LNN

Another option is to write the letter you want your doctor to sign. Write it up so it's tailored to your situation, all factual, unemotional. Then ask the doctor to put it on his/her letterhead and sign it. The doctor may want to change a few things, but you're at least doing 95% of the work and it gives you a chance to make sure it includes the things you consider important. In the end, the letter is still from the doctor, but you don't have to wait for it or be a nag. It worked for us and at least one other mom I know.

I think no matter what others tell you, you won't know how your own child will react unless you try it. My general impression from what everyone describes is that prednisone helps more with OCD than tics. But since it puts an overall damper on the whole inflammation process, it may help bring a sense of improvement in multiple areas. It did reduce tics for my DS (but did not eliminate them). I can understand your concern and there is a risk that if there's an active/chronic infection from some bacteria (strep/myco/lyme etc), the prednisone won't give you long lasting improvements. But if "just" Pandas and no current infection, it might and I think it's worth a try. You always have the option of stopping before the end if you don't like what you're seeing (so long as you taper down with a doctor's advice and don't just stop cold turkey). Best of luck with your decision.

http://www.ocfoundation.info/treatment-providers-list.php If you go to the OC Foundation, you'll find a list of therapists. Ones who have BTTI after their names have attended the OC Foundation's Behavioral Therapy Training Institute, which teaches ERP tools. It doesn't guarantee a perfect fit, but it does indicate that these therapists have actually trained in ERP techniques, not just say they have.

Just a guess - could EOS-A be eosinophils? High number would indicate inflammation of the esophagus...just speculating.

I agree with Wendy that your best bet is to review this with an LLMD. Another mom in Maine has had trouble finding someone local and is headed to CT next week for an LLMD appt. but you can check www.ilads.org (go to the contact us tab and send them an email asking for a referral). Our personal experience- DS had an overall negative Igenex report b/c he didn't have enough positive bands. But the ones he had were lyme-specific. After 2 years of incomplete recovery using Pandas protocols (incl. pex and IVIG), we've seen huge, huge improvements with lyme protocol. The change happened when we added bactrim to the augmentin and zith combo. I used to blame exposure for setbacks too. Now that he's being treated for lyme, he no longer has setbacks when people around him are sick. Obviously none of us are doctors, but I think if you're still struggling after 4 ivig's, it's worth investigating. If you find you have to travel to southern new england, PM me for some doctor info (I'm in northern CT).

I am by no means experienced in this, but it seems like a lot of charcoal. Giving charcoal so frequently, so close to other meds - is it possible you are absorbing the meds before they have full effect? I'm curious why you're giving it so many times throughout the day. My son's doctor prefers other detox agents (e.g. glutathione or alpha lipoic acid) but when I asked about charcoal, he said it'd be ok to use on bad days, but to only give one pill, two max, once per day and as far away from other meds as possible. Maybe others have info on this, and I could be wrong, but that's what stood out most. Just something to check on. Hate to see you canceling out the benefits of the others meds.

Nancy said it all so well. In the midst of an episode, doing even one small ERP step may be an enormous undertaking - and should be wildly celebrated if a child even attempts to stand up to OCD, regardless of their success. But I think it's really important that you as the parent convey an expectation that just because something is really hard doesn't mean you don't even try. And I think it's key that you refuse to participate in rituals as much as possible. You cannot force anyone to do ERP. They must make the choice themselves. But you can make a choice whether to be an actor in someone else's play. I totally get how stressful it can be to say No. But when you participate, you send a message that the OCD thought has legitimate power. That it's somehow "real" and should be obeyed. The only way to rob OCD of its power is to not give in to it and you as the parent have to set the example. In the book "What to Do When You Worry Too Much" it describes worries as tomato plants. Water them and pay attention to them and nurture them and they grow strong. Ignore them and they wither and die. So I think even in the worst of times, you need to do as Smarty suggests - even just one small ERP step a day, celebrated and rewarded, is so important. And if your child can't take that step, then at least you can by not playing a role. Maybe on day one, you can't refuse all participation. Maybe you just refuse to comply with one compulsion one time. Then tomorrow you make it twice. Maybe you give your child ten pennies and say "If you want me to participate, you have to pay me a penny. You decide which compulsions you need me to comply with. But when you're out of pennies, I'm done for the day." By doing this, you'll at least be doing step 1 of ERP - which is catching OCD in the act and naming it for what it is. Then in a few days or a week, you only give 9 pennies, etc. I agree you still have to work on the medical part, getting rid of the cause of an autoimmune/infection triggered OCD episode. But in the meantime, like Nancy said, you don't want to be entrenching habits and giving those OCD thoughts legitimacy. Baby steps...but steps nevertheless.

I would think it would be easy to get - you could even ask your pharmacist. It's one of those things that I think can be used for poisoning when it isn't safe to induce vomitting. But if you can't find it locally, you can probably order it online. I wouldn't think it would be a cross-border issue or safety concern. I really hope it helps! Wouldn't "Relief from pain" be an awesome christmas gift for you and your son!

I don't know as much about yeast as some members. So it's only my guess, but I think the yeast would have to be killed off before the charcoal would have any effect. I don't think it's effective in actually killing the yeast by itself. The charcoal would be effective at mopping up as the toxins (from yeast and other bacteria). But charcoal will also absorb nutrients, antibiotics, supplements...so timing is important. It also absorbs moisture, thus take care to avoid constipation by drinking and not taking too much charcoal. Mentally, I think of it as swallowing micro sponges. My daughter may be having yeast issues (test results due this week) and our doctor had her take Theralac TruFlora - which is a probiotic that supposedly kills yeast. It's not a probiotic you're supposed to take every day. She took 1/2 a capsule for one week, then a full capsule for one week and now will take one capsule twice a week prophylactically (to take a 1/2 capsule, you empty half the contents then put the capsule back together). It seems to have helped and for a few days we had some ramp up in emotional issues - a charcoal taken mid-day seemed to help. If your dd won't swallow a capsule, you can open the capsule and sprinkle the TruFlora into a food. Probiotics might be a little less effective when taken with food, since the stomach churns up more acid with food and that can kill more of the probiotics before they make it into the gut. So I'd probably suggest taking with a light snack or maybe a smoothie/drink yogurt rather than a full meal. As for the swallowing pill issue - I'm not sure if there's a good way to get charcoal ingested outside a capsule. No expert on this, but I think of charcoal as a sponge and this makes me think if you mixed it with something, it would absorb the moisture in the food before it ever hit the gut. But I could be wrong. An alternative is bentonite clay, which is a liquid and can be mixed with things. But it may change the texture of things and I don't know if it has a taste. Pills for the younger crowd has been a topic many times. Two things helped my kids. First, we practiced swallowing tic tacs, or in some cases, one Motrin (if your child is old enough for a 200mg dose). No biggie if these get spit out into the sink (unlike precious antibiotics). The second thing that helped was both of my kids take a sip of water first, and then put the pill in their mouths and swallow. This is the reverse of how most adults take a pill. But adding the pill after the water seems to keep the pill from dissolving on the tongue and tasting bitter.

One simple experiment you can try is to give activated charcoal for a few days. If it's some sort of herxheimer reaction where a bacteria is being killed off and releasing toxins, the charcoal will absorb some of the toxin and might give you some relief. In the US, you can get charcoal over-the-counter at any health food store without a prescription. The charcoal is like a sponge and will absorb things indescriminately. So I'd start with only one pill a day, taken as far away from your antibiotic schedule as possible. You don't want it to absorb the abx. So maybe one capsule at lunchtime? Also only start with one. Charcoal can be binding and too much can cause constipation. So increasing liquids would be a good idea just to ward off any problems. It may not help. It won't tell you which bacteria you're fighting. But it would be a quick "test". An improvement in say, 3-5 days, would indicate that your new antibiotics were actually doing their job and the behavior you're seeing is "just" a herx reaction. There are other supplements that are recommended to help the body "detox", but the charcoal would be an inexpensive way to test the herx theory. The good news is that you've seen the boy who's really inside and others have too. Hold on to that and know in your heart that you can get that boy back.

Same here. If my son wasn't having an issue with hand washing, a discussion about kids needing to wash obsessively struck him as silly, even tho the need to tap things four times made perfect sense to him at the time. My son at age 6 and 7 loved "Brain Stuck". My daughter, almost 6, finds it harder to follow. So we've done a lot of "editorializing" to make it more applicable to her issues. I also recommend "Tiger Tiger, Is It True?" for the younger crowd. It's not about OCD specifically. It deals with being the boss of your own thoughts and using "fact checking" to banish sad thoughts that aren't really true. Requires more work for the adult to bring the concepts home, but it only presented one concept instead of the entire ERP strategy and was better for her age group. As the others have said, ERP is about exposure. You want to build up, doing small steps to build confidence. If you go too fast, the fear can be overwhelming and backfire. For clothing, my daughter had huge issues with socks and underwear. We worked on wearing the offending article of clothing for just 2 minutes, using a timer. Then we worked up to 10 min, or if that was too much, maybe we did 2 min sessions, but twice a day or three times a day, etc. The important thing was to empathize with her. If she felt misunderstood, it made her feel even worse and less willing to do the hard work. So imagine you have a sharp, scratchy tag on the back of your shirt the whole time you're trying to help your daughter. Say things like "it must be awful having the clothing fairy/OCD monster/worry guy telling you to be uncomfortable. How awful to have someone else making you miserable. Let's be a team and squash that monster so you can be happy again." It's important to put yourself on your daughter's team. She needs allies and coaches, not another person reminding her how silly her thoughts are. When my daughter succeeded in wearing underwear for 2 minutes, we made a big deal out of it and she got a "prize." It could be something from the prize box (trinkets from the dollar store) or a coupon (playing polly pockets with mom for 30 minutes) or points. Initially, you want an instant reward. But later, you can give points and let them save up their points to "buy" something. We had a menu of rewards - earn 10 points to watch mom do a funky dance in public, 50 points to go ice skating with the family (and it might take 1-2 weeks to earn this many points). Some kids need the instant gratification, others can be motivated with long term goals. But if you do a long term goal, keep a visual graph to let them see themselves making progress. We also made a big deal of squashing the fairy every time she was defeated - jumping on an invisible fairy, mashing our hands together, etc. You really want to harp on how great it feels, how strong they are, whenever they're able to say "no" to OCD even briefly. Have her keep a list of every time she was successful and put it on the fridge, so she can see success even on days when she feels like a failure. Whatever you call it, it helps the kids to talk about OCD and give it a name. They can be so confused by what's happening to them. Having an adult name it and explain it takes some of the fear away and helps them feel understood. At the same time, educate yourself by reading an OCD book for parents. Talking Back to OCD is a good one as well as Freeing Your Child From OCD. OCD isn't one person's problem. It becomes a problem for the whole family. So the more you understand, the more the whole family is on board and uses the same vocabulary, the better. The food issues are obviously more serious and I'm hoping someone else chimes in with suggestions there. What are your daughter's specific eating fears?

My son has been tested with a blood test, my daughter has been tested with blood and stool tests (awaiting her results). Any doctor can order these, but not all are open to the idea. Many of our doctors have dismissed the notion that yeast can cause neuro or systemic issues. You will have to discuss this with your current doctor and if not satisfied with their response, you may need to call around to a DAN, naturopath, LLMD or other doctor who is more likely to have a "whole body" perspective.

I do not want to go back to the time that this forum turned nasty. I ask this in all sincerity, without meaning to start an argument - could you please avoid statements that seem to criticize others who may have done tests or followed protocols you don't personally agree with? I support your right to express your opinion, but not at the expense of others. Maybe it's not how you meant it, but it just reads "meanly". As an fyi - my son's doctor has kept him on Augmentin XR while we follow a more traditional protocol for Bartonella. He did not want to rock the Pandas boat or mess with anything that was working.

WD, I can't tell you how far my heart sank when I saw you post this. I'm no expert. I've only learned what I needed to know for my son. But these might help: Explaining Western Blot tests: http://flash.lymenet...TML/022767.html WB for Lyme: http://www.anapsid.org/lyme/wb.html Understanding the WB: http://www.lymenet.d...sts/brenner.htm 31 is very lyme specific and only shows up after you've had lyme for more than 6 mos. I have no understanding of how long this antibody would hang around after lyme was eradicated. However, a double positive makes me think this isn't an ancient remnant of a disease. I don't know anything about erlichia. I don't think a Pandas kid would produce antibodies to tick-borne diseases unless they'd been exposed to them. Your DS has double positives. You live in a lyme state. I think it's worth further investigation. Your son has made so much progress and has fought so very hard. Heaven forbid he should lose it all again when a script runs out. Check the helpful threads on the lyme forum http://www.latitudes.org/forums/index.php?showtopic=10804 for ideas on finding an LLMD. Try not to lose sleep. I can tell you I've slept world's better since my DS started lyme treatment. These results aren't a bad thing. You may have just defused a ticking bomb before it exploded. WD stands for Wonderful Dad!

Nancy, Great News! Looks like DS is just following in Mom's footsteps. You "cured" his disease so he can go on to "cure" others. I'm so happy for both of you! Merry Christmas! Laura

My DS was completely negative on standard WB too. HD IVIG did nothing for us either. His Igenex was overall negative but enough lyme specific bands were indeterminate or positive and he had high immune complexes. Based on clinical history, our LLMD started treating for Lyme and Bartonella. We saw rapid improvements and things continue to get better. I cannot say it often enough - if you don't see the expected response to a treatment, keep digging. There's still a missing puzzle piece and when you find it, it's like a eureka moment. You get your child back. Lyme is not scary. Losing your child - now that's what's scary.

I was sitting in the doctor's office yesterday with my DD5, who is undergoing a slew of tests for the source of her episodic, "sudden onset" OCD and sensory issues. Among the magazines was a children's book called "Tiger, Tiger, Is It True". It's about a little tiger who starts to think no one loves him and a wise turtle makes him realize it's just his thoughts that are making him sad. That if he considers the evidence, indeed lots of people love him. The book isn't about CBT/ERP per se, but it talks about the power of your thoughts and how you are the boss of your own thoughts. As we read the book, I stopped occasionally to use real life examples with my daughter (oh, this is like the times when the sad fairy tells you to cry for no reason...). You'd have to editorialize to your specific situation, but it's a great introduction to the idea that a child can be the boss of his own thoughts. My DD is about half way thru What to Do When Your Brain gets Stuck, but it's a little beyond her. Tiger Tiger was much simpler and only made one point that she could focus on. Something to consider for the little ones... http://www.amazon.com/Tiger-Tiger-True-Questions-Smile-Again/dp/140192560X

I think my son bore the brunt of such a "cytokine storm" - he was so seriously effected by HD IVIG, and not in a good way. I watched him "herx" for 8 weeks, not realizing he had lyme. When he finally came out of his tail spin, he was no better off than before IVIG. His immune complexes were unchanged, his IG levels were roughly the same, and his lyme was still there. If IVIG did anything, it pointed the way to lyme because when he failed to respond and remained sick, the doctors and our family started to dig further for a chronic infection. But I was always gun shy of IVIG and with perfect hindsight, I wish we hadn't done it. We achieved very good results with two months (so far) of bactrim at $3/month. If he made a big stride forward after pex (got rid of tics), then he paid a price with IVIG and made a 10 mile leap with a lyme protocol. I know others have had better results and maybe we could've reduced the post-IVIG setback with proper detox...I'm email pals with another mom whose son had severe setbacks after 2 HD IVIGs and then they finally discovered cat-scratch signs of Bartonella and lyme. Within 48 hours on bactrim, he was much better. Obviously, your doctors know your situation and details and have far better understanding of these things, but I just wanted to share my experience. Nancy - so glad to hear about DD! I hope you have an awesome time in the DR- Merry Christmas!

We have done both. You will have to discuss what may be best for your son's specific situation and since Dr L has experience with both, I'd give more weight to her advice than to any of ours. But for what it's worth, my son said he'd do pex again if he ever needed to, but he absolutely does not want to do IVIG again. Between the two procedures, pex was far less painful and he recovered mentally and physically much quicker. You do have to stay in the ICU all three days. The central line is inserted under anesthesia (propofil) and the greatest risk of the whole pex procedure is from infection at the entrance of the line. So you cannot leave the hospital once the line is in. But Georgetown does a great job of keeping the kids entertained (Wii, crafts, internet, games, therapy dogs, very friendly staff). One parent can sleep on a cot in the private room with the child. With IVIG, day one was no big deal, but day two made him very sick. Recovery took 8 weeks and it was extremely hard on the whole family. However, some kids recover much faster. But one disclaimer - after we failed to stay in remission after pex and after IVIG reactions were so severe with my son, our doctors started to wonder what was keeping my son from following the script. Why was he a "non-responder"? Well, we found out afterward, because he has lyme and Bartonella. Pex can't do anything to help the lyme (tho it did get rid of my son's very serious tics) and IVIG gave him such a severe herx that it was like throwing fuel on a fire. And after 8 weeks, he was no better off than he was the week before IVIG. However, a week after starting treatment for lyme, we could see major improvements that have stuck. Ironically, the antibiotic that was added to his mix (bactrim) cats $3/mo and has done more for him that $20K in treatments. I have to wonder why your son is still struggling so much after 3 IVIGs. I used to blame exposure for my son's setbacks too. But in hindsight, it was lyme. Before you shell out tons of money on either procedure, I'd highly recommend lyme testing thru Igenex or Specialty Labs. Even if you get an overall negative report that shows even one or two positive or indeterminate bands, it's worth pursuing that before doing a 4th IVIG or depleting all of his antibodies with pex. Also make sure mycoplasma and yeast are negative. There's a lot of debate about treatments. I'm not trying to add to that debate. I just urge you to make sure you aren't fighting a silent co-infection. Best of luck with your decision.

Regarding your question about lyme testing - I'm not sure how it would work in Canada. Your best bet is to contact this group http://www.canlyme.com/ontario.html They should be able to give you more accurate information for your situation. In the US, a pediatrician can order a lyme test thru any number of labs, but most labs follow the guidelines for surveillance set by the Center for Disease Control, which is an extremely incomplete guideline. So many on this forum have worked with specialists who order lyme testing thru one of several specialty labs that use a more complete spectrum of testing. You may also want to contact the author of this article or her doctor. http://www.anapsid.org/lyme/tickingbombcanadalyme.html Apparently, lyme isn't stopped by the border patrol and it is in Ontario.

A few friends have sent me these links ...they are somewhat dated, so please realize newer info may be out there. But as a novice, I found this helpful: Explaining Western Blot tests: http://flash.lymenet...TML/022767.html WB for Lyme: http://www.anapsid.org/lyme/wb.html Understanding the WB: http://www.lymenet.d...sts/brenner.htm My DS had results similar to yours and our LLMD considered them significant enough to begin treatment. DS is responding extremely well. I know it may mean travel, but this could be the key. You can contact ilads.org and go to the "contact us" tab to email them a request for a list of doctors that are closest to you. For us, it was literally life changing.

As emmalily said, this is a personal decision about what info to disclose. But regarding Starlight - they provided a lot of crafts and supplies to Georgetown Hospital for the pediatric ICU when we were there for plasmaphersis. They are a legit organization. But I can't speak to how they do or don't use personal information. You might call or email them or look for an opt-out option.

Motrin has helped us and so has alpha-lipoic acid and glutathione - two anti-oxidant supplements. (our doc has us doing either ALA or glutathione - not both together). Something to look into.

His diet sounds just like my daughter's (and my son's for that matter, tho he does not have yeast problems). Put anything remotely suspicious of being healthy in front of her and it's like I'm asking her to drink poison. Thank goodness for vitamins. We're doing both stool and blood tests for a variety of things (10 vials of blood, 3 days in a row of poop collection). The LLMD is sending the poop test to a co. that works with our insurance and will guarantee that regardless of whatever our ins. covers or doesn't, our out-of-pocket to them will be capped at $189. It's looking for signs of yeast, signs to see how her body is digesting things, Ph balance and a bunch of stuff I didn't follow. Will know more when we get results. But there's also a blood test for Candida via Quest (which was negative for DS). Agree you also need to rule out infections. As an FYI - after poop test is collected, we will start DD on Tru-flora - a commercially available probiotic mix that supposedly kills candida, not by crowding it out but by actually destroying the candida. We are to start with 1/2 capsule for one week, then full capsule once a day for 2 weeks, then twice a week prophylactically after that. LLMD warned that if she has yeast, we could see a die-off and increase in symptoms - thus we start with half a capsule at first. I believe you can buy Tru-flora from the co's website. But if you're wanting to test first, don't start it until after you've done the tests.

We are in a similar situation, with my 5yo showing episodic OCD, sensory, urinary/yeast issues, unfounded fears and the habit of being exactly in your shadow every minute. Not wanting to go down the same horrible path my DS8 went thru (he was treated for Pandas for 2 yrs, then recently dx with Bartonella), we took DD to our LLMD yesterday. He is re-testing her for lyme (we tested her in Aug along with DS and she had a few positive bands but not overly "lymey") but also testing for Candida yeast, which can also cause neuro symptoms. Lyme can cause urinary and gut issues, but so can many other things. We've had plenty of cultures, tests for UTIs, visits to GI docs and an endoscope - nothing found. But our doctor agreed that something is not right. If symptoms continue, I'd consider an LLMD or naturopath or osteopath - someone who looks at the whole body as opposed to a specialist. This could be many things, but it is probably not "normal" and I think you're right to keep pursuing. Best of luck!