MomWithOCDSon

This, too, is slightly off-topic. But as I thought many of us could relate to Randi's plight, I would post it here in the hope that we could perhaps lend her a hand. Why do insurance companies think it is morally or ethically acceptable to deny people care for which their premiums have effectively "prepaid" and/or which are deemed medically necessary by the professional caregivers?!?! Randi's right; it is unconscionable. Thanks! https://www.change.org/petitions/patricia-hemingway-hall-approve-randi-s-blood-plasma-immunoglobulin-treatments-ivig-scig?alert_id=oQQBbzvpKt_ErIeifmAmw&utm_campaign=47969&utm_medium=email&utm_source=action_alert

Hopeny -- I know there are tests for histamine, but I don't recall what they are specifically; I think there are a couple of other threads on that here, and probably someone else more knowledgeable in the testing stuff can chime in, too. Sorry. We've not officially tested. For us, we'd always thought that DS's histamine levels were high because he's generally been heavily impacted by seasonal allergies, and he's had bouts of eczema from birth. Then when he developed reflux (which we did not know at the time could be tied to histamine levels), we tried Pepcid and his response was remarkable. The eczema evaporated, his reflux stopped, and his "fight or flight" sort of "pop-up" anxiety episodes faded, too. Also, FWIW, he pretty much matches Dr. Pfieffer's "high histamine/undermethylated" column to a T, particularly during exacerbation. http://www.nutritional-healing.com.au/content/articles-content.php?heading=Major%20Mental%20Illness%20Biochemical%20Subtypes

Hang in there, Emmalilly! Yes, for some fairly immediate anxiety help, you can try valerian root; like most herbal remedies, I think you have to take it in somewhat copious and continuous amounts for lasting impact, but it can take the edge off. Maybe a couple of capsules in the morning before you head out to start your day, and keep them handy in the event you need some additional help before you can get back home/to the dorm. Prescription-wise, I know some people have success controlling high anxiety and/or panic-type moments with quite low doses of clonanespam. It's a benzo, so not something to take consistently or at high doses, but it can be very effective "in the moment." And it doesn't have the side effects of some of the "heavy hitters" like Zyprexa or Seroquel. My DS used that intermittently at the height of his exacerbation, and I have another family member who will sometimes take a very low dose -- like .5 mg. -- before embarking on something that produces high anxiety for him, like flying or public speaking. Emmalilly, do you have any other physical manifestations of your anxiety/panic, as in, do you experience stomach upset or reflux? Do you have issues with allergies or eczema? I ask because it seems like some of our kids (my DS for one) also has high histamine, and high histamine in the brain can increase anxiety and panic, too. Meanwhile, that same high histamine level throughout the body can induce reflux, hives and/or eczema, etc. So an antihistamine that goes to the gut -- Pepcid -- has been another tool for my DS during "ramped up" periods. It has been very effective for all the high histamine manifestations but doesn't make him sleepy like a classic antihistamine (like Benedryl) does. Meanwhile, they'll tell you that it can take up to 4 to 6 weeks for a standard SSRI to reach full efficacy, but my son would begin to feel the impacts considerably quicker than that -- within a week. And that's been true for his positive response to the correct low dose, as well as his negative response to a dose increase that took him too far. SSRIs and their dosage don't really have any relationship to age or weight, or so they say, but given your PANDAS history, I'd imagine you and Dr. L. will want to start "low and slow," so it may take you longer to feel the right dose, unfortunately. If your dosage does get higher than ideal, though, I would imagine you'd know it within 24 to 48 hours, and any negative impacts should settle out within 24 to 48 hours of reducing the dosage again . . . at least it always has with my DS. And finally, again, it may depend a lot upon your methylation issues as LLM has mentioned, but n-acetylcystein (NAC) has been very helpful for my DS's anxiety and OCD behaviors. In fact, I started decreasing his dosage a couple of weeks ago, hoping I can start to wean him off some of these supplements (I figure our chances of him taking everything regularly once he's off on his own this summer, for instance, is a pipe dream), and today he told me that he's been feeling more stressed and noting a few more compulsions in the last week or so. So tonight, I took his dosage back up. The Yale/NIMH trial for NAC to treat OCD called for an adult dosage of 3000 mg. daily, and that's what we've been giving him: 1800 mg in the morning (or 3, 600 mg. capsules) and 1200 mg. in the evening. This is another supplement I would start low and slow on, as some folks have a negative, rather than a positive, reaction to it. But if it works for you, it is very affordable and we've experienced no negative side effects. I imagine you can find the research paper on line if you're interested, but if not, I can always email it to you. I'm so sorry you're struggling, but I know you're very strong and persistent, and you'll find your way through this! Sending cyber hugs and here if you need me at any time! Nancy

You might try zinc supplementation; we've had some success with that, and there are some studies that support it for focus and attention. http://www.bastyrcenter.org/content/view/732/ Good luck!

Why is it better to have more EPA? If I recall correctly, there're a couple of reasons. For one, EPA is more highly anti-inflammatory than DHA. And while EPA is more helpful in that regard, it also slowly converts to DHA, so you want to start out with higher levels of EPA so that the benefits specifically tied to it are available to you, despite the fact that it converts over time. Here's one of the best explanations I've seen: http://www.psychologytoday.com/blog/in-the-zone/201204/what-are-the-real-differences-between-epa-and-dha

We definitely saw a decline in math skills during the heart of a bad exacerbation, and there were some commonalities with what your DS is describing: confusion, inability to focus. Our DS also described being overwhelmed by all the information on the page . . . as though the other problems and numbers on a page of exercises interfered with his ability to focus clearly on the one problem he needed to do. We didn't ever see anything so dramatic as not being able to subtract 3 from 5, though. Some things we found that helped: 1) Instead of working directly from a page in his math book or worksheet, we had him copy the single problem down on a clean sheet of paper and then work it; that helped eliminate any confusion brought to his processing by all the other numbers and words on the page; 2) Alternatively, we took a plain sheet of paper and cut a whole in it the approximate size of one problem. Then he could slide it around on the page to highlight the problem he needed to work on, while again taming the confusion brought on by all the other numbers, etc. on the page; and 3) Though time-consuming and not for the long-term, sometimes what seemed to finally work would be his dad or me, sitting at his elbow while he worked a problem, and asking him to explain each step to us as he went along. I think that by using more parts of his brain at the same time . . . verbal, visual, math, etc. . . . it helped keep him focused and on track, without feeling as though he was getting confused and losing his way, especially in a multi-step problem. And if he did appear to get confused or lose his train of thought at any point, we'd be there to prompt him, "What's next?" I think to a large degree, our kids lose a lot of confidence in their own abilities due to struggles like these, and half the battle is supporting them, reinforcing that these struggles aren't forever, that they're not "dumb," that they CAN do it, etc. Finally, though you aren't seeing any measurable impacts via the Augmentin yet, I wouldn't necessarily give up on it. We used Augmentin also, and there were definitely times when we thought he'd plateaued and the Augmentin wasn't helping any more. But when we took him off, he would regress in about 8 days' time. After a few tries at that, we went back to look at our journaling of his condition and came to realize that he wasn't entirely plateauing . . . it was just that the impacts were getting more subtle. But they were still coming. Good luck!

Hang in there, JoyBop! Really does sound like you're working to get your DS out of an untenable situation. I'm sure you don't want to "burn down the house you live in," at least for the next week, but those folks deserve some shaking up, maybe at the district level! Yowza!

Searching . . . Have you ever tried an antihistamine (histamine blocker) that goes directly to the gut, like Pepcid? That's what's helped us at times.

There are a handful of other threads here on the forum regarding histamine levels and those among our kids who appear to be helped by antihistamines and those who are not; it's all tied into the methylation cycle, again, at least according to Dr. Pfeiffer et. al. Here's a link to a quick chart on the topic: http://www.nutritional-healing.com.au/content/articles-content.php?heading=Major%20Mental%20Illness%20Biochemical%20Subtypes

Yes, it IS interesting. Thanks for posting!

I think Omega's 6 and 9 are generally NOT recommended for our kids because they can be pro-inflammatory. The difference is EPO, which, though it is an Omega 6, is anti-inflammatory, as I understand it. A good option for kids who's response to fish oil isn't good.

Does your PANDAS child also exhibit anxiety/OCD behaviors? For our DS, we discovered that what looked like ADHD was really just his trying to combat a whole host of compulsions and obsessions . . . he was distracting himself on purpose to avoid all the anxiety-provoking people, things and situations! Once we got the PANDAS and OCD fairly well under control, the ADHD (actually avoidance) behaviors faded dramatically. I don't know if that could be what's behind your DS's behavior also, but it's just a thought . . .

It really depends upon what else your child is taking regularly. Since OCD is an anxiety set of behaviors generally linked to lower levels of serotonin in the brain, some herbal and supplemental therapies such as NAC, inositol, Japanese knotweed, SAM-e, 5HTP, etc. have been found to be helpful. But if your child is already taking, say, a low-dose SSRI, some of those could be more problematic than helpful. Methylation can be another issue to consider, as some kids with certain genetics seem to respond more positively to certain things, while others have a hard time or react badly; this has been particularly the case (anecdotally) with regard to NAC. There are several threads here about that. Generally, it's been our experience that unregulated herbs and supplements tend to take longer to build up to sufficient levels in the body and inspire a positive reaction; my son has been taking NAC, and it took a few weeks for the benefits to be seen. But that's generally the case with prescriptions for increasing serotonin levels, too; most SSRI's require a period of 4 to 6 weeks to reach full efficacy. Not knowing what your child is already taking supplement or medicine-wise, I would take any particular option "low and slow," and only make one change at a time, so that you can truly ferret out what works and what doesn't. Good luck!

Our DS was in such a deep, dark hole once we found PANDAS and PANDAS treatment, the recovery at first looked like a bottle-rocket . . . we saw such dramatic improvements, so quickly. We were amazed . . . but also misled. After that, it's been more or less like a diet . . . at first, the weight seems to come off pretty quickly, but those last 10 pounds?!?! Ay, yi, yi! Slower than molasses moving uphill in winter! We went from 100% nonfunctional to functional (in school every day, participating again in social activities, doing well academically, sleeping well, etc.) within about 9 months; the dramatic improvements plateaued after about 2 weeks, and after that it was pretty much saw-toothed recovery and plateaus during which we thought maybe it'd gotten as good as it was ever going to get. But by journaling consistently, we were able to see that though his gains were far more nuanced as time went on, they were nonetheless coming, and consistently sticking. Time has been an important component in the process, in the end.

Not a fan here, either. At one point, prescribed for our DS as adjunct to low-dose SSRI. Even at a very low dose (1 mg.), DS was activated by it . . . more frenetic, more anxious. Thankfully, those effects wore off quickly once we took him off.

I just saw a legal notification during a talk show this afternoon, and when I Googled it, there were lots of hit. Apparently, there have been cases of boys given Risperdal developing female breasts? At this point, I don't know what dosage or duration of the drug has manifested this side effect, but in the event you're entirely unaware, thought I'd pass it along. This is one of those drugs that was at one time prescribed for my DS when he was in the depths of his worst, life-changing exacerbation. We used it once, and it knocked him out for an entire day . . . all he did was sleep. So we didn't use it again. The prescribing doctor did not once mention this potential side effect, either.

I don't know definitively, but here's a thought. If you pulled him out of public school because they couldn't meet his needs, and you asked for an eval and an IEP meeting, then I would assume it is still on the calendar, and you are still entitled to the meeting. In the end, if the school ultimately draws the same conclusion that you did . . . that they cannot meet his needs within that school facility, with or without an IEP . . . the district is obligated to provide an alternative to you. That doesn't mean you have to accept it, but depending upon the options available within your particular district, is it possible that one of the alternatives could, in fact, be the private school you've already selected? If so, the district would be required to fund in part, if not in whole, your son's education in this alternative setting. I would go about trying to keep the meeting. You are still a resident of the district, you still pay taxes that support the school in your district, and you withdrew your child not because you're surrendering your (or his) rights to an equal education under the law . . . you only withdrew him because his needs were not being met in that setting under existing circumstances. In the end, if he's not going to be enrolled in a public school in the district, or sent to attend an alternative educational offering in keeping with the district's recommendations, I'm not sure they will have any obligation to follow through with the process of drafting or administering an IEP. But until you have a full grasp of what their findings will be, what they can offer you as a district, etc., I wouldn't voluntarily step out of expecting them to fulfill this obligation. Good luck!

Wow. While I'm sorry to hear Swedo's words reported as they are, and I don't intend to call the person who repeated them into question, I'm hoping we're missing something. That something is out of context. That Swedo had more to say or more to add. Perhaps she's trying to "put a fence around" PANDAS to protect it as a viable diagnosis, even while it continues to be under assault for other reasons and by other quarters. Perhaps she fears that conflating it with other conditions dilutes its viability in the eyes of a contentious western medical community. In the end, I think it is all the tip of an iceberg. That PANDAS/PANS and ASD don't have to be mutually exclusive, nor do they have to be comorbid. Autoimmune dysfunction, likely contributed to by our ailing environment, "doctored" food chain, and short-sighted, non-holistic medical "advances" with respect to vaccines and other interventions/procedures, is worming its way through the population at an ever faster and more furious rate. Therefore, the "rarity" of these disorders is fast becoming a myth. And we should wrap our arms around one another and work together to encourage intellectual curiosity, research, and open-minded interventions without interference by ego, rather than haggling over the alphabet labels. It's a dream of mine, anyway.

Yes, we used it throughout antibiotic therapy and for a good bit beyond; we still keep some on hand in the event some tummy trouble occurs -- it's really effective against diarrhea. Like nicklemama, we started out with Florastor but found that the Jarrow brand (we get it at the Vitamin Shoppe or Whole Paycheck) was equally effective and less than half the price.

Oh my, yes! We can relate, as philamom has said. FWIW, these moments of conflict and unhappiness don't register with him at the magnitude they register with you, and they will be quickly forgotten by him as he heals and matures. Our DS barely recalls those very tough, defiant, tearful moments, and what recollection he now has is absent any of the dramatic emotion with which the original moments were so fraught. So you have to forgive yourself, cut yourself some slack. You're a good mom, doing the best you can, and you're human, too. You have feelings, too . . . and they can't always be subjugated to your DS's illness. Sometimes you have to walk out of the room because you have to preserve yourself . . . you can't entirely sacrifice yourself to your DS's illness, especially when you have other children to care for, not to mention a future rich and fulfilling life of your own! Just remember . . . "This, too, shall pass." Sometimes with our kids, it seems as though it never will. But it does. And we're here for you in the meantime, so vent away! Cyber hugs to you!

I don't know that any of the specialists have come to any conclusive recommendations about fish oil dosages, and for some kids, fish oil doesn't work well but, in fact, seems to further encourage unwanted behaviors, including tics. There have also been previous conversations here on the forum about EPA versus DHA and what ratios are ideal with respect to brain function. In our experience, the more readily-available, less expensive forms of fish oil tend to have a lower ratio; there was some research posted here many moons ago, however, that advocated for an EPA:DHA ratio of 7:1 as ideal for brain health, and we've only been successful in finding that in one supplement: Renew Life's Super Critical Omega. We used that formula/brand for nearly 3 years, to good effect, we thought. Meanwhile, for some of the kids for whom fish oil does not appear to be an option, a non-inflammatory form of omega 6 -- evening primrose oil or EPO -- has been recommended and helpful (thanks, in particular, to LLM). We've been using EPO for the last year or so, and I can't say that I see a difference from the period during which we used the fish oil, though our DS is generally in a good place these days and requires less intervention overall. As with most potential interventions, I would pursue this slowly and keep track of responses. Build up the dose, etc., rather than going heavy from the get-go.

Yes! I suspect I had PANDAS. My sister was constantly coming down with strep, but I never caught it . . . at least, not in the classical sense. I had a physical constitution of iron, i.e., was always hyper-immune. But emotionally/behaviorally, I was a handful. They didn't have/use the term back then, but I would certainly would have been classified as ODD today. Major temper tantrums, inflexibility, high anxiety, etc. My folks, too, were disinclined to take any of my "symptoms" too seriously . . . I was just a "brat." But like my DS, I performed at a high level academically and could be very "together" when I was engaged in something I enjoyed. My symptomology resolved slowly throughout the years, predominantly when I went to college but certainly improved in the years even after that. I got my first ever classic case of strep throat as an adult, at the age of 38+ when DS brought it home from school the first time. It was very intense and painful, and frankly a shock since I'd been impervious to it as a kid. My DS's Life Altering Exacerbation was certainly much worse than anything I'd thrown at my parents in my prepubescent or pubescent years . . . I think. But then again, I'm sure I have something of a warped perspective. It's hard to be objective. But objectively I know I was never entirely nonfunctional: unable to go to school, unable to eat, or bathe, or dress, etc. My DS was, however, for a period of time, at the height of his illness. Like everything else, I think this monster is a combination of genetic susceptibility and "trigger": infection, autoimmune dysfunction, etc.

We, too, saw dramatic improvements within 48 hours of commencing abx, but similar to your observations, it was not a clean, clear trajectory back to "normal." Many of us have experienced what we call "saw-toothed healing" whereby there is improvement, then perhaps a re-emergence of the negative behaviors, only to improve again a day or two later. There also are frequently plateaus where you think maybe it's gone as far as it is going to go, but then you stop the abx and things slide backwards again. I would encourage you to journal . . . just a few notes each day about your DD's behaviors. Things that you notice. And while you have to take things one day at a time, keep your eye on the bigger picture . . . a 3,000-foot viewpoint, if you will. I think you'll ultimately find that, despite the ups and downs, the overall trajectory reveals improvement. The journal will help you keep your eye on the prize, especially when there's a less-than-stellar day in the mix. All the best!

Straterra isn't an SSRI, so I'm not sure why there would be any commonality between reactions to SSRIs and that particular ADHD drug?

Because our DS's primary behavioral presentation . . . and flare go-to . . . is OCD, our psychs have long warned us to stay away from stimulant meds. Say it only tends to increase/ramp up the anxiety and OCD. Even Sammy Maloney was given Straterra -- a non-stimulant ADHD med -- and for a brief period my DS was prescribed Intuniv, another non-stimulant med.