Iowadawn

Your local friend from down the road chiming in here! Have you thought of getting a script through your local doc/nurse prac who has been sympathetic to your needs?? Keep your script for the 875. Sit down with her and state your case for giving XR a whirl. We have had to do this with Evan-right now he is on Biaxin after we stated the case for a change (a mp suspicion) back at the end of May. He is still on this. This helped halt a spiral we were headed into after our second IVIG in Apr. Dr. K has never recommended switching him back now. We asked to switch various times and he wouldn't budge. Now I just get abx through our local doc. We were all just out to see dr. k. Just a thought. Now we wonder if the Biaxin could be at least "making a dent" in potential tick-borne components in light of the IGeneX results. We see LLD Sept 22. Dawn

I hate to tell you this, but "hold on tight". The ride could get a little wild for a while. It is an awful feeling. Boy... can I empathize. It should get better. Take a deep breath. Dawn

Buster- Some interesting reads when you google Th17 BBB TLR 2. Here's one. http://ecam.oxfordjournals.org/cgi/content/full/nep063 Dawn

Child psychiatrists in our area of the country have been using it with good success for about 5 years and few (known) side effects. The positive reports of its use off label is probable what would prompt a trial like Riluzole. I'll still be glad when he's off it.

One of the drugs my PANDAS son is on, and is now given to some autistic kids, is the drug Namenda. It is a glutamate antagonist. It has been the one drug I have been quite pleased with. Our hope is to get him off of everything--that is our psychiatrist's expectation as well. Namenda is an Alzheimer's drug. Dawn

I went to bed discouraged last night early for me, feeling blah, (partly due the fact we were dealt another puzzle piece this week with IGeneX test results for our 11yo PANDAS ) and I woke up to this BIG step forward news. I about cried. I have a list of professionals to give this to. Thanks!!! Dawn

Get to a PANDAS doc. Your son is getting older by the day. You would be able to get into to see Dr. K in fairly quick order--At least that has always been our case. The supplemental support will help best if you take care of the main issue. Dr. K seems to be open to supplements, so I don't think he will pooh-pooh that approach, but he won't say that's going to take care of your son. FLORASTOR is a fantastic probiotic--often recommended in the autism community for gut health and has been suggested to us by Dr. K. You can google it read about it. You can email him--go to his webpediatrics.com website and you will see how to contact him. Please, don't waste another day trying to go at this alone. Get your son on the abx. Welcome to the forum. Dawn

I have never HEARD this name from Dr. K or anyone else in the know. That name was mentioned in a post that talked about the OCD conference. I don't like the sound of a "complex", either. PITAND actually fits the best if they have come to the conclusion "it ain't just strep". Doubt that they will keep this one. Dawn

My guess is the "big" docs will save face by sending out their "littler" docs to address this change. I have been told the naysayers were put in their place and were offered a means of saving face before the docs went fwd and potentially left them w/ egg on their face in the future-- Change the name. In an earlier post it was mentioned that Dr. K said that strep, virus, myco,etc. different triggers for the same set of symptoms. In that post he mentioned Pediatric Autoimmune Neuropsychiatric Complex. MY hunch is that this is the name. Just a hunch. Sept The Lancet for the white paper I have been told.

If someone knows a GOOD LLMD in the Midwest PM me. We are waiting for the IGenex results on our PANDAS son--probably a week out. I will not go to the one in Iowa seeing the doc's hx with the State Board of Medical Examiners. He is the only Iowa one and not very far from my town, but the seriousness of his discipline is too much. Errr. I do not want to dink around should these tests come back looking suspicious. I'll fly if we have to get to a good doc. I did a gulp while reading an earlier post by SF Mom and multiple IVIG's. Hmm. And we wait. Dawn

THANKS for the update? Did Dr. C mention any other info regarding the "Big Meeting" in DC? Did she mention if money is beginning to flow into the OU Foundation? Thanks, again! Dawn

Florastor. You'll find it for around $35 on the internet for a bottle of 50. Retail store will run you closer to $50. I've always gotten free shipping. Dawn

I know we will feel better when the IGeneX tests come back. We plopped down a tidy $1425 for Lyme & Co-infections. We balked, but are glad we did. We just turned in the stuff to insurance--odds that it will be covered, anyone?? I really don't care. Dawn

We are glad you found the forum. WELCOME, unfortunately. This is the pretty much my mantra because we spent so many precious years trying to figure out our son. You are lightyears ahead in that you have at least heard "PANDAS". The forum lists doctors who are treating PANDAS---Run, don't walk to someone who can assess your girl and offer appropriate treatment, if necessary. Do not waste time trying to educate a doc. Do not waste another day trying to figure out what could be wrong with your daughter. No one on the forum will say if we think your girl has PANDAS--there are enough symptoms you mention that warrant further investigation, though. Dawn

Breastfed all three. The two girls to one year. The oldest has an adol version of PANDAS. Breastfed my PANDAS boy until 10 months and decided to wean because he was an awful nurser. So distracted...Argh!!! A week after he was weaned he got his first very nasty URI and from then on it was one thing after another. Dawn

OK, men, close your ears!!! I have worn my underwear inside out for years & years. The seam--I want the smooth side in. It may be a sensory thing where the seam is bugging her. Unfortunately, guy's underwear doesn't have the seams like gal's. Just a possible explanation. (Too embarrassed to sign my name! )

Missy- More Iowans! We live in Central Iowa between Ames & DM. I am curious if you have found doctors in the Iowa City area that are understanding of the PANDAS dx. University of Iowa Med School? Iowa City is about 2 hours from here. I hope your get-together is enjoyable. Wish I could be there. Out of curiosity--how many cases are in that area of the state. I am aware of a handful in Central Iowa. Dawn

Just a couple comments I want to add. We have an 11 yo son that was dx'd PANDAS after probably 8 years of trying to figure out what was going on with him. The aggressive/violent behavior, with his age and size propelled us toward medications for him. Frankly, we were headed toward making the headlines of a local newspaper (victims) so we needed to do something. Each families' situations and children are all unique and you do what you have to do at the time to survive--in our (PANDAS families) many time it is picking the lesser of two evils. You do your best. Our psychiatrist has been very good and has learned a ton about trx options (IVIG-our son has had two)and abx. He has told us that he knows the meds will be short term. We have been on a few, not with too much help for long. Risperdal seemed to appear that it was going to work, but then he started tanking and his blood results went all wacko from being on it. Prolactin levels, blood sugar, cholesterol, liver function & weight have to be closely monitored. He had to be weaned off the Risperdal. Zyprexa is another one that is not weight friendly. Our boy crashed miserably and was placed on Geodon--same family as Risperdal, Zyprexa, etc. It is a little "friendlier" to the body than Risperdal & Zyprexa. Its major downfall is that it can make you tired, but we have been pleased with how it has worked in the mix of things. Evan's weight also quit increasing. We are 14weeks post IVIG #2. As long as he is tolerating his meds and is trending positive we will wait to wean him when we feel more comfortable doing so. We have had too many years of ^%%#%@. Do what you have to do and don't beat yourself up. Best wishes. Dawn

Along with the publication comment, Dr. K stated that child psychiatry is about ready to be turned on its head. I hope that Big Pharma isn't paying attention!! I was hoping for some sort of comment shortly after the conference. I have a feeling we will be waiting a bit. Dawn

When we were in Chicago late April for IVIG I asked Dr. K what would come of this meeting. He said that a paper would be published in a major journal, e.g., Neurology or some other journal. Dawn

WHEW-HOO!!! Way to go, everyone, for our kids!!! Dawn

I Love your "Name"!! Thank goodness we are spared our sense of humor!! I agree: scour this site for info. Green doesn't sound good-but what do I know. The CT scan would not be over the top. And you aren't standing on your head to get----go for it Getting a doc at your end on your side is to your advantage. It is best if you can get the abx prescribed locally--just so much easier. Dr. K would probably prefer that, too. Best wishes. Dawn

I have nothing helpful to add... but wanted to thank you for posting it... I needed to read this today! We are 8 weeks + 4 days post my younger son's IVIG, and things have been up and down... but reading this was uplifting and hopeful! Thanks!! - Karen We have the same questions about our DS11--something changed around 22 mo for us, too! We are about 12 weeks post IVIG #2. We are doing the best we have in a long time. I'm not holding out for the epiphany moment. I'll take gradual, steady improvement. (If we get an epiphany moment, I won't turn it down, though!! Re the hugging Dr. K, he is really "weird" this way. I'm not a "huggy" person (I'm weird, too!), so I don't speak from experience with him, just from what I have heard. From what I understand, he doesn't like to be touched. Maybe a high 5 would work! -Dawn

We have BCBS, but we had a similar response with no need for pre=approval--then, oh, wait....The pharmacy division is where the approval needed to come from. IVIG was an excepted procedure, but the pharmacy division had to sign off. There was the hang-up. Hope this is not the case for you. Dawn

Colleen- It sure sounds like the adolescent version of PANDAS thatour daughter was dx'd with in Dec. Go to Dr. K's webpage and read about the adolescent version. Our daughter fit it pretty closely. Anxiety is a major symptom. Dr. K put the symptoms together when our dd15's ADB came back at 5400. He asked if she had ANY anxiety. We started naming off some of the things her counselor and we were seeing, and she was experiencing--bingo. We had been passing it off as over the top stress in the house from ds11 with PANDAS. Has dd14 had PANDAS before and this is a flare up? (I am awful keeping track, please forgive.) Not sure I am of any help, but thought I'd chime in. Dawn