as much. In December my sons symptoms were worse, total change in mood (even crying about things) tics more severe, etc. I started giving him 800 mg ibuprofen 3x day and he improved quickly.

So her is my question, what would you recommend that I ask (tell) the neuro to prescribe?

I do know I want to wean him off of his zoloft and stratterra.

He is 5'3" and 110 lbs.

Any advice would be great.

We live in SE Virginia so we are to far from Dr. Latimer but I would prefer to have the local Neuros begin treating PANDAS and want to insist they

try what I want (wish me luck).

Thanks Melissa

[LNN]

Is your current neuro the same one who's been treating the kids all along? If so, I'm not sure how optimistic I'd be about changing any minds or getting any new treatment options.

We've traveled to Dr L - 9 hr drive each way - but it saved us immeasurable time in the long run because we got the proper diagnosis and treatment plan. So I guess my advice would be to drive to Bethesda and think of it as an investment rather than a day or two of travel.

[thereishope]

When they did have strep, do you recall what antibiotic they were usually prescribed and if their symptoms seemed better when on it?

 

When was the last time they went for a strep test and how would you characterize their symptoms now? Are they mild, do they affect the way they function?

 

Have you, or other family mebers been tested for strep?

 

I have to throw one more thing out there since it's been talked about a lot on this board lately...did they ever have Mycroplasma Pneumonia aka walking pneumonia to your knowledge?

[nevergiveup]

He does not treat PANDAS, nor is he a pandas expert. So where does he start? I saw it with my neuro, he knew some tourettes is immune mediated but didn't know where or how to begin differentiating the kids. I am sure he has read all the articles on TS, you could send him Leckmans latest copy of TS and inflammation in the basal ganglia. But again this study does not give a treatment protocol nor does it help neuro's to differentiate these kids. (See Yale study header in acn forum today to get copy of article) I am taking this article to my immune rheum doc, although I think he already knows inflammation of the basal ganglia is likely part of the problem.

 

I drove 7 and a half hours to see latimer. well worth it. It was also fun to tour DC for the weekend.

[MomWithOCDSon]

I don't know if Dr. Latimer will do a phone consult if you cannot drive to meet her; I know some of the other doctors will (like Dr. K.), and I've heard, additionally, that Dr. K. will also consult with your local medical team, if that's the way you want it.

 

You obviously feel there's a chance in your getting through to this neuro regarding PANDAS treatment, or you'd move on to another doctor, correct? I can appreciate that, as I really wanted to stick with my son's existing medical team if at all possible, so long as I could get them on board. Fortunately, his pediatrician came willingly, his psychiatrist is a harder nut to crack, but he has also grudgingly come along because I made it very clear that I would move on to another psych if he didn't and, in the end, he really does want what's best for my son. He's just a snob about the science.

 

Have you gathered and presented the neuro with all the information, studies, etc. you may have gathered over the years, from sites like this one as well as others? I presented both our doctors with organized binders with everything from Dr. T.'s musings to Buster's charts to the Columbia mice study. I also bring my journal with us to every meeting, detailing behaviors, impacts (or lack thereof) made by medications and supplements, etc. I think because I am so serious about it and have taken the time to document all the moments of my son's life that they're not privy to, they realize I'm not generalizing or manufacturing or exaggerating, and that makes them more comfortable with granting me the assistance I'm seeking.

 

I guess it doesn't hurt to try!

 

Just based on our own experiences, I would ask for Augmentin XR, and a minimum of one month's dosage (1,000 mg., twice daily). I would commit to following up with him (via phone message, email, whatever) at one week to let him know what, if any, changes you see in your kids based on the medication. And I would lay the groundwork for expecting to be able to renew the prescription for at least another couple of months as, given your kids' ages and the length of time they appear to have been contending with the strep response, anecdotal evidence points to an extended need for antibiotic intervention.

 

Do you feel the Zoloft and/or Straterra are making your son's behaviors worse? If not, I would probably leave those be for a bit, just so that the evidence of the abx helping (hopefully) will be crystal clear to you and the doc. Then, once you all can agree that the abx is having a positive impact, maybe then you could begin the wean off of Zoloft and/or Straterra. Full disclosure: my son remains on a low dose of Luvox which he had begun prior to our trying abx. Because I've seen no signs that it is harming him, I have left it as is for the time being; I hope to begin weaning him of it by summer, if not before, but we're having so much success right now that I am reluctant to change anything else up for the time being. Also, my son takes Intuniv which, like Straterra, is a non-stimulant ADHD med; the psych suggested it after we'd begun the abx and, I believe, after having read the copy of "Saving Sammy" I'd given him. It seems to be helping him in terms of focus with school and homework, so we will likely leave that in place for a while, as well.

 

Good luck to you!