memom

I think we need to redefine OCD. My daughter has it and I have spent the past year with weekly appointments and reading books on the subject. The O for OCD stands for obsession. It is a repetative, unwanted thought that causes distress. The distress is such that in their mind, something really bad will happen if they don't do something to reverse the thought. The compulsion is the neutralizing behavior such as repeating, washing, retracing, telling etc. Many adults become compulsive about things, but it is not to be confused with OCD because there is no repetative unwanted thought that causes distress. Ellie

Hi Mom MD, My daughter (17yo Pandas) is on prolonged cycling OCP's (Seasonique, up from LoSeasonique when she started ABX). She started in August. I am not sure what, if any, influence it has had on her symptoms. I will tell you that it has been wonderful for her dysmenorrhea. Since she started the OC's at the same time we aggressively began treating her Pandas appropriately, the improvements may have been the T&A, steroids and ABX's. I can say it has not worsened her symptoms. I really don't think it has helped either. Ellie (I am a Certified Nurse Midwive in full scope practice as well)

I have had an adult patient develop the autoimmune thrombocytopenia after an mmr booster. She was one sick mommy. Platelets dropped to almost nothing. Took many months to get better. I am wondering if anyone on this board was a nonvaccinator for their kids? In other words, are there any Pandas kids who have never been vaccinated? Ellie

I would add that when the arms are out straight holding fingers straight, eyes must be closed for the best evaluation of piano playing movement. Ellie

Thanks, that was helpful. That is how we have been progressing till now. I have another phone consult the Dr. L. tomorrow. I feel a little worried since she has never had a face to face visit but rather been treating over the phone. I will see what she thinks. I would be willing to try Saving sammy dose or even a different stab at steroids (though she was pretty swollen face and dramatic weight gain for the 5 weeks on 60mg daily).

I also believe though much better, she still fights with distressing thoughts throughout the day. Today on the way to school, she said, I wish I was back on the steroids. My OCD has been pretty bad again. My brain feels swollen and my thoughts are getting muttled again. That was all I needed to make a decision to keep going forward on finding a longer term solution. She has had glimpses of better days now and that is good. Ellie

Thanks. I too worry about loosing our window for cure. Ellie

About 2 weeks. No notice with the increase yet. Ellie

17yo. OCD. Fuzzy "swollen brain feeling" Ellie

DD17 pandas (suspect onset 7 years ago without diagnosis), with dramatic ramp up in symptoms 1.5 years ago with repetative GAS infections. Symptoms severe OCD and choreaform movements. Failed CBT and SSRI's trial lasting 9 months. Reinfected again in June the GAS with continued baseline worsening. Dr Latimer phone consult in July suggesting tonsils out first and Cunningham bloodwork. Elevated antineuronal antibodies (Tubulin and Lysinoglyaside) and CamK 157. Tonsils out mid August with symptom improvement for the first time in over a year to about 50% of normal (still continuing CBT and SSRI as not to confuse the clinical picture). Phone consult again beginning of October with DR. L. suggesting next step of antibiotics (has never done prior to this) and month of steroids. 120lb daughter placed on Augmentin 500 twice daily and 5 weeks Prednisone. Definate honeymoon while on the steroids to about 75% improvement with dramatic decrease in intrusive thoughts and ability to resist need to repeat. As the steroid levels dropped, symptoms increased with having more bad OCD days (still not anywhere near last year, but impacting on her education, which she can not afford after loosing last year almost completely). I took it apon myself to increase her Augmentin to 875 twice daily in the meantime and have another phone consult Friday. I guess my question is, given the slow and sawtooth improvement mentioned with others, when is practicing patience prudent vs considering more aggressive treatment (PEX or IVIG)? Also, if not back to baseline (who knows what that is for these kids that have struggled for so many years without proper diagnosis and treatment), do you keep going to get to 100%? My biggest worry is how old she is and college dreams being dashed due to poor school performance (when she was a B student 2 years ago). I will say lastly that I feel somewhat sensitive to the reality that we are in a much better place that many on this board and I know this. I am just hoping to get dd brain to function normally as it really impacts on learning and all her daily interactions/decision making. Anyone meeting her would not pick up on the fact she has a problem. They would say she was quirky and says weird things. Thanks, Ellie

Just wanted to bump up for newbies. Nice piece of info.

Very nice. Well presented and documented. I vote it in! Ellie

Michele, I would recommend you e-mail Kathy Alvarez, the Cam Kinase is usually the first result you get. I'm pretty sure if they have those other results, the CamK is done (might have gone in your spam folder?) Isabel I actually found that with both of our tests that we got the anti neuronal antibody results weeks before getting the Cam Kinase. Ellie

Hi Isabel, Don't fret about that dosage. In fact, we may be going to that dose. As others have posted, the higher dose has been successful for so many other children when the lower dose was so-so. I am anticipating going up to the same dose if I don't see more improvement before I would consider more invasive and expensive therapies. This was the first time we were ever given antibiotics for treatment. I do agree with other posts about making sure he is on a good quality probiotic for the gut every day to help prevent diarrhea or other gi complications.

Hi Isabel, My daughter is 17yo and has just completed her 5 weeks of Prednisone prescribed by Dr. Latimer along with Augmentin 500mg bid. On the Prednisone we saw definate improvement to about 75% of normal. No bad side effects from the steroids except increased appetite and weight gain (which are reversing off the med). She had amazing clearing of her chronic sinusitis, allergies, asthma, eczema and chorea and improved but not gone OCD. She did have one day of severe leg pain that I think she caused by skipping a dose on a day that we were tapering anyway. She was unable to walk much for about 6-8 hour due to severe leg pain. Don't taper too quickly! Take the med as prescribed. I would do it again if we had to. Saw much improvement. Good luck. Ellie

My daughter 17yo 120lbs was started about a month ago on 500 twice daily by Dr Latimer along with a 5 week steroid treatment. Definate improvement but uncertain if it was the steroids or Augmentin. Some backsliding this week with cessation of steroids and probable H1N1 on Thursday. I will continue with this dose for now but plan on increasing next month to 875 bid if no improvement. Ellie

We did it this August as suggested by Dr Latimer because of repeated strep despite my dd 17yo. It was the first tangible thing that started her healing from Pandas. All the CBT and Psychiatry for the 10 months previous to this never really touched the OCD and chorea. I agree, difficult recovery, but I would do it again in a heartbeat. No one suggested antibiotics prior to and after her surgery and I wish they had. I would insist on it. High doses motrin after the first few days of narcotics also helped clear her brain (I was giving her 800mcg every 6 hours). She had cronic sore throat for years with pitted swollen tonsils. Now she comments on how her throat never hurts anymore! Ellie

DD17 156. Severe OCD and Choreaform movements. No tics.

Dr. Ken Bock. He isn't really versed on steroids and PANDAS, in many ways, he's still catching up with the new stuff from Dr K and Cunningham and so on . But he said he had had a bad experience trying steroids on a Pandas kid. Have you read his book on the new childhood epidemic? If not, I would suggest you pick up a copy and read it. Eye opening and informative. He does mention Pandas in the book. Ellie

I attended a lecture on currant research at NIMH on Riluzole (for OCD). This has been a WONDERFUL med for my son, not one side effect, amazing. PatAnne PatAnne, Dr. Latimer mentioned this to me back in July. I would love to hear your experience with it. My daughter is currently on Zoloft (as well as antibiotics and supplements). Would loe to hear what you've seen as results for the ocd behavior. Ellie

Keep giving a "hearty" probiotic. Also, sacharrimeyes (sp) boulardii. Florastor is a brand. Other versions are cheaper. It works on the gut flora in a different way. Was highly recommended. Google and you'll understand. Our son hasn't had so much as goopy poop. I hope you get the help & relief your dd needs. Best wishes. Thanks. Our probiotic does not include this. I will look into a change. Ellie

17yo 120lb daughter placed on Augmentin 500mg twice daily by Dr Latimer about a month ago while also starting Steroids for a month. Definate improvement as had never done antibiotics except to treat strep infections for 10 days (never cleared her OCD). Plan on doing for at least a year. May consider increasing to 1000mg twice daily if as we wean off steroids her symptoms worsen. No Pex or IVIG as yet. Undiagnosed for many years. No bad effects from a month of augmentin as yet. Ellie

When the culture came back 4+Beta hemolytic strep, non group A, I called the lab and asked for an ID with sensitivity. Though the lab can do this, it is not routine if the strep is not group A. They ID'd it as Group C then did a sensitivity like they do for any other bacteria to antibiotics. It was resistant to Erythromycin only. Given her throat was actually healing slowly by the time the results came back (took around a week to complete), and we hadn't yet started profylactic antibiotics, we didn't treat. Given she had also just come off a bad GAS throat infection that was treated with Amox., her Pandas symptoms were crazy anyway so it was unclear if it was due to the GAS or GCS. I had done research and found it to be considered part of normal throat flora for a portion of our population. I think since it was such a high colony count they reported it. She's now on full dose Augmentin and we plan on that for the next year. Her Pandas symptoms are improving with surgery, steroids and Augmentin. Ellie

I don't know how old your child is but we drew this blood at my own office. For my 120lb child you draw both red top tubes, then spin them down if possible and transfer the serum into one of the blue top tubes and throw away the RBC's. That is how it is intented to be sent. It gets sent on frozen ice packs included. Make sure you send them so they do not get there over the weekend. Ellie

I was curious how many others had maintained their kids on SSRIs or were using CBT or ERP for treatment of OCD. There have been studies indicating that PANDAS kids are more sensitive to SSRIs and I'm wondering if that is because of the combined impact of the SSRI with the anti-D1 or anti-D2. So at this point, this is just me being curious -- nothing more. Our own daughter became activated (akathesia) on higher doses of another SSRI but due to a latent social anxiety we haven't taken her off the SSRI entirely. Best regards, Buster We have also used CBT (started almost a year before she had surgery), and found that it wasn't until her Pandas started getting better after the surgery, that she could even think about using any of the skills (despite high doses of Zoloft). We didn't have any bad effects from the Zoloft or CBT, but got nowhere. Not until we had her tonsils out, then high doses of Advil (to deal with the pain of the healing from the surgery) that we started to see clarity in her eyes and decrease in mental fogginess and decrease in the obsessive thoughts. It was pretty impressive. Like many other families that were led astray (sp?) into the mental health arm of the health care system, she was no better off with SSRI and weekly counselling. Let me know what Dr Cunningham thinks. It would make sense that those two values borderline when all the other values in the abnormally high levels. Ellie