thereishope

I know another person, I don't believe is on this forum, who very recently saw Murphy for a consult (not for the study) and wasn't impressed. She did not suggest any SSRI's like some have said she might do, but did send for bloodwork and a referral for therapy. No follow up was made or offerred.

Yeah!!!! I'm glad he's doing well. When my son started to ovecome more of his residual OCD, some other OCD habits/rituals that stayed started to tag on for the ride and go away on their own. Let's hope that's the case for your son too!

There are now a few more questions that some would like to know. If you don't mind answering them.... Here's a link to poll #2 http://www.latitudes.org/forums/index.php?showtopic=7255

Here are a few more questions for those who have children who have tested postive for Myco P. I tried to word them the best I could. I know it's a lengthy antibiotic question, but those who are not seeing improvement would like to know how their child differs from those who have seen improvement. Just read the answers slow and hopefully it will make sense. Link to poll #1 http://www.latitudes.org/forums/index.php?...=7240&st=15

Welcome. In regards to your question about DNASE, I pulled this from Buster's corner on www.pandasnetwork.org http://www.pandasnetwork.org/buster.html I also think if the strep is on the skin, that can affect blood tests and not give clear results. it's also harder for antibiotics to clear the strep when it is on the skin. What I'm going to do since it can be overwhelming to go on this forum at first, is provide some links thatwill answer a lot of your questions and open you up to a lot more. I suggest printing them out and reading them. It makes it a little easier to follow. PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 Buster's Flow Chart http://www.latitudes.org/forums/index.php?...ic=6688&hl= Finally, here is a link to OCD as others on this forum have seen. Sometimes you get so accustomed to the "quirks" our kids have, you don't even realize it is OCD or not the norm... http://www.latitudes.org/forums/index.php?...ic=6153&hl=

As for specific doctors being listed on the site, does anyone know if their info is given when a personal message is sent to the IOC Foundation? I understand not publicly listing it on a Fact Sheet, but if they at least have the info for severe cases, that would be nice. I know they suggest therapists and docs for other disorders. If a suggestion is ever made to the IOC Foundation, in my opinion, it would be to add a link to the PANDAS Network website (www.pandasnetwork.org) At lesat they will then then be connected to Buster's full Fact Sheet as it appears on here, the FAQ Sheet,all the research including IVIG and PEX, and this forum.

You're limited to the number of questions on each survey, but I will start an additional survey in a separate post. It's easier for me to see what the majoirty/minority is experiencing in "poll form". I can't do it now since I have to make lunch for the kids. If you want to do a new one, go ahead. If not, I'll do it later.

Let's hope it's just a bump in recovery. My son had those bumps. Sometimes they'd last for a couple days then he'd be back on track and even a little better. During recovery, they are fragile. Viruses, exposure, stress can cause setbacks. With all this Communion excitement going on, it could be adding to it. When my older non-PANDAS son was about to receive First Communion last year, my PANDAS son was not yet recovered. it was so stressful for me not knowing how it would pan out. At that time, he was still wearing his hood everywhere. well, you can't wear your hood in Church! Then I had a panic attack when I realized my non-PANDAS son would be drinking for the wine challis and I saw they forgot to wipe it after one child during practice. I debated so long whether I should tell him not to take the wine. It'll be okay. Take a deep breath and take a break from excitement and planning for a couple days. let her take it in and hopefully "snap out " of her setback. Keep us posted.

Here's that quote I found.... http://www.latitudes.org/forums/index.php?showtopic=7061 "A positive result indicates prior exposure to Mycoplasma. A single positive IgG result may be present in the absence of any clinical symptoms as specific IgG antibodies may remain elevated long after initial infection. Recent or acute infection can only be documented by a positive Mycoplasma IgM result and/or a significant increase in the IgG value between sera drawn two to four weeks apart. Specific IgM antibodies may persist for several months after infection or be absent during reinfection."

.

Another question I would have liked to ask was for those who saw improvement...what antibiotic was your child on at time of improvement? It seems, and I may be wrong, but I'm going by posts only, that Biaxin or its generic is what the majority is on. I think most peds would give a child Zith for Myco P. For those who had success on Biaxin, did you try Zith first? So, I still don't know if this is becoming a correct analogy... I do not know if this is correct......Amoxicillin is to Zithromax for strep in PANDAS kids as Zithromax is to Biaxin for Myco P in PANDAS (or PITAND) kids? Also, I want to find a quote someone had weeks ago about how with Myco, after subsequent infections one of the results may no longer rise? Like you said, Colleen, I'm trying to figre out what tests we can suggest to people who are just going to their local doc for treatment instead of someone like Dr T. I want to try to give them guidance and I don't know what to say. Then I worry about Biaxin and all this stomach upset. What is it doing to the stomach? Should a young child not be give Biaxin? There's just all this attention about Myco P, but I just can't wrap my head around all of it right now. Maybe it's too soon in everyone's treatment to see similarities?

I'm just trying to see what the majority is experiencing for those who have kids who tested positive for Myco P. I know some have done steroids too so if that is the case, please post that as well and when the steroid was taken. Thanks!

I know you probably posted this somewhere, but did he have a flare in symptoms first as a result of possible die off? I need to just start a poll abut mycro P kids and what they experienced. Within 3 days for us and Gat is IgM and IgG positive.

Awhile ago I inquired about using echinacea and someone said they were told it is an immune booster and may not be a good idea to take with an autoimmune disorder. I quickly looked it up and did see some people (not PANDAS) who had an autoimmune disorder did have flare ups after using echinacea. So, as is the case with any med or any natural supplement, keep a close eye on things and if you see red flags perhaps stop taking them.

I'm not saying this is the case with your brother, but it does make you wonder since you now know that their is autoimmune disorder in the family. The article explained how 20% of schizophrenia is caused by prenatal infections. I can't remember the post-natal number. So, for some the infection occurs early in life, but the schizophrenia doesn't surface until adulthood. A stunning number was that children who were born to mothers exposed to the german measles (rubella) during the 1964 US epidemic were 10 times more likely than other children to develop schizophrenia! Did you or any of your family ever wonder if it was caused by an autoimmune reaction?

The majority of kids that have gone through IVIG have "turning back the pages". I'm sure you've read about it before. When old OCD habits, old behaviors, old tics that the child used to have resurface during recovery. Like pressing the rewind button and watching it rewind. Interestingly, my son, who did not do IVIG, kind of followed this during recovery as well at times. I would see how "turning back the pages" can be scary, but it also may be a sign that recovery is happeneing and good things are coming. I've comared recovery before as watching a computer defrag. Have you ever watched that on your computer? To the human eye it is confusing and things are being moved around at a very fast pace. But eventually it all gets put back in the correct spot and order and the computer then moves faster and is better than before.

Melanie, could be be turning back the pages? Wasn't the Michael Jackson thing an older OCD thought?

Google is odd in what they support and what the don't. It brings me back to when the March of Dimes treid to get Google to do that artsy thing to their google name for the day in honor of March of Dimes. Well, March of Dimes didn't get enough votes so google didn't do it. That amazed me. I mean...it the March of Dimes... for premature babies!

I agree with the concern about trusting any doctor that is listed on here. Even though I know that the parents who have listed a name have had a good experience, it doesn't always mean a few others haven't had bad experiences. If someone has a bad experience, sometimes they share it (along with the name) and sometimes they do not provide the name and I understand hesitation in naming names. It would be nice if one trustworthy person could be in charge of compiling office experiences and maybe give a parent the "lowdown" of the good and the bad, off public forum.Maybe one doctor is great if the patient was sudden onset, but not chronic. Maybe one is good for young adults, another only kids etc.

In reference to specifically schiz... Did anyone else read that Scientific American Article that was posted a bit ago? "Infected with Insanity"? It listed that schiz.. can be caused by the flu! Even if the mother had the flu while pregnant or received the flu vaccine while pregnant . I totally agree, .... bacteria/viruses and what about severe vitamin deficiency (which---given how we know viruses work, the deficiency could be caused from bacteria/viruses-!!!) Just google vitamin mega doses and schitzophrenia or vitamin deficiency and schitzophrenia. A lot of people are talking about this now. Some are apparently disproven, but these days I don't discount anything. I have seen some amazing things happen in adults once vitamin/mineral were stabilized. (please if you are a parent looking for help for your pandas child, do not just independantly begin a vitamin mega dose without a physician's guidance- some vitamin over doses can cause severe problems....google 'vitamin overdose' for some examples)

I'm thinking that too. And the bacteria, virus, etc may be exposed prenatally as well, not just as an infant, child, etc.

I'm glad you clarified that! The way this forum likes to run with things, in a week you'd check back and there would be rumors about a study whose findings will come out then. We all tend to jump the gun sometimes on here! Let's see...2026....our kids will be adults by then and a lot of them a super smart. Maybe one of them will find the cure!

So, what seems to be the timeline for Biaxin and Mycro P? How long did it take everyone before they saw signs of improvemnt and realized it was working?

I do wonder how many docs look at these postings but are nervous to chime in. I'm so happy you put youself out there. It says a lot about you. You are a good man and a great doctor!

is she on a special diet? I say contact Pixiesmommy. She has revamped their diet and maybe she knows what food they eliminated that made their rash go away.