MomWithOCDSon

Because the precise actions of NAC are not fully understood, you should be judicious about introducing it in the company of SSRI's. It's thought to be a glutamate modulator and may also increase glutathione levels, it may undertake some of the work also done by SSRI's and thus "enhance" the impact of an SSRI. I know that our psych feels that NAC benefits our DS but also decreases the appropriate SSRI dose for him. Since our kids are already documented with regard to generally being sensitive to SSRI's, you have to keep an eye on using both, and I would seek the support of your doctor. My DS isn't actually participating in the trial; in fact, the original trial may be over, though I just saw a notification in the latest IOCDF newsletter about an NAC/OCD trial, so perhaps it is ongoing, or they are beginning a new one? Anyway, I referred to the Yale/NIMH trial information with respect to dosage levels. I'm not sure of your child's age or weight, so below are the links for both the pediatric and the adult trial (my DS is adult-sized, so we've been using that indicated dosage). NAC and Pediatric OCD NAC in Treatment-Refractory OCD I was not aware the NAC reduces histamine. In fact, when I Googled it, what I found this paper that seems to suggest that NAC actually enhances histamine release, rather than curbs it. NAC and Histamine My DS also has appears to have high histamine and he benefits by Pepcid, both with respect to eczema outbreaks and disposition. Now you've got me wondering if we might not be increasing his histamine levels by virtue of the NAC, but it appears we've reached a pretty decent balance of late so I'm disinclined to start changing things up. Hope that helps! If you have any more information regarding NAC and histamine, please share a link! Thanks!

Honestly, I don't know. Some kids seem to do better on different probiotics, so I guess it's possible some strains bother some people, while others are beneficial. We used the multi-strain initially because we figured the abx was killing off pretty much everything, so to repopulate his gut fully back to a "normal" level, the multi-strain was the best idea. Then it seemed to help both DS and me in terms of digestive health overall, so we stuck with it.

Awesome! Congrats!

We use a Jarrow sach boulardii (10 billion units) and a 50-billion unit blend (it's got about 10 different cultures in it) by Renew Life, both of which I get at the Vitamin Shoppe. We're off antibiotics now, though, so we're only giving one each per day.

It's not stimulating, so far as I've seen. We split the dose; he takes 3 caps in the morning at breakfast and 2 in the evening at dinner. The only thing I'd advocate is building up the dose a little slowly because it can, I think, cause some gastro distress if you go after it all at once. We built up to the current dose over about 3 weeks, and his system adjusted well to it.

Just a follow-up on the difference between a "benzo" and an "SSRI." Benzos can act almost immediately in terms of "calming" and are sometimes prescribed for things like fear of flying, panic attacks, etc. But like ko's mom has said, they can be addictive, and they aren't intended for long-term use. Meanwhile, SSRIs -- selective serotonin re-uptake inhibitors -- are supposed to slow down the rate at which the brain absorbs serotonin, thereby leaving it available in the brain for longer periods and hopefully improving mood, lessening anxiety, etc. by virtue of that. SSRIs, however, can take up to 4 to 6 weeks to reach full efficacy, so they are by no means a "quick fix," and finding the right dosage can be tricky, especially for our kids. Dr. M. has authored a prominent paper on PANDAS kids and SSRIs, and the advice, if you decide to try one, is "go low and slow." My DS takes a low dose of Zoloft (an SSRI), and we do see that it helps him. But we started him at a very low dose -- well below what the docs said was appropriate for him -- and took 4 weeks between any dosage changes -- until we found the dose that seemed to be optimal for him. We hope he won't always need it, that between addressing methylation and immune issues, we'll be able to make it possible for him to do without it eventually. But for now, it helps him be happy, productive, engaged, etc.

I didn't know, but just Googled it. According to the product information on the Culturelle web site, the adult Culturelle contains 10 billion units while the children's contains 1.5 billion. So, it appears you'd have to give about 7 of the children's doses to equal one adult dose.

$90/month?!?! We've been using NAC for years, and we get ours for considerably less. Not sure what 3 caps/day equals for your particular brand, but my DS is taking the equivalent of the "adult-sized" dose used in a Yale/NIMH OCD study, which is 3,000 mgs./day. So with our 600 mg. caps, that's 5 caps/day. I get the Vitamin Shoppe brand with a bottle at about $28 for 200 caps, so that's $28 for a little more than a month's worth. Yes, in our case, we see positive impact from the NAC, and it is multifaceted, I think. It has helped his OCD, but we also credit it with helping to bust his upper respiratory issues which had haunted him since he was a toddler; he still has allergies and gets a cold now and again, but there is not the constant congestion, "snuffling," etc. he used to suffer with. Finally, both last year and this one, despite being exposed to some major flu cases at school, he's walked away with little more than a cold; it never developed past that. I guess there's been research as to NAC and reduction of flu symptoms. NAC Fights the Flu So, yes, I think NAC is worth it. But I don't think you have to pay $90/month, either, for NAC that will be beneficial. Good luck!

You probably need to see an ENT. If your child isn't experiencing any classic sign of an ear infection, including pain and/or drainage, then getting to the potentially infected fluid will probably require some procedure that goes through or past the eardrum somehow, to reach the inner ear.

Many of us use a variety of supplements such as D3, quercitin, curcumin and/or tumeric as anti-inflammatories, though, when things are really tough, ibuprofen can be hard to beat. In our experience, the supplements are more of a long-term strategy, with a more gradual impact but one that can sustain so long as you maintain the regimen. I think the jury's still out on that one. Some kids seem to more or less "outgrow" their PANDAS symptoms by puberty, others do not. In our case, my DS's most dramatic PANDAS didn't even show up until puberty, which is ongoing even as we speak. But like yours, he is much improved following abx treatment, and we keep the supplements going even now, 3 years later. Anecdotally, many of us do see "wax and wane" but not, as some docs would have you believe when it comes to tics or OCD, at random. When my DS waxes, he's been exposed to strep, or he's coming down with a virus of his own that's triggering his immune system. Or allergy season comes upon us. Some have, yes. Others return to steroid courses when another exacerbation hits and therefore arrest the symptoms more quickly or altogether. IVIG is a home-run for some folks, and less so for others. Some with documented immune deficiencies have a series of IVIG treatments to help support and hopefully reset the immune system. No one's sure yet why IVIG is more successful for some and less so for others. Never heard of magnesium causing weight gain, or antibiotics. Is he taking anything else? It is possible that 1) without all the anxiety and pervasive tics, he's more relaxed and thus he's not burning as many calories as he was before treatment, and/or 2) he's just reaching a growth spurt that's temporarily taking him "out" rather than "up." My son grows like a fir tree: out, then up, then out again, then up! Sorry your family is now faced with PANDAS, but glad that you've successfully gotten treatment and that you've found this forum for support. Hope some of my answers help. Take care!

I have no idea if this might be part of the puzzle, but there has been a link established between narcolepsy and strep. And unlike our standard "cartoon" interpretation of what narcolepsy is or looks like, in its early stages, it's commonly described as a powerful desire to sleep. The lightning fast, slump-to-the-floor kind of narcolepsy you see on YouTube, etc. is actually an advanced form of the condition known as cataplexy, where in addition to the desire to sleep, your lose muscle control. Here's a link to a paper on the topic of narcolepsy and strep: Narcolepsy and Strep

I just remembered another one . . . not strictly for teens by any means . . . but my son really enjoyed it. The autobiography by Howie Mandel ("Here's the Deal: Don't Touch Me") is riveting. It mixes some heartache with lots of humor, but it definitely gave my DS someone he could relate to. Not a "how-to," but a human story about what it's like to discover you have OCD, and then how you deal with it out in the world and in your private life. Great read!

There's also a book written by Elizabeth McInvale (for a period of time, the IOCDF's spokesperson) that's autobiographical in nature; it's called "Kissing Doornobs." My DS read some of it, though I don't think he ever finished it. It might be more relatable to a female teenage audience than a teenage boy, but it seemed to set off some bells for my DS.

I think it really depends on your child's specific age and needs (especially during exacerbation) and their PANDAS presentation (i.e., predominantly OCD? predominantly tics? regression? small motor difficulty?) Here're a few things we used in our 504 when DS was in elementary school: Notification of strep and/or other major communicable illness in the school. Regular communication with teacher/psychologist/principal via email. Alternative activity for small motor-challenging activities such as detailed cutting with scissors or extensive writing assignments. Keyboarding and/or scribing (dictating to teacher, aid or parent) instead of handwriting long assignments. Extended time for assessments, homework assignments and/or projects, as needed. Preferred scheduling to accommodate sharing classes and lunch period with at least one good friend. "Cooling off" space to allow DS to gather himself, away from his peers, if he became overwhelmed. Things changed for junior high and high school because the situations and expectations changed.

Unfortunately, I think it comes with the territory. At some point, you just have to make the decision as to who/what you trust . . . your PANDAS expert, your ped, your gutt . . . and commit to it. Personally, I don't mind having a little measured cynicism and/or second-guessing in the mix. I think, in our case, it helped keep me grounded so that I didn't chase absolutely every potential measure or intervention that came across my radar without giving it some thought and research first. That being said, it can be both frustrating and demoralizing. And I do feel a degree of caution is warranted, as well. If you give a non-PANDAS doc the idea that you're some sort of "loose cannon," dosing meds and supplements without measure or due professional guidance, I'd fear you might wind up in a Boston Children's "situation," if you get my drift. In the end, I would be fairly judicious about what I chose to say to whom. If you find your ped to be useful for some purposes, keep them, but measure how much and what you share from the PANDAS side. Unfortunately, in our experience anyway, with the possible exception of Dr. M.'s group, most of the PANDAS experts are too bogged down with PANDAS cases to serve as your child's primary doctor for other health needs, so you have no choice but to turn to someone else for some of the more basic needs. You're the gateway, so ultimately, you control the care and the flow of information.

From our experience, this is a PANDAS/PANs effect and will subside over time, but it can cause problems . . . particularly academic . . . while it is in play. We tried ADD/ADHD med, also (Intuniv), really to no positive effect. Again, taurine has essentially no side effects, but it may help this "processing memory," i.e., their ability to stay connected with "what comes next" in a multi-step tasking situation. For a while, our DS would completely lose track of where he was, what he was doing; it could look very ADD-ish. For instance, he'd be taking a shower and forget whether or not he'd already washed his hair, or washed his face, etc. So he took to re-washing lots of times because he couldn't remember what he had or hadn't washed. Therefore, everything took that much more time. Same thing with getting dressed, brushing teeth, doing a reading assignment for homework, etc. When we introduced taurine, we thought we saw some improvement, and as he's healed and the inflammation has stopped being a chronic issue for him, all of this has improved. You might also try zinc, as it has helped with attention in our case, also. In the meantime, you might try adding mnenomic devices, more frequent memory drills for memorized academic information, and/or take advantage of some accommodations that give your child some extra memory support when it comes to quizzes and/or tests.

Good question. I don't know of a test for it, specifically, but maybe someone else does? Excess glutamate is thought to be behind a lot of mental "disturbances," from OCD to bipolar to Alzheimer's to even possibly autism. So they've been experimenting with substances that block the glutamate (NMDA) receptors and/or "mop up" excess glutamate before it can become a problem. One of the first studies I heard about and read was about 3 years ago, when Dr. Rosenberg with Children's Hospital of Detroit/Wayne State University had done brain scans (I don't know for sure, but I think in conjunction with Dr. Chunagi, though his name wasn't mentioned at the time) and found that kids with OCD displayed higher concentrations of glutamate in their caudate than did kids without OCD. Then Dr. Rosenberg participated in a paper about glutamatergic function/dysfunction in OCD and indicated that both b-lactam abx and NAC are among possible glutamate modulators. That's when we decided to use NAC. In our case, both a b-lactam antibiotic (Augmentin) and NAC have resulted in positive behaviors for our DS, so, by default, we've determined that glutamate is a concern for him.

Yes, you can get NAC a Whole Foods or Vitamin Shoppe, either in-store or order on-line.

Hey Melanie, I think you know that NAC, like Namenda, is thought to be a glutamate modulator. But my understanding is that Namenda blocks the NMDA receptors, whereas they don't yet know if NAC works by blocking receptors, increasing glutithione, or some other mechanism. Another difference being that NAC is a naturally-occurring amino acid, it's available over-the-counter, and it's inexpensive. Whereas Namenda is expensive and available by prescription only. Given as the mechanism behind Namenda is studied and known, if the side effects are not bad, I might try it and see if maybe its impacts might be more positive than with NAC. I'm standing ready for the rotten tomatos headed my way, but, unfortunately in our experience, there are few supplements that, in manageable doses, achieve the efficacy of prescription meds. I'm sure others may have a contrary experience, but that's the way it's been for us. I'm not clear on the side effect profile of Namenda, but if we could get it prescribed, we would probably try it. However, our docs are quite conservative and have reserved using these sorts of meds "off-label" for that time (knock on wood it never arrives) at which none of the other interventions are successful, and then there would be something else to try.

Remind me, how old is your DD? From what I've read here, Lyme treatment can take quite a while, and may require several tweaks and/or combinations of abx, so no, I don't think if, after a few months, you're still fighting symptoms, it means it's a bad sign. My DS's trigger was not Lyme; it was strep. But nevertheless, he was on abx for two years before we saw him reach and maintain health. And even now, we continue to supplements and some low-dose meds. I think his advanced age at diagnosis (12) played a role, also, as he'd been contending with PANDAS/PANs for years, incorrectly diagnosed and unsuccessfully treated. I would stay the course and continue to reach out to your docs. Keep a journal, let them know what seems to work and what doesn't. Unfortunately, even the "experts" are still learning about this illness along with us parents, and the good ones appreciate the feedback.

It sounds to me as though she still has some inflammation and probably a blood brain barrier that remains porous and is letting some stuff through that shouldn't be. I would supplement abx with D3, omegas, quercitin and possibly ibuprofen to keep the inflammation down and help her BBB heal. You might also try taurine, an amino acid that can help with short-term memory. We found it helped with processing memory/executive function, as in helping our DS remember which step came next in multi-step tasks like showering, getting dressed for school, etc. In the end, unfortunately, what your DD may need most at this point is some time . . . to heal. There's some evidence that anxiety itself may contribute to a porous BBB, and since a porous BBB can make more trouble for our kids, it can become a viscious cycle. I would consider changing her schedule, her expectations, her requirements to work at keeping the anxiety tamped down a bit so that the BBB can heal. Then it'll be more successful at adding to your efforts to beat infection, tamp down the antibodies, etc. Try to hang in there, encourage your DD to let herself off the hook for a while and be kind to herself. Then you be kind to her and to yourself, embrace the healing, the quiet moments. You'll get through this.

Well, if melatonin doesn't work and Prozac isn't helpful, but it's intrusive thoughts that are preventing her from falling asleep, I think you might have a couple of other options. You might try a different SSRI other than Prozac, though that usually takes a while to have a positive impact (4 to 6 weeks), and you would need to start at a very low dose given our kids' atypically strong reactions to SSRIs, in general. The other idea would be to follow ko's mom's lead regarding an antihistamine, since histamine in excess in the brain and gut can feed anxiety, also. I know several kids here are taking a prescription antihistamine, Vistaril. Meanwhile, others of us have some success with over-the-counter H1 blockers, like Pepcid, or antihistamines, like Benedryl. Those might be worth a try as they tend to have a more immediate impact. Good luck!

NAC is thought to be a glutamate modulator and has been studied for both OCD and trichotillomania. We've been using it for a couple of years, and I do think it helps with OCD. I cannot say that it, necessarily, in our experience anyway, helps with general confusion. What kind of "confusion" are you referring to? Can you give an example?

You might also consider melatonin . . . there are even time-release forms of it that can help ensure a good night's sleep. I would start with a low dose (1 mg.) and see if that is sufficient. If she still needs help, you can continue to take it up. My DS15, 155 lbs., takes 3 mg. nightly and it works like a charm. Give 30-60 minutes before "lights out."

I would think you'd do fine with a smoothie for most sups. You can also try adding some to applesauce, yogurt, tapioca, pudding, etc.