MomWithOCDSon

My DS was on Augmentin XR for 5 months, and it worked very well for him. No stomach upset or diarrhea, and his PANDAS symptoms subsided dramatically over that period. I'm not clear on what "ES" is, but the XR I can recommend without reservation, especially if Augmentin in general seems to be addressing the PANDAS issues.

Susan -- We had some diarrhea early on with DS's Augmentin use, but with extra probiotics and some attention to including some BRAT (bananas, rice, applesauce and toast) items in his regular diet, we appear to have conquered it. Like you, we saw such behavioral and emotional gains with the Augmentin, stopping it because of his tummy wasn't something we wanted to do. We do probiotics in the morning, midday, dinner and bedtime, he eats at least a cup of yogurt daily, and he has a half-banana with breakfast everyday, as well. Applesauce is a favorite . . . especially at lunch . . . and there are some good natural, no-added-sugar brands available, plus he likes using the food processor to make our own; sometimes we add berries to it for a little change-up.

We get lots of word repeating . . . like he's almost instantaneously losing his train of thought . . . but no real stammering or stuttering.

My son's doctor wants to start my son on Intuniv for ADD. My son has tics, I thought tenex helped with tics. Please inform as to what you know, I don't want to start anything that will cause my son anymore tics. His doctor prescribed this certain med because it is a non-stimulant. How quickly did you see focus improve? I am so hesitant about giving my son any type of meds because I don't want anything to backfire on him. Didn't intend to alarm you; I had some previous exchanges with a parent who's child's primary behaviors are tics, and she was wary of the Intuniv/Tenex, I thought on that basis. But since my DS doesn't have tics, I may have misunderstood. We saw a positive change in his focus within about 2 days. Then, when we forgot to give it to him about 4 days in, not only did we notice a different (negative difference, that is), but DS noticed it, too . . . said he felt like he couldn't hone in on the teacher, etc. Next day, back to Intuniv as usual, and he was back in the game!

Sammy Maloney took Straterra for years, I know, both during his recovery from PANDAS and for several years afterward. I asked Beth via email if the Straterra was for ADD/ADHD behaviors, or if it was to assist him with the OCD. This is what she said in response:

We haven't used Straterra, but we have been using another of the non-stimulant ADHD meds, Intuniv, and found it to be very helpful in terms of DS13's focus and ability to "get the ants out of his pants," etc. Since Intuniv is basically Tenex, though, I guess it is not always a good answer for kids with tics. Our DS's behaviors are primarily OCD, not tics, so we haven't seen any negative side effects on a long-term basis. He did get a little sleepy/tired by the end of the day the first week or so he was taking it, but that all evened out over time.

I'd never heard of it, so I just looked it up and did some reading. It looks interesting, but I guess I would have some concern about its use in children. All of the case studies I found on the web site seem to be of older adults suffering from Chron's, ALS and MS.

Higher dose of Vitamin C with NAC? Why?

DS13 - dust, mold, pollen, cat dander

Another "aha" moment here, when I have gone for years thinking that this vernacular ("my brain hurts") and the behavior (needing to break or snap things) was solely my DS's! Twin children of different moms! My DS13 has said the exact same words during exacerbation, and he will repeatedly snap pencils in half, break pencil leads, shred paper or tissues, etc. The feeling on his part and the words and behaviors have nearly disappeared in the last month or so as the abx seems to have worked its wonders, but what a remarkable synchronicity! Do you think their brains actually, physically "hurt"?! I am continually amazed and perplexed by the similarity in our children's symptoms, despite the wide range of this disorder!

Same here. We have changed all our soaps to be moisturizing, curbed DS's access to soap, use a heavy hand cream (Neutrogena Hand Repair) in the morning before he walks out the door for school and at night before bed, and continue to work with ERP to stretch out the intervals between hand-washing.

It might just be part of the saw-toothed healing pattern. Unfortunately, it also seems possible that he's experiencing a breakthrough reaction to strep exposure, even on the 500 mg. of Azith; there've been previous posts about that happening. I would watch him closely for the next few days and see if the pendulum swings back toward the positive. If it doesn't, you might want to see your doctor.

How's she doing otherwise? Have any of her other PANDAS symptoms ramped up? My DS generally has to keep his hands busy, and he figits a lot with them. It used to pencils and pens (clicking, like you mentioned), and more recently he's moved on to holding, stretching twisting one of those covered rubber bands you use to tie back pony-tails (he's been growing his hair out and sports a pony-tail from time to time). In general, if he's not actively writing or typing with his hands, he has something else in them, fidgeting. We've even purchased several "stress balls" so that he has something to squeeze when he's reading, watching TV, etc. The "chorea type" hand movements I've seen described -- "piano playing" -- we only see in him when he is in meltdown mode. If he gets stressed out about homework or something along those lines, he starts curling his fingers into a lose fist, then fans them out again, and curls them in again, over and over until he's got the meltdown under control. And it is mostly his dominant (right) hand; he doesn't do it much with his left at all.

I'm not sure about Dr. B., but I do know that some other docs who favor IVIG will recommend a steroid burst first in order to further confirm that inflammation is playing a part and thereby support a PANDAS diagnosis. As for ibuprofen dosage, it will vary by age/weight. My understanding is that, clinically, a child 90+ pounds is effectively an adult for OTC dosaging purposes. We have never given our DS13, who's 135 pounds, more than 400 mg. of ibuprofen at one time, and no more than 800 mg. in a single day. Plus, I don't know that you would want to max out the dosage for day after day, given the potential for liver damage. I'm sure someone else here has more experience with ibuprofen on a longer-term basis, but you might start out with something relatively low and see if it helps, going up in dosage only if required. Not sure what your DS's symptoms/behaviors are, but you can also try some natural anti-inflammatories and calming supplements, like valerian root (calming) and tumeric (or curcumin) and quercitin (anti-inflammatory) in the meantime. All the best!

Unfortunately, the answer is "yes," in our experience. I'm beginning to think the real goal is to have the "good" days increase in terms of a stretch of them in a row, while the "bad" days recede further and further, hopefully eventually becoming truly rare. We still think we are nearing the edge of the woods in our house, after almost 5.5 months on abx, but we still have "bad" days . . . they're just fewer and farther in between. I keep a journal and track even the more subtle of his attitudes and behaviors, in part so that I can go back and read through on a "bad" day and see that, despite this moment in time, he really does continue to improve because his last "bad" day was more than 2 weeks ago, and the "bad" day before that was another 10 days prior to that, and on and on. It's frustrating and demoralizing, too, because you begin to think maybe you've got this thing figured out . . . maybe this time your interventions are working. And then the "bad" day hits and you start questioning yourself and your doctors again. I can only say that, despite the roller-coaster/saw-toothed ride that we're taking, if the intervention is working as it should, over the long term, there should be demonstrable improvements -- longer and longer stretches of "good" days that will boost his confidence and yours. Hang in there!

Hang tough, Gina! You guys can get through this! You know, at least twice we experienced a plateauing or even some backsliding around Day 10 or 12 of the antibiotics, so it wouldn't be unusual; yes, "saw-toothed" it is! As for the Zoloft, I know how you feel there, too; our DS has been on Luvox since before his PANDAS diagnosis, and though it is a low dose and we have declined the psych's suggestion that we increase it at points in time, we've been too wary of trimming it back because he's doing so well right now. I don't think it's helped him at all, but it doesn't seem to be hurting at this point, either, so, for the time being anyway, we're leaving it in place. I don't know if that's the right answer, especially if the longer we leave it in place, the harder it might be to wean off of it. But with him doing so well and getting more and more consistently level emotionally and happy, it seems a small price to pay after months of tears, frustration and depression.

It's a little specific, I suppose, but given the apparent commonality of the experience, maybe it should be added to the list of signs to watch for in your child: "Does your child like to control doors, especially the automated variety?"

My own "light bulb moment" just now. DS, at 3, would rage if he wasn't ALWAYS permitted to use the handicapped panel/button to open doors . . . to his preschool, to the mall, to a store, anywhere public. If someone was right in front of us and was polite enough to hold the door open for us, he would throw himself to the ground and refuse to move until the door was "all his" again. We knew we didn't see any other kids of his age having this issue, but we didn't know it could be tied to anything of note, either. It just seemed as though it was a part of who he was during that stage of his development. Eventually we took to just hanging back if someone was close ahead of us, waving off their polite offer to hold the door open for us with an, "Oh, that's okay, thanks anyway. He likes to work the door."

Honestly, I agree with you! They've traditionally labeled sets of behaviors and expected us to accept that as a diagnosis when, in truth, it isn't; it's just a label! Hey, that's what we're here for!

Yes, I get that and our experience would agree, as well. During this latest exacerbation, no amount of therapy (ERP) or psych meds helped one iota; it took the antibiotics to bring him back into the real world. But he's been dealing with the OCD behaviors for many years prior to abx treatment, and I am somewhat concerned that there may have been some permanent damage in those early, formative years that PANDAS treatment of any sort may not be able to 100% undo. So we continue with ERP and we do see gains attributable to that, now that the abx have given him back some leverage against many of the most insidious OCD behaviors. So, as he's asymptomatic for strep, I'm trying to figure out the real difference between an exacerbation and a "wax and wane," particularly if he's never entirely OCD free and gets better at "hiding" some of his behaviors as he gets older. I'd like to think I could get in there again with aggressive PANDAS treatment if his OCD cranks up again, but I'm a little afraid I may not recognize the early signs. I think Buster and Meg's Mom have a good response there, so I think I'm starting to see a way of tracking it all now. Thanks!

Thank you all for the feedback and the poll participation. And this is the nutshell I must've missed in previous threads somehow. Plus, frankly, I'm distraught that, despite DS definitely exhibiting these broad swings in Y-Boc during exacerbation, none of our paid professionals were prepared to step forward and say anything along the lines of, "This is extreme. This is unusual. This is not in keeping with what we generally see in the typical OCD child." Thanks now to you, I have a quantitative tool I can use at home (if the professionals don't see the point, even once I've made a fresh issue of it), and I'll continue to keep tabs on his improvement or exacerbations so that we can continue to move forward!

I have been participating primarily on the PANDAS forum for the last few months, as our OCD son experienced a very sharp uptick in his symptoms/behaviors about one year ago, and none of the traditional OCD treatments were assisting him. Once we found PANDAS and had his strep titer count tested, though, we found that he had high titers and decided to try treating him with antibiotics. Some of his OCD behaviors continue today . . . though to a significantly lesser degree than before the abx . . . and he continues ERP therapy and other standard OCD interventions, along with the abx. He was first diagnosed with OCD at age 6, and between that age and the Wax to End All Waxes at the age of 12, we thought we experienced about 3 waxing periods, all told, though none of them was as severe as the latest one. We couldn't tie the waxing to anything interior or exterior to his life experience, though. At first, we though he'd wax at the beginning of a new school year, with new teachers and new classes, etc. But he didn't. Then we thought perhaps the waxing was tied to the seasons and, in particular, being denied more outside activity and sunlight during our heavy winters. But though his condition seemed to wax one winter, it didn't wax during the successive one. Every doctor, therapist and book we've ever consulted regarding OCD acknowledges a "wax and wane" cycle, but I've never been given any sort of general expectation in terms of how long it might last, how frequently it may come around, etc. Meanwhile, in the PANDAS arena, families tie "exacerbations" of behaviors (whether OCD or tics or both) to re-exposures to strep or other infectious agents, and there seems to be a concensus that the "exacerbations," especially in the case of a child who is generally medically asymptomatic for strep or another illness, can mimic the "waxing" of "typical, non-PANDAS OCD." So, I'm confused, I guess. Because my son has definitely been assisted by abx, I do believe he has PANDAS. But I'm not entirely convinced that he doesn't also have some degree of "regular OCD," or perhaps will have to deal with some "regular OCD" for the remainder of his life because of some more permanent damage done to his brain/wiring as a result of having gone untreated for his hidden, asymptomatic strep issues for more than 6 years. Can you help us? Can you describe what you've seen in terms of a "wax/wane period" in an OCD cycle? Is there a pattern that can be tracked from year to year, or season to season, or trigger to trigger? Does the wax/wane change as a person grows older? Any experience you might share would be really appreciated.

Well, then I guess it would be helpful if someone could fairly quantitatively describe what "typical waxinng and waning of OCD symptoms" looks like, so that a comparison between that and "episodic onset" of PANDAS symptoms could be made, especially for kids like mine who's primary behaviors are OCD-related. DS13 had a "standard OCD" dx at 6, and yes, the therapist and later (at 7) the psych told us about the "waxing and waning," as did all the books we read. But nobody could tell us anything about what to expect in terms of the cycle length or the timing or anything. We expected it to coincide with the new school year and all the stresses of a new class, new teacher, etc., but it didn't. Then we thought maybe it would be maybe seasonally-related, but it wasn't. There didn't seem to be any rhyme or reason to the "waxing" of his symptoms, especially in the face of being asymptomatic to strep. But while he was being treated by both a therapist and a psych for "standard OCD," neither of them ever raised any flag about his "waxing episodes" being out of keeping with the "norm" in terms of when or how they appeared, duration, frequency, etc. Had he been symptomatic for strep, we might've known earlier that he was experiencing a PANDAS exacerbation rather than a "standard OCD" waxing, but that wasn't the case. And even though the "waxing" would come about quite suddenly and his OCD would go from 0 to 60 in about 5 days, none of the "experts" in our medical care at that point in time seemed to think that was unusual or out of the "normal OCD range" for the disorder. So, IF a direct relationship to an infectious agent (whether strep or myco p. or whatever) is not identified, is there any real, established criteria difference between a PANDAS exacerbation and an OCD waxing? Did our doctors just completely miss it?! Or is it perhaps SO common for PANDAS OCD to masquerade as "standard" childhood OCD in terms of the characteristics of the waxing that it's missed more often than not?

Cooler heads prevail! You make an excellent point. Sometimes I'm too hot-headed, especially when it comes to DS. Mother tiger with her claw unsheathed and all that . . .

I second Peglum! This teacher must have severe insecurity issues, and her behavior warrants a reprimand from her supervisor. If you can tuck it all in the back of your mind until the end of the school year, that might be best in terms of any repercussions for your son; however, if the teacher begins "acting out" (odd that we have to consider that possibility with an adult! ) and making things difficult for you son between now and then, you're well within your rights to go to the administrator earlier. You're right . . . as if you didn't already have more than enough on your plate! We've had occasional issues with insensitive, insecure and/or inflexible teachers in the past, too. When the situation was intrusive enough with regard to our son's welfare, we would take it up firstly with the teacher and then with the principal; wish I could say those conversations resolved the situation, but they didn't always. In the end, we found ourselves counseling DS that not even all adults in authority always act like adults, that not every teacher knows everything, that sometimes he, even at his tender age, has to try and "be the bigger person" and sort of let an insensitive comment or behavior "go in one ear and out the other." Then he comes home and downloads at us, and we congratulate him on his maturity in dealing with a less mature educator! Sort of stinks that we have to go that direction now and then, but at least, in our case, it's been the exception rather than the rule. Hang in there! Only a couple more months of this grade, right?!