LNN

You can try to search the OC Foundation list: IOCDF Or you can do a similar search in NH of it's not too much of a drive...

Stupid question? Hardly. I looked for a counselor. Dropped $80/visit on one who never met with my son and said "I can't talk your son well. I can only meet with you and your husband and give you tools for dealing with his anxiety." Two visits later, we dropped her and spent the money on a few books (How to Free Your Child From Anxiety, How to Free Your Child from OCD, Up and Down the Worry Hill, What to Do When Your Brain gets Stuck, Talking Back to OCD). Unfortunately, there are very few books on how to work with young children, which is odd, because young kids are sooo much easier. They seem to accept the tools and intuitvely grasp ideas much faster than an older kid who's trying to use logic and is more independent. So after I read a few books, I wrote one of my own for my son and made him the hero. I named his emotions and gave him the power to battle and defeat (be the boss of) these emotions using the tools described in these books (adapted for a child's world and in terms he could relate to). if you're not a writer, you can make up a bed time story in a similar manner, or sit at the table and draw as you describe tools and feelings (or put on a play using barbies or action figures or stuffed animals). I had two goals - first was just to give my son names for what was happening to him and to let him know he was understood. That alone was the single biggest key to deflating the rages - they ended faster each time we de-briefed afterward and we were able to talk and understand each other. My second goal was to give him tools he could then use by himself - teaching him to tense up one body part at a time and then relax it, visualizing "Edgar the Angry" or whomever being shot out of his body as he stretched out his arms or his fingers. Teaching him how to use the fear thermometer or one of the strategies in "What to Do When Your Brain Gets Stuck." I became the (unqualified, learning on the fly out of desparation) therapist. So calming the out of control child was step one. That alone helped the "orphaned" sibling (my daughter) - the one who suffered all the lightening strikes of anger from her brother, the one who needed her own hugs from her mom but couldn't get them because mom was coaxing her brother out from under the coffee table. It also helped my husband because it took the stress down several levels and in overhearing me talk with my son, a few coping tools rubbed off on him too. So over time, we started to share a vocabulary and have a few tools that worked. We were all still exhausted, but at least we now had ladels to bail out our sinking boat instead of eye droppers. Then a miracle occured. Despearately looking for therapists who did ERP with young kids, I by accident learned that towns in Connecticut have something called Youth Service Bureaus. Each town bureau may offer different services, but my town offered family counseling with LMFTs - for FREE. Finally a reason to celebrate my property taxes! It was actually our counselor, who got on the floor and did play therapy with my kids, who suggested Pandas for the first time. It still took us 10 months to find a helpful doctor, but at least we had a name for what had happened. So check if your town has something similar. If not, try this link http://ocfoundation.org/ and go to the 3rd tab in - Find Help. Under Find a Therapist, look for one that's a BTTI graduate - that means they went to the Behavior Therapy Training Institute run by the OC Foundation specifically to learn ERP. Then call each therapist and ask if they work with young kids. (I'll let others chime in on other questions to ask). I still found myself doing the bulk of the therapy - every night at bedtime, throughout the day, every day. Teaching the teachers in shcool how to handle different situations. But now I had a "girlfriend" I could vent to every week and so did my husband. And the therapist made sure to remind me, every so nicely, that once in awhile, I needed to find time to take a bath by myself or be a wife, not just super-mom (as in super stressed mom, super wound-too-tight mom, super researcher with the whole weight of the world on her shoulders mom). She wasn't entirely successful on this last part - nearly impossible to feel romantic or even feel like you can indulge in a bath in the middle of all this. But at least my husband felt like he had an ally who could help him express his own feelings of loss and frustration. It was hard on him too and he didn't always know how to find the words. As for how we found lyme - well, it was all that was left. We did plasmapheresis 11 months after my son's first episode. It got rid of his tics and really helped with a lot of the other stuff. But the brain fog remained and OCD came back after a few months. Could have been exposure from his best friend who had chronic strep, could've been exposure to others who were sick. Could've been lyme. All we knew was that after another long winter, we felt IVIG was our next step (prednisone worked wonders but it wasn't something we could do repeatedly year after year). We did IVIG last June and when he got worse and not better, we were stumped. I was completely spent - financially, emotionally. My friends were telling me to go on an anti-depressant. I couldn't find my way out of a paper bag. But the forum had started talking a lot about lyme and some parents who had been on similar journeys were finding lyme. I live in the bullseye of lymeland. I've pulled ticks off the kids. So we tested. And we saw an LLMD. And since nothing else had gotten us to 100%, we tried a lyme protocol of combo antibiotics. And that seems to have finally done the trick. (tho DS did have his first two, severe Pandas episodes within the same weeks of confirmed strep throat infections, so it was Pandas too- that's a whole other topic). So way more info than you wanted to know. But just like ERP is Meg's Mom's baileywick, talking about CBT gets my fingers flying. Just FYI - CBT is "thought therapy" - the thing you do days before a job interview. You talk to yourself. Tell yourself not to worry, imagine the boss in his underwear, remind yourself of all the reasons you're the ideal candidate - it's a way of changing your mindset to coach yourself to success and be the boss of your feelings. ERP is a sub-set of CBT. It's the steps and tools you use to conquer OCD. You can use CBT for anxiety, rages, etc. ERP is better for OCD, sensory, disabling fears. Because we had severe anxiety and rages, that's where I developed most of my tools. Meg's Mom is my coach for all things ERP.

I'm the "Edgar" mom. We actually named a lot of emotions - Edgar the Angry, Warren the Worrier, Calvin the Calm, Perry the Positive Thinker, Screaming Sally, but my son saved the best for last - when we finally explained about OCD, he named OCD "Stupid Guy" because he made DS do such stupid stuff that my son knew didn't make any sense but he had to them anyway. You can get some coping ideas from Freeing Your Child From Anxiety and Freeing Your Child From OCD. And the Explosive Child does help you to detach in a rage, which does save you from the "raging back" at them (trust me - most of us have been there. You're human. You have buttons that get pushed. It happens). The good news is that now that my son has been treated agressively for Pandas (pex and IVIG) and now for lyme (combo abx), it's all becoming "past tense". And he has no memory of the rages and hardly any memory of some of his OCD compulsions. Ocassionally, he'll have a super quick temper during the middle of the month (lyme life cycle?) but we all know the drill know and we're all able to catch it, use tools and reset much more quickly, without doing damage to one another. It feels like a nightmare right now and you probably don't know how you're getting through one more day. It does get better, partly because you'll find medical treatment and partly because right now, the more tools you all acquire, the more effective "whole body" treatment will be. IMO, your best chance of healing comes from doing both medical treatments and things like Cognitive Behavior therapy, Exposure/Response Prevention (ERP) therapy, and family therapy to protect the siblings and the marriage. This disease effects the whole family and you have to treat the whole family. But it does get better.

A friend sent me this link to this discussion with Dr Jones Dr. Charles Jones' Approach to Reading Western Blots: A Wise, Common Sense Position http://www.personalconsult.com/articles/drjonesapproach.html I don't know anything about Dr Schaller - it says it was reprinted with permission from Dr Jones in 2004. But thought it was relevant to this thread and it might help some who are trying to sift through their results.

I think we have all worried, as we sent the styrofoam package back to Oklahoma, what if my child isn't "sick enough"? On the other hand, if you "missed that peak window", it's almost incomprehensible to think you'd ever wait until they got that sick again to do the test then. So you do the test and keep your fingers crossed that the test supports what you feel in your gut. I don't know the answer to your question. I don't know if any of the doctors "require" a Cunningham test before considering an aggressive treatment. But I'd recommend calling the doctor you're considering for treatment and get their take on it.

Cool article (tho you gotta wonder about yourself and your circle of acquaintances when you start knowing people quoted in geek science magazines) I love Dr Cunningham's quote that this could be a whole paradigm shift in how we look at mental/behavioral illness. Like being at the cusp of a wave. Let's just make sure we keep raising awareness/funding research so all of our kids catch the wave instead of being left in the swell. Thanks Vickie and Chemar!

Not a lyme guru - so can't comment on the results. The one thing that I think is different between WD's son and DCMom's daughter are that WD's son is doing well and DCMom, your girls are still fighting something, whatever that something is. So I'd only suggest that the results be considered in context with symptoms. I guess it all comes down to "if what you're doing is working, stick with it. If not, keep fighting for answers." DCMom, I hope you have as positive appt. as WD did, regardless of diagnosis. The key is to get your daughters back to health. Wishing you nothing but the best.

I am so happy for your guys! It's nice to be reassured of what you're currently doing and also nice to know, in the back of your mind, that if you should ever reach a "what the?" moment, you already have someone (close by!) who's there to help. No worrying about "convincing" someone of your sanity. Thanks for the update. Wishing you guys continued good health! Laura

I'm sure the abx will be more helpful, but as an added measure, you can ask the oral surgeon for a mouth rinse called Peridex. It's an antibacterial rinse that my DDS gives when I've had root canals, to keep the area a little cleaner (if that's possible in the mouth). My son uses it for a few days just before and after losing a tooth. Not sure how effective it is, but it helps you feel like you're doing all you can. Take a deep breath. Your goal is ling term health and if removing the teeth is part of that goal, then remind yourself you're doing the right thing, even at the risk of any temporary set back. Hopefully, the tizzy you're in now will prove to be much ado about nothing.

Nancy said it best as far as summing up how grateful I am for Vickie's voice of reason and for her just wanting to help. Sometimes I'll see a new member post in a time of distress and have to take time to think about what to say (or muster up the energy)- but there's Vickie, welcome mat out, offering words of comfort and support and reassurance I'm not where Vickie is, or Meg's mom - we're only a few months into feeling like the worst is behind us for my son and now I find myself facing a new journey with my daughter. I think I was on the verge of a real nervous breakdown in September. I then went through a period of depression and exhaustion. It was all I could do to make a grocery list. Forget about cleaning the house. You don't get to be ahem - middle aged - without suffering a few traumas in life. But nothing prepared me for this journey. Talk about challenging everything and everyone you once believed in. Part of me looks forward to forgetting the gory details. But like Meg's Mom said, sometimes you encounter a trigger (in my case, my daughter's escalating symptoms), that put you immediately back into "response mode" and in an instant you're in a flashback. The other day, my daughter was crying and struggling with anxiety waiting for the school bus. The other kids were confused and asking her what the big deal was. You could see the body of the other adult at the bus stop stiffen, with a disapproving look on her face. "Man" her body language said "what a cry baby." Two years ago, the pain I felt when my son went thru something similar - I was secretly begging my son to be "normal", wishing we could just be like other families. Now, I honestly could give a hoot. Time stops, and all I care about are the needs of my daughter. It is like being in combat and my focus is only on the enemy (OCD). So I start quietly singing the "I'm not scared" song and my daughter and I start stomping on blobs of snow, pretending they're worry fairies. In a strange way, I'm actually glad we're not like other families. The neuropsych diseases suck, but it's like a laser and really instantly focuses you on what - and who - is important. So there are gifts in this journey and that's what I'm trying to burn into my memory.

Write this person a nasty letter. Put in every feeling and swear word you know. Save it for a week, then burn it. Or ask her to write down her impressions and make a date for lunch one year from today. Ask her to re-read her impressions one year and one day from now and see if she doesn't eat crow. On a more serious note, my answers have depended on how important the relationship is. If it's important, then maybe just put some space between you for awhile. I'm not sure anyone can understand if they haven't lived with something similar. Try not to be hurt too badly. As you said, you yourself might not understand if the shoe were on the other foot. It doesn't make this person "bad" just inexperienced. The most important thing is for your son to know that you believe in him and the wonderful things inside him. Everything else is just noise.

I'm sorta torn on this. Obviously, undisclosed conflicts of interest are a bad thing. And if you're not willing to be public about taking someone's money, then you probably know there's something wrong about doing it. On the other hand, funding a non-profit is such an exceptionally hard thing to do. And none of us would disagree that cost shouldn't be a factor in treating mental illness (e.g. IVIG or Pex or extended abx). Not a big pharma fan, but I guess I can see some gray. Have to give it more thought...

Stephanie, I am so sorry. I can only imagine how you're holding on by a thread. I know your house is complicated and I think you're dealing with so many layers, I wouldn't even begin to offer an opinion on what is due to steroids or anything else. I'm afraid you're going to have to go with your gut on what pace to take. But I will remind you of some things I'm sure you already know ... First - document. Weeks from now, you may want to look back and try to dissect. So keep a note pad on your counter, journal by the hour, or set up the video camera in the corner, or a tape recording. Do an excel chart at night. Whatever is practical. But since you are likely dealing with a co-morbidity of things, having something to look back to will help when calmer minds return. Second - try Cognitive Behavior Therapy for the rages. You need a coping tool and CBT worked wonders for my son when he was 6. One day in the middle of a severe meltdown, I said, in a commanding but not yelling voice "Edgar! You let DJ go!" Now, my son's name is not Edgar. So my son stopped his rage for a moment, wondering if I had gone mad. Not wanting to break the spell, I said again "Edgar the Angry, DJ does not want to feel this way. He hates that you're making him hide under the coffee table and scream. He DOES NOT want to feel this way and you let him go NOW!" almost like I was in the movie the Exorcist and I was one of the priests sprinkling holy water. Then I sat down on the floor about 2 feet from my son and held out my arms. He inched a little closer but was afraid of me. So I sat still, with my arms out and in a soft voice I said "It's ok, Edgar the Angry is gone." and my son crawled into my arms and bawled. From then on, when a rage started, I addressed Edgar. I didn't try to reason with my son. I only did everything I could to firmly tell Edgar he needed to leave our house. You could say something like "Edgar, I know you're trying to trick DS. But he does not want to do what you're telling him. I know you are mean and are making DS feel horrible. You just want all of DS's attention. But I am here to keep DS safe and I will keep my whole family safe. Now stop." The goal is to depersonalize the rage and let your son know it's not him you're upset with. You also make it clear that Edgar is not going to get his way, you're not falling for his tricks and DS2 is not going to jail. You, the mom, will keep everyone safe. Edgar is the enemy and you are going to help your son fight Edgar and win. Later, in calmer times, you can talk about making DS the boss of Edgar and using CBT/ERP tools you can both use when a rage starts. But for the moment, try something like making the rage into a 3rd person so you and your son can get on the same team to fight the horrible feelings. He must be terrified inside and this might help him reach out.

I had always thought that this was a definite Pandas symptom. Even when DS 8 was diagnosed with what I'll call co-morbid? lyme, I figured the urinary urgency and enuresis was one of those that was only in the Pandas column. But as Colleen points out (and I didn't know) is that it's shared by Parkinson's. And Wendy lists why it might be in the lyme column too. When my DD 6 started having to run to the bathroom every 2 minutes last weekend, on top of escalating OCD, I started thinking Pandas - but she has no strep. Just an unexplained 5 day fever two two weeks ago (exactly what happened to DS when he was 6, also over the New Year's holiday - way too much deja vu for a PTSD mom). Thankfully, this time around, we have a team of sympathetic doctors and a bunch of lab work that supports a trial of abx to see if that calms things down. She's not out-of-the-ballpark positive for lyme (indetermines and a few positives on both IgG and IgM). But thankfully, the treatment for both lyme and Pandas is abx and even some of the same abx. So I'm less concerned right this minute with what we call it and just hoping the abx help. Labels can come after the #$&*@! OCD fairies are out of my house! Colleen - thanks for the medical explanation on the bladder - that one's a keeper - maybe you could talk to Shelia or Chemar about making your post a pinned thread? Wendy - maybe the same for yours on the lyme board?

My two kids, since the day they were born, have refused to do anything in similar ways, lest someone realize they might be related. One had very "in your face" changes and one has had low-level, things that make you go "hmmm, but maybe I'm just being paranoid" kinds of things. But it's now pretty certain they both have the same cause. We're more heading down the lyme trail, but yes, siblings do seem to have a higher risk of contracting illness-triggered neuropsych disorders and it's not uncommon for the kids to force you to learn a whole new set of coping tools for each one of them. You're probably not being paranoid. But if you were - so what? What's worse - looking into an illness that causes craziness or dismissing it for fear of looking crazy? Follow your instincts.

Thanks, this was very helpful. When I read Cure Unknown last spring, it was before I knew it was in my family. I need to re-read with fresh eyes, but haven't made the time to do so. For those who've been secretly crossing your fingers for us, we just picked up a script for zith for DD. In a week, we'll discuss adding a second abx and do a month trial of lyme protocol. Praying it helps, as the OCD fairies have made this past week pretty rough. I miss my bubbly daughter. Hopefully this brings her back. (otherwise I'm going to have to find some other lunatic fringe forums looking for answers and after two years of knowing you guys, I'd hate to have to start over breaking in a new family )

I'm curious about using the amox 3x/day. That's not one I hear often for lyme. Is that because of the family's sensitivities to other abx? Is a combo of abx on the horizon? Or just amox? I do hope you see relief soon. Of all the families on the forum, you guys have struggled so much. Time for you to catch a break.

I'm not anywhere near as well-read on lyme as I once was on Pandas. Can you explain why multiple positive bands are needed to get an overall "positive" lab result from any lab?

Thanks. This helps me narrow my googling. DD is not overly "lymey" in her results so far and the LLMD has been reluctant to treat based on test results and clinical thus far. But other things (yeast, h Pylori, myco, parasites) have been negative as was Bartonella. The one result that keeps getting more ++ every time we test is 41. Her issues are mostly GI and neuropsych. For two years, we've just kept this on the radar. Nothing severe enough to pursue. But lately, things are escalating and it's like watching the little bubbles form on the bottom of a pot of water just before it starts to boil. So I was going to use my anxiety-driven insomnia to see if other things could be worth investigating.

We had a bad experience with the nurse in our elementary school. The biggest difference she could have made was by simply having an open mind. When the school psychologist and nurse start your 504 meeting with "you know Pandas is controversial" you may as well go home right then. If nurses started from the position that it's a valid, recognized disease, others in the meeting might follow suit.

LIKE LIKE

Vickie, you amaze me once again! re: C. Diff - the needle in the haystack I'm looking for might cause constipation, or reflux, or bladder issues, along with neuropsych - either directly or by causing leaky gut. Diarrhea isn't our problem. DD has not been on abx. Thank you all for taking the time to answer. If anyone has any other thoughts, please let me know. Meanwhile, I'll be wading thru Vickie's find...googling my little heart out.

Thanks Vickie. Hopefully my 6 yo DD doesn't have syphilis!

We tried oil of oregano on some finger warts - at first we felt it was helping, but it burned if you got it on healthy skin. And once DS rubbed his eye with that finger and it really hurt his eye for awhile. So we went back to the wart pads religiously for a few months and they went away. So if you use oregano, be careful.

I know that on the Western Blot (and Igenex) Band 41 indicates an antibody response to a bacteria that has a flagella - a tail, like a sperm. Borreliosis has a tail, as does H Pylori (the bacteria that causes ulcers). But I'm having trouble finding a list of other bacteria that might show up as a positive 41 band. Anyone have any info or google search ideas?