LNN

It is my understanding that you should not give the two during the same period. If you are doing a 30 day steroid taper, no NSAIDs during those 30 days.

My DS had a similar pattern - could not sustain remission for longer than 2 months. Yet he also had direct behavior correlation to strep. Pandas treatment got us only so far. We then tested for/treated for lyme and bartonella and he made additional gains. But again, we hit a brick wall, and just could not break thru the cognitive issues. We finally discovered a condition called pyroulria, which results in a zinc/B6 deficiency. We saw enormous gains after treating that (something he will probably have to treat for life). Mt DS is still susceptible to strep and may still have some lyme issues. Still a work in process. But there are two things that stand out from your post. First, you're seeing a pattern of relapse. So like DCmom, I'd suggest further testing for a chronic infection - mycoplasma fermentans, mycoplasma pneumonia, lyme, bartonella, babesia, chronic virus like epstein barr, ctyomeglavirus... Second, you seem to have a number of medications aimed at congestion and mucus. Chronic infections often create biofilms - a colony of a variety of bacteria and viruses that live together in a slimy mucus city. Antibiotics rarely penetrate the biofilm and the organisms emerge periodically to multiply and colonize new territory. here's a fascinating but very long article http://bacteriality.com/2008/05/26/biofilm/ I can tell you that I've been in that place you are - is this it? Should I accept this and move on with life? Does sh*t happen? We did ultimately find that underlying deficits (pyroluria in my son's case) prevented him from getting rid of the other stuff. There is probably one or more missing pieces for your son as well. This isn't as good as it gets. It just means you have to dig deeper. There are three doctors that come to mind in the general area, depending on your personal inclinations regarding conventional, integrative or alternative medicine. One is in the northern Boston area and one in Hartford (both integrative with lyme as a specialty but they treat other things as well). The third is in southern CT and is the most conventional, specializes primarily in Pandas only (tho tests for lyme) and accepts insurance. If you know what sort of approach you'd like to pursue, we can probably PM you info on the doc most aligned with your leanings.

PowPow's right - it was your written description that caught my eye. I never saw a pic. When I was 100 lbs in HS I was borderline anorexic, even at 5'2". My ribs showed and I was obsessed with my weight. So it raised a flag.

I hope your friends went back and told Greenblatt about Pandas. It would be good to have someone with his perspective also increase his understanding of Pandas/Pans. The nutritional aspects of treatment are key in my experience and I wish there were more docs to add their knowledge in this area. No, not in Mass. I'm in CT.

Thanks "guys". When I did the 2 week trial last fall, I did suspect biofilms and put it on my radar. But since starting tryptophan (and correcting copper), things really improved and I pushed that one lower on the list. Also, her C3d levels had dropped, making me think maybe infection was resolving. Not certain. JAG- last blood test showed copper decreasing and I haven't seen any bi-polarish behaviors in about 6-7 weeks. She's probably due for a blood test next week @ LLMD and we'll re-check but I don't think that's an issue at the moment. If anything, after 6 months of Core, I'm expecting to be told to start a low dose copper supplement. But what was really odd about this week was that her anxiety spiked after only one 600mg dose. I gave my son 1200mg twice before I heard any sounds of the congestion breaking up. So one dose seems too low to effect films, no? It makes me feel more like it's something that would produce an immediate effect - like glutamate or some other direct brain impact. Trg girl - thanks for sharing. Helps to know I'm not the only one. Whenever one of the kids doesn't "follow the script" I pay attention. I'm just having a hard time figuring out what one dose of NAC could change so noticeably. I feel like I know the crime was committed in the library by Miss Scarlett but I don't yet know the weapon.

Ok, geek friends. I have a riddle I need help solving. It involves NAC (N-acetylcysteine). My DD7 suffers from anxiety and GI issues. In searching for a supplement, I briefly used NAC for two weeks last fall and saw her anxiety increase, not decrease as expected. We then used inositol for a few months and that helped for awhile but then we hit January, which is always a rough month for her symptom-wise. So about a month ago, we switched to tryptophan which has been hugely helpful. So far so good. Thus week, mega-cold came to roost in the house and both kids stayed home from school. Wanting to thin out some mucus, I tried NAC again. Within hours, anxiety was sky high. Lasted about a day, minor issues today but seems to be resolving. (still using tryptophan as normal). Does anyone have any idea why DD would have an adverse reaction? Everything I read talks about how great NAC is supposed to be both as an NMDA/glutamate modulator and as a precusor to glutathione. I'm stumped but intrigued. Two years ago, I gave my son Zicam for a cold and had an equally immediate adverse reaction, piano playing, choriform movements when he'd been ok prior (just cold symptoms). Turns out he has pyroluria - a zinc deficiency. Still not sure why the zicam would've produced the reaction, but there was a definite zinc connection. Feeling like the NAC is giving me a clue about my DD but can't figure it out. Thoughts?

I think I may have confused you on another thread. Omega 3s are generally good for everyone, Pandas kids, healthy kids...the only exception I was mentioning was for kids with pryoluria - a genetic zinc/B6 deficiency where your body pees away the zinc/B6 before your body has a chance to use it. Pyroluriacs also have an Omega 6 deficiency. Some of the binding sites for Omega 6s also bind to Omega 3s. So if you have an Omega 6 deficiency and then supplement with Omega 3s, you can make the Omega 6 deficiency worse. So my kids with pyroluria do better by taking only Omega 6 (in the form of primrose oil) and no Omega 3s. Hope this clears things up a little. One thing I noticed is that your DD is very slim for a 17yo! Does she happen to have any eating issues or anxiety involving food? I ask because you may be interested in a book I just read about nutrition and anorexia. It's by Dr James Greenblatt, an integrative psychiatrist and clinical professor at Tufts. He suggests that being deficient in certain nutrients can precede and possibly cause anorexia, OCD and anxiety issues. Rather than the AN coming first and leading to malnutrition. Very interesting reading and he;s in Waltham. Instead of a DAN, he might be a good resource - http://www.comprehensivepsychiatricresources.com/category.php?category_id=71 and http://www.jamesgreenblattmd.com/

If you go to the "helpful threads" at the top of this forum page, you will find several links to articles that explain the different bands and their significance. I can understand your frustration. But knowing that you have a chronic infection to fight can acutally put you on the (long) road toward sustained improvements. I know it's not what you want to have to deal with, but the lyme dx was a blessing in disguise for my son.

mdmom- I really like this idea! I think I'll combine it - give points for every step of fairy fighting. Probably looking at a blood draw next week. Thanks for the new ideas to add to the tool kit.

I agree with DCmom. If you change abx and continue to see herxing, look into lyme (people on the lyme forum can advise you on the best tests to run etc). Light sensitivity, die-off response... could be lyme symptoms. Weekly zith would be a waste of time, IMO. If the symptoms you're seeing are from an ongoing infection, episodic abx will only increase your risk of resistance. FWIW - when my son had tics, it took weeks after clearing an infection to see them diminish. Tics were always the last symptom to leave for him. Ibuprofen did nothing for his tics. But it did help immensely with other Pandas symptoms such as anger, anxiety, impulsiveness and irritability. The old thread from PacificMamma about only lyme and yeast causing herxing has been my personal experience as well. Certain strains of strep can cause scarlet fever as a die-off response but scarlet fever is only a rash. It doesn't result in an increase in behavioral symptoms (aside from the Pandas response from the strep itself). I've not heard of strep die-off producing a true herx response the way it's discussed in the lyme world. Is what you're seeing a "good sign"? I think it's very telling. But I think it suggests you may need to look beyond strep and certainly beyond a z-pack. Also - tics can be a result of toxins not able to clear the body quickly enough. I would go to the lyme forum and search on "detox". Even if you aren't dealing with lyme, detox can be very beneficial.

My DD is very fearful of needles - totally psychs herself out with panic. When she had to have an endoscope, we numbed her arm with Emla cream and gave her a dose of Versed (like valium). Even in a daze, she freaked when they put the IV needle into her arm. But she also managed to do 18 months of weekly allergy shots because her allergies were so debilitating - and she needs blood draws every 4 months to monitor her liver function and various health issues. So we use a lot of CBT (cognitive behavior therapy). We used the book "What to Do When Your Brain Gets Stuck" and "What to Do When You Worry Too Much" as guides. We named her anxiety and called it a fairy. The fairy is a bad thought that wants all of her attention and energy. So we have the Worry Fairy, the Sad for No Reason fairy, the "I'm no Good" fairy...fairies love the color black and hate the colors yellow, white, other happy colors. They try to steal DDs yellow and make her sad so she feels bad and gives them all of her good feelings. But...they are secretly afraid of DD and they don't want DD to know that she's actually stronger than they are. That if she tells them to leave, they have to listen (it's a cosmic law). No one else has power over the fairies except her. So she has to stand up to her fears and fairies and then they have to go away. They can't break the law. They have to listen to her. Some days, this works well and other days it's still a work in process. But the more you do it, the better the kids get at it. They start to learn it's all in their mind and they have control over their thoughts. The Shot fairy is particularly tough, because there's real pain involved. But I have DD give me a magic hug and bury her face in my shirt and I sing her a song to distract her. It's sung to the tune of Jingle Bells - "I'm so brave, I'm so brave, I'm so very brave. The Shot Fairly has a big butt and I'm going to make her lee-eve!" It's not perfect, There's still fear. But it got us thru 18 months of needles. For my DD, I absolutely had to tell her in advance. If I didn't give her time to use her tools and prepare, it was way way worse. Total flight mode. No reasoning with her. And then the trauma on everyone having to restrain her - not to mention how distrustful it would've made DD over time. Using CBT makes her feel empowered and reinforces that she's the boss of her feelings. We try to give her a few minutes to get herself pulled together. Not every time is pleasant. But generally, the more she feels like a participant instead of a victim. I highly recommend the books for some ideas. Oh - and then yes, we did celebrate with ice cream, a new Polly Pocket, being able to stay up late, plus a big sign taped to her door - a certificate of bravery that has hung there for over a year!

As far as long term damage, I have/had the same fears. It's been a long battle here and since it's assaulted his brain so repeatedly for so long, I was starting to wrap my head around the idea that some things could be permanent. But in the 5+ month remission where he got really healthy, I saw a ton of improvement in areas I had given up as lost. I think the key is keeping them healthy long enough - like a year+. So far, that eludes us - the past two months have brought back to back strep/cold/cold. But I know it can come back. I think of it as weight gain rather than permanent brain damage. When you pack on 30 pounds, it feels daunting to think of getting back to your old weight, but with time, it can happen. JMO.

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One day, I got totally frustrated because no single site carried everything I wanted to use. I'm partial to NOW Foods and Source Naturals brands and not every site carried these for the particular supplement I wanted to use. So anal-retentive me made a spreadsheet and shopped three or four different sites for each thing we use - Amazon, Vitamin Shoppe and IHealthtree mostly. I looked at IHerb as well, but being on the east coast, Iherb and Ihealthtree take a long time for shipping from California. VitaminShoppe is close by but didn't carry everything I wanted. So overall, I found that Amazon was best for one stop shopping and price. Generally, I can get free shipping. But your experience may be different if you aren't brand loyal or use less supplements.

If you Wiki CaMKII, and you can wade thru the eye-glazing information, toward the bottom of the page you see a discussion of CaMK and memory. It plays a role in spatial learning and in memory consolidation. I often explain to teachers that it's like the information gets into the brain but then someone tips over the card catalog and DS can't easily find the information again. It takes a lot of hunting and sorting to access what the rest of us can just quickly lay our hands on. This is really evident on speed tests. In January, when DS was really well, he could do a series of multiplication problems in 90 seconds. A month later, he could only do half as many problems in 2 minutes. He also seems to "lose" knowledge, where he could once rattle off 6x8=48, he'll then stare at me with no clue what the answer is and I may just as well be asking him what 17,201x2,390 is. It can take months to fully recover and even then, there's still lost ground to make up and re-learn/re-file whatever material was presented during the bad period. However, we've also see brain fog from lyme issues. The lyme seems to effect language as well as math, where he'll search for words and have "senior moments".

With "perfect" hindsight (ha! like that exists), I "think" my DS always had a zinc/B6 deficiency called pryoluria. This made his immune system unable to fight a lot of infections during toddlerhood. Then at 5, he may have gotten lyme (tick bite on scalp). Then 6 months later, he got strep and it broke the camel's back. So I think you can have "pure" pandas, sometimes maybe "pandas" is just mis-diagnosed lyme (or bartonella) with dominant neurological symptoms and sometimes maybe you have underlying issues that need to be addressed before you can get fully healthy, regardless of the name of the bacteria infecting you. Personally, there are certain red flags that will prompt me to reply to someone on the Pandas forum. These include symptoms like joint pain, muscle pain, cycles of behaviors, rashes, rages that don't seem triggered by OCD, extreme fatigue, fevers without other symptoms of illness (like no sore throat or congestion), fevers that come on suddenly and depart suddenly with no other symptoms, or the big one for me - regressions that aren't linked to obvious illness. When someone says "DS was doing well but then went south but he's not sick - maybe he was exposed to someone who was?" Not that exposure can't trigger Pandas, but it makes me want to suggest it may be a chronic undiagnosed infection and not just that he sat too close to someone with a cold. If you look at Swedo's dozen or so symptoms in her early research - if someone posts about symptoms not on that list, my antennae goes up. Or if the child doesn't respond the way he "should" to a Pandas treatment, that makes me go "hmmm" too. The symptoms overlap quite a bit. And as Michael said, sometimes you can have both. Or neither. Or both plus something else. It's rare that someone who is chronically ill is only going to have one single thing wrong. It becomes a snowball or ball of string and takes time to unravel. If your child is responding well, I wouldn't worry too much about lyme. It becomes something to investigate more when you don't get long remissions between Pandas flairs. I think that's how most of us ended up on this forum. It was that there was something more left to uncover.

We did one HD IVIG with a Pandas dx but prior to a lyme diagnosis. Like S&S, my son had a severe negative response - perhaps a herx. Whatever it was, the whole family decided it wasn't the right treatment for us. However, you will find many families who feel it's been helpful. I think one thing S&S's daughter and my son have in common is that neither are very good at ridding their bodies of toxins. Our kids struggle not only with IVIG but also with certain aggressive abx treatments meant to "take no prisoners". So maybe it's not a question of whether IVIG is good or bad but rather how well does your body clean up the mess?

We've used 4-6 pills at a time. But yes, it needs to be taken away from everything else. Think of it as microscopic sponges that absorb everything. You can get it at any local health food store and probably CVS. Walmart used to carry it but didn't the last time I checked. here's an article that might be helpful http://www.alsearsmd.com/tag/activated-charcoal/ But S&S is right. I can be binding. Lots of liquids, fiber or psyllium husk capsules or magnesium to keep transit times regular. Some people prefer using bentonite clay for the same purpose. You can buy liquid clay from any health food store but how you get someone to drink it is beyond me. You can also get clay capsules which was far easier for us. No magic pill for us either, but does help bind toxins and I'm sure bad times could've been worse without it.

You may want to post this on the lyme forum, where tindamax and flagyl are more commonly used (they are similar - I see tindamax used more for kids). My DS took tindamax on weekends (4 doses fri pm - Sun am) and then 5 days off. It kicked his butt big time. We had severe herxing and eventually had to stop. However, we enjoyed a long stretch of goodness once things calmed down after that. To do it over again, I'd have done only 2 doses on Fri pm/Sat morning for a few weeks. Then if herxing not horrible, I'd have gone up to 4 doses. The way we did it produced such an inflammatory response that backing down half way didn't help. The inflammation was already there. We may have been able to stay on it longer if we'd started slow. Make sure you have a good detox plan in place before starting. More than half of the response is due to die-off toxins and the body's inability to clear junk out of the way quickly. Steady dosing of iburpofen helped as well.

My DD had this as well. Extreme swings, like flash powder - explosions with no warning. Non-stop talking. Oddly "too" happy then wickedly defiant, even when the consequence would be something that would flip her out. Very emotional. It was like watching someone lose their mind right in front of you - and then become completely sane again 30 minutes later - like a light switch. It was always worse in the winter, worse if she were sick. She would respond to abx but not entirely. We found a D3 deficiency and that may have helped. But what also helped was that we found borderline pyroulria (a zinc/B6 deficiency) and high copper.(low zinc often leads to high copper and vice versa). Google "high copper personality" and you'll see our kids described. Copper toxicity can produce bi-polarish mood swings with rapid cycling. We didn't see depression per se but we did see negative self thoughts that not quite OCD - I'm bad, I'm not good at anything, no one loves me...that would last maybe 20 minutes then go away and she'd see them as unrealistic thoughts. We now supplement with D3, zinc/B6 and tryptophan. All her negative behaviors are gone and she's been very stable for several weeks now. We may still have a gut issue to resolve but this was a major breakthrough for us. *if you do find high copper and you supplement with zinc to naturally chelate, or you use a copper chelator like EDTA, there may be a few weeks of "worse before better" as the imbalance corrects itself. Yeast would be another thing to consider.

PowPow - I save all my rotten tomatoes for my voodoo dolls named Roger and Harvey. None for you

double post

Vitamin Shoppe sells a dozen liquid varieties of probiotics http://www.vitaminshoppe.com/search/controller?N=4294967275&No=0&Ntk=SiteSearch&Ntt=probiotic&Ntx=mode+matchallpartial&Nty=1&cm_sp=keywordSearch-_-Form-_-Liquid We used a strawberry flavored one that mixed well in strawberry milk and other - I think the strawberry banana one - that mixed well in Splash juice. No ideas on omegas. My kids would not take them. No way, no how. Turns out that wasn't a bad thing. My kids have a condition called pyroulria, which leaves them zinc and B6 deficient. Those with pyroluria benefit more from taking Omega 6s, not 3s. And since both Omegas compete for the same binding sites, taking Omega 3s can make my kids' Omega 6 deficiency worse. So now take Primrose Oil (Omega 6) in a capsule now that they're older. Agree with WorriedDadnMom - supplementing zinc, B6, magnesium, D3 and a few other things have made a huge difference for my kids. Check for deficiencies and treat those. That alone can sometimes reduce symptoms.

I'm sorry - I know you wanted to know about puberty and long term abx. It's just that to those of us whose kids started on the Pandas trail and ended up having lyme or bartonella or babesia, your list seems way more weighted toward a tick infection than strep. You don't mention OCD at all, which is a symptom shared by most Pandas kids. So I have to beat a dead horse and recommend lyme testing as well - beyond the traditional tests most doctors do. But enough on that - if you want more info, please post on the lyme forum and many of us same moms will share more over there. As for your questions, for a Pandas kid, long term antibiotics is thought to be helpful for two reasons. First, it can protect against a future infection that could trigger a new flair. Second, some antibiotics may be immune-modulating, meaning they can reduce an autoimmune response. So yes, long term antibiotics would be a good thing to consider. Second, I think IVIG has been helpful for many Pandas kids but it isn't viewed as a cure. Doing the procedure is thought to help reduce the severity of an episode and it may strengthen the immune system. But I don't know of any research to show that one or even several IVIGs can cure Pandas. And it is not a risk free procedure. So I would recommend research and a gut check before making that decision. Some feel it's a slam dunk thing to do and others are less certain. As for whether it's less effective after a certain age, I don't know of any research to suggest that's true. Very little research on IVIG and Pandas exists and most of what you hear is anecdotal. I know of no research that has looked at age as a factor of success. As for whether any doctor has experiences to support this notion, I think doctors end up seeing self-fulfilling prophecies. Those who feel xyz procedure will not work for abc patients end up not seeing a lot of abc patients. Those abc patients go to a different doctor who then sees a different skewed picture in his patients. I think you need to base your decision on your own child and your own sense of what has or hasn't worked thus far. As for puberty, I've read a theory that Pandas may become less severe as you mature because your immune system changes as you age. When you're born, your thymus - the organ that makes T-Cells - is about the size of your fist. As you hit puberty, it starts to shrink and atrophy. It continues to make T-Cells thru your life, but is much less active after puberty. So one thought is that a maturing immune system would be less auto-reactive. But as Pandas becomes better known to the public, I think more adult candidates are surfacing and I'm not sure it will always be considered a pediatric disease.

Just my opinion, but given her symptoms, starting out at 1 gram is too much too soon. I would back down on your DDs dose and start with half that for a few days, then work up. Even for your son, you're starting at a somewhat high dose. In the links I listed at the top of the thread, there's an article that discusses dosing and building up over a 6 week period. You can check that one for guidance. As an FYI - since I last posted on this thread, my daughter stopped taking inositol and switched to tryptophan. It is working much better for her. I never noticed any correlation between tics and inositol. What your son's symptoms suggest, to me, is that he may still have some sort of infection. He is on a very low dose of abx and that may not be enough. For my son, his last episode of tics (a year ago) was triggered by an aggressive lyme treatment. His body couldn't get rid of the toxins released by the dying bacteria and that triggered tics. When we changed treatment, his tics stopped. We have worked on a lot of detox. It sounds like there is still stuff that needs to be uncovered for your kids. Are you doing any additional testing?