MomWithOCDSon

Friends and Comrades-in-Arms -- Through another support forum, I've been contacted by a family in Italy (not certain where in Italy at this point, though I have asked the question so will clarify once I get an answer) with a young adult son (age 25). There's a bit of a language barrier, but the father does well with the help of some Google translator ap. This boy-man has official diagnoses as follows: immune-mediated encephalopathy post vacinale secondary diagnosis pans pandas syndrome. Unfortunately, however, it appears he's having trouble getting effective treatment. His father tells me he has received psych meds and a couple of antibiotics trials, one of which (Augmentin) did not appear to do anything, and the second of which (minocycline) sent the boy into rages. They've tried some supplements, also, but apparently there's been no real progress. No mention of IVIG or PEX, though I've asked those specific questions and, once again, will relay the answers once I have them. I know we have some international participants here, but I don't recall anyone either in or from Italy. Anyone have ideas or caregiver recommendations that I can share with this family? If so, please feel free to post or PM me. Thanks!

PIK, I'm glad you found relief via anafranil, but as you suggested, everyone seems to be different. Before we discovered our DS had PANDAS, we were on a psych med merry-go-round, trying to find something that helped him. For him, anafranil was a total disaster . . . one of his worst responses ever. One man's treasure is another man's trash . . .

Red ears only? Not any redder on limbs, for instance? My DS has environmental allergies and was prone to eczema, especially when younger. To this day, when he's entering a "ramped up" phase in which he's contending with a higher level of anxiety . . . finals, academic competitions, demanding new social situations . . . . his arms will "flush." I thought we (his dad and I) were the only ones who noticed it, but he prefers short-sleeved shirts, even in winter, and his case-worker at school has put it together, as well. She told us a few weeks ago that when he walks into her class and there's a red tinge to his arms, she knows he's getting worked up over something at school and it's time to sit down with him and let him "destress." Now we know that this is a good time to put Pepcid into play; seems as though this flushing is a histamine reaction, and the Pepcid seems to help abate the sort of short-term "flash anxiety" mentally as well as the flushed skin reaction.

I too, think your DS crossed a line when he took your phone; his phone was taken from him as a consequence for misbehavior, and it was part of a verbal contract (as I understand your post) with him that he knew about in advance. He's not your parent, and he does not get to set discipline and consequences for you; and even if he did, you didn't blow the terms of any contract, verbal or otherwise. I know, disciplining a kid with OCD is more complex sometimes, not just because the kid might rage more over things that "normal" kids would shrug their shoulders at, but also because, especially at 13, they may be harboring some compulsions or obsessions that they, for the most part, keep to themselves until you unwittingly "step" on them in a situation such as this. At 13 and 14, not only was my DS experiencing stronger OCD behaviors than he is now, but he was also going through that pretty typical "alienation" phase of a teenager . . . not liking me much, arguing over everything, taking every reminder, consequence, rule as an act of oppression, etc. Have you seen Dr. Ross Greene's book "The Explosive Child"? Even for teenagers . . . maybe even especially for teenagers . . . the techniques in this book really work. And we found them very helpful for distinguishing between teenage rebellion and OCD rage in our DS. Basically, it calls for a collaborative process where you sit down with your kid and discuss why you're in conflict, and what you need out of a solution, and what the kid needs out of a solution. And then you collectively agree on a compromise that you can all live with, and each of you is held to that agreement. We found it really helped. Good luck!

Smarty -- As usual, I yield to LLM's expertise with respect to methylation, et. al. Below is a link to a paper about stress contributing to blood brain permeability, so yes, I think that's a real issue. And I know, for us, periods of high stress can start the carousel turning to where one stressful thing seems to feed upon the next, and it just becomes crucial to GET OFF THE CAROUSEL! To stop the cycle, you know? I honestly think that the point at which our DS finally began to turn around for good coincided to some extent with that point in time at which the BBB had finally regained its proper state and protected him sufficiently from any further assaults. http://www.ncbi.nlm.nih.gov/pubmed/9443836 Hang in there!

Vasculitis? My understanding that it is an auto-immune condition which results in inflammation of the blood vessels throughout the body. Yes, I have an acquaintance (a good friend of my good friend) whose son was diagnosed with this several years ago; apparently, he was in an extremely dangerous state at the time. This mom has since become very active in a foundation funding research, etc. and, so far as I can tell, is very knowledgeable about the condition. PM me if you'd like to get in touch with her, and I will do what I can to facilitate that. Sorry for this development . . .

I came across this while researching some other things and thought it was really interesting and potentially helpful for some of our families, plus Psychology Today is relatively "easy" reading, compared to some of the journals and papers we find ourselves combing through! http://www.psychologytoday.com/blog/evolutionary-psychiatry/201104/your-brain-ketones

If I recall correctly, there is also some glutamate link, meaning more frequent urination can be associated with higher levels of free glutamate in the brain. There are some other, older threads on this topic here, so you might give a search a try.

Many prayers, today and for the days to come. Plus cyber hugs!

Yes, definitely. My DS was prone to chronic ear infections from about 14 mos. old until we finally got ear tubes inserted just after he turned 3. As those infections began to be prominent in his life, he became shyer at preschool, more in his own world a bit, especially among strangers and peer groups. We obviously had him tested for hearing loss, thinking that maybe he was suffering from all those infections; his hearing was fine. He, too, was eventually diagnosed with a sensory processing disorder at age 5, and both his pediatrician and a child psychologist we consulted told us our DS was "highly sensitive" and "highly intelligent," causing him some anxiety among his peer group because his interests, intellect and sensibilities were so discrepant from the average 5-year-old. Finally, at 6.5 years, he was diagnosed with "regular OCD." While we knew he'd been exposed to strep because of multiple form letters to that effect coming home from his kindergarten and first grade class, he'd never had any of the classic physical signs of strep . . . no fever, no sore throat, etc. But then his dad or I would come down with a classic case of strep ourselves; we began to think of DS as a carrier. Because our DS was asymptomatic (physically, at least, though not mentally given the OCD), we had a hard time getting anyone to take us seriously about PANDAS. Then, once I read "Saving Sammy" and found this forum, I learned about asymptomatic strep having much the same effect on some of our kids as classic strep does, and about how strep bacterium are also thought to lurk in inner ear fluid in many ear infection cases. If I'd only known then what I know now . . .

AmyJoy -- "The Church of Whatever Works" -- I can't claim it as original myself, so I certainly have no qualms about it making its way into the social vocabulary! Nicklemama, I believe the bow is yours?! Brava, brava!

We're still around off and on, though DS has been off abx for nearly 3 years now, and -- knock on wood -- things are good! He's happy, enjoys school, enjoys his friends. He's an honor student, and his team won the State VEX (robotics) championship this year, the efforts toward which had him keeping some very irregular hours (staying up late working, getting up early to travel to competitions), to no ill effects. He's now choosing colleges and looking forward to a summer program at one of his possibles . . . three weeks of engineering study on campus, like a real college student. Then back home for high school's senior year. It's been a crazy journey, and it's had its bumps, no question. But I feel pretty confident that we can continue to meet any of the challenges that pop up, what with all our experience, communities like this one, and DS's growing confidence and maturity. And I will say that none of the subsequent bumps, or flares, have been anything like the one that first put us on this road . . . much more manageable, shorter-lived, less intense. I would say know that time is an essential factor in healing, and as Nicklemama and some others have opined previously, consider joining The Church of Whatever Works! We'll all get to the other side, sooner or later!

Okay, I have a couple of practical questions here. What does the CBD Oil taste like? Is it a bad taste, or just "grassy," or what? Putting it into capsules sounds like a good idea, but potentially time-consuming, too. So can you drop it into other things (like applesauce or on fruit and still get the benefits without having to put it in capsules or ruining the taste of the food? I checked out the Bluebird site, and it looks like it just comes in liquid form, with a dropper. Are there other forms of it available that anyone has used? Thanks!

We've used some in the past that were in gelcaps, which you could take apart and put the contents into applesauce, yogurt . . . something at room or a cool temperature so that you don't run the risk of damaging the enzymes before they get a chance to do their work.

Ashley -- Since you're dealing with autoimmune, as AmyJoy and Rachel have already suggested, other triggers that can set off the immune system can cause issues, too; it's no longer limited to the original/initial trigger. If you think of the immune system as a glass, there's only so much it can hold/handle at one time. So if it's already close to fully topped off, even though relatively well controlled through your interventions, an additional immune-demanding load can top it off and cause it to run over. So, if anyone has brought a virus around (there have been a lot of those this past winter), or since allergy season is emerging with the Spring, either of those could be at play here. This is supposed to be an especially bad allergy season, so if your DS has any other signs of environmental (pollen or mold) allergies, I would probably look that direction first. Quelling the immune response should help your DS re-achieve the good trajectory he's demonstrated recently.

Oooh! Please make sure and post the follow-up! I'm betting on PANDAS/PANS, myself. The behavior I see most frequently associated with porphyria is depression, and while this young man is almost certainly very unhappy in terms of his current state, the explosiveness and aggressiveness of his episodes sounds different to me.

Philamom -- Yes, yes, yes! Call a meeting and ask that a reduced workload be added to the terms of the IEP. There will be teachers who will balk, but so long as it is in there, they will have to comply. Our advocate, when my DS's IEP was first designed, came up with the wording "Reduce work and assessments for quantity, not quality." So, if he can demonstrate mastery of a math concept by doing 5 problems rather 15, that follows the intent and wording of the IEP. Yes, reduced workload is key sometimes. Merely being allowed extra time sometimes just contributes to the "snowball effect," with assignments piling up to the point where feeling overwhelmed would be legitimate by any standard, never mind PANDAS!

In our experience, some psychs will actually engage in therapy with a patient, but because they are also licensed to dispense medications and have a full medical degree, their billing rates tend to be too high to make regular therapy with them financially feasible; we use ours for check-ins (now about 3 times per year) and medication renewals. Clinical psychologists and/or child psychologists are probably your best bets for evaluating your son's current state to determine if OCD is behind his distraction and other behaviors, as well as providing the regular therapy which helps build the vocabulary, regular responses and techniques for dealing with the OCD in everyday life. You want one who is not just knowledgeable in CBT (cognitive behavior therapy) but, more specifically (if it is OCD), ERP (exposure response prevention), since that's been found to be most effective in treating OCD behaviors. I would start with the International Obsessive Compulsive Foundation's (IOCDF's) web site; they have a Find Help link that allows you to search for providers that are geographically good for you, as well as those that specialize or have experience with certain age groups, individual issues, etc. I don't know that PANDAS/PANS is among the options specifically searchable here, but I do know for a fact that a number of the providers there are at least on board with and/or knowledgeable regarding PANDAS. It's how we found our current psych and therapist. http://www.ocfoundation.org/treatment_providers.aspx Then, frankly, it's a matter of finding the right fit . . . someone you feel comfortable with, someone your son will talk with freely and accept the techniques and exercises from.

So, you don't have a medical doctor on your "team," so to speak, who is treating the PANDAS/PANs? As you probably already know, Dr. B. will treat the medical issues, but you'd asked about psychiatry, and that's not his area. I mention USF because there, you can get the whole package: Dr. M. who is very experienced in the medical treatments for PANDAS/PANS and Dr. Storch, who's psychiatric program for OCD is very highly regarded. I have to tell you, too, that in the depths of my son's illness, the psychs and therapists we saw had all sorts of diagnoses and/or unofficial diagnoses (as in, "this looks a lot like . . . ," but they'd stop short of writing it in his chart): depression, SAD, bipolar, Asperger's, in addition to the OCD with which we'd been dealing for years prior, unaware of the strep link. I saw my son become someone he hadn't been before in the worst of all possible ways, and I've seen him come back to being himself in the wake of every intervention we could provide: medical, therapeutic and psychiatric. I'm so sorry for what you're going through, and I know how hard it is. But I don't want you to give up, because there IS help out there, and your son can get to a happier, more functional state. Try to hang in there!

I do think that the RIGHT psychiatry can help, but I hear and empathize with your frustration. Considering how booked up and unavailable most of the recommended psychs in our area are (especially the ones that take insurance), you'd think this would be a hot, hot field for medical students. Unfortunately, yes, they can pick and choose because for every patient who is either turned away or turns away voluntarily, there are at least a dozen others eagerly awaiting an appointment. We, too, were "dropped" by a long-term psychiatrist a few years ago upon finding PANDAS; he took the ride with us for a while and accepted the research papers and feedback we gave him as we learned more about the condition and how it impacted response to psych meds, etc., but he eventually said, "I can't keep up with you . . . you're way out ahead of me on this" (what . . . because I actually READ the research?!?!) and made it clear he'd welcome our exit to other waters. It took us a while, but we did find someone who was PANDAS literate, if not thoroughly experienced, and who would engage in a give and take with us over tools, techniques and medications. Like a lot of things with PANDAS, though, I think we parents have to become quasi-experts ourselves and participate actively, rather than passively, in all psychiatric interventions. We have to serve as the backstop, backing up and supporting our kids, and standing between our kids and the professional when our experience, research and instinct tells us the psych has inadvertently slipped off the path that best suits our kid. If OCD is the primary issue, you might want to consider a program like the one at USF, with great therapists, doctors and psychs (Dr. M., Dr. Storch) who know PANDAS, know OCD and know our kids. I would also recommend using the "Find Help" link on the IOCDF web site for researching providers in your area, as these folks tend to be (not without exception, but generally) not only well-versed in OCD but also "in the loop" with respect to research, advances and other initiatives of the IOCDF (which now includes PANDAS). In the last five years, we've "gone through" two psychs and five therapists, continually looking for a better fit as we become more experienced, and as our DS becomes more mature. The process sort of never stops.

Gelinasfive -- I think you need to request a formal IEP meeting and address the fact that your son's needs are not being adequately met. There are always likely to be some "old school" teachers and/or administrators who fail to recognize the impact of our children's health on their ability to focus and function, falling back on that old "responsibility and accountability" saw rather than stepping up to help a kid who genuinely needs assistance. But there will also be people who know your son, know he works hard wants to be accountable, but needs some help during the rough patches. Make sure you include some of those more tuned-in teachers/administrators in your IEP meeting invite, and if you have a therapist and/or doctor your trust, I would consider including them, as well. A good IEP helps bridge those gaps, and good IEP administration empowers your son to self-advocate with his teachers when he finds himself in those tough spots.

Rachel -- I truly think the right CBT with the right therapist is key to getting our kids functional, but "talk therapy" alone isn't likely to produce the best results. A specific branch of CBT known as Exposure Response Prevention, or ERP, therapy, has been demonstrated to be the most effective against OCD. ERP can be tricky, though, and really requires the right mix of "tough love" and compassion. A good therapist will be able to guide your DD and your whole family through ERP exercises in therapy sessions, at home, and out in the world that will improve your DD's ability to function and lessen her anxiety and OCD response to various triggers. Just know that, especially at 13, your DD is unlikely to "enjoy" therapy and will quite possibly even do whatever she can to avoid it. That's where some of the tough love comes in, because you have to hold onto the big picture, the knowledge that allowing her to avoid working through it is likely to only give the OCD more of a safe haven, and deeper roots from which it can spread and consume more and more of her daily life. Therapy, on the other hand, will give her the tools and techniques for keeping the OCD "pruned back." Hang in there!

Lamictal proved to be a positive turning point for us. Prior to implementing it, DS would become so emotionally overwhelmed by his compulsions, he couldn't control himself, despite all the therapy and techniques he'd been given/taught. Once he began taking the lamictal . . . within about 48 hours, even . . . we saw a dramatic change. It didn't take the OCD away, but it gave DS his ability to be more objective again; he wasn't so emotionally sucker-punched by the OCD. So he could stand aside and take an honest look at his behavior, why he was engaging in it, how he might benefit from pushing past the OCD. He could utilize his reason to a greater degree, rather than operate as one, big raw nerve.

I heard Dr. Kenneth Bock ("Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies") speak at an Autism One conference a few years ago. He was compelling and made the most sense on this topic that I've ever heard. While there's been concern about mercury, thimerasol and other preservatives in vaccines contributing to rates of autism in the population, Dr. Bock focused on the onslaught to the immature immune system. The "modern" version of immunizing our babies is relatively new in the way in which multiple vaccines are combined (MMR, for instance), and the rate at which they are administered has been escalated dramatically in recent decades, as well. If our immune systems are like a glass, and the smaller the person, the smaller the glass, then our children's glasses get topped out fairly quickly and likely cannot handle this onslaught. I think this is a direct quote, but it's been a few years so take it with some measured consideration. I remember Dr. Bock saying something along these lines: "I'm not against immunization, but I'm for smart, reasonable, timely immunization. Giving these children these bundled vaccines, all in the space of a few months, is not what I consider 'smart'." I also recall some discussion about why in the world the CDC recommends that babies be inoculated for Hepatitis C when it is a sexually-transmitted disease. My DS was given all his "shots," as scheduled. Like Nicklemama, if I had it to do over again, I wouldn't do it that way. I can't document, time-wise, that any of the immunizations contributed to what he went through in later years, but since the immune system appears to be involved, it's hard not to consider the possibility that they did. And finally, as for the doctor who discovered the link between autism and vaccines (Wakefield) having "faked" his data . . . I think we need to keep in mind the sort of negative flack our own Dr. Swedo has faced in trying to gain credibility for her research findings and PANDAS. Big Pharma has a long reach and deep pockets, and it was in their best interest to vilify Dr. Wakefield. I'm not privy to the inner details, and Dr. Wakefield may have made some mistakes and/or pushed some boundaries, but if you follow stories of families of autistic children at all (Autism One, etc.), there does appear to be a relationship between immunizations and incidents of autism.

Hang in there! And try to keep in mind that sometimes what appears monumental to us adults, or even monumental to everyone in the moment, is often, in the breadth of a lifetime, revealed to be just a blip on the screen. I was truly traumatized for a while by some of the things my DS went through, but many of them he now barely remembers, and even the bad times he remembers, he does so only in a quasi-amused way, patting himself on the back (deservedly) for how far he's now come. It sucks, and we cry for the lost childhoods our kids are forced to experience. But they can come through it so much stronger, wiser and more compassionate.