LNN

As I understand it, there are two issues to be aware of with milk thistle. First, because MT changes the way the liver metabolizes certain medications, you need to check for drug interactions (here's a brief list http://www.umm.edu/altmed/articles/milk-thistle-000266.htm). Second, because MT comes from the ragweed fsmily, you need to be cautious if there's a ragweed allergy. However, my DD, who's allergic to ragweed, andrographis, oregano and resveratrol, along with penicillins and cephalosporins, can take MT without any issues. So go figure. I started taking it with my son about a year ago and felt much better within a week. Lighter somehow. If I stop taking it for more than a few days, I can feel the difference. I also like resveratrol for similar reasons. Seems to help with inflammation issues too.

Totally agree with Nancy. Sometimes PANS kids get to a place where CBT/ERP isn't enough (again, until medical treatment takes things down a few notches) but it always helps the parents because it makes you feel less helpless. And it teaches everyone how to re-frame a problem and break it down into manageable baby steps. It goes beyond the immediate crisis and gives you life-long skills. Doing it over and over with my kids has also helped me manage my own natural anxiety. I find myself better able to talk myself out of a panic and do it without really thinking about it anymore. Note- ER/P is a specific type of CBT used specifically for OCD. General CBT is better for other types of anxiety. despite the pain of refusing to participate in rituals, I urge you not to give in. You can tell your daughter that you can't stop her from giving into her OCD but that you won't let OCD control you too. Giving in will only help the OCD grow stronger and sends her the message that her fears have some sort of legitimacy, that they should be listened to. Very very very hard. But participating won't make it easier to get rid of or calm her down. There will always be another demand right after you comply. It's never enough. OCD is insatiable.

I considered SAMe - it was my first thought, given the methylation issue. But it's 2-3x more expensive than l-tryptophan and as S&S mentioned, these darts on the dart board gets pricey. Our LLMD used to recommend SAMe a fair amount but stopped because he didn't see overwhelming results. So I'm on the fence. I wish they sold "samplers".

When do you give the l-tryptophan and how much?

My DD7 has been using inositol since Oct. Initially, it helped enormously. But then she contracted EBV and we went thru a series of events that spiked her anxiety, including needing to use L-lysine to conquer the EBV. Unfortunately, l-lysine is a seratonin antagonist and it made her more anxious. (we stopped it a few days ago but haven't seen a reduction in anxiety -in fact she had a nightmare 2 nights ago and now won't be left alone). I could increase the inositol (she is only on 2.5 grams) but we're nearing the end of the bottle and I'm considering switching to something else. I've done a little reading on 5-htp but even adults seem to say that a small dose (25mg) can make them wired after a few days. Does anyone have any 5-htp experiences to share, including dosing? Any alternatives that have proven helpful? Our biggest challenge is anxiety, not OCD. She is on abx and we're using NSAIDs and CBT/ERP but we're all growing weary.

I think private insurance means Aetna, Cigna, Tufts etc.

DS (Pandas/lyme)is home sick and reading over my shoulder. He said to tell you there is no such thing as "normal sick" in our kids world. Sounds like you are dosing augmentin 3x/day? We always did twice. Could it be the quantity/frequency of dosing?

Try the OC Foundation's site http://www.ocfoundation.org/treatment_providers.aspx Preferably a therapist who's BTTI trained - that's the IOCDF's 3 day ERP training course.

A, I know you have the strength to beat this. During your recovery, maybe google resveratrol. Have come across it in my lyme research and I keep seeing its anti-cancer connections. You and your surgeons will be in my prayers tomorrow. Laura

We use milk thistle for liver and just starting using resveratrol - pretty impressed so far. Reduced symptoms noticeably. We also rely on NSAIDs for inflammation. Tindamax is rough. If you need a break from the OCD, consider extending the time between tindamax pulses. Instead of every weekend, maybe every other weekend, or instead of 6 doses on a weekend, maybe only do 2 or 4. For the sake of the whole family, there needs to be balance between aggressive treatment and quality of life.

I in no way want to minimize the h**l that is PANS. It is serious and should be treated as promptly as humanly possible. But since some of your posts have a sense of panic in them, I want to also say PANS is completely survivable and many kids come out the other side just fine (the parents...well, most of us end up with PTSD - but the kids fare pretty well if they get proper treatment). When I first started learning about Pandas, I woke my husband at 2am, convinced that my son was the first case of encephaltic lethargy in 80 years. That if he didn't get out of bed right then and help me google, my son would be forever lost to us. This did not come to pass. My son is enormously better. So I do support educating your family because it helps to have people who understand and support you. I do encourage you to get to a Pandas doctor or integrative doctor quickly (most of us don't luck out with pediatricians). You will battle plenty of doctors and teachers. It helps to at least have a spouse or parent who gets it. But...since you say you also struggle with anxiety, you should also remind yourself that there are far worse things - cancer, dire poverty, violence - that can keep PANS in perspective. Don't tie yourself up in knots. You are at the beginning of a long and difficult journey. Pace yourself and try not to panic. You are going to need strength and patience and endurance. It is very very hard. But it is also survivable.

DD was homebound for 2 months due to recent EBV. For her, l-lysine did the trick. Doc said if it was going to help, it would help quickly. W/in 3 days, we saw a big improvement. She's been on it for 2 weeks and is back to old self. L-lysine is a seratonin antagonist, so we are now having issues with high anxiety (not OCD). So we are going to stop the lysine and see where things settle. She will be going back to full day of school after our next 504mtg next week. It seems to have been the right stuff for her.

My DS is 9, 73 lbs. He takes 150mg rifampin in a capsule 2x/day. We get it from Costco. I would call the pharmacy or call a different pharmacy. Perhaps the first pharmacist did a "guy look" quickly and didn't explore enough options. 150 mg capsules are available.

Yes, curious why you say no bactrim. My DD has only one MTHFR mutation - C677 - and did well on bactrim for 6 months. (and this is a kid who's allergic to many abx). Our LLMD said you need to avoid bactrim if you have issues with transsulfuration pathway but DD doesn't have this issue. Not clear to me why bactrim would be related to MTHFR? Or are you saying this applies to those with the other mutation - the one that effects detox/betaine? I'm really glad your son has responded so well! For us, the MTHFR info has been helpful but hasn't been anything close to a golden ticket. Our issues lay elsewhere. And my kids only do well with Omega 6s due to KPU. Omega 3s have a negative effect. It's turning out to be a very individual path for each of them.

There is a lot of controversy surrounding the accuracy of blood tests for lyme. Last fall, a new test came out that can culture the bacteria from a blood sample - much like a strep test - if something grows in the petri dish, you have the bacteria in your body. The test will catch about 80% of lyme cases. It isn't covered by insurance, but it might be worth it to you to be able to know whether to pursue treatment. It's about $500. I don't recall the name of the company but a few members have used it and they will hopefully chime in. The forum gets quieter in the weekend, so it may be a day or two before someone replies. You don't mention any other lyme symptoms. You may want to do some research to see if anything else jumps out of you. My son did have tics and they cropped up when we did a particularly aggressive treatment - the toxins that built up from the dying bacteria caused the tics. But they resolved when we backed down and moved to a different combo of antibiotics. However, he also had a number of other lyme symptoms and suspicious blood work. I'd consider the lyme culture test as the best way to get a quick answer.

My DS used to always get a swollen gland on his left side but only rarely on his right. Some times we could tie it to strep (in which case both sides got swollen) but other times it would only be on the left and it wouldn't be that sore and it didn't necessarily come with a sore throat or full blown illness/cold. Sometimes the lymph nodes on the left side of his groin would also get swollen. Asymmetrical swelling is apparently a symptom of bartonella. It went away about 2 months into lyme treatment. I'm sorry - I know you've started looking into lyme but don't recall where you are in the process. We used zith+bactrim when we first started tackling the bartonella. You could also try motrin or if you think it's a virus and not a bacterial infection that's going around the house, andrographis and l-lysine are things we use to nip things in the bud. Both can be found in your local health food store.

Dr Fallon is a well known lyme researcher. Are you asking if anyone here has seen him?

Just because a doctor doesn't accept insurance doesn't mean you can't get reimbursed by insurance. For example, Dr L and many lyme doctors have a set fee - let's say $100. For that $100, they spend an hour with you. Insurance says "you should be able to see a patient in 30 min, therefore, we will only pay you $50 for seeing our patient" So for these docs who decide to spend more than the "alloted" time, they won't accept whatever payment the insurance co. is willing to pay. However, they will give you an insurance form that you can submit to your insurance co. So you pay the $100 out of pocket at the time of your appt. Then you submit the paperwork to you insurance co. and they say "well, we'll pay $50 for this visit, so we'll send reimburse you $50 and the other $50 comes out of your pocket." So it's not as easy or cheap as seeing a doctor who does accept insurance, but it's not as awful as it initially seems. We wasted a lot of time working with doctors who accepted insurance but didn't help us get closer to finding answers. Sometimes, it's worth the expense to see someone who specializes in an area, even if they don't accept insurance reimbursements.

In the past few months, I've become acquainted with some super moms who have alphabet kids and yet have found a way to also publish a book. It's called Easy To Love But Hard To Raise. The co-editors are making plans to publish two additional books in what they plan to make into a series - one will be Easy To Love But Hard to Teach and the other will be Easy To Love But Hard To Treat. They are seeking authors (unpaid) to contribute essays to either project. Call for submissions is here: http://www.drtpress.com/index.php?option=com_content&view=article&id=52&Itemid=59 So if you're stuck in the house with your homebound OCD child who needs to vent on a laptop or if you're an aspiring writer or a frustrated educator, contact them. The focus of the group is evolving. It'd be good to have a few infectious-triggered war stories considered, so parents could see that the treatment of a child can often be multi-faceted.

Ha! I knew my ears were ringing for a reason! DeeDee, I wish I could just type "test for lyme" and it would be as simple as that. If it were, I wouldn't still be here. So this isn't going to be a black and white answer. I do think it's worth testing for lyme and co-infections. There's always been something about your story that struck me that way. I do tend to have more confidence in Igenex for lyme than other members do, but I realize it's a good chunk of change. If your daughter could be off of abx for a month, I'd look into the new lyme test that actually cultures lyme spirochetes, but 1. it's about $500? and 2., if you're DD is now able to swallow pills, I'm not sure I'd risk letting her slip back to a place where she can't swallow again. But that's something only you can decide. If not the new test, then I'd personally consider Igenex for lyme. But if funds are limited, I'd skip their test for co-infections and put that money toward a visit with an LLMD - they can often use other labs for co-infections (like Specialty Labs/Quest for bartonella) that take insurance. Not bashing Igenex, but $600+ can go toward other things, at least in my limited budget. I don't know that a few weeks of IV abx is enough for myco and/or lyme. That doesn't match what I've heard from others, but it's also not my expertise. Sometimes abx that work for some people don't work for others. Some people have lyme in cyst form or hiding in biofilms and that makes it harder to treat. If both kids have issues with it, you also have to deal with the possibility they're passing it back and forth. As for which doctor to see...we've seen several Pandas docs and they each helped us get to a certain point. We're now solely with an LLMD because in addressing the lyme stuff (along with vitamin/mineral issues, methylation), we're also doing what we'd be doing for Pandas (and then some). Given the event planning and the number of kids who may need treatment, when I faced this crossroad, I went with an LLMD - it just made financial and logistical sense for us. We're fortunate to have someone we really like who's only 30 min away. I'd tell you to see him, but it would be even further than Dr B. I know of one LLMD I'd take my kids to in the DC area and there may be some closer to you. You can go to www.lymenet.org to their "find a doctor" discussion and get referrals from people in your area. If you do the lyme path or integrative path, having someone less than 10 hrs away will be a big help. You're welcome to PM me if you want to talk offline. I'll mention that ALA has at times been good for my kids but it can also chelate mercury, so if a chronic illness has caused the body to not detox metals properly, it can introduce it's own set of issues. I still have some in the cabinet and will probably use it again, but not right now. Omega 3s are generally regarded as a great supplement for inflammation. However, my kids have a zinc/B6 deficiency called pyroluria and that makes Omega 3s not so great for them because pyroluria causes an Omega 6 shortage and Omega 3s and 6s compete for the same binding sites. So adding 3s just makes the Omega 6 deficiency worse. For my kids, Omega 3s makes things worse. We use primrose oil (omega 6) instead. But it's all very individual. NAC made my daughter very drama-queen and high anxiety. NAC is a mucus thinner. Biofilms are mucus-y. So *if* biofilms were an issue for your DD, the NAC could be dissolving the films and releasing more bacteria. Not saying this is at all the case or you should stop it if you think it's helping. My point on all the supplements is that no supplement is "good" or "bad" for everyone. But some are bad and some are good for YOU. So it's really worth seeing (IMO) an integrative doctor who looks at the head-to-toe picture and has a good handle on treating not just infections but also on supporting the body's many needs. Some kids get Pandas, get abx and/or IVIG and make full recoveries. My comments aren't meant for those kids. It's more for the ones who, like my kids, have underlying deficiencies that no tonnage of abx was going to fix. It's taking a much more concerted effort on several fronts...but they are getting better and for us, this path has gotten us the furthest.

Hard to say if the inability to decide what to wear or eat is OCD or "just" anxiety - depends on whether she fears some horrible consequence if she makes the wrong decision (which would be OCD) or if the fear of being "wrong" just causes much discomfort (anxiety). In either case, I would encourage you to read up on ERP and CBT techniques to give her coping skills. "What to Do When You worry Too Much", "What To Do When Your Brain Gets Stuck" - both good for kids. "Freeing your child from OCD" and "Freeing Your child from anxiety" by Tamar Chamsky - both good for parents. What dose of Prozac is your DD on? In some cases, kids with infection-triggered OCD need to be on lower than normal doses of SSRIs. Too high a dose can actually cause the symptoms you're trying to treat. A herx can also make things worse. So be sure to help the body detox the toxins being released from the dying bacteria. This can make a big difference in how they feel. Using an anti-inflammatory can also help. I know it can be maddening and in some cases, SSRIs are needed to get thru the day. But I'd encourage you to look at other options before turning to a psychiatrist. A second drug or an increase in prozac could end up complicating things.

My son is a Pandas/lyme kid. We did two month-long steroid tapers in the 2 yrs before he was dx'd with lyme and he had an amazing response. The inflammation/pain from his disease was so great at times that the benefits of prednisone outweighed the negatives (that it suppresses the immune system and gives lyme an advantage). Would I do it again, now that I know about the lyme? It would depend on how severe he was and whether we could control the inflammation in other ways. I don't think it's a black and white answer. It's a matter of degree, where natural anti-inflammatories (curcumin, tumeric, omega's) are on the most benign end of the scale, followed by NSAIDs (motrin/aleve), and somewhere past mid-point, toward more serious meds, there's prednisone. IMO, steroids will not give you a lasting relief if you have a chronic infection that's just going to re-fuel the inflammation once you stop the steroids. That's what happened with my son. Prednisone was awesome - but he'd relapse within a month of stopping. However, the times when we did use the prednisone were fairly severe and it did bring things down several notches and gave him quality of life. It just wasn't a permanent answer. A few weeks ago, my son, who was enjoying his longest remission ever (5 months), started to ramp up again. This week, things were pretty bad and yesterday that bottle of prednisolone in the fridge was calling me. I was starting to rehearse my plea to the LLMD (whom we see next week) to get his blessing to do a 5 day burst just to get the horse back in the barn, despite the negatives of giving prednisone to a lyme patient. But since I won't give it without the LLMDs approval and we have 5 days until our appt, I doubled the aleve dose and started resveratrol - an anti-oxidant. Today is a little better. So I'll spend the weekend assaulting his gut with NSAIDs and seeing how much we can accomplish that way. But if push comes to shove and a month from now, he's still unable to tell me what 10 times zero is, then I may have a different feeling.

Agree with EAmom - a failure to respond in a very short time (4 days of abx is nothing for some infections) on one single abx isn't that telling or uncommon. Different abx tackle different infections. If you don't use the right abx, it won't make a dent. But before you try abx, one thing you may want to consider is doing a lyme test. Lyme tests are notoriously unreliable and controversial. But last Fall, a new lyme test came out that can culture lyme bacteria and take a picture of the bacteria in your blood. It removes the debate that surrounds the other tests. Can't argue with a picture of a lyme spirochette. But you need to be off antibiotics for 4 weeks before doing the test. You can go to the lyme forum for more info if you're interested.

There is much debate on this forum about the sudden onset issue. It is still used for research criteria because researchers need a way to select Pandas kids and not get traditional OCD/TS kids in their research studies. It is also much easier for a clinician trying to make a diagnosis to see the difference between a kid who has always had issues vs. one who was neurotypical and then one day wasn't. But some on the forum feel that the initial "sudden" event happened so early in life or at a time when they weren't aware of Pandas that they missed that first "sudden" thing and they've learned to live with a new normal. In and of itself, if that were the only symptom that didn't fit the criteria, I would continue to pursue. As for OCD and/or tics - again, my understanding is that at least one or the other needs to be present for diagnosis. OCD can manifest in many ways and it can be disguised/hidden by the sufferer. But IMO, yes, OCD or tics needs to be present for Pandas. PANS may end up using different criteria. Based on your original post, I agree with others who see outlier symptoms that shouldn't (IMO) be rolled into Pandas - the muscle/joint pain, the connective tissue issue, the chronic fatigue. These things are often present in tick-borne illnesses but are not in the Pandas criteria. I would absolutely pursue PANS. When a child winds up with as many alphabet labels as your son and no doctor has looked for infection, it could hold a huge potential. But since your son is "complicated" and he's been sick for so long, it's possible he now has more than one issue to tackle. It may not be a matter of one antibiotic or one infection. You could remove that layer and then find out there's something else to treat. Like peeling an onion. Once you're sick for a long time, the body builds up toxins and becomes a nice home for viruses, infections, mineral deficiencies, etc. I would absolutely look for a doctor who is willing to treat infection-triggered issues, like a Pandas doctor or an LLMD (lyme literate doctor) or DAN (defeat autism now) or an integrative doctor who uses both traditional medications and natural supplements. I think there's reason to be hopeful, now that you're on this trail. It just may take awhile.

I think you mean Stephanie on the Pandas board. She is using homeopathy for her Pandas/ASD sons. But she hasn't been on the forum lately, as far as I can tell. You may want to find an old post of hers, click on her name and send her a private message. She may have set up PMs to go to her regular email account. Good luck!