KaraD

Does it rev autoimmune issues? Some herbs that "boost" the immune system have been said to boost antibody production. Obviously, this wouldn't be a good thing for PANDAS. However, since it pulled the OP's son out of an exacerbation it seems to work differently? Thoughts? Kara

I've seen my son do this, but not enough to really be an issue for us.

We have. We came to Scott already gluten free, casein free, egg free and yeast free based on IgE/IgG results and Enterolab testing. He ran the Quadros test and when it came back positive added 5MTHF to our supplement list. He's added several others as well. I love that he can articulate the rationale behind each supplement decision we make. He is also very open for me to research and discuss options with me. He is super-smart, and I consider him the most important and most helpful practioner that is treating my son. Ann, there is another clustering autoimmune condition in the brain where the body produces autoantibodies to the folate receptors. This makes it hard for the body to process folic acid and dairy exacerbates the condition. HTH, Kara

Ann, We actually travel from Arkansas to see Scott, so I probably can't be much support IRL, but I'm happy to email My son is 5.

We love Scott Smith. He's helped my son tremendously.

Thanks for answering. What are "binding immune complexes"? He seems to be very autoimmune reactive based on his dietary IgG results and his PANDAS profile. . .would that rule out immune deficient? I appreciate the help. I'm rather lost. Kara

Hello all, At the suggestion of this board, we did the IgeneX Western Blot with coinfections for ds, 4 who has suspected PANDAS. The results were as follows: IgM Band 41 IND IgG Band 39 IND Band 41 ++ (I guess this is a 2+?) Bartonella hensalae IgG 80 (interpretation says: may or may not indicate active infection. In pations with previously high titers, such titers indicate resolving infection) Does this mean we need a LLMD or just to re-test? Thanks, Kara

My understanding of strep strains in probiotics is this: The PANDAS autoimmune reaction is due to an amino acid sequence in strep that is similar to an amino acid sequence in the basal ganglia. The body recognizes the sequence in the basal ganglia, mistakes it for strep, and attacks itself with antibodies against strep. When an active strep infection is present, you get an exacerbation because the body is revving up the antibody production against strep. Those antibodies are crossing the blood brain barrier and attacking the basal ganglia more intensely. Strep strains in probiotics and yogurt can have similar amino acid sequences that can rev-up antibody production in the same way on PANDAS kids that the "bad" strep does. Kara

Hello, If anyone knows of a LLMD in or near Northwest Arkansas. . .Fayetteville, Little Rock, Tulsa, Oklahoma City, Springfield, KC or even Dallas, the recommendation would be much appreciated. TIA, Kara

Hi LLM, Momcap, and Michael, Thank you all for your wonderful suggestions, links, explanations and experiences. I feel like I am at least getting a doable plan formed! We saw our DAN! today and ran the Igenex with co-infections, and OAT, and the Cunningham. I ran the "plan" by a PANDAS "expert" and then by the DAN! and they both agreed. I'm still going to email it to our psych doc, but I think it will at least give us a good idea of what we are dealing with (fingers crossed). This forum has been wonderful. I wouldn't have know to run the Igenex without you guys. Thanks again, Kara

Hello, My psych-dr suggested we consider PANDAS for my ds,4 (PDD-NOS, ADHD, OCD) His strep titers were elevated and his lyme titers were negative. From the brief time I've had to research, he fits a classical PANDAS dx. However, I have read some suggestions that I should consider testing for several different bacterial infections that present similarly to PANDAS and that lyme titers are not reliable. Where would you suggest I start with testing? What tests, labs, for what bacteria and why? Thanks in advance, Kara

Cool! Thanks! Kara

HA! This smiley face things works differently than my computer. Sorry for the weird interjections! Kara

Hi LLM and Mama2Alex, No, ds has never been on antibiotics. In his life. Period. I have a feeling that, that is about to change for him ) We just got the titres back last Thursday, so I'm only working on my fourth day of research. I have NO IDEA about all these other infections yet. If someone wants to point me in the right direction for which tests, it would be most helpful. We live with ticks all the time ) We have horses and dogs. The free range chickens eat some of the ticks, but every year we get plenty. Lyme is definitely in the range of possibility with us. Regular Lyme titres were negative. What else should I run? How did you find out your son had Bartonella? Stool analysis? I put the chelation challenge off to talk about PANDAS. I asked them to run a Porphyrins Urine Heavy Metals test instead, and they were fine with it. We are already gluten free (and casein and egg and baker's yeast by IgG) and we've been doing the yeast protocol; so I feel like I have a pretty good handle on behaviors from yeast and gluten infractions. We're also running and OAT tomorrow. PANDAS seems to explain the rest (unless it's some other bug that looks like PANDAS). PANDAS also makes sense because I know my older son is very strep prone. So where do I find a Lyme literate doctor? Do I need to find an infectious disease person? I looked at his throat today, and I bet his infection is still current. He has striations and puss eruptions, but says his throat doesn't hurt. He and my older son both have monster tonsils. He has real issues with hyposensitivity to pain and also with reflux. I think his throat is in chronic pain so he doesn't even recognize it anymore. After we put him on Nexium for the reflux, he was able to articulate to me that it hurts every time he swallows, but the Nexium helped a lot with that. Right now my plan is: 1) Tomorrow I have a phone consult with Scott Smith at Dr. Neubrander's office. 2) I also have throat cultures scheduled for the whole family, and I ordered his with sensitivities. 3) On Wednesday we draw blood for the Cunningham and run the two unrelated (if there is such a thing ) urine tests. I hope the DAN! might have some idea how to work up tests for other bacterial sensitivities. 4) Next I will probably start a course of antibiotics (whatever the sensitivity comes up with). 5) Then maybe a steroid burst to confirm reaction? I wanted to start with the burst, but I figure I should treat an active infection first. 6) and at some point Methyl b-12 shots to clean out the dopamine receptors in the basalganglia What am I missing? Thanks again so much for your input. Kara

Thank you, DCMom! I am in Arkansas. I would love some references for who to see. I am not opposed to travel if necessary. My son is in OT for SID and Speech for feeding and Pragmatics. Many of his behaviors are making more sense now in the context of PANDAS. I don't think any of my docs have much experience in the infectious medicine realm. I will have to work on that. I think you may have a point about the chelation challenge. It is an IV infusion of DMSP and then a urine catch to check for excretion of heavy metals. There are some side effects, though. That's why I wondered if there was a correlation between heavy metals and PANDAS or not? Thanks again, Kara