MomWithOCDSon

Bump, Big Time!

In general, Dr. K. does not believe in the efficacy of antibiotics. Our DS had been on abx for about 8 months before we went to see him, and though we are convinced they have helped DS, Dr. K. told us that we could take him completely off of them, basically "cold turkey." He prescribed, instead, a 5-day steroid burst, basically to demonstrate that inflammation is at the root of my DS's issues and thereby help confirm a PANDAS diagnosis (we also happen to have high titers). Dr. K. then expects us to move forward with IVIG. I know some families have been able to convince Dr. K. to prescribe higher-than-prophylactic abx doses POST-IVIG, but I've not heard of him agreeing to that protocol pre-IVIG. We continue to lean on our original pediatrician for the abx prescription while we see how things go and weigh a decision about whether or not to move forward with IVIG. All that being said, Dr. K. is very honest about knowing a good bit, but not everything, about PANDAS, and he seems to operate with a fairly open mind when it comes to considering varying protocols. So, if you build a patient/doctor relationship with him and want to try something other than what he normally prescribes, it's worth a try to talk with him about it. I think he has strong opinions, but not necessarily "fixed" opinions on the topic.

Also . . . . From what I understand about true bipolar, the cycles are not anywhere near as rapid as we see with our PANDAS kids (as you described, one day he's up, the next day he's down). Frankly, that "rapid cycling" is what's convinced our psych that similar behaviors by our DS are NOT indicative of bipolar because they are just too moment-to-moment. Bi-polar, my butt!

My DH somehow stumbled upon this, and my own search for research with key words like "OCD," "autoimmune" and "anti-inflammatory" brought back some pretty interesting stuff! I thought some of you scientifically-minded folks might be especially interested. I guess this organization is celebrating its 350th anniversary and has made its substantial library (all the way back to 1660!) available free online for a period of time as part of the celebration. Royal Society of London for the Improvement of Natural Knowledge Enjoy!

Now where did I put the Robitussin? In all seriousness, though, this is interesting stuff. I just wonder in what doses/volumes the DM would need to be administered to make a palpable impact.

The verdict on this is definitely still out, and there are conflicting perspectives...(from my extremely limited understandings!) Antibiotics may be immune system-modulating, and\or anti-inflammatory, and\or staving off possible strep (though I no longer believe that the staving off strep is the REAL key here...only hopeful!) We am more and more convinced that the REAL effects of antibiotics will ultimately effect OCD in the future in similar ways--granted, may be way off here, but the logic of the anti-inflammatory effects, and (perhaps) just as, if not MORE important effects of immune system modulation, is the key--so it is actually TREATMENT when we give Ps kids abx, not just a preventative\hopeful measure, it is a treatment effect of the antibiotics. --just my opinion, of course I'm with you TMom. The research that's emerging regarding anti-inflammatory and glutamate modulation via abx suggests that there's more here than just fightin infection or calming immune system.

Here, here! Speaking of Alex . . . I didn't know he was in the military and overseas right now. Do you know how his child is doing after IVIG? I had PMed to ask, not knowing that he was away. Happy Father's Day, all!

I'd say, from my perspective, that's exactly what we mean by regressive behaviors: not acting their age, not performing age-appropriately, toddler-style meltdowns at the age of 12, extreme separation anxiety well beyond the age at which that is standard among the peer set, etc. Sometimes, it can be more subtle, too. We only have one child, so though we think we have a good measure of DS by virtue of his friends and our friends' children as benchmarks for comparison, we still miss quite a bit, it seems. Dr. K. commented in our first consultation in person with him that our DS seemed very dependent on DH and myself, atypically so for a 13-year-old. He observed that when he asked DS a question that had some ambiguity to it, DS would turn to us for us to help him give an appropriate answer. Not what your standard 13-year-old will do, says Dr. K., and from what I know of other 13yo's , I would have to agree. Especially when in the throws of an OCD "fit" . . . trying to fight off a compulsion he knows he shouldn't yield to . . . our DS can really let fly with the squeaky baby voice talk! It is very dramatic. I always thought it was particular to him until I saw a "Primetime Live" episode on kids with OCD, and they featured a teenage girl in a severe OCD period who spoke exactly the same way, while in her therapist's office, no less! Since it can be emblematic of OCD, I would assume it could also be emblematic of PANDAS behaviors.

Laura -- Though it was stressful and no fun, I'm glad to hear you and your DS came through IVIG in what seems to be relatively good shape! Will keep good thoughts coming your way during recovery in the weeks to come, and will be very interested in how your DS fares overall. Hugs! Nancy

I like that one, too! Given my life experiences, I should have it tattooed on my forehead, DaVinci style (backwards), so I can see it in the mirror every morning!

Okay . . . now I'm obsessing about this. Here's a story regarding Wayne State's research project. Check out this paragraph, in particular: The studies found significant associations between glutamate receptor and transporter genes and abnormal brain volumes in brain regions implicated in OCD such as the thalamus ('grand central station' in the brain), caudate nucleus (brain's secretary), anterior cingulate cortex (brain's arousal center) and orbital prefrontal cortex (brain's executive decision maker). Wayne State Glutamate and OCD Study

This might be interesting to some of you. Here's a link with a slide from the television program I saw several months ago; I didn't get much of the details right (it wasn't "20/20," it was "Primetime Live," and it wasn't Case Western, it was Wayne State . . . oh well!). But I did fairly accurately remember the MRI images of a 9-year-old boy diagnosed with OCD versus a "control" 9-year-old boy. The circled area on the images is the caudate (Wiki has some good info on this sector of the brain), and you can see the greater levels of glutamate in the OCD brain as compared to the normal brain. I wish I had a copy of Swedo's presentation from AO so that I could put the images up next to one another! MRI - OCD Brain Caudate and Glutamate

Yes. I believe this is part of Cunningham's research. PANDAS kids have increased/high CamKII, which, per this abstract, "increases the initial rate of induced release of two neurotransmitters, glutamate and noradrenaline. These results support the hypothesis that activation of Ca2+/CaM-dependent PKII in the nerve terminal removes a constraint on neurotransmitter release."

Yes. As to its efficacy, frankly, it's hard to tell because we started this several months ago, along with abx. It is relatively inexpensive, and I know it's not hurting, so we continue it. I'd be interested in hearing from folks who haven't tried it previously and give it a trial as an "individual" add-on. I know there are historical threads here of people who've found it to be helpful, which is what led us to try it initially.

i do occasionally wade into the scientific discussions where i know i have no business being but . . . so very odd, mom - b/c i just again picked up cure unknown today after misplacing it for a number of weeks -- i was reading about a man misdiagnosed - or perhaps not fully diagnosed - with ALS - possibly induced by lyme that had remarkable results from iv rocephin. the patient was a dr and he and his dr both theorized that perhaps the rocephin 'had been found to stimulate a gene that limited the amount of a neurotransmitteer called glutamate. excess glutamate at the nerve ending had been tied to ALS and suppression of the molecule was one theorized treatment of the disease.' i believe others did not have such good results as this one guy. mom - what are your plans with supplementation? are you increasing glutamate or trying to decrease it's action? i don't really understand what it does. Smarty -- I don't really fit in scientific conversations, either, but with the help of DH, I'm trying. My understanding thus far is that, similar to dopamine in our PANDAS kids and those with other conditions like OCD, it's not a matter of having too little or too much; it's a matter of it not being properly regulated. What I recall from a "20/20" episode in which they interviewed the doctor at Case Western University who did the glutamate/OCD study, is that he put a couple of brain scans on display. The brain of the kid with OCD showed glutamate almost "coagulated" in a single sector of the brain (the caudate, which, interestingly, is the same sector of the brain that Swedo found to be inflamed in her PANDAS studies -- she showed a slide of it at the AO conference), while the brain of the "normal" kid showed glutamate in several sectors throughout the brain but a reduced amount in the caudate. There's another study ("Glutamatergic Dysfunction in OCD" out of India) that concluded that "Our study provides preliminary evidence implicating glutamatergic excess in the pathopsychology of OCD." So, in the end, I'm not certain that increasing or decreasing glutamate itself is going to help anything. But we do give DS NAC, which is also supposed to assist in the modulation of CNS glutamate (1,000 mg. daily). And, since DS is one of the kids on long-term Augmentin XR, I'm hoping that the preliminary research regarding B-lactam abx is accurate, too, as this might help him with respect to getting the glutamate better proportioned (i.e., out of his caudate, gosh darn it!)

For Christmas, I gave my DS a necklace with a little hammered silver disc hanging from it with a quote from Winston Churchill: Never, never, never give up. Somehow, it seemed to fit our situation at the time, thanks to PANDAS, and while he didn't wear it much, he carried it around in his pocket for months, rubbing the disk with his thumb as some might rub one of those "worry stones" you see sometimes in gift shops. Today I come across yet another Churchill quote that could be a mantra for us PANDAS families: If you're going through he_ _, keep going. You can picture me with a wry smile on my face right now.

I know this research article has floated around on the forum for several months now, but my DH has only recently decided he wants to catch up on his PANDAS reading so that, when I make a pronouncement that we're adding this supplement or whatever, he's not just playing Follow the Leader. Glutamatergic Dysfunction in OCD Anyway, he was reading through this particular article and came across something I'd somehow missed (or potentially dismissed) in previous reads. It reads as follows on the last page of the article: Another exciting new treatment possibility is raised by a recent study revealing the unexpected finding that B-lactam antibiotics increase the expression of glutamate transporters on glia and have neuroprotective effects in a mouse model of ALS. Because of the extensive tolerability data on such compounds, they represent and exciting and unexpected group of potential antiglutamatergic agents for use in OCD and other neuropsychiatric disorders. Augmentin is a b-lactam antibiotic, so maybe this explains why long-term Augmentin XR has been so helpful to those kids (like Sammy) with significant PANDAS OCD; it's not just addressing the strep and/or antibody control. It's also helping to remodulate the glutamate now thought to be behind OCD behaviors.

Thanks, Jill!

Ooohhhh! I can't wait! I love a juicy "who dunnit" or "tell-all"!! Once we secure that $50K, then you deserve a nice little vaca, and then once back on the board, you're going to feel bored, don't you think, with just "regular posting" to fill your computer time?!? You might as well serve up a little entertainment to keep yourself occupied and vent!

Vickie, Kayanne, Kelly and anyone else unnamed who's really managed this effort from behind the scenes . . . . THANK YOU!!! It is amazing to me that we continue to crawl up the rank ladder, despite the fact that, for the most part, we've foregone the questionable proxy voting! And no doubt, it is almost solely through your efforts, making alliances, cementing them, tending them constantly, etc.! And then you make voting all the easier for us by rendering comments unnecessary and providing the search chain! I don't want to jinx it, but it really looks as though we're going to do it this month! EVERYBODY KEEP VOTING!!!! GO, GO, GO!!

Hey, Eileen! It looks as though your inbox is full. Sometime between now and July, though, I'll get you my email! Thanks again! Nancy

After considerable debate, we decided to make our family vacation D.C. in July this summer. So DH, DS and I will be there. Frankly, we've been dealing with a great deal of OCD behavior at home . . . ever since school let out and DS has been free to let his mind wander . . . so we're hoping some of the kid/teen programming there will be a good opportunity for him to learn some things and also meet some other kids who struggle with some of the same stuff he does. We're actually coming out a few days early to do some site-seeing, and then we're all three set up to attend the conference. I met a few of the ACN ranks at the AO conference last month, and I really look forward to meeting more of us in July. I'm PM you my email, dcmom. Thanks!

I think that's true of the prophylactic doses, but not of the "high dose" abx some of us are giving our kids. For example, my DS (any many others here) is taking 2,000 mg. of Augmentin XR daily; a prophylactic dose would be more along the lines of 500 mg. per day. It's my impression that, in general, azith doses are provided in lower numbers, but I think that something like 500 mg. daily is considered "high dose" while some families are doing 250 mg. every two or three days as a prophylactic measure. Can anyone else further clarify this? Am I way off base?

I agree with pretty much everything that's been said here . . . visit the schools, arm yourself with knowledge about them and how they work, and arm them (especially the school that seems the best fit for your DS) with as much practical information as you can a bit before it's time to start school with them. I wouldn't get too far into the medical end of things only because it will make their heads spin and they'll be thinking, "But how does this apply in the classroom?" But I would give them as much information about the behavioral side of things as possible, including tips and tools for calming, expectations on your part about notification of illnesses in the classroom, absences due to exacerbation, etc. And most of all, try as best you can to assume you're going to get kindness, compassion and cooperation, and present yourself and your materials with that upbeat attitude. I know that we've been exceptionally fortunate with our school district, but even with them, I was very wary and prepared to think the worst: "They'll just want DS to "fit in their box" and behave like all the other kids." "They won't understand him." "They'll only see the 'bad' and forget to encourage and celebrate the 'good' in DS." Etc. This was my cynical interior monologue, preparing myself for what I thought would be a battle at every turn. But my sister is a grade school principal, and she kept counseling me that the school didn't want to make trouble for us or DS; they genuinely want to make school a good experience for everyone: DS, teachers, us. I've heard and seen some horror stories in this regard, so I know there are some "bad educational apples" out there. But for us, it has mostly (I'd say, 90%) been the opposite. We've been offered help at every step, understanding most of the time, kindness and creativity in fashioning accomodations for DS when his OCD poses problems for him in the school environment, etc. I will say, PANDAS is something many, many people don't understand, so giving them information about notification of illnesses in the classroom, etc. is key. But, in the end, IMHO, it really doesn't matter if they agree/believe that your child has PANDAS or if they agree/believe that he has the hallmarks of another condition that PANDAS kids tend to mimic, like OCD or tics. When it comes to the behavioral stuff, many educators are familiar with the OCD, ADHD, anxiety and tic behaviors that can come into play, so if you parlay that familiarity into getting your DS the help and accommodations he needs to be succesful in school, everybody will feel validated and supported.

Sorry, I couldn't find the thread with any efficiency either; it might have been a tangent off another line of inquiry. However, I was able to dig up the research article someone had posted on the thread (Kim or Kimballout, I think), and here's a link to that actual research: Immunomodulatory Effects of Antibiotics