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Worried_Dad

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Posts posted by Worried_Dad

  1. For our ds, IVIG alone didn't last until we got the right dose of the right abx ("Saving Sammy" dose of augmentin XR). In our case, we later found that our entire family had elevated ASO, so the problem may have been that he was always re-exposed after IVIG. (We did 3 rounds with Dr. K.)

     

    So - based on our experience - I think it's crucial to find the right dose of the right abx for your child, then go for IVIG as the "big gun" to get the autoimmune response under control. That gives your child the best chance to avoid re-infection and maintain their gains.

     

    Others' experiences may be very different. Just one opinion, for what it's worth!

  2. Just finished reading the April issue of Discover Magazine. It included an interview with Dr. Ian Lipkin, director of the Center for Infection and Immunity at Columbia University's Mailman School of Public Health. Dr. Lipkin was involved in the ground-breaking study that announced in 2009 the re-creation of PANDAS (essentially) using a mouse model ( http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice ).

     

    Toward the end of the interview, Dr. Lipkin specifically mentions PANDAS as "one of the most fascinating links between infection and mental disease." Here's the excerpt:

     

    An infection like strep throat provokes an antibody response, but the antibody created to fight the strep also recognizes proteins that are part of your body. Antibodies don't typically traffic much in the central nervous system. But if you have any one of a number of other infections or an insult like head trauma, the blood-brain barrier (which normally protects the brain from pathogens) opens transiently. Depending on how long and where the opening is, the antibodies get access to part of the central nervous system or brain. We are studying this process now in mice, using drugs to open up a portion of the hindbrain or the forebrain or the hippocampus and tracking the effect.

     

    Thought it was interesting that he mentions "other infections" as likely culprits in opening the blood-brain barrier. (I know a number of the PANDAS specialists have theorized about that, too.)

     

    Anyway, in the past few months, PANDAS has been mentioned by leading docs in both Scientific American and Discover. Pretty encouraging!!!

  3. When our ds was in full PANDAS exacerbation, he repeatedly begged us to kill him and said he "just wanted to die." Unfortunately, this is not unusual: when their brains are literally on fire from the autoimmune attack / inflammation, they are as overwhelmed as we parents.

     

    A few words of warning from painful experience. If your child expresses suicidal thoughts, take it seriously and monitor closely. Our ds did try to act on those feelings one time, grabbed a kitchen knife (luckily a dull one) and dragged the blade across his wrist. Absolutely terrified us!

     

    Also, many of the traditional psych meds prescribed to combat OCD and depression have an opposite effect in PANDAS kids. They're actually activating or dis-inhibitory, especially at "normal doses." So if your psych pushes this option, it's vital to go "low and slow" with dosage.

     

    You have our prayers. Nothing is more horrifying to a parent than hearing your formerly happy, healthy, well-adjusted child express a desire to die. With treatment, that nightmare does go away!!!

  4. Our ds had been making steady progress on the "Saving Sammy" dose of augmentin XR (1000 mg twice daily) until last Fall, when he came home from school complaining of feeling sick and his PANDAS symptoms surged more noticeably than they had in years. Eventually we took him to the local family doc, who took one look at his throat and said it looked infected, probably strep. We kinda freaked - how could he possible have strep throat on treatment-dose aug XR?!?

     

    Local doc (still a PANDAS skeptic) prescribed standard zithromax 5-day Z pack, and our ds felt better... but started to backslide after the zith ran out. We took him to the LLMD (great doc, but about an hour away) and got him to prescribe longer-term zith. So right now, he's on both zithromax (250 mg daily) and reduced-dose aug XR (500 mg twice daily). Knock on wood, that seems to be working, and he's regaining the ground he lost last Fall.

     

    I don't understand this phenomenon, either, but some kids on this forum end up having to switch from an abx that worked well for a time but then lost effectiveness (or use an abx combo). Different strains of strep? Or just another bacterial infection that triggers the dreaded autoimmune response? Don't know. Anyway, adding the zithromax seems to have helped our ds, so trying a different abx might be worthwhile for your ds as well?

  5. Hi, JunkyardJean (cool user name!):

     

    Our ds was originally diagnosed with ARF / SC due to symptoms similar to your daughter's although he had severe "seizure-like episodes" in addition to the migratory joint pain. After his ASO titer came back highly elevated, a local doc made the SC diagnosis. It definitely seemed to fit. Later, after abx were discontinued and he had another major exacerbation following strep exposure, the diagnosis was officially changed to PANDAS.

     

    Frankly, I think ARF, SC, PANDAS, and a number of other similar strep-induced autoimmune conditions (reactive arthritis, glomerulonephritis, etc.) are part of a spectrum of related disorders. This is what several PANDAS specialists told us over the past 5 years. Our son didn't fit neatly into one diagnosis and seemed to fall somewhere between SC and PANDAS. Some researchers even suspect that SC and PANDAS are just different manifestations of the same basic disease, not completely distinct disorders.

     

    From our own painful experience, though, I'd suggest the following.

     

    • Don't worry too much about the exact diagnosis, but pursue treatment aggressively until you dd is back to baseline. When our ds was originally diagnosed with SC, we made the mistake of just accepting his symptoms and waiting for a miracle to occur because the medical literature said that SC was "self-limited," meaning that it would (supposedly) spontaneously resolve in 9 months to 2 years. While we waited for that miracle, our ds got sicker and the autoimmune attack on his brain continued. MAJOR lesson learned on our part!
    • Don't spend too much time trying to find a knowledgeable, sympathetic local doc (if you don't already have one you trust). It's certainly a big advantage to have a local doc like this... but we wasted far too much time searching for local support after our original diagnosing doc passed away. If local docs aren't willing / able to help, find an expert, even if that means traveling out of state, and continue the search for a local doc afterward. The expert's diagnosis may even aid you in convincing a local doc to help.
    • I know this is all terrifying and overwhelming right now... but the Rheumatic Fever diagnosis (even if it's not the complete answer) might actually be an advantage in getting treatment for your dd. The official medical "standard of care" for RF is long-term abx prophylaxis until adulthood. For those of us who wound up with a PANDAS diagnosis, we often had to beg and plead endlessly - or go from doc to doc - to try to get abx for our kids. For our ds, the long-term abx (augmentin XR in our case) have been crucial to avoiding further exacerbations and allowing him to heal.

     

    Is your dd still on the abx? Which one, and what dose? Many on this forum have had to try a series of abx (and doses) before finding the one (or combo) that did the trick for their child. For our ds, prophylactic doses didn't cut it - he needed a full treatment dose, long-term, to make progress.

     

    BTW - our ds was originally put on amoxicillin, too. It might have kept things from getting worse but wasn't sufficient to let him get better. We needed the augmentin XR for that. Amoxicillin and penicillin seem to have a pretty high failure rate for kids on this forum.

     

    Hang in there. With proper treatment, your dd will get better. PANDAS/PANS is becoming more accepted, getting more press, and treatment options are expanding. There is much cause for optimism for all our kids!

  6. In Sept 2011, our PANDAS ds had his worst flare in 2+ years, since starting the "Saving Sammy" dose of augmentin XR. He felt miserable, went into our family doc (not terribly "PANDAS friendly") who looked at his throat and said "wow, it looks red and infected." D'oh! We couldn't imagine he could get a GAS infection on the aug XR, but something hit him. Family doc gave us a 5-day zithromax Z pack, which made a big difference... until it ran out.

     

    So now ds (thanks to our main "PANDAS-friendly" LLMD) is on 500 mg of aug XR twice a day and 250 mg of zithromax daily. The combo seems to be working well, and he's regained the ground he lost last fall. Was it really strep? Can't say for sure... but it scared the heck out of us! :unsure:

     

    Hi Worried Dad,

    I could be wrong, but I'm pretty sure Augmentin XR only comes in 1000mg tablets. If it is a 500 mg tablet, then I don't think it is extended release.

     

    Hah - yeah, that's what we thought, too, and maybe that was true in the past. But both our LLMD and pharmacist assured us that aug XR is currently available in 500 mg tablets, and that's what the LLMD prescribed to give us more flexibility in adjusting dosage and "ramping down" over time. Looking at the bottle right now, and it says "Augmentin XR - Amoxicillin/Clavulanic 500MG/125MG PO TAB" on the label.

     

    So for those who might need the smaller dose, or the ability to go for "in-between" doses like 1500 mg per day, it's a nice option!

  7. In Sept 2011, our PANDAS ds had his worst flare in 2+ years, since starting the "Saving Sammy" dose of augmentin XR. He felt miserable, went into our family doc (not terribly "PANDAS friendly") who looked at his throat and said "wow, it looks red and infected." D'oh! We couldn't imagine he could get a GAS infection on the aug XR, but something hit him. Family doc gave us a 5-day zithromax Z pack, which made a big difference... until it ran out.

     

    So now ds (thanks to our main "PANDAS-friendly" LLMD) is on 500 mg of aug XR twice a day and 250 mg of zithromax daily. The combo seems to be working well, and he's regained the ground he lost last fall. Was it really strep? Can't say for sure... but it scared the heck out of us! :unsure:

  8. We did the "Cunningham test" before and after treatment for our ds. His CamK II level was 197 (high PANDAS / low SC range) before IVIG. After IVIG and treatment-dose abx, we re-tested, mostly to confirm the improvement we saw and also because Dr. C felt this would have research value for her. His CamK II level had dropped to 109.

     

    Can't honestly say if it was just IVIG that produced the drop, or the "Saving Sammy" dose of augmentin XR, or both. But the level came way down, which was comforting!

  9. Our PANDAS ds has frequently complained of dizziness. During his initial illness (when he was diagnosed ARF / SC), he often had a clumsy, drunken gait while walking and seemed to have balance issues, sometimes crumpling to the ground (we called it "the rag doll effect"). This is a common symptom for SC and appears to affect PANDAS kids as well. Related to the basal ganglia inflammation / motor control issues?

  10. Mama and Buster cannot write the white paper, as good as it may be, they are not credible researchers on pandas. Not to take away from their expertise, or knowledge of pandas, lots of us here especially buster know more than most of the "experts" but the facts are Swedo has been fighting for us, for over 12 years, and I must say that I know she is on our side, and on our childrens side. Thats all, could the white paper say more, sure it could of, but I trust that this paper said what it needed to or what had to be said. I also trust once the ivig study is complete and cunningham tests are available more will be published. In the mean time, if your local neurologist does not believe in pandas or if you feel your sons tics were caused by a pandas attack please go see an expert in pandas. We all need to continue to fight for proper care, to fight to get this disease, its symptoms and treatments understood but for the immediate time period getting the right care for our children is out there and waiting around for our cynical large medical system to get on board could take years. I am not willing nor able to attack swedos paper at this venture, I wish it had said more, and I feel its ok for many here to say they wish it had said more. But because of parents request, parents collecting data on the kids, parents pushing for docs to reach out to swedo, she and the NIMH resurrected this study and collected doctors together, all the naysayers included and fought to help them see this disease exists. This paper allows all neurologists to continue to treat ocd and tics with the same drugs, with or without the diagnosis of pandas. Nothing really has changed except pandas now is real. I am just happy for that right now! Its a start in the right direction. I know families in my neighborhood whom docs have told them pandas is not real and the families have stopped searching for treatment. Now the docs will say its "rare" and maybe some of these moms will google us now and find better care.

     

    oh and as for public policy, I was referring to the cost of medicine, ivig and pex. And as for abx, our public policy is to limit them to prevent super bugs. Oh and Mama, you are a very good writer, never was I trying to say you did not understand the paper. I was actually talking to all on the forum about my opinions of the paper and why I thought it was important, and the history behind some of it. I like to be more of a big thinker, not really targeting anyone in particular, or any one persons opinion. Just want the kids to find care ASAP, I waited around thinking the genious doc at my childrens hospital would come around and see the light, and all the while I was letting my child get worse.

     

    Yeah, I was trying to be funny. There's a reason I haven't landed that special on Comedy Central yet, eh? ^_^

     

    But I do sincerely believe that the info shared by the "scientifically minded" on this web site has educated me more thoroughly than any other source. So maybe a "forum paper" is a better fit?

  11. I'm a writer and academic so I'm pretty well versed in things like context, tone, audience, the conventions of publishing, etc. -- as well as the way politics operate in any given field. My professional work also involves social change/activism, so I may analyze and critique things through those lenses when they are intended to effect change in the mainstream.

     

    Wow - those are excellent credentials for evaluating these research papers. I think you and Buster should collaborate on a "PANDAS white paper." That's one I know I could support without reservation! :D

  12. Our PANDAS ds's original symptoms began with joint pain and muscle weakness: classic ARF symptoms that were followed 6 weeks later by SC symptoms (seizure-like episodes of choreiform movements). Several of the PANDAS specialists with whom we've consulted believe that ARF, SC, and PANDAS are all on the same "post-strep autoimmune spectrum" of illness. So Lyme is definitely something to consider, but this can also be a post-strep, RF-like symptom.

  13. Overall, I'm heartened by the white paper. Seems like it's an incremental step in the right direction. My take at this point is that Dr. Swedo is being very, very cautious as she makes the case for PANS because she and her team were attacked so ruthlessly for the original PANDAS hypothesis. Here's the statement that struck me:

     

    Primary tic disorders were not a topic of discussion, because of the

    reported difficulties in accurately identifying PANDAS among patients

    presenting with primary tic disorders (described above).

     

    As others have mentioned, the main "PANDAS bashers" came from the tic / Tourette's camp, so avoiding anything that overtly antagonizes this group is probably a political necessity at this point. I agree that it's frustrating - our ds originally presented with tics / pseudo-seizures and no recognizable OCD (and was diagnosed with SC instead of PANDAS at that point) - but I can understand why she's treading softly. It sucks that politics is such a key consideration in the medical research arena... but that's reality, I guess. I think Dr. Swedo and her team are trying to compromise "for the greater good." And frankly, if this gets docs in the trenches to consider a PANS diagnosis more seriously, I think it's inevitable that they'll observe patients (like my son) who clearly fit this diagnosis but who have tics or choreiform movements as a primary symptom.

     

    Can't blame NIMH for being a bit gun-shy after the firestorm of "controversy" (i.e., withering scorn and professional ridicule) that the unveiling of the PANDAS hypothesis triggered over the past decade. They're on to something incredibly important - it could literally transform the treatment of mental illness - but they can't afford to get "filibustered" by prominent naysayers any longer. That hurts countless families and afflicted children. So I think they've made a tactical decision to narrow the initial scope of PANS so it has a better chance to gain a foothold, then they can expand from there.

     

    So I think we in the PANDAS / PITAND / PANS (or whatever the heck we are) community need to be patient. With all the publicity, and the the respected researchers (like the folks at Columbia and Tel Aviv providing corroboration via animal models, and the Jenike interview in Scientific American) voicing their support, the tide is definitely turning. Vickie's "Year in PANDAS retrospective" videos always remind me of how far we've come (and get my adrenaline pumping)!!!

     

    We're not at the end of the road yet. But at least we're passing major milestones on the journey to the medical establishment acknowledging the terrible illness that torments our kids. That's a wonderful thing!

  14.  

    If my memory serves me right, I think worrieddad has crohn's.

     

    Great memory, EAMom!

     

    Yeah, I was diagnosed with Crohn's in 1990 at Mayo Clinic, although it was "not typical" Crohn's. Now that diagnosis is in question (local gastroenterologist is no longer convinced it fits, based on latest colonoscopy). So I'm back to square one (familiar territory for folks on this forum, eh?). :wacko: Just started consulting the same LLMD who treats our PANDAS son, and he ordered a bunch of tests. Said he's had other patients originally diagnosed with Crohn's by "process of elimination" who have ended up having a different issue.

     

    So I "sort of" have Crohn's - was treated for it for about 20 years (until last summer, when the local doc called that into question). Wish I had better info for you. Emmalily, I'll keep you posted as the LLMD moves forward with diagnosis.

     

    Chemar's son has both a TS and Crohn's diagnosis, I believe. She might have valuable insight here: I know she's found a treatment regimen that's been very helpful for her ds.

  15. So happy to hear that the meeting was well attended and such a success. Wish we could have been there... but, honestly, we were there in spirit.

     

    Vickie, I'm assuming you created the Rascal Flatts opening? Gotta say, you have a gift: this and the other videos you've created (like the one for PANDAS Network) always put my heart in my throat but totally inspire and energize me!

     

    Congrats, those of you who organized this Parents Meeting. You've done a great service to all of the PANDAS families across the country and the world!!!

     

     

    Yesterday afternoon was the first PANDAS Parents Meeting in Indianapolis. I am happy to say that it was a success!

     

    Thank you to all those that attended and presented. Including the presenters, our "in part" sponsor, Organic 3's Dan Corrigan drove down from Michigan and spoke!

     

    We had a cross section of most of the country with parents from Wisconsin, Illinois, Indiana, Ohio, Kentucky, Mississippi, Tennessee, New Jersey, Michigan, and California! This proves no matter how far apart we are, we all have the same focus...getting our children better and keeping them healthy!

     

    The empowerment in the room cannot be explained. The parents that attended were determined to connect and share information.

     

    The organizers of the PANDAS Parents Meeting will work on summarizing the day's events and share it with everyone soon. We want to make sure those that were not able to attend, have the opportunity to learn from what was shared as well.

     

    Summaries will be posted on various outlets, including here.

     

    You can also visit the blog that has been devoted to the event.

     

    http://pandasparentsmeeting.blogspot.com/

     

    Again, thank you to evereyone that came!

     

    ps. Our welcome video from the meeting is already up, if anyone is interested...

     

  16. Kiddos can react differently to treatment. My dd11 had the restrictive eating thing when she was really sick. She never had PEX, but her first ivig was in 5/2010. She was 4'10" and 85lbs. 17 months later, she is about 5'6" and 135. The restricted eating stopped immediately for her, if fact the ivig procedure itself had her eating like I hadn't seen in a long time.

     

    Our son (ds11 at the time) was very similar to this. Wow, Jtsmama, your post was like a Vietnam flashback for me: sent chills down my spine! Our son lost 20 lbs in a few months, and we had to repeatedly remind him that we'd have to put him in the hospital for his own good if he didn't eat. Our house was like a war zone back then.

     

    So here's the good news: Like JAG10's dd, our ds came back from 1st round of IVIG with Dr. K and within a few days started eating like a horse! Went from being unable to eat (due to OCD fears) to eating more at one sitting than seemed possible. Huge relief! He had subsequent flares, but after we got him on the right dose of the right abx (for him, augmentin XR @ 2000 mg / day), he's been making steady progress. He eats well now (like a typical teenager - our grocery bills are killing us, but we love it!!!).

     

    Hope you find similar relief from PEX or IVIG if you go that route. As others have mentioned, making sure your ds's abx are sufficient to prevent re-infection (or kill off existing infection) is equally crucial to sustain the gains after IVIG/PEX. Best of luck!

  17. What I'm wondering about is that thrashing piece. I do realize that she has a severe case of PANDAS, having all the symptoms I've ever seen reported, so perhaps this is more rare, but has anyone else observed a similar thrashing in their PANDAS child?

     

    If so, have any of your docs commented on this?

     

    Our ds's original symptoms began with joint pain, muscle weakness, difficulty walking, and (most scary): rapid, jerky, uncontrolled movements of his arms and legs. These were at various times called by different docs "choreiform movements, adventitious movements, seizure-like episodes, tics," and of course (grrrr) "psychogenic movements." The seizure-like episodes put our ds in the ER 5 times in one month, when his violent thrashing literally rattled the exam tables for 60-90 minutes; he would be sweating profusely and begging for relief. Terrified us.

     

    At one point, this led to a diagnosis of Sydenham's chorea, eventually changed to PANDAS. We were told by docs that it really wasn't SC because in SC the movements are pretty much continuous, not episodic like our son's.

     

    Other parents have reported similar symptoms for their PANDAS kids, so I think that (unfortunately) the basal ganglia inflammation can cause this as it does in SC. For our ds, the movements gradually subsided / became more "classic tic-like" over time, and OCD became far more crippling than the tics in later exacerbations.

     

    Hope your dd finds relief very soon!

  18. Our ds tested indeterminate on Igenix for Lyme and 1 co-infection (ehrlichiosis). We are seeing a local LLMD we really like, and he does not believe our son has Lyme or ehrlichiosis but continues to prescribe augmentin XR for PANDAS. Here's a thread on the topic:

     

    http://www.latitudes.org/forums/index.php?showtopic=11408

     

    From this old thread and your current one, danddd, you can see that this question inspires passionate debate (kinda like between Republicans and Democrats in DC ;-) on this forum. Bottom line: PANDAS and Lyme / co-infections are both in the broader category of PITAND, and the clinical lines between them get very blurry. It's brutally hard to distinguish between them, with either current lab tests available or clinical picture.

     

    I think LLM said it well several times in her posts. If your child isn't improving on one treatment regimen under one diagnosis, keep testing and searching until you find the treatment(s) that work best. Nobody really knows all the answers yet, including the "medical experts" specializing in both PANDAS and Lyme.

  19. Hi there.

     

    Some on this forum probably remember more details, but I remember reading on a post that Dr. K. once was working with another doctor to give an out of town PANDAS child IVIG. There was some kind of complication or reaction and the other doctor didn't really want to handle it or solve the problem. Dr. K. wasn't even there. I think it created some problems and put Dr. K. in a bad position. So, it kind of makes sense that he has shyed away from that sort of thing.

     

     

    I'm afraid this was us: http://www.latitudes.org/forums/index.php?showtopic=4447

     

    The local pediatric neurologist who agreed to "arrange" local IVIg for our ds refused to get involved when our son became dizzy, weak, and nauseous halfway through the 1st day. The local infusion clinic didn't correctly follow Dr. K's protocol: they were infusing about twice as fast as Dr. K recommends (even though I told them this up-front and during the procedure). The ped neuro's office was literally 1 floor away from the infusion clinic, but she refused to get involved and told the infusion nurse to contact Dr. K, effectively leaving him "on the hook" for supervising a procedure from hundreds of miles away.

     

    Sigh. SO sorry to hear that this may have discouraged Dr. K from working with local docs on behalf of PANDAS kids. If this is the reason, then the local ped neuro here did more than just a gross disservice to our ds: her refusal to accept responsibility for a patient has harmed the entire PANDAS community.

     

    From what I recall, the main things about Dr. K's protocol that were unique were:

     

    • Gamunex Ig @ 1.5g / kg
    • Infusion spread over 2 days
    • Very slow infusion rate that gradually ramps up, depending on patient reaction (almost twice as slow as most "standard" rates at infusion clinics)
    • Lots of fluids (D5W? IV drip) before and after (Gamunex cannot be flushed with saline!)
    • Benadryl before procedure to relax the patient
    • Decadron steroid after infusion if patient's condition is severe

     

    The main thing about Dr. K's protocol when he directly supervises at the Oakbrook Surgical Center outside Chicago - he and the staff there are experts at dealing with the special challenges presented by PANDAS kids in exacerbation. We did 3 rounds there, and I don't believe our ds would have made it through the procedures at any "standard" infusion center. It takes extraordinary patience and creativity to make this work for a kid with extreme OCD, anxiety, and/or tics.

     

    Wishing you the best of luck, BoyIowa. It shouldn't be this hard to get help for suffering children!!!

  20.  

    Like all the other questions, I don't know that anyone really knows. Beth did make a comment in her book about how, at the last attempt at reducing the abx before he was taken off entirely, Sammy was "determined to make it work this time" after a couple of failed attempts at taking him off or reducing it. I asked her what she meant by that, and she admitted that it took some CBT/ERP work on Sammy's part to maintain some of the more stubborn OCD/anxiety behaviors as they reduced the medication.

     

    So, in my mind, I'm thinking that it's a possibility that, as they pulled back on whatever support the XR was lending him, since he was overall healthier and better able to make use of the therapy skills he'd been given, he worked hard at staying level, under control, and his body/brain began to regain it's own "natural balance" in terms of the glutamate modulation, as well as other brain chemicals and responses. We've talked on this forum before about how stress/anxiety alone might contribute to the blood brain barrier remaining open when it shouldn't be, allowing stuff to get into the basal ganglia that shouldn't be there. Since excess glutamate is considered an excitotoxin, perhaps it's the case that the brain releases/makes more of that when under stress, as well; many neurons are firing indiscriminately when one is anxious and "ramped up." So it could be sort of a matter of "getting off the merry-go-round" and remaining sufficiently "non-anxious" long enough for existing excess glutamate to be taken up or reduced, and then it becomes possible to reduce external supports.

     

    I know we experienced the same "Sammy pheonomenon" the couple of times we tried reducing my son's XR over the last couple of years. More recently, though, after nearly 2 years of solid XR, we decided it was time to try again. He's been in a "good place" for an extended period, so DH and I thought maybe he'd finally gotten off the Anxiety Merry-Go-Round and it was worth another shot. This time we started very slow, though, switching out only his night-time XR dose every OTHER day for a 500 mg. regular Augmentin for about 1 month; 3 weeks ago, now, we shifted down again to giving him that 500 mg. dose EVERY night. He's had a couple of atypically anxious moments in the last couple of weeks, but he's recovered reasonably quickly, and we haven't seen the spiraling down into the abyss sort of trend that we'd seen in previous reduction attempts (knock on wood). So, this time, we're sticking with it. Once he seems entirely level at this dosage, I'm hoping we can reduce again, swapping out a morning dosage of XR for a 500 mg. regular augmentin, first every other day, and then hopefully every day, until we take him off altogether.

     

    I don't know what the answer is; I'm just trying to put together the experiences others have shared, the current research available that's at all understandable to a non-science person like me, and our own experiences.

     

    Anybody else have thoughts on this topic?

     

    Nancy, awesome to hear that the dose reduction is working better this time. We're trying something similar, but too soon to tell. Please keep us posted!

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