LNN

I find myself in a place where I could use some ideas, where I want to share progress, but don't dare post about it because of personal attacks and threads being derailed like this. It feels so counter-productive and frankly, it's poison. Please stop.

Sometimes, on good days, I promise myself I'll write all the docs and tell them what we learned. But then something else gets uncovered and I realize we're not yet at the bottom of things. So I keep waiting to get to the ending before I write the rest. Maybe we'll get there before they all retire!

PMd

Ok, I get the cringe then. I posted on the Pandas forum last week that the reason I like PANS (regardless of what the "A" officially mean - I've seen "acute" and "autoimmune") is that there's no "S". This not only opens the door for multiple infections but also for environmentals. What I also like about the new name is that it invites broader research and it in a way unites three worlds - lymeland, autism and Pandas. The groups have many differences of opinion but it seems like we're all chasing the same basic things with the same basic premises and sharing some of the same tools. Some of the arguments seem like red herrings. Yeah, the pill war went much better than expected. 10 days into KPU and so far so good. Days 3-4 were really bad and I was ready to quit. But then it got better. Holding my breath. The dreaded week #3 will be the first week of school. LLMD appts next week. Debating whether I want to put my DD6 on the chlorella too. I think she'd definitely benefit, but not sure I'd get compliance. Hoping I can get the green light to give fewer pills. She's only 43 pounds. Like milk thistle, this stuff has some really good effects.

I think it's easy to allow this to consume your life, but I also hear your family telling you that they're worried about you and that this may be crossing the line between commitment to finding answers and into a degree that could be effecting important areas of your life. I am all for not stopping until you get the riddle solved. I am extremely guilty of having insomnia at 2am and being on this PC. I have lost balance more than once. I also paid dearly emotionally. My family and friends were telling me they were worried about me - and they were right. So I'm not criticizing. But addicts often don't see what everyone else around them sees. They feel they are "managing" when they are not. You may need to take some time to soul search and even if you feel they are wrong, they are telling you things have gotten out of balance. That at least a few hours of the day needs to be focused on the joys of "now" or you will miss - and maybe lose - what you cherish the most - time with family and small joys of childhood. Even in dark Pandas days, it's important to remind yourself of the gifts your child has and to find happiness in little moments. I totally get the mamma bear thing. But having been here far far too long, I've seen marriages and families torn apart by losing balance and not listening when the spouse tries to communicate. Your family is giving you a message. Whether you agree with it or not, you may need to listen and nurture non-Pandas aspects of life - or what you end up with may not be the thing you've been fighting for.

I PMd you

Michael - best of luck with surgery! Sounds scary - I hope it pays off with many positive benefits! Thanks for rounding out his comments and adding perspective. You're right. It's easy to forget his client make-up - the very sick and predominantly adults. But when he talks about autism, it's hard for me to imagine how parents get their kids to cooperate with some of this stuff. It's just mind boggling. I'm on cloud 9 just to be able to get 30 chlorella pills into DS every day. Wendy - didn't mean to upset with anything I said. I was only glad to see recognition of some of the things we've all dealt with, since others broaden their views based on what Dr K says. I grinned and you cringed - there must be a disconnect - I will have to go back and re-read.

Wendy Thanks for posting. Always good to get his perspective, especially on things he may have changed his thinking on. I grinned inside when he mentioned Pandas. This never would've been on his or any other LLMDs radar a few years ago. It's because of the parents who have gotten media stories out there, conference presentations, parents pushing researchers to publish and launch more studies, and the trail of parents heading into LLMD offices telling stories that emphasize how much overlap there is between disease symptoms. It's not like there was any single thing that did it, tho some moments were bigger than others. But a series of bigger and smaller steps that are changing the landscape. I feel like these forums have been incubators for ideas. Pretty cool. Also good to use these bullet point kind of summaries to see if there's agreement with what your own LLMD is doing - or not. A good place to start a list of questions prior to your next visit. I do however, have to agree that there do seem to be contradictions in here. Maybe there wouldn't be if you were there in person and heard everything in context. But it's not the first time I've read his stuff and walked away confused. I also wish there were more "seems to be" kind of comments rather than absolutes. His statements about 90% of patients having this or 100% having that just bother me. Reminds me of another eastern European doctor we know who says that lyme is such an insignificant factor in Pandas that it's not even worth testing for. I feel much better when doctors seem less sure of themselves. And oh, if he only he had kids or grandkids of his own, a few picky eaters and moody, stubborn rugrats, so he could do reality checks on some of his treatment notions. No matter how spot on he may or may not be, some of his ideas are just not practical in my house. Maybe it's just me. Just venting a bit. Still gave me things to think about...thanks.

My bad. You're right - it's Quest. Here's a list of their bartonella tests http://www.specialtylabs.com/tests/display.asp?keyword=bartonella&assay=1&technotes=0&noses=yes I think we only did 8852 and 8853 but don't have it in front of me. When we tested, it was prior to the Quest ownership. You may want to call your local Quest - it could be that you can get the blood draw locally and have Quest send it to the lab.

It's possible Dr B has already ordered a co-infections panel from Igenex. But if not, that's one thought. However, it's a pricey test and many lyme docs use other labs that accept insurance, such as Specialty Labs (now owned by LabCorp). If your lyme results have positive or IND bands, one other way at looking for evidence is to test C3a and C4a immune complexes. These are generally covered by insurance and can be done at your local lab. Mycoplasma is another thing to test for, tho he probably already has. Testing C3d complexes is a way to see if the immune system is generally activated, tho it won't tell you the cause. Some on the lyme forum have found other things beyond lyme that are at play. A biggie is mold. If you have mold in the house, it can seriously get in the way of recovery from any chronic illness. Another is something called MARCONS, which is an antibiotic resistant staph infection of the nasal passages. You can read about both at www.survivingmold.com Viruses can be a factor, as can mineral/vitamin issues. Some of these things aren't in the focus of Dr B's practice. So you may need to get copies of all the labs and digest what you've done so far and then evaluate next steps. If you do end up leaving with req's for more blood draws, make sure Dr B instructs the lab to cc: you with results (tho Igenex will only send to the requesting doctor). That will eliminate the need to hound the staff for results.

We have done both. Much of the decision, sadly, may have to do with whether your insurance co. will cover one or the other. Putting that aside, you need to go with your gut. I don't think there's any research to indicate one works better than the other for all kids. PEX got rid of my son's tics for 18 months. They only returned for about 6 weeks this past spring when we got too aggressive with lyme treatment (which is why neither pex nor one HD IVIG brought us lasting remission). Others will tell you that IVIG produced positives as well. So I don't think your decision can be based on one being "better" than the other, only one being "better" for you. Many doctors feel Pex has too many risks. The biggest is the risk of infection at the site where the PICC line is inserted. But Georgetown does this every day, for many diseases. Those nurses are the best I've ever met. they know their stuff. As I saw it, the biggest risk of IVIG was that it was a human blood product and carries small but real risk of becoming infected with an unknown illness that isn't currently screened for when they prepare the immunoglobulin. There is also often a longer "herx" following IVIG, with several weeks of worsening symptoms afterward. So it's really a matter of which set of risks you feel more comfortable with (and what sort of financial picture you'd be looking at). When we were at Georgetown 2 yrs ago, Dr L only did one IVIG. I don't know if her thinking on this has changed. I wasn't under the impression she did multiples unless it was clear the first was wasn't enough. You may be able to call her staff and ask. Your other option is to wait. There is nothing wrong with that. It doesn't preclude you from doing something later. Listen to your heart. Best of luck with your decision.

I was googling something else and ended up at this site. The story behind how the organization got started will hit home. Some of the articles are not recent, some would be viewed as unsubstantiated by traditional standards. I post it as a starting point for those who like to investigate non-pharma treatments but urge you to validate whatever you read through multiple sources and also to coordinate any supplements with a trained practitioner. If nothing else, the titles of the articles will get your head nodding. articles Safe Harbor

I was googling something else and ended up at this site. The story behind how the organization got started will hit home. Some of the articles are not recent, some would be viewed as unsubstantiated by traditional standards. I post it as a starting point for those who like to investigate non-pharma treatments but urge you to validate whatever you read through multiple sources and also to coordinate any supplements with a trained practitioner. If nothing else, the titles of the articles will get your head nodding. articles Safe Harbor

Emmalily - thanks for the reminder. DS insists the iPod helps and I resist. I will lighten up (sometimes). Tampicc - yes - my son rolls on that exercise ball incessantly - drives DH nuts - but saves the couch! And I love the melatonin before nighttime googling! Like Philamom and Lisa, I am so guilty of staying up past midnight - partly due to the research obsession and partly just for the "me" time in the quiet of the night. Would love some more school ideas, especially this time of year. I'll also toss out some health ideas - Toothbrushes - always toss toothbrushes 2-3 days after starting an abx for a new infection. Store toothbrushes so they don't touch each other. Replace frequently, consider sanitizing in boiling water or with peroxide on a "regular" basis, consider giving your PANS child his own toothpaste (doesn't everyone drag the tube across the toothbrush - source of cross-contamination).

The owner of my local health food store cautioned me about long term use when I went in to buy some for my husband. She explained 1-3mg is generally safe and ok to use short term (e.g. 6 weeks) to reset your body clock but she advised customers against long term use because it (according to her) reduced the body's own production it (much the way prednisone can make your body stop producing its own, which is why you need to taper, so your body re-starts its own manufacturing). But I also found articles about how it's very useful for people who don't make enough of their own, such as in kids with autism (tho I cringe when autism is used to describe what we know is a rainbow of issues and no one in their right mind should make statements to imply a majority of kids with autism share any particular health issue like under-production of melatonin). A quick online search - I found lots of studies on short term use but none on long term. Mostly comments like "side effects from long term use are unknown". But this USA Today article may make you feel better: http://www.usatoday.com/news/health/2008-03-02-kids-melatonin_N.htm Although I am hugely skeptical of what I read in Wikipedia for medical research, there are some interesting comments concerning immuno-modulation, cytokine production, brain detox, liver detox and other buzz words we tend to focus on. Too much to cut and paste, some of it seems to contradict the next sentence. So maybe just scan at your leisure. http://en.wikipedia.org/wiki/Melatonin

My hope is that others will contribute bullets and I'll add them. Once we have a more complete list, I'll pin it. As for hubbies, maybe Worried Dad will chime in and give us insight In our house, my DH has an issue with the concept of time. We joke that in his world, something either happened 5 minutes ago, 5 days ago or 5 years ago. Nothing in between. When we discuss the kid's behaviors, he tends to feel that how things are now are how they have always been. So if bad, DS is always difficult (can't remember when he was agreeable a mere two weeks ago). If things are good, there's no urgency to planning ahead. Why can't we just enjoy the "now"? Some merit to his perspective. The reason our marriage works is that he balances me. So I have to remind myself to appreciate his views even when they're not the way I see things. The truth may be somewhere in between.

Great idea! Here are some of my survival strategies: For ADHD/School work: break homework up into very small chunks. As soon as focus becomes a battle, take a 5-10 min break. Allow physical activity while doing homework. Stand instead of sit, use a squeeze ball while reading, allow chewing gum. Allowing the brain and body to multi-task makes homework easier. As soon as your child gets home, review assignments and anticipate how long it may take, given his/her current abilities. Work backward from bedtime to figure out when homework needs to get started, rather than starting at the traditional time and letting bedtime get pushed off. When homework slides into tears and tantrums, call it a day. Your relationship and having your child know you trust him when he says he just can't do anymore is more important than any assignment For dysgraphia: Use your home printer to print paper with really dark, bolded lines on it - vertical lines for math, horizontal lines for writing. Place it underneath your child's work paper so (s)he has a guide, without the stigma of using lined paper when peers aren't. If you have a 504, make an accommodation that you or your child can type answers to homework. Focus on the process of learning rather than the execution of the writing. For age-regressive behavior: When impulse control is non-existent, we use an NSAID on a regular schedule rather than waiting until symptoms have already escalated. During the school year, Aleve can be really helful, as it lasts longer than motrin and can stay effective during most of the school day. At 55 lbs, 1/2 an Aleve is ok. Dosing and side effects of various NSAIDS can be found here: NSAID Dosing For anxiety and OCD: CBT is extremely helpful for anxiety. Finding a therapist for young children can be very difficult, though younger kids actually seem to adopt the techniques much easier than older kids. Some books that really help are "What to Do When You Worry Too Much" (Heubner), "Freeing Your Child From Anxiety (Chansky)and for younger ones, "Tiger, Tiger, Is It True?" (Byron) ERP is, IMO, the best way to manage OCD over the long term. SSRIs in small doses may also be needed in individual cases, and medical treatment for the underlying trigger is of course needed. But for long term skills and for giving your child a sense of control and your whole family a mindset of not being a victim, I can't say enough in favor of ERP. It may not be particularly effective at the peak of an exacerbation, but over the long term, it instills a perspective to problem solving that can be applied to many aspects of life, even once the OCD is under control. Good books on the subject are "What To Do When Your Brain Gets Stuck" (Heubner), "Freeing Your Child From Obsessive Compulsive Disorder" (Chansky), "Talking Back to OCD" (March) - which is very helpful explaining the parents role, which is not to do the work for the child but to be the coach. Breathing exercises and bedtime massages help with relaxation and also give you a chance for "talk time". Having a designated time to connect with a parent every day can make it easier for a child to talk about fears and turn a bad situation into an opportunity to build a long term, trusting relationship For tics Some have found diet, EMFs, TV and computer screens - to be triggers. My son swears playing video games gave him relief, as it distracted him. And even tho he may have ticced more afterward, for him it was worth it to be able to block out the urges for a period of time. There are medications but few on the board have reported much success. Although they are very heartbreaking to watch and a very public sign that something is very wrong, it's often the parents who struggle most with tics. Having lived this, I can look back and say the best thing I could have done (but never managed to do) was to ignore the tics and remind myself that tics are better than many other things, like cancer, permanent disabilities and OCD-driven anorexia. Tics are tough, but survivable. There is a therapy called HRT - Habit Reversal Therapy - it's like ERP for tics. Some TS specialists say it works. My child was never in a place where he was willing to try it - again, the tics bothered me for more than they bothered him. For overall health - Detox, detox, detox. It has been so important and reduced the severity and duration of symptoms in a way I never imagined. [*] Type up a medication schedule and keep it with your child's medications. List name of medication, time to be given, dosage and whether it should be taken with/without food, away from other meds, etc. Make sure the name of the medication matches what's on the label. Should you even not be available, the person dispensing meds will be looking for "omnicef" per your instructions when the label may say Cefdinir. For siblings Dates out of the house with a parent, especially the parent who's giving the most attention to the sick child. Therapy to help the siblings understand what's going on When the sick child gets bedtime attention with massages or talk time, it's important that siblings get the same thing. We alternate nights with each kid. One night, mom reads and does the bedtime routine with the sick kid and dad does the routine with the other. The next night, we switch. If you have more than two kids or less than two parents, try staggering bedtimes, or maybe stay up late with one kid on weekends. Carve out time in one way or another. Above all else, special one-on-one time is the most valuable thing you can give to any child, but especially to those who live with a sick brother or sister. For marriages Respect is probably the most important. You start out thinking you're both on the same page. Then one spouse takes the lead on health and the other focuses on career, the rest of the family and all those other goals you had before the illness. It's easy to reach a point where you no longer share the same reality. It's important to realize that you're each doing your best (hopefully). But it's unfair to expect your spouse to react to things the way you do. Periodic therapy, dates, and frequent communication (about more than just illness) is essential. It's a constant - and sometimes difficult - investment. For yourself A good cry is a good start. BFFs are essential. A journal helps (using this forum as a journal counts). You need to view yourself as an essential resource. You'd never whip and beat your farm horse and expect it to work tirelessly without time to rejuvenate. You'd feed it, take care of its health needs, show it affection and companionship and give it well deserved rests. That's how you keep the farm running for the long run. Parents like to put their own needs aside, telling everyone they'll take time for themselves once this is all over. Truth is, for many of us this is a multi-year marathon. Self-care isn't optional. Waiting until a nervous breakdown or divorce doesn't do anyone any favors. Sometimes being selfish is the most selfless thing I can do.

I don't know that anyone's proposing any theory. I think parents coming to the ACN forums can have kids who have a set of symptoms that are infection triggered. Those symptoms overlap quite a bit, particularly if the lyme comes with bartonella or is neuro-lyme. I personally think a child could have a tick-borne illness, Pandas, both or neither (in that there could be other infections or issues that need to be explored beyond bacterias). I don't think that getting Pandas means you can't also be bitten by an infected tick. I don't think having Pandas means you can't also be struggling with mold in your basement. You may have some outlier symptoms if you're dealing with more than one thing. They may have an amplified effect if they end up in the same body. But I don't know that they're automatically intertwined. That's why I like the term PANS. It recognizes that many infections can trigger neuropsych symptoms. It advocates for treatment of those infections. It, hopefully, starts to offer a variety of treatment options depending on the current trigger. I don't see any of it as either/or or chicken/egg. I see it as the recognition that mental illness is like any other physical illness in any other organ - something with a medical cause that deserves medical treatment, and will hopefully move us all beyond band-aids of symptom management and closer toward genuine health. I don't mean to speak for S&S - but I read her post as only an FYI that although an abnormal response to strep can be part of your history, if good health continues to elude your child, it's important to keep searching for that active trigger, even when, like her (and like me for many many months), you can't see how in the world something other than strep could be at play.

We too are on the KPU path and of course, once you feel you're onto something, you want to suggest it to everyone else. Something for you to consider, but I'm not here to push it. As for neuropsych testing, my only experience is based on Dr L's advice. We had scheduled an evaluation and paid the $2000 "retainer" before we started with Dr L (a friend ended up paying $3500 with the same psych before all was said and done and it took 4 months to get the final write up). She told us to cancel the appt. Her thought was that an evaluation would measure the impact the disease was having on DS's abilities but it wouldn't be an accurate picture of what was permanent and what was the disease. She was right. We got our money back (which was immediately sucked by by medical bills). If we had tested two years ago, when DS was a mess, it would have showed all sorts of issues. If we tested him now, many things wouldn't be there anymore. So not sure what testing would accomplish. You know there's ADHD. But what will testing tell you in terms of how to treat it? I'd guess there'd be a recommendation to add strattera or other med. But if it's lyme or KPU or mold...an adhd med may or may not work. If you did want to try an adhd med, it seems like it would be much cheaper to get a trial from your ped instead of paying a ton for an evaluation. Not sure what you'd get from it that you can't get elsewhere for far less money. As for handling the ADHD on a daily basis, what helped us, at least a little, was having a 504 plan that encouraged the teacher and TA to check on DS frequently and prompt him to return his attention to the task at hand. We broke up homework into short (5 min) intervals with 10-15 min breaks in between, even if that meant spending an hour on what should've been a 15 minute assignment. DS stood at the homework table instead of sitting. We did a lot of visual prompting to figure out a math problem, as staring at a paper was sure to make his mind wander. DS held a squeeze ball in his hand while he read a book. Some kids chew gum during homework. Some are allowed to stand or sit on a large ball in the classroom instead of a chair. It sounds contradictory, but giving the brain two things to do at the same time actually helps them focus. Keep the hands and body busy and the brain can focus better. As we've progressed with lyme/bartonella/KPU, I have seen adhd get less and less. The residual has as much to do with his being bored by school as it does with anything else. He now has no problem concentrating on things he's interested in and doesn't lose his train of thought nearly as often. Don't mean to sound so negative on the testing. It's just a very expensive thing. So wanted to encourage you to make sure you would get your money's worth. Good luck!

We tried bovine IgG for a short time. It isn't transfer factor - just a powdered source of IgG intended to boost the immune system. Not sure if this is what you're referring to. It's not cheap and you have to take it for quite some time. We never checked Ig levels to see if it made any difference. We had to add other supplements and with only so much money in the bank account, this wasn't one of the ones that stayed in our cabinet.

I PMd you her email.

Lisa, I'm really sorry you're in this place. I get it. The lyme diagnosis is best set aside until you see Dr B and get a copy of your labs. But there are lots of days between then and now, so let's assume for a minute it is lyme. If so, what you're seeing is a herx. And the best way to treat a herx is with detox. It's what I wished I'd known about after my DS's IVIG. You can post on the lyme forum for a wider range of ideas, but for starters, I'd read up on milk thistle (do not use if your son is allergic to ragweed - it's the same family). Here's a good link milk thistle There are caveats - if you take certain medications, milk thistle can change the rate of liver processing and cause certain meds levels to elevate higher than intended - so do look for the list of contra-indicated meds - but it's unlikely a child would be on them. For brain fog, many use alpha lipoic acid or glutathione. To soak up toxins out of the GI tract, clay (liquid or you can get it in capsules but you have to take lots of 'em), charcoal (useful but soaks up a lesser range of toxins) or chlorella (really effective stuff but you need to take lots of it - like 10 little pills/dose 3 times a day), as much water as he'll drink, and make sure he's having daily BMs to get junk out of the body. And of course, good ol motrin. If you don't like using motrin, curcumin is an anti-inflammatory, but it doesn't touch symptoms in our house. Unfortunately, time is the thing that is needed most. But we've found detox to be hugely helpful to get through bad times. Keeping you in my thoughts.

My understanding is that ERP and CBT techniques are the same, regardless of traditional vs. PANS. CBT and ERP have been very helpful in our house - but on the upswing and on the downswing of an episode. It is not very effective at the peak of an episode. The fears were just too strong. So we talked about ERP strategies at the worst of times and about what the kids could/should do. If they felt up to it, they would try an exercise - maybe only delaying a compulsion by 5 seconds. And that was heralded as a success. The mere attempt to fight back, to just shift their mindset a tiny bit, to envision what small step they might attempt tomorrow - that was rewarded. Then, as the OCD and anxiety showed small chinks in the armor, I'd push harder - go for 60 seconds, then 3 minutes, before giving in. The goal was never to stop doing a compulsion. That, they would do on their own or it would simply disappear. My goal was to instill the mindset, to empower them and let them know they could be the boss, not the victim. So I'd say it's the same techniques. The only adaptation we made was that we set super low goals when all other symptoms were at a peak, because it was all they could handle. Then the goals got harder as they got healthier and other symptoms lessened. I would PM DCMom, as she's in Florida with Drs Storch and Murphy right now with her girls, doing a 3 week intensive ERP program. Perhaps she can relay your question to the experts.

If you subscribe to Latitudes quarterly newsletter, there's an article about the different strains of probiotics and what each strain is best known for. We use Theralac, which provides 30 bill CCFUs of a mix of strains. My kids, who are on multiple abx, haven't had any gut issues or carb/sugar cravings since switching. It also comes with the benefit of only having to take one pill to get a mix of stuff. With lyme treatment, the number of pills can be overwhelming, so getting a big bang in one pill is a big plus. Also, my daughter used to suffer from repeated yeast infections. So our doctor recommended that she do two weeks daily of TruFlora and now takes it twice weekly (instead of the Theralac) as a preventative. We went on vacation last week and I didn't take the TruFlora - just did 7 days of Theralac with her. When we got home, she started complaining of itchiness. Gave TruFlora and it resolved. Your question comes up periodically on the forum and there's wide variety of what people take and how much. Seems once someone settles on a product, they become loyal to it. It may be a matter of trying different things, or weighing features - is taking just one pill important? Is refrigeration/shelf life an issue? Personally, I think getting variety of strains into the gut is important, which is why we no longer use Culturelle. But I'm not sure there's one right or wrong answer.

Thanks for posting this. My DS started a treatment protocol for pyroleuria four days ago, with lab results indicating he might show signs of mercury chelation as we proceed. It's way too soon to say with certainty, but it sure looks like this may be the case. After being in a really good place all summer, he's been falling apart the past two days. When metals were first mentioned to me last fall, I scoffed. I never had any reason to think they'd be an issue and it all sounded so "out there". I won't have any perspective for many more weeks, but it seems that mercury may be a puzzle piece for him.