LNN

I would consider an alternative to TUMS - which contains calcium carbonate and can interfere with the absorption of certain antibiotics. Many parents here use Pepcid or Prevacid for GERD. In addition to striving for a 2 hour gap between antibiotics and probiotics, try to take the probiotics away from food. Stomach acids are literally murder on the probiotics and only a small percentage will survive the stomach and make it into the digestive tract. Taking with food only increases the amount of stomach acid. So we take evening antibiotics at dinnertime and probiotics at bedtime, when the stomach is going to be calm for a long period of time.

There were two strategies I used when my son was a patient. First, I called at least twice a week to keep the issue on the front burner. I tried not to take it personally and I don't believe it's a staff issue, so I always made sure I was courteous and respectful. Second, I found that a very, very short email was often a good way to communicate. Like two sentences max. Emails are often read on her phone, so it has to be something that's going to just be a tickler, fitting on one screen, not a saga. I tend to think of her approach as triage. When my son was in crisis and I needed her right away, she always got back to me within 24-48 hrs, usually calling me in the evening. When it was a more general question, it took a week or two of followup with both calls and an email. Not defending or condemning. This is just how it is and you have to either navigate or work with a different doctor. It isn't personal. One idea is to have your doctor fax a request and then you can follow up with semi-regular calls and one brief email that's "FYI - my doctor faxed a request, hope you can respond this week." sort of thing.

Some eczema conditions are viral. Meats typically are high in arginine - an essential amino acid. Some viruses thrive on arginine. So if your DDs eczema is induced by a virus, cutting out foods that are high in arginine could starve the virus into remission or complete eradication. Likewise, adding lysine could also help (if you didn't want to eliminate meats from the diet). Arginine and Lysine are ying-yang. Too much of one can cause too little of the other. So adding lysine would reduce arginine as well as act as an anti-viral. It may or may not be an immune issue. But there's at least one other possibility rather than an immune response.

l-lysine is an OTC amino acid supplement that's a great anti-viral for some viruses. Knocked out my DDs EBV in short order after months of other things not working. You might try googling it with the various viruses on your radar to see if it might be a good fit. For the current sores, baking soda gets rid of them in ususally w/in 2 days in my house. Wet your finger, dip it into the baking soda and press it against the sore. Let it dissolve. Kids like the taste.

I could never get my son to take it and I can't say I blame him. I ended up throwing it away. Other coconut products may help. When my DD was fighting EBV last winter, l-lysine did the trick for her. It worked great. But it depends on the virus you may be fighting. It doesn't work for everything.

You can go to the iocdf under their find a therapist tab http://ocfoundation.org/treatment_providers.aspx and look for a therapist who's completed BTTI training - that's the IOCDF's ERP training institute. But even then, I'd call and interview each therapist, asking how much experience they have working with your age group, maybe give them a scenario and ask how they'd approach the problem, ask how long they feel it should take to see progress (my understanding is your answer should be in terms of 4-8 weeks, not months or indefinite). Ask about their approach to homework (there should definitely be some). Listen for terms like fear thermometer, talking back, exposures...

Today I found the water bottle I've been looking for since I started this thread 6 months ago. In Joanne's Fabrics of all places! (guess it's a good thing DD7 has decided to give Halloween costumes one more year). It's also on Amazon http://www.amazon.com/Copco-16-9-Ounce-Hydra-Bottle-Green/dp/B0088196OY It looks and feels just like a regular water bottle - something my son is so fond of that he won't use other types. He just likes the feel and ergonomics of drinking from a bottle instead of a straw. This one is BPA-free, sturdy and you can unscrew it in the middle, so you can add ice cubes etc. It also makes it much easier to clean. Multiple colors means the kids can tells which one is theirs. Wanted to pass it along...

I think if you can get a "normal" baseline assessment, it may be a positive in the sense that in this winter, if you hit a flare, you can point back to this time and say "see, this is the "before" picture of my daughter and what you see in your exam room is the "after". But I totally get your apprehension. I don't have any great suggestions, since I'm not familiar with Canadian health care. But the one thing about your post that caught my eye was your mentioning you've lost a lot of pregnancies. If you haven't been tested yet, you may want to ask your doctor to test you for 2 mutations of your MTHFR gene - C677T and A1298T. There's a possibility that a mutation on this gene can lead to miscarriage. In addition, it can effect seratonin levels. If you can't get the test, as a precaution, you may want to take methylfolate instead of regular folate/folic acid during your pregnancy. This site has some helpful information http://www.mthfr.net My DD has one mutation on this gene and treating her with a very small dose of methylfolate has reversed some hard to predict mood issues. For some, methylation issues have contributed to some of the OCD, anxiety or rages our kids experience. It may be something to put on your radar for both you and your daughter. Good luck with the appt!

I agree that this sounds like PANS. And I'm so glad she's responding to antibiotics. I just want to remind you to keep Lyme disease on your radar (which also falls into the PANS category). Pandas and lyme can share a LOT of symptoms in our kids. If you get to a point where you need to see a doctor who is willing to explore both, you may want to contact ILADS - an international lyme association - for a doctor referral in the UK. http://www.ilads.org Never doubt your intuition. Most often, the parent "knows" long before the doctor.

I think a few on the lyme forum may have used this. We used it for a month early on but I couldn't say whether it helped or not. Given the expense of other things we were budgeting for, we didn't continue. I was uncomfortable with the bovine aspect as well.

If you get the dead virus (the shot), I don't think she'd be at risk. However, the shots use thimerosal as a preservative. So I won't get one for that reason alone.

There's no way to predict how your child will heal and if there will be other things you uncover as you go. Just prepare yourself for a marathon rather than a sprint. Some of my son's issues resolved w/in 6 months of treating lyme. Others persist or see-saw. I think for me there are two major differences being in the lyme world compared to Pandas. First, the fear is gone. In Pandas, you live in constant fear that a wayward germ will tumble the house of cars and make your kid go nuts. In lyme, the chronic infection is always there - with good periods and bad. But I stopped living in panic mode. It became more like a siege mentality - we were in the trenches for the long haul. The second difference is that as my son has progressed, the mental issues are shorter lived and the symptoms have taken on more of a physical aspect. Muscles hurt more, headaches are more common. But when OCD comes, it stays for less time. When hyperactivity comes, it's a 4, not an 8. When strep comes, we get a Pandas flare, but in the 2 range, not the 10 range. So it's been an evolution. In lyme world, we learned more about a holistic approach to health - how to help the body handle a herx, looking at nutritional deficiencies that can set the body up for a harder time fighting infection, detox to help shed the garbage, looking at metals, viruses, mold, genetic issues - all these things can come into play once you've lived with a chronic infection and/or autoimmune problem. So it is more of the same roller coaster, but with a more comprehensive list of things to explore (aka money suck) but in the end, I think you end up with a healthier body. As to knowing when she's healing - you'll know. It won't be a straight path. There will be set backs. But you'll know. Most everyone I know thinks the world of Dr J. The one thing you may need to do without his guidance is look at detox, as I don't think he focuses on this much.

The International OCD Foundation will be sponsoring a number of events to raise awareness - from a silent auction and film screenings to a week of twitter chats and a Paint4Peace event at the zoo. They also ask supporters to donate their Facebook status for the week by posting "OCD Awareness Week, I donate my status in support of anyone who has ever battled this disorder. May they find treatment, comfort and hope. Together we can end the stigma around mental illness. Please copy and paste this as your status to promote the International OCD Foundation’s OCD Awareness Week efforts www.iocdf.org" For more information, go to http://www.ocfoundation.org/awarenessweek/

Asymmetric swollen glands is one symptom of bartonella. My son always had this symptom. Always his left side. Swollen lymph node in his groin, left side too. I think I've sent you the name of my LLMD before, don't want to harass you about it. PM me if you want it. My DD had EBV this past winter. If you think it could be viral, l-lysine helped her tremendously. Garlic pills can also help ward off yeast issues. Just make sure you get odorless.

Ok, I may not be popular with this reply but... Forget about the credentials and experience of this doctor. I respect him and am grateful for all the support he gives families. I really am. But if your child weren't sick and your friend came to you and said "I just had a phone consult with a doctor who's never examined my child and he's given us a diagnosis and recommended an expensive treatment and feels we'll only need to do this once." what would your reaction be? It's quite possible that everything this doctor has said it correct. But warning bells go off when any doctor gives these sort of assurances with such little information. My concern with this particular doctor (who, again, I respect), is that he's been reluctant to look at a wider range of issues that impact our kids. He specializes in one condition and has had very good results with one particular treatment. But doctors and patients tend to be self-selecting. The reason a doctor can say XX% of my patients get well with my protocol" could be because those patients who don't respond to that protocol leave and go elsewhere. So the doctor's experiences are a skewed perspective. I say this not just about this doctor but about most doctors who settle on a set protocol. You stay with a doctor if his/her protocol works for you. You leave if it doesn't. Now, this doesn't mean I'm suggesting you not see this doctor or don't do IVIG. I realize how difficult it is to find a doctor willing to help. It could be that you see excellent results. My only reason for posting the devil's advocate view is that my first Pandas doctor used the word "cure" when we were looking at plasmapheresis. It wasn't. And that word carried a lot of pain because there is no single "cure" in my opinion. There is a long road of helping the body deal and heal. So I just don't want you to get your hopes up or feel there is only one path or only one right answer. It will be a journey - a bumpy one, regardless of the treatment or doctor you chose. Best of luck with your decision.

I can't tell you what to do but do sympathize with your plight. My kids are looking at vision therapy at $125/week - each. And insurance may only cover 60% and even then, only until the end of the yr when our deductible re-sets. Cost is a factor. There's only so much money to go around. But here's my bigger issue with the IV glutathione - for your child (not in general). If she's homozygous MTHFR, she's only methylating at @ 10% efficiency. The glutahione is probably helping to compensate for this. But once you stop the treatment, have you put anything in place to help her body produce its own glutathione? In other words, are you treating the MTHFR issue with methylfolate and methylB12 supplements? This would be much cheaper and in the long, getting closer to the root cause of the low glutathione. You also need to make sure she's getting enough B6 (in P-5-P form) as this is an essential co-factor for changing homocysteine into cysteine into glutathione. You also need to look at how she's using sulfur, as this plays a role in detox. So long way of suggesting that IV glutathione might be a helpful treatment but in and of itself, probably isn't fixing the problem. Given the cost, I'd be looking at root causes so her body can start to make more of its own glutathione. Has you talked to your LLMD about what other options are available? About treating methylation and transsulfuration issues?

TPotter hit many of the issues I'd also recommend looking at. And I agree with her - given your lack of success with prednisone and IVIG, I'm not sure these other doctors will be able to offer much beyond what you have locally. Not putting them down. Just looking at it from a cost/benefit analysis. Like others have said, I think it's time to consider other sources of infection and nutritional issues. In addition to testing for a MTHFR genetic mutation, there's another gene HLA-DR, that has big implications for how well your body detoxes. You might also give some serious investigation into mold. Mold can cause serious allergic as well as neurological issues. I had mold growing inside my washing machine and it was making me itch all. It also gave me a chronic dry cough and tickle in my throat. For more information on mold, go to www.survivingmold.com. On the site, there's a list of blood tests you can do to see if inflammation markers are high and if things point to mold as a possible trigger. Have you tried antihistamines? Quercetin is a natural antihistamine that blocks not only the histamine receptors but also calms the mast cells that are releasing histamine. So that's something else to look into (tho I've just learned that about 15% of people with african or Mediterranean backgrounds may have trouble with quercetin so if this is your child's heritage, it's something to be aware of). If you like this doctor, I'd stick with her. Or you can look for an integrative doctor, an osteopath or a DAN (defeat autism now) doctor who look at a variety of triggers.

Pyroluria can't be detected in a blood test. In pyroluria, your body produces an excess of pyroles as it's manufacturing red blood cells. These pyroles like to bind to zinc and B6 while it's in your bloodstream, before the zinc and B6 get absorbed into cells. Because pyroles are a waste byproduct, your body excretes them in your urine - along with the zinc and B6. So a blood test could show a normal amount of zinc and B6. What it doesn't show is that that same zinc and B6 is unavailable to your cells because it has pyroles bound to it. Your blood levels of zinc and B6 could be "normal" but bio-unavailable to do their work within a cell. The urine test looks for the amount of pyroles in it (it shows as a mauve color under testing conditions). If you have more than a normal amount of pyroles in your urine, you have pyroluria and it's assumed that you're excreting a more than normal amount of zinc and B6. So the test isn't measuring zinc or B6 - it's measuring pyroles. People with pyroluria also tend to be deficient in Omega 6s, so evening primrose (a non-inflammatory Omega 6) is recommended as a supplement in addition to zinc and B6. Treating the condition is best done under the supervision of an integrative doctor, osteopath, DAN, LLMD or naturopath. It can start with supplementing a small amount of the deficient elements. But as you get into the process, systems that have been running at inefficient levels (like your detox and immune systems) may start to kick-start. This can cause new symptoms to emerge - a herx-like response where things can get worse before they get better. To handle this, it's best to have someone with experience help you along. But that isn't always easy to find.

Wow - thank you for this overview! Yes, I'd love to hear more about eye hygiene - haven't come across that term yet. As for the possible Pandas, I think it's certainly possible. Since you also have lyme in the family, you should consider that as a trigger as well (not with a western blot from a regular lab - but that's an entirely different conversation). My son has both Pandas and lyme and they look very similar. The other thing I've found that also overlaps with Pandas/neuropsych behaviors is methylation. This is a type of "metabolism" that occurs in everyone. My daughter has a genetic issue that makes her look very Pandas/bipolar. Treating the methylation issue has made a world of difference. So I think you can absolutely be dealing with a medical cause of your son's symptoms, even if there isn't a direct strep link. And plenty of parents will tell you they never saw "sudden onset" even with classic Pandas histories. As I introduced this thread - I sometimes feel like Queen of onion peeling. Don't want to derail this thread, so PM me if you want to discuss further or perhaps start a new thread to get lots of input on your son's situation.

D- in my case, the doctor doesn't take insurance (shocking, I know). So we submit the claim ourselves. She will be considered an out-of-network provider and we should be reimbursed 60% because of that. The glasses themselves I think will need to go through our vision coverage (separate insurance) and I'm hoping will be at least partly covered by that. I'm pretty sure both kids will end up with the prism lenses and we'll probably give VT a trial. From reading up, and knowing DD7 was dx'd with lazy eye at age 4(and NOT treated by the lame eye dr we were referred to - GRRR), it sounds like her brain may have stopped relying on one eye for info and she may need a patch for a few hours a day - oh, that'll go over big! Some docs seem to rely on just glasses, others do both at the same time. The doc we're seeing does a 1 hr initial exam and if she sees stuff, you go back for a 2hr eval to zero in on specific issues and specific therapies that might help. So we probably won't be doing any actual VT for a few weeks. But I'll let you know how it goes. On a positive note, DS has had 24 hrs to get used to the idea and is calming down about it. DH had the great idea to say DS could wear them at home for a week to get used to them before having to wear them to school. DS was relieved by that idea. As for no stone unturned, man, some days I feel like I look too hard! My curiosity far exceeds my bank account.

double post

Kara - Thank you for this link! DH has been giving me the eye roll over this. He thinks I can't leave things alone. That I'm looking for trouble and some sort of magic fix. He about dies when I mention the costs, so I've stopped telling him. He's biting his tongue about my taking Kid #2 for an exam next week. But when I opened your link and asked DS if any of these eye problems happened to him, he mumbled yeah, sometimes (still deeply upset over the glasses, so he's trying to downplay that anything's a problem). So nosey sister peaks over at the screen and chimes in - "oh yeah, those bouncy words happen to me all the time!". That clinched it for me and removed all doubt that she needs an evaluation. It also really helped me understand what the kids are struggling with. Jill - I actually appreciate your skepticism. You're my counter-weight (along with eye rolling DH). It's so easy to get sucked into the promise of things that might help. So it's good to have a wet blanket friend You're keeping my expectations realistic and reminding me to be an educated consumer who spends money judicially. I'm generally a real cheapskate but when it comes to the kids' health, I throw that out that window. So I need that small voice reminding me to be measured. That said, it seems there are three general issues that get lumped under convergence insufficiency - eye teaming, tracking and focusing. My gut suspicion is that the vision therapy probably doesn't help all three issues equally. Yet the research and clinical diagnoses don't always distinguish between these sub-issues. So an anti-therapy camp probably says "it doesn't work better than placebo" and that's probably like Singer saying Pandas doesn't exist, because he didn't look at the right sub-group of kids in his study. Yet the pro-vision therapy camp is probably including more kids than they should as well. So I'm guessing that the therapy might help some of my kids' issues, the glasses may help but not eliminate some issues, and it will be a bit of an expensive crap shoot because medicine hasn't advanced to the point where anyone can tell if it will work ahead of time. It's probably the best thing since sliced bread for some and a waste for others. My gut tells me it will probably help DD most because she doesn't have a chronic issue with PANS - she enjoys longer remissions, her brain isn't constantly in a state of seige. I suspect that DS has some basal ganglia issues that make his convergence issues better or worse depending on how his lyme is acting. In his case, maybe therapy will be less effective because it's trying to fix something that's just too inflamed at the moment. Just like ERP isn't that effective when you're in the peak of a flare. But it doesn't mean it doesn't work ever. So, we'll pursue it and see. I'll just be willing to throw less money at therapy for DS than for DD and more willing to stop or postpone therapy for him until he's back in a good place. But still hopeful the glasses will help (and unfortunately won't know that until the money is already spent). Thanks for everyone's help on this. You guys rock!

I'm sorry you're in this spot. We too are back on the roller coaster with DS, but the only difference is that I expected it. He stopped abx over the summer because he'd been symptom free for lyme for awhile and conventional protocol is to then stop abx and see what happens. As expected, he tanked because lyme that had been in films/cysts came out. So now we're back to knocking it down. The way I've stopped myself from sliding into despair is that I see my son as a renovation. I think when he was little, he had an immune risk because he was zinc/B6 deficient (genetic - pyroluria). When he got sick, his immune system would misbehave a little. And a little worse each time. Then he contracted lyme that went undiagnosed. Then he got strep and it was the tipping point, crashing his system and letting the misbehaving immune system riot in the streets. From there, we've had to work backwards. First we had to discipline the immune system, which any parent knows, doesn't happen overnight. It's a long series of corrective actions. As we've done this, we've uncovered foundational issues - like the pyroluria and yesterday, an eye coordination problem. Talk about a money-suck and emotional energy suck. The poor kid feels like he's never going to get well. "Why me" has moved into the house big time this week. But each layer that gets fixed makes it easier to find the remaining problems and fix them. So back to the renovation analogy, it's like you walk into the basement and find a foot of water. Everything is ruined. So you have to drain the water, then remove the debris and ruined storage boxes, then you have to fix the most obvious leak. Then you wait until the next storm and then discover there's another leak that you didn't see the first time. But each time, the leaks are smaller, because you already addressed the bigger, more obvious leaks. And you're on alert, so you check the basement sooner and less water accumulates. This is a long haul. And each kid's root issues can be different. So it takes a long time. But finding the smaller leaks isn't a set back. It's actually another step forward, because it gives you the chance to make your repairs that much more complete. Probably sounds more rosey than you're in the mood for, but that's how I'm keeping myself going these days.

The What to Do books Smarty mentions are "What to Do When Your Brain gets Stuck" and "What to Do When You Worry too Much" by Dawn Heubner. Great books! They don't discuss disease but like other have said, they set up an imaginary opponent you need to fight and it discusses strategies that a child can relate to. They also give you an introduction to ERP (exposure/ritual prevention) therapy. If you're not familiar with it, definitely pursue this. ERP, IMHO, is an important piece of treatment. When kids are in the height of a flare, it's only mildly helpful. But the tools are valuable for all of life's challenges and will serve you well.

I know zith works on strep and it works for many kids. It works for my DD (who's allergic to penicillins and cephalosporins). It hasn't protected my DS. He's on it for lyme (along with other abx that we rotate). But he's flared from strep while on it. I now have a stash of augmentin (with dr permission) to use if/when he seems to be flaring from something other than a lyme herx. I don't know how your drs will feel, but you may want to ask about a temporary combo abx approach and use both zith+an extracellular that works well for strep. Zith alone doesn't always do the trick, particularly if the infection is in the sinuses where the mucus (acting as a biofilm) makes it harder for the abx to reach. Ceftin (which is very expensive), omnicef and augmentin have worked better for us in those situations.