LNN

I don't have any experience as it relates to Pandas, but DH took Wellbutrin for a few months when he was trying to quit smoking. It didn't help in that regard (Chantix did). But he said afterward, it made his sub-clinical OCD drastically and permanently better, even tho he only took it for a short time. Now, it had been getting better on its own as he got older anyway, but wanted to pass along his experience.

I can totally relate to your concerns. On one hand, I get how you need to be more aggressive than "conventional wisdom" and conventional medicine would suggest. After all, look at the progress you got with this path - way better than you were getting with "convention". On the other hand, I also think sometimes you need to stop and do a gut check. I don't think any doctor or protocol should be followed blindly. I think you need to be comfortable with why you're using the treatments you are and if the rewards of each outweighs the risks. I think it's very healthy to question and when called for, to look at options. Hopefully, your LLMD is open-minded and will take time to talk about it and not just push a particular agenda, dismissing your concerns. I'd also ask if there are options - for example, if yeast is huge, can you do a shorter term nystatin/diflucan treatment and gradually switch over to a probiotic or natural option over time? If yeast is big, is it because metals are an issue? If so, then what's the treatment for that, because if you don't remove those, you will have a perpetual yeast battle. If the yeast is mostly due to the abx, then what about a pulsing strategy instead of a daily abx regimen? What's the best detox plan? I think it's good to ask these questions and know your options. My personal experience is that when we hit a plateau or backslide, we've removed a layer and now have to find out what's causing the backslide. We seemed to always hit a wall every 2-4 months for various reasons. It was totally discouraging and made me feel like no matter how "out there" I went with treatments, it wasn't working. More than once I thought about just giving up and trying to accept that this was as good as it was going to get. But I'm too pig headed and I'd eventually be willing to dig deeper. We did eventually find what seems to be the "big" underlying issue for DS (KPU) and now everything else has gotten much easier to work on. For DD, we are still in a trial and error phase. Her answers will be different. But I think if you can get comfortable with why you're using the things you are, then stay the course. If you think you need to back off of some things or find alternatives, then listen to your gut. It could be that there's a middle ground or small change in focus that's needed. Listen to your concerns and address them. That inner voice is so important.

rjayne - I sent you a message with some info. Look in the upper right corner of the screen - your login name appears in a drop-down box. From that box you can access your messages. From my perspective, much research has unfortunately been focused on the "controversy" of proving Pandas existence. The second tier of funding has focused on treatments in the hopes of getting insurance to cover IVIG. This has left little funding for figuring out how to close the BBB to prevent the horse from getting out of the barn. Madeleine Cunningham at Univ of Oklahoma, Mady Hornig at Columbia and Karen Newell Rogers at Texas A&M may be your best hopes for literature on the BBB and cytokines in terms of infection and neuropsych symptoms.

I'm so sorry things are going down hill like this. Our issues never got this bad, so I don't have any great advice. The SeaBands wrist bands really helped my when I had morning sickness. They work instantly and are only a few dollars - you can get them at any pharmacy. that might help a little. A few saltines in bed before DD gets up might help. Or warm ginger ale. For car rides, i sometimes need to keep the window cracked. For the train ride, maybe one of those hand held mini-fans to keep air circulating? I know these are lame, but maybe they'll help take the edge off or at least make DD feel like she has a few options?

Joint pain and swelling is not part of the PANDAS diagnostic criteria and I would resist the temptation to put it under this umbrella. Other infections, such as lyme, can cause joint pain and swelling in addition to neuropsych symptoms. I'm sure many other health issues can cause this as well. FWIW, I'd keep this on a list of outlier symptoms to be monitored or investigated separately from PANDAS. It's not uncommon for our kids to have more than one issue going on and I personally paid a price for lumping it all into PANDAS when certain outlier symptoms were clues that there was more to investigate.

I know very little about RAD but since you mention that her first 3 yrs were normal, I would highly doubt that what you're seeing is RAD. I always thought RAD was something that occurred as a result of a lack if bonding in infancy, not something that could develop later, after bonding had already occurred. Something about pathways and development - that RAD was a lack of those pathways ever being formed and that you only had a window during infancy development in which those pathways could be developed. But again, it's been a long time since I looked at it and then, only briefly (because our pedi had written RAD in DS's medical records and I freaked - but the pedi meant Reactive Airway Disease). Is it possible you're seeing an asperger's like response from your daughter? Lots of us have seen aspie-like behaviors at certain times.

My knowledge comes from all the other parents on this forum. There was a time when this was Geek Central and all sorts of medical papers were discussed/explained as we all tried to comprehend what just happened to our kids. You can find some information on titers under the Helpful Threads at the top of the forum. In a nutshell, ASO is an antibody that your body usually makes when it sees strep. These antibodies generally show up between 1-3 weeks after the initial infection. Anti-DNAse B is another type of antibody that your body makes against strep - it peaks somewhere between 3-6 weeks after infection. But everyone has a different "baseline" - labs establish general "norms" but some people, especially kids, have individual "norms" that are higher or lower than the average. So a good practice is to check ASO and Anti-DNase B titers at least 2-3 times to look not at the specific number but at the direction the numbers are moving. If the numbers move up - you likely had a recent infection. If they move down, it's more likely the infection has or is resolving. But it's all rear-view mirror measurements. They're helpful, but clinical symptoms are more useful for guiding current treatment than labs that show what happened a few weeks ago. Personally, it seems early to be re-checking. But I'm not a doctor and I'd follow your doctor's advice. When you get conflicting directions, follow your gut or the doctor you have the most confidence in. It doesn't mean one doctor doesn't know what he/she is talking about. It means they have a different perspective or are looking at the test for different reasons. Dr T might want the test early to cacth a rising ASO, which would be gone 3 weeks from now. Your pedi might just be looking to see if the infection has cleared and checking ASO in 2 weeks would give you that answer. Hard to speculate. In either case, I tend to come back to DCmom's conclusion. Being on abx at the time of blood draw doesn't seem to be a biggie. It's more a matter of how much time has lapsed since the initial infection and what you're trying to take a picture of with the test. If you want to "catch" rising titers, test sooner. If you want to see if the infection has resolved, check later. But as you said, some kids don't produce titer levels that are considered high, in spite of having confirmed strep swabs/cultures. There are research papers that show this and there's a lot of anecdotal support on this forum. So the test is very useful if you have a kid who produces these antibodies. But not helpful if you don't. My son didn't have high titers after confirmed strep. Could be because we tested too late after the initial infection. Could be because he was eventually diagnosed with a zinc deficiency that compromised his immune system. What's most important is that you educate yourself as much as possible - it will help you feel less out of control. You have a Pandas-friendly doctor and he will help you get beyond this crisis. All of the Pandas docs have their own take on things, and their particular approaches work for some and not for others. In a way, patients become self-selecting, eventually moving to doctors whose protocols match their kids' needs. I respect all of the Pandas docs and don't want you to get the idea you should be with anyone other than your current docs. But as your own understanding of this disease evolves, you will slowly feel more comfortable with being more active in your son's care and will become a co-pilot, which also helps you feel less helpless. I guess if I could give you one piece of "knowledge" it's that this episode will likely be your worst. You have very quickly found the right resources and that is a very very good thing that you should be very proud of. Even if a subsequent crises comes with it's own OMG moments, you won't be as blown away as you are now. You learn to cope and advocate. It gets better. Honest.

I just read the full article - had to do it early in the a.m. while my blood pressure was still low. I see no olive branches. I see them dismissing Swedo's "retrospective" study on prophylaxis abx because it relied on patient recall. Yes, let's ditch a disease based on an examination of insurance records and diagnostic codes as having more reliability than patient reports. They also completely ignore Hornig's mouse study - it would be rather inconvenient to address that one. They remain idiots in my book. We should all have a fund raiser to fund their retirements and get them out of the picture. DUT - here's my take on the upcoming Swedo presentation that focuses on symptom treatment over etiology...I think the Pandas supporters are tired of being roadblocked by the debate over GABHS and they recognize that other infections can trigger PANS. I suspect they hear from the trenches a fair amount and get that the kids need help now, not 10 years from now. And I think that they get that it's much more than strep. I think they also generally agree that things like IVIG, Pex, abx - help. So I hope/think this presentation is meant to get consensus on definition and focus on effective treatments beyond SSRIs and dopamine agonists, regardless of trigger. Then figure out why it works after establishing that it does work. (the current NIH IVIG study would be a step in this direction - it seeks to prove IVIG is helpful without necessarily "proving" why it works). My impression from things Cunningham has said is that this is the beginning of re-framing mental health by focusing on infetion-triggers and biomedical treatments. But maybe that's just me projecting my own views. Guess Vickie has something to put on her awesome research/social media springtime radar for us

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is the new name proposed for the subgroup, focusing attention on symptom onset rather than the postulated etiologies of PANDAS and PITANDS. The diagnostic criteria proposed for PANS have a similar clinical focus and facilitate recognition, diagnosis and treatment of the disorder. Funny, in this context, a group of researchers suggesting a new name that addresses treatment based on symptoms over etiology has an entirely different meaning than a very similar choice of words from Singer/Kurlan. Let's hope this conference brings real change.

I've always been partial to LBS - Linda Blair Syndrome.

I would think that if your intention is to do a single course of abx and then re-check titers to see if the strep infection has cleared, then it would make sense to run an ASO 1-3 weeks after you finished the abx (assuming you have already checked them once and have a baseline number). Anti-DNase B titers rise 4-6? weeks after an infection, so theoretically, if you checked these at the same time (10 days post-infection plus 2-3 weeks), these would be peaking. But since you're testing for infections that aren't necessarily effected by zith, I can see where Dr T would say it doesn't matter when you have the tests done. The only test I can see being effected would be ASO, which it doesn't sound like you're doing. If you have myco, the zith probably didn't touch it. The pneumo titers you're checking are likely checking to see if a previous pneumo vaccine was effective rather than checking for current infection (unless of course your child has current symptoms). I'm not as familiar with streptozyme or how it would be effected by current zith. Just guessing on all this, but thought I'd toss it out in the hopes it might help reconcile how different doctors could give such different advice.

E - I too value all your support and hand holding all these years. I in no way want to question they way you've made sense of it all for your kids and what works for them. When I hear that your ballet dancer has resumed her passion - how can you argue with that? It makes my heart sing! I almost cancelled my post more than once because I don't want to sound like I'm somehow wiser than all the docs who make a living being brilliant and trying to solve this riddle. I sometimes don't post on the Pandas forum because I agree with you - sometimes people like me tend to complicate Pandas and make it harder for newcomers to sift through it all to get help for their kids. PANS does lose the "simplicity" of PANDAS (simplicity - Ha! that's almost funny!). And maybe PANDAS is auto-immune like other autoimmune disorders and I do a disservice to "pure" Pandas families by trying to make it something it's not. IDK. But aside from my bad trait of not being able to keep my mouth shut, the other reason I post is for the kids you mention who don't respond in a "classic" way. The ones who haven't found remission. Maybe this group needs a new name - and maybe that's PANS - and PANDAS should be discussed as a sub-set with a distinct protocol, so not every parent feels they have to turn over every rock. When I go off on methylation like it's my new religion, I guess it's because it's a broader view and I think holds the key for some non-responders. It's the sentiment MommaKath posted a few days ago - for her son, it was an underlying obstacle that needed to be addressed before other healing could occur. And to get to that healing, for some of us, it meant more testing, more digging, more experimenting. I don't mean that new parents should immediately do genetic testing. not at all. But if their kids don't enjoy long remissions, then it's something to consider. I say this especially for the parents who did the Pandas then lyme dance and are still not seeing those elusive results. Back to the original post, despite my cynicism about Kurlan and Singer, I suppose it is a good sign that they've evolved from their 90's mantra of "strep can't cause neuropsych issues and TS is just bad genes, here- take this pill" to today's "lots of infections can trigger neuropsych and we should do a better job looking for triggers" - tho I still doubt their ability to do more than a "guy look" (you know - open the fridge, not see the milk because you bought a brand with a yellow label and not the usual blue label and declare "honey, we're out of milk").

At the risk of having tomatoes thrown at me, I'll toss out a contrary idea. I personally have come to see autoimmunity as a symptom and not a cause. A B cell producing an auto-antibody that attacks the wrong cell is caused by something gone awry. IMO it is not the cause itself. And the mass production of these B cells and the failure of T-Reg cells to call off the dogs and make the B Cells stop replicating - what causes this mis-management of the body's immune system? Why is the body attacking itself and producing damaging cytokines in the process? Why can the body not rid itself of the oxidative damage quickly enough? If multiple infectious agents can trigger similar neuropsychiatric symptoms, then the theory that PANS is autoimmune becomes less of a sure thing in my mind (again, please don't throw daggers). I say this in the hopes of a discussion, some maybe someone can show me where my thinking is off. But...The original PANDAS theory as I understood it was that a susceptible child got a strep infection and for some unknown reason (cause unknown), the host produced B-cells that saw the M-protein on the outer surface of the strep cell, mis-identified a similar protein on the surface of a cell that's abundant in the basal ganglia, and during a breach of the BBB, mistakenly attacked the self-cells, triggering the production of cytokines (CamKII), which then called more B-cells to the area. The body's lack of T-Reg cells prevented the self-attack from being promptly quieted and the lack of T-Regs prevented these Rambo B-Cells from being destroyed. But if multiple infectious agents can trigger neuropsych behaviors, I personally have a harder time with the hypothesis that it's the similarity in M proteins that is behind an auto-antibody production. Now, I am certainly limited in my knowledge of this stuff once it gets to highly specific details. And I certainly believe cytokines and the immune system are key factors. I do believe PANS is an immune dysfunction. But I'm not as sure of auto-immune as I once was. How does your body suddenly respond to multiple antigens, with different outer surface proteins by always producing the same b-cells that always attack the basal ganglia because supposedly the self-cells look just like all these other bacterial cells? And how could a virus, which most likely has an entirely different protein profile and lives within a red blood cell, provoke a similar auto-antibody response? An alternative that is making more sense to me is stolen from Yasko and Usman - both ASD doctors who spend a lot of time treating patients for methylation, heavy metals and chronic infection issues. Their work focuses on things that block the immune system from performing properly and those blocks then cause all sorts of toxic buildups (metals, free radicals, bacterial toxins) to damage the body and cause inflammation. Both the ASD and lyme world has a lot of focus on the damage chronic bacteria can do by hoarding metals in biofilms and stealing essential nutrients that the brain needs to function properly, creating an absolute mess of brain chemistry (thus producing all the same symptoms we all know). I tend to think of PANS as a severe breakdown of the immune and detox systems - which absolutely causes all the symptoms we all live with. And the treatments many find effective - abx, IVIG, steroids - would all help with inflammation and chronic infection, without auto-immunity being at play. I just don't see how to say it's auto-immune (which in my mind restricts the disorder strictly to one antigen, namely strep) and how to expand the disorder to include multiple infectious triggers (which I fully support). I guess I can understand how PANDAS could be described as auto-immune. But if you're going to broaden the name to PANS and include other antigens as triggers, I think you need to drop the auto-immune. Again, not trying to be disrespectful of those who feel differently. Just trying to re-frame the issue as a broader immune dysfunction, not necessarily a specific production of auto-antibodies. Prednisone squashes inflammation, even the inflammation caused by an appropriate antibody response, not just inflammation caused by auto antibodies. To that extent, having not read the paper, I would not be upset by the naysayers (whom I completely distrust) expanding the criteria and advocating for a full workup to uncover the etiology for any one individual, well beyond strep. Some of our kids - not all - have benefited from looking beyond strep. I do however, distrust their agenda and don't believe they have the understanding to recommend the appropriate testing to accomplish this.

So...I have a mental image of you trapped at home with DD, no coffee, no hubby, sick son...and you're making yourself feel worse by looking up IDSA on FB??? Can we ask them to retract their guidelines and quietly go away?????

So far, we've only done MTHFR due to family history tied to this gene. Yasko has a whole bunch - 20 something - but not knowing your family history or DDs particulars, it's hard to say which ones might be worth looking at. Since I know the liver and detox is on your radar, this might help - - it's a powerpoint presentation by Dr Usman - another big name in ASD/detox issues. http://search.yahoo.com/r/_ylt=A0oG7p1nHgZPO3YA.hJjmolQ;_ylu=X3oDMTByMTNuNTZzBHNlYwNzcgRwb3MDMgRjb2xvA2FjMgR2dGlkAw--/SIG=12mmphggp/EXP=1325829863/**http%3a//www.nationalautismconference.org/presentations05/usmanl.ppt Usman specifically mentions COMT, MTHFr, TCII, MTR. Maybe google those and see if any seem more appropriate than the others...the powerpoint presentation is pretty interesting.

If you stopped the vitamin water last night and did the test Sunday, you'd have 3 days w/o vitamins. Would that be enough or would you wonder about the results if they came back negative? If DD has to go another week w/o vitamins/supplements, is that ok? I think you have to trust your gut on this, or else call the lab for their opinion. I felt bad for calling them several times, but now, 6 months later, who cares what they thought of me? Call as often as you need to.

Sorry...I'm not at all familiar with any of these. I wish I could help.

Sorry - I meant to type L-5 methyltetrahydrofolate from Thorne and that the bottle we buy is capsules of 1 mg each, not 1 mcg. So similar to your son, DD takes 500 mcg, seems to be similarly priced.

Deedee is very right. Grow a thick skin and get to a doctor who wants to help, not hinder. I'm sorry you're still in the era where Pandas is "controversial". But it is light years better than it was a few years ago. Not trying to tell war stories about how when I was a kid I had to walk ten miles to school in the snow - up hill both ways. But rather to encourage you that it is changing and is getting easier to get our kids help, even tho it doesn't feel that way and is of little help as your kid cowers under the coffee table. What has changed is due to parents speaking out, advocating, sharing and supporting each other, changing doctors' minds one child at a time. You will also find that integrative doctors, DAN doctors and those handful of specialists who have witnessed the before and after of Pandas are more willing to help. They get it. I think you will probably still feel frustrated but at least feel supported when you see a doctor who is "on the team". Then you can fight germs and not medical arrogance and ignorance.

Buried in my way too long reply to another post is this link from yesterday's WSJ http://online.wsj.com/article/SB10001424052970204368104577136850522166664.html#articleTabs%3Darticle Tho she only touches on methylation, it does answer the question about why some of us geeks are so excited about the MTHFR gene and using methylfolate. (You can buy l-methylfoloate from Thorne and others for far less money than Deplin - http://thorne.com/Products/Circulatory-Support/Cardiovascular_Health/prd~B129.jsp) $17.50 for 2 months vs.$98/mo. For most adults, 1 mcg/day is sufficient. My DD6 takes half a capsule/day. It is not a silver bullet, IMO, but it does help.

I will try my best to answer some of these questions, but some of the topics are pretty complex, so not sure I'll do it justice. First, the easy one - MTHFR is the name of a gene that everyone has. It's job is to convert folate (vitamin B9) into methylfolate - a form that can be methylated (converted) by the body and set in motion chain reaction processes that make the body work properly. People have genetic mutations to any number of genes. But in looking at kids on the autism spectrum, a few doctors theorize that there are perhaps two dozen genes that are more likely to have mutations in these kids. Mutations that might "block" important chain reactions (which is broadly known as the methylation cycle) and lead to the neurological symptoms seen in ASD kids. One of these doctors is Amy Yasko, so she's been discussed a fair amount on the forum lately. One of the genes she looks at is the MTHFR gene. Of Yasko's 20+ genes she tests, the MTHFR resonate with some of us because MTHFR can indirectly effect the amount of seratonin you have available and seratonin deficits are implicated in OCD. (plus, to be honest, I like the idea of blaming my kids' problems on something with the acronym MTHFR ). It's an easy gene to test and can be done by any commercial lab and is covered by insurance. So if you're looking for methylation problems, it's an easy place to start. Now to skate out onto thinner ice...methylation as a topic... There are lots of imperfect analogies to try to describe methylation. It's a chemical process where methyl groups are traded. I think of it as hundreds of cogs in a clock mechanism. On the first cog, there are teeth that spin, maybe to the 3:00 position, where they touch the teeth of the neighboring cog. At that touch point, Cog A gives up a methyl group to Cog B. Cog B lights up and does something, setting Cog C in motion. Cog B continues to rotate and when the teeth touch Cog D, Cog D lights up and does something else. So imagine the trouble a body would have if there's a block in Cog B - you get not one but two problems down stream - neither Cog C or Cog D light up. Here's a 1999 article from newsweek that talks about SAMe - a supplement that works like an SSRI http://biopsychiatry.com/sameart.html. SAMe (known formally as S-adenosylmethionine) is not an herb or a hormone. It's a molecule that all living cells, including our own, produce constantly. To appreciate its importance, you need to understand a process called methylation (chart). It's a simple transaction in which one molecule donates a four-atom appendage—a so-called methyl group—to a neighboring molecule. Both the donor and the recipient change shape in the process, and the transformations can have far-reaching effects. Methylation occurs a billion times a second throughout the body, affecting everything from fetal development to brain function. It regulates the expression of genes. It preserves the fatty membranes that insulate our cells. And it helps regulate the action of various hormones and neurotransmitters, including serotonin, melatonin, dopamine and adrenaline. As biochemist Craig Cooney observes in his new book, "Methyl Magic," "Without methylation there could be no life as we know it." And without SAMe, there could be no methylation as we know it. Though various molecules can pass methyl groups to their neighbors, SAMe is the most active of all methyl donors. Our bodies make SAMe from methionine, an amino acid found in protein-rich foods, then continually recycle it. Once a SAMe molecule loses its methyl group, it breaks down to form homocysteine. Homocysteine is extremely toxic if it builds up within cells. But with the help of several B vitamins (B6, B12 and folic acid), our bodies convert homocysteine into glutathione, a valuable antioxidant, or "remethylate" it back into methionine. SAMe and homocysteine are essentially two versions of the same molecule—one benign and one dangerous. When our cells are well stocked with B vitamins, the brisk pace of methylation keeps homocysteine levels low. But when we're low on those vitamins, homocysteine can build up quickly, stalling the production of SAMe and causing countless health problems. High homocysteine is a major risk factor for heart attack and stroke. During pregnancy, it raises the risk of spina bifida and other birth defects. And many studies have implicated it in depression. In the second paragraph, you see folic acid mentioned. Folate is the body's natural form of folic acid. Your MTHFR gene converts folic acid into methyl-folate, which can then convert homocysteine (which can be toxic) into glutathione or recycle it back into methionine (which are both good). Well, if you have a mutation in your MTHFR gene, this process doesn't work right and you get clogged cogs. Having a MTHFR mutation doesn't mean you'll develop Pandas or autism. I likely have this mutation and tho I'm far from "normal", I don't have Pandas or autism. But if you do have Pandas, then any block in methylation might complicate your problems. There are many many places for clogs to occur. Some kids, particularly those with chronic lyme or problems with mold, have a mutation in their HLA-DR gene (which you can also test for). My kids likely have a genetic mutation that makes their bodies pee out zinc before their immune systems can use it. A clog in your immune system can obviously cause a lot of problems for a Pandas/lyme kid. But Yasko and others have focused on the genes specifically associated with methylation because methylation is so critical to so many functions. Yasko theorizes that if you find a genetic mutation involved with the methylation cycle, you can't "fix" the mutation, but you can build a detour around it. If you have one type of MTHFR mutation, when you take a mutli-vitamin, your body can't convert the folic acid in the vitamin. BUT you can take a pill of methyl-folate and give the body something that's already been converted. Your gene still doesn't work, but you've done the work ahead of time and your body still ends up getting the methyl-folate it needs for all the other cogs to work properly. Here's a much more eloquent explanation...from yesterday's Wall Street Journal (same reporter who covered Pandas last month) http://online.wsj.com/article/SB10001424052970204368104577136850522166664.html As for your vaccine questions, this is one where you just have to educate yourself and make a personal decision. Knowing what I know now, I would still choose to vaccinate my kids against the really terrible stuff (polio) and the things required to get into elementary school. (my kids never had issues that I would blame on vaccines). BUT I would not give any combo vaccines (would insist on a separate measles, separate mumps, separate rubella instead of MMR). I would always make sure before the fact that no vaccine contained thimerosal (which is a nice name for mercury). Many flu shots still contain thimerosal. Don't assume it's not used anymore. I would make sure my kids were absolutely healthy and hadn't been sick for 2 weeks prior to a vaccination. I would never ever give my kid tylenol after a shot, which I was told to do many times (tylenol can interfere with the effectiveness of the vaccine itself and it can deplete glutahione, an essential to helping the body detox after a vaccine). I haven't made up my mind about the vaccines required for kids entering 7th grade but have a few years on that decision.

Katherine, So happy to hear the appt went well! Methylation has played an important role for us (my DD has the MTHFR C677 mutation, my DS does not - but has methylation issues at other points in the pathway). It is not a quick fix - it can take a few weeks/months for things to re-balance and sometimes when you re-start a blocked pathway, there's a period of behavior blips as the junk gets cleared out of the pipeline. But I hope your DS finds this to be one of his keys to more lasting recovery! Sounds like you have much to be optimistic about, including less traveling! Please keep us posted. Laura

Our experience was similar to Suzan's. DS was totally pushed off a cliff by it. Both physical herxing (fatigue, etc) and neuropsych - one of the worst "pandas-like" episodes we ever had - ticcing, rages, and getting fixated on irrational ideas (I must go to the store NOW to buy a Nintendo DS NOW that I haven't yet saved enough money for NOW and I don't care that any of this isn't making sense, we need to get in the car NOW! - for 45 minutes...) We had to stop after 5-6 weekends. After that, things calmed down and DS did enjoy a great period. So tindamax packs a wallop but also can yield a big payoff. No medals given for slugging through too much at once. Consider pulsing - many LLMDs only have you take it on weekends. Or you can give a few doses and then take two weeks off. Talk to your doctor about a different schedule. Also make sure you have a good detox program. My son's inability to detox ultimately led us to discover KPU. Since he's been treated for that, he's doing way better and I'm thinking we may try tindamax again in the spring. Hang in there, but also pace yourself. My advice is to work with your doc to find a plan that's livable.

It was summer, so it was all one long weekend. If you collect on Sat into Sun morning, then freeze from Sun until you drop it off at Fed Ex on Monday If you collect Sun into Mon a.m. then freeze until Mon afternoon and then drop it off at fed Ex. It needs to be frozen for at least a few hours (at least until slushy) but the lab said it was also ok to freeze for a day or two. So either way works. Do whichever day works best in your schedule.

My kids learned to swallow pills by practicing on tic tacs. If they had to spit it out, no biggie. if they swallowed, they got to eat one the regular way as a reward.