Megs_Mom

Oh, I so feel for all of you - that was ALWAYS my fear as well - that something bad would happen right when I sent her off on her own! I got chills for you. Our therapist always gave us great advice on how to build rewards instead of letting fear build rituals. So we likely would do a reward of sleeping with us tonight, announced as a surprise, based on his courage on the bus & at school - rather than because he is afraid. Then we'd immediately set standard that tomorrow is back to normal, but that as an extra reward, if he does well on Thursday & Friday nights, you'll have a family sleepover as a reward in the living room. We try to temper tough love with loving rewards, it seems to work for us. If we know a rough situation is coming up, then we try to reward for that instead of having 2 tough rewards in a row. We still (out of pandas exacerbation) have a reward program for sleeping alone - and the reward is family sleepover. She loves that one night every week or two. Hope tonight goes well - we are all pulling for you. You deserve a glass of wine with friends!!!

Hi - we had all negative tests as well - our daughter looks terrific on paper (with exception of high speckled ana & slightly low WBC), but then she tested positive on Cunningham, and has a classic response to prednisone and antibiotics. I know how hard it is, when everything on paper says nothing is wrong - and you are deciding between very different treatment options both based on a clinical diagnosis. I pray that better diagnostic tests are released soon. In the meantime, if the abx is helping - then take a deep breath and keep helping your son. Awful place to be, I do realize. I would certainly treat the low iron! And maybe run Lyme tests 188 & 189 from Igenex, and the Cunningham test, if you would like more information that what the abx is providing. We used our faith in Sudden Onset as our primary diagnostic. Kids really should not turn into completely different joyless people in a matter of a few days! From one low titer mom to another - you have my empathy! (By the way, we have been between 95-99% for over a year now on abx alone. Still crossing my fingers & saying my prayers every day).

I LOVE your ped!!!! Congrats super mom. Hope u see great results soon!

Hi our daughter is at 99% on abx. I would call her abx dependent however to maintain the remission. All of our pandas docs suggest we wait it out at this point and see if we can lower dose at a later point. I don't think there is a perfect answer, but lean towards doing nothing if he is doing well - except to maintain abx for a longer period.

My understanding is that lyme testing is IgG based. W/ IVIG every 28 days- we cannot get an accurate result. Am I off base w/ this? I'll see what her doc has for us tomorrow- we may be getting the rifampin afterall. Igenex is, I think. But spirostat tests for DNA of the various tic pathogens. So I don't think ivig will affect it, but maybe call them and check? They are a newer lab, but our llmd is really impressed with their sensitivity and how many pathogens they test for. They also have a mold and fungus panel. Hope you get it either way!!

Maybe you should test her for Lyme/Tic Born Disease - even an equivical result would get you the rifampin, I would guess. Or did you already go this route? We did testing through Spirostat for dh, and it does test for babesia as well if you request.

We have to have ONE prescription per month - most plans will not let you do 10 day, 3x a month. Tell your doctor this for the next one. If he calls in a NEW prescription, that should work - it did for us. Also he could call in a new prescription for 30 days, with a slightly different dose, and that will definitely work.

Does Lyme cause high ana's? Or do you mean that it mimics the symptoms? Lupus is also a mimic. Thanks

Call your local autism society, and find out who that community respects the most. Dan!s or not, they usually are the most willing to think out of the box. We found great resources that way, and I often felt that we were on the same continuum with autism. Good luck!

Nothing for us.

Hi all - I have an odd connection, who is now sending me a few parents of adult children (20-30 years old) to ask for advice - usually more PANDAS than Lyme related - but I do suggest they check Lyme, of course. I refer them all here, but they are often of a generation that is not as comfortable with a on-line support forum. I give them all the information I can, including the turkish study (PANDAS), but I am not sure where to refer them for any kind of treatment options. This is driving me crazy, so I am here to beg for advice. ANY doctors in the US that will evaluate and treat an adult for "infectious triggered OCD"? These are often very very severe patients. I am thinking maybe LLMD's? I just saw PacificMama's post on this - so that is helpful. Will these docs help with other illnesses? I am feeling frazzled this am, and would appreciate any and all ideas. Even reference papers that I can give them to help their local docs. I have pretty much everything that pertains to kids.... As an example, this am, I have a mom of a 23 years old - overnight onset of OCD at age 5 after hospitalization for osteomyelistis of the femur, treated with IV antibiotics. Short time later, over 2 days, different kid. Is now very severe as an adult, has gone through inpatient OCD treatment a number of times, worsens dramatically with respiratory illness. Also, I am wondering, can you expect dramatic improvement after so long, or would this be a situation where it would take a long time and a variety of interventions. My heart breaks for these children that have suffered so long and now are adults.

Hi all - I have an odd connection, who is now sending me a few parents of adult children (20-30 years old) to ask for advice. I refer them all here, but they are often of a generation that is not as comfortable with a on-line support forum. I give them all the information I can, including the turkish study, but I am not sure where to refer them for any kind of treatment options. This is driving me crazy, so I am hear to beg for advice. ANY doctors in the US that will evaluate and treat an adult for "infectious triggered OCD"? These are often very very severe patients. I'll post this on the Lyme board as well, as I am thinking maybe LLMD's? But how do I get a decent list of these? I am feeling frazzled this am, and would appreciate any and all ideas. Even reference papers that I can give them to help their local docs. I have pretty much everything that pertains to kids.... As an example, this am, I have a mom of a 23 years old - overnight onset of OCD at age 5 after hospitalization for osteomyelistis of the femur, treated with IV antibiotics. Short time later, over 2 days, different kid. Is now very severe as an adult, has gone through inpatient OCD treatment a number of times, worsens dramatically with respiratory illness. Also, I am wondering, can you expect dramatic improvement after so long, or would this be a situation where it would take a long time and a variety of interventions. My heart breaks for these children that have suffered so long and now are adults. God this has to change soon.

In Charlotte NC, use extreme caution when mentioning Lyme - everyone here is still VERY rattled by the Lyme lawsuit that put a doc out of business (he is featured in Cure Unknown). Bad thing to mention Lyme in NC. Gets you right onto the nutty list. I'd just go see the LLMD and then decide what you want/need to tell others. You can always call it PANDAS . Wierdly, that is more acceptable. Sorry to be a downer, just have been down this path on the adult side (no so much on the kid side by the way).

I had this for awhile - it is really annoying. I finally had a great doc tell me it was a sign of dehydration. I drank a ton of water for 2 days and it vanished. Hope it is NOT a PANDAS symptom! Hate the dentist, we are sealing her teeth again, in the hope of avoiding as much as possible!

If our dd does well for 6 months or so, I'll likely take down the frequency from 4 days to 3 - we'll see. We use it less for a preventative (we react to all virus as well, so strep is bad, but so is everything else) and more for whatever it is doing for her immune system/inflamation. If she gets strep, I expect we'll need something else in combo. We do use omegas & vit d every day to try to prevent/strengthen immunity. So far, something is working - knock on wood, she is healthy so far this year, but our bad times are usually Jan - May in terms of illness. Anyway, I am glad to hear that OLE is working, and will keep it in my tool box. If the azith quit working, maybe I can rotate. Thanks for keeping us posted.

Thanks for continuing to post. Honestly, we are doing so well on abx, that we'd be afraid to change anything. But I print your posts for the day that we may need them for a variety of reasons. I'm so glad that this is working for both your kids - it may be very valid options for kids - and especially for parents whose kids have adverse reactions to abx, or those that cannot get access to abx. I was reading about your DS5 - our daughter is similar on Azith - we cannot take her off it without getting an immediate return of symptoms, which are then helped by Advil. We actually just increased the dose to an immediate jump to 100% from around 95%. I think it is interesting that we are both seeing the same thing! We have not had yeast issues - we do a pulse dose, which our original neuro started us on for a variety of reasons. I believe he felt it allowed a rest time in the body, kept overall levels smooth, and that this helped prevent yeast buildup. Maybe she is not prone to yeast but I thought I'd pass this on. I'm not sure how that would work with OLE. I've been reading a lot about pulse dosing lately - there is some great information about pulse dosing and imflamatory issues on the Road Back (RA site). http://www.roadback.org/index.cfm/fuseaction/education.display/display_id/122.html I also have had this same recommendation from a LLMD, although we do not currently think we are dealing with Lyme. Our dosing is simple - we just use every other day, unless there is an illness at play and then we increase to a daily dose.

I am so glad it went well! After 2 long years, I will never forget the time that I NOT looked at like a loony overprotective mother with acceptance issues - but instead was treated like a mom with a sick child who needed to be treated appropriately. It was such a shock that I could still not really understand that we were finally getting help.

Hi Susan - so glad you are finding some answers!!!!

Hey - we use one specific brand & have insisted on it by name - not sure it matters, but it has worked so well for us that I am very resistant to any change. At one point, the distributor for our local pharm changed the brand, and my head nearly spun around! My pharmacist knew a panic attack when she saw one, and got the right brand back very quickly for us. Now I go in about 7 days before we run out, just in case there is an issue. Anyway, the brand we use is Greenstone - we use the liquid. I get the entire month unmixed, and mix it as needed. Hope the Zith shows great improvement - is it for both your girls?

When our dd was tested at OT, they found that she could not "see the mid-line". It especially effected margin drift. They used graph paper for her as a tool, not a cure, and it did help. This resolved when the PANDAS resolved, so I do think it is bg related. Happily, not permanent damage.

Hi, my dh has had migrating pain for last 2 years, with bouts of extreme exhaustion. Pain once "settled" seems to stick even after a 3 month exacerbation remits to about 90%. In next flair up, that area would be worse. All Rheumatoid markers are negative. Has been clinically diagnosed with neuropathy, fibromyalgia, arthritis. Now primarily in hip & neck. We had a crisis (severe back injury) which landed him flat on his back for about 2 months, and delayed treatment further. Ran Igenex: LabCorp p23(+), p41(+) in IgM, Igenex P34 (ind) , p39 (ind), and p41 (+). CBC – total WBC is slightly low 3.5 (4.0-10.5 E3 c/uL). Granulocytes as slightly low: 49.4 (50-70%) and the Lymphocytes as high: 42.1 (25-40%). C. pneumoniae, high. All else normal, we have tested to the max at this point. We just ran a babesia test through Spirostat, but don't have results back - maybe late this week. Started treatment about 2 weeks ago with Doxy, Clotrimazole, Diflucan, Omega 3, Probiotics. At the same time, started physical therapy. He is easily 75% better, although still weak, obviously in back area, although that is also improving. I tend to credit this to abx treatment, he credits to physical therapy. I would think physical therapy is at least part of it. My question is - does longer-term Lyme (he has been suffering off and on for about 3 years now) remit that quickly when treatment is started? And if so, how do you know how long to stay on the abx? I know he'll be ready to stop if the babesia testing is negative. If he does stop, will it return immediately, or is that rather variable as well? We have a daughter with fairly classic PANDAS, responsive to abx as well (Azith, Omega 3, Probiotic, Prevacid, Vit D), in a short period of time, comes back if we take her off it (so far).

It might be more helpful to say ways that OT helped us along the way - so here are some examples: In an exacerbation, our dd could not sit still - at all. Once we understood the issues, we had back up from the OT when explaining that our dd should be allowed to do any moving around tasks in the classroom (handing out papers or snack, putting up chairs, sweeping, etc so that she would have less time to sit still. That she could stand at her desk when writing & even travel around it, that she could sit on a cushion that would allow her to move all the time, that she would not be chastised for sitting on her feet or even sitting on the floor. Handwriting - we learned some techniques to strengthen her hands, as it was painful to write, got a special grip to help her hold a pencil, learned to use graph paper for both math & writing so she could better see the margin, got permission not to have to spell correctly on papers, and to take oral spelling tests. Sensory - learned about "squashing" to help prevent or calm rage or panic, learned about her need to spin and swing, learned to give her a structured "sensory diet" of swinging & spinning so that her body stayed in a fairly good place & did not get even more out of control. Dressing - learned tools for habituation to help her get dressed more happily in the am.

I have always been a big fan of attacking what you have in front of you - in a positive way - with every tool you can get your hands on. There are kids here that have a quick cure with abx or IVIG - and you can then quickly drop the OT or ERP if you wish. But there are others that continue to suffer with co-infections, underlying immune issues, etc. They may take months or years to heal. In the meantime, having every tool possible to make their lives as joyful and carefree as possible, was always our approach. And many of the tools are slow to learn and implement - many of the doctors and therapists have months of waiting lists. We did not approach OT or ERP in ways that made our child feel discouraged - when we found this happening, we quickly changed to a new team member or a new approach that could be more productive with our situation. I know we suffered for a long time without medical intervention. That, sadly, gave us a lot of time to practice tools that were just that - tools to help - not cures or even long term remission. Medical comes first - but if time and energy allows - doing both at the same time can be helpful. I greatly admire (and envy!) the parents here who find help quickly. But if you are a few months into a medical solution and have not yet had success - or if you are still having exacerbation after exacerbation - or if you are only at 85% and want to work on the last 15% from all directions - then I cannot more highly recommend OT and/or ERP depending on your issues. Even if you are just starting this journey with your child today - given the waiting lists, I'd call & get on the list. It's easy to cancel, not so easy to get the appt when you need it.

I would guess that if you go off abx, and no ill effects - then you are good, and the abx is just preventative. We had a nice 3 year remission after the first episode - with no abx and no issues. On the flip side, I don't think that if you go off and you DO have an adverse reaction, that it necessarily means that you still have an active infection. It could mean that - or that you have another person infected in the house. It could also mean that the abx is doing something else for that child - perhaps the illness was untreated too long - and the abx is either anti-inflamatory or immune modulating. There have been studies showing both of these effects in other autoimmune diseases. It's an interesting question. Once this illness came back with a vengence, it never went away - and the abx does something for her - with an increased dose, we are now as close to 100% as we have ever been. I hope the research catches up soon, to our treatment plan - I'd love to have her on something other than abx, if it could replicate the positive part of the abx. But for now, it's a great solution, and we so appreciate the effects.

That would make sense. It's amazing how a simple safety message can be twisted by OCD. I don't think that the actual fear will matter very much as you take each step - it will be just as scary for her if it is fire or throwing up. All that will matter is that she takes the step forward. I am especially interested in Allie - as I think that being unable to communicate about OCD must be beyond frustrating for her. There was a mom that spoke at last year's OCD conference. She is a writer, and she spoke about her son, who I believe has a pretty severe disease (I forget which one) - he is wheelchair bound, has to use a communication device, full time care, etc. I remember thinking, God, she must think we are all whiners, this seems so much worse. But her son got OCD. And she told us that of all his ailments - he felt that OCD was the worst. That having his mind not work right was far worse than any bodily ailment. That spoke volumes to me, and made me weep. It helped me understand how serious this really was. The World Health Organization lists OCD as one of the top 10 most disabiling diseases (including physical diseases). On the one hand, that is hard to hear. On the other hand, it helps to think that Allie may largely be trapped by OCD. Whether she has underlying autism or not, simply helping on the OCD front through the medical interventions you are already finding for her - and therapy, may be the biggest help to her. You are a one of my hero moms - most of whom I have met through this site, or through the OCD conference. Hoping for all the best for Allie.