mdmom

I will PM you regarding Dr. Layton.

Thought others might be interested to know that Neuroscience accepts insurance and our insurance company paid for 80% of the bill.

I will PM you. mdmom

My DS13 in the last 9 months was diagnosed with PANDAS by 4 doctors, 3 of which are well-known on the East Coast. None of them could get our insurance to cover IVIG, which is what they all recommended since he has been sick for 9 years. I was forced to seek an integrative doctor and seek out alternative therapies. 1 month ago the integrative doc uncovered Lyme and a co-infection of Babesia. PANDAS treatment must begin with clearing underlying infections, especially Lyme. I HIGHLY suggest you rule-out Lyme and co-infections. Use Igenex Lab or Neuroscience Lab (My Lyme I.D. test). Some on this forum may disagree, but many have had a similar experience. Good Luck.

Bumping up -- looking for more replies.

We just tried the VSL for the first time last week. Stuck with it for 4 days. It caused a lot of stomach discomfort in my DD11 (Lyme, Babesia and Bartonella dx) and extreme diarrhea in my DS13 (Lyme, Babesia and PANDAS dx). come to think of it, my son seemed to have a flare in PANDAS symptoms as well during the 4 days we used it. We stopped using it and changed to another brand.

I see a lot of folks on this forum using Igenex testing. Has anyone ever used Neuroscience "My Lyme ID" testing? It goes beyond looking for just Lyme antibodies. Curious to know your experiences. https://www.neurorelief.com/index.php?p=cms&cid=46

Michael, Have you ever been evaluated for a TMJ issue? It is a co-infection symptom (can't remember which one...Bartonella or Babesia). My daughter was evaluated by an integrative dentist before she got the Lyme dx last month. He explained the TMJ/swallowing relationship and how a dysfunctioning TMJ really compromises the musculature of the neck, shoulders, etc. Just a thought..... As I say..."put it on the to-do list." Good luck.

Sheila, Great info on the link. Jsut a warning - I clicked on the downloadable version of the info (on the link) and as I was viewing it my computer detected a virus and shut me out of the page.

Your breathing issue sounds like "air hunger," a symptom of Babesia or Bartonella, can't remember which one. Hang in there.

change to my own post... It should read my DD11, not my DS11. I have a son who is 13 with PANDAS and a daughter who is 11 with no PANDAS but dx Bartonella and Babesia. sorry....I have brain fog from all the stress.

My DS13 has PANDAS confirmed by 5 doctors and most likely has been sick for 9 years. Meanwhile, in seeking treatment (not successfully, yet) for my son, we have started to connect the dots on my DS11's mysterious physical health symptoms. The doctor we are currently seeking help/treatment from is now looking at both of my children for Lyme and Co-Infections. DS11 has a confirmed clinical dx of Bartonella (has 80% of symptoms and the tell-tale stretch-mark rash on her back - which 10 other docs have ignored). Her Quest Lab tests came back with a positive for WA1 (Babesia). She is only reactive to Band 58 on the Western Blot. We are waiting on Lyme results from NeuroScience Labs. Question: Does anyone know if you can have 2 confirmed co-infections without having Lyme? I will be surprised if her Lyme comes back negative but I would love some feedback in this area. Meanwhile, my son's Quest results are negative for co-infections. But his WBC count is 3.2 (low), Absolute Neutrophils 1555 (low), Absolute Monocytes 198 (low) Question: Is it possible to have such a weakened immune system that you are not fighting co-infections and therefore would not be making antibodies to such infections? Our next doc appt. is next week, but I am running out of hope and need some encouragement. My son's PANDAS (or Lyme, who knows?) symptoms are so bad right now, he is unable to attend school (and he attends a special-needs school under the diagnosis of Asperger's/OCD). Ugh. Thanks for any help.

My DS13 has PANDAS confirmed by 5 doctors and most likely has been sick for 9 years. Meanwhile, in seeking treatment (not successfully, yet) for my son, we have started to connect the dots on my DS11's mysterious physical health symptoms. The doctor we are currently seeking help/treatment from is now looking at both of my children for Lyme and Co-Infections. DS11 has a confirmed clinical dx of Bartonella (has 80% of symptoms and the tell-tale stretch-mark rash on her back - which 10 other docs have ignored). Her Quest Lab tests came back with a positive for WA1 (Babesia). She is only reactive to Band 58 on the Western Blot. We are waiting on Lyme results from NeuroScience Labs. Question: Does anyone know if you can have 2 confirmed co-infections without having Lyme? I will be surprised if her Lyme comes back negative but I would love some feedback in this area. Meanwhile, my son's Quest results are negative for co-infections. But his WBC count is 3.2 (low), Absolute Neutrophils 1555 (low), Absolute Monocytes 198 (low) Question: Is it possible to have such a weakened immune system that you are not fighting co-infections and therefore would not be making antibodies to such infections? Our next doc appt. is next week, but I am running out of hope and need some encouragement. My son's PANDAS (or Lyme, who knows?) symptoms are so bad right now, he is unable to attend school (and he attends a special-needs school under the diagnosis of Asperger's/OCD). Ugh. Thanks for any help.

IgM suggests a current infection (newer antibodies) IgG suggests a prior infection

Thanks for all of the feedback, everyone. The motrin seems to be taking the edge off.

thank you! I gave him a regular dose this morning and he'll get another at lunch. Hopefully it will take the edge off. Do you dose the Motrin for days at a time until the exacerbation subsides?

I read somewhere on this forum that ibuprofen is useful during a PANDAS exacerbation. Anyone have any info or dosing recommendations? My DS is 13 and we are still searching for help/treatment. We've had to go the alternative route b/c of insurance denials for mainstream treatments. I need to do something while until our next appointment with new doc in late April. This will make PANDAS doc #5 (We already consulted some of the more popular docs on the East Coast). Thanks for any info you can provide.

My son's immune system isn't great (some slight IGG deficiencies), but not bad enough for immune deficiency dx. Dr. T. is actually out of our network and Dr. B is in our network.

Thanks for the information. I believe as of 1/1/11 there is now a code for PANDAS. It's in the newest ICD-9 book.

Melanie -- We saw Dr. T. once and loved him, but I could see he was struggling with how to build a case to insurance for IVIG. My son's CVID evidence isn't that strong. Do you see Dr. B too? Dedee - My info on CIGNA is hearsay.....my friend with United said that she is sure they cover IVIG for PANDAS. Sorry for the weak information. Thanks to all who have posted so far.

Thank you for your support and well wishes. I have found so much helpful information on this forum in the last few months. How is your child doing? Did he/she have IVIG?

Hello, I just found your post and was wondering if you ever did get BCBS to cover IVIG using the PANDAS diagnosis. I have BCBS and they just denied my son's IVIG for PANDAS; doctor used this dx even though he usually uses an immune deficiency dx. Our case is now being appealed, but I am not hopeful. Any help you can give me is much appreciated. Thank you.

I know that CIGNA and United Healthcare both cover IVIG for PANDAS specifically (according to my friend who's son just got IVIG paid for by United). We have Blue Cross/Blue Shield and IVIG for PANDAS is considered "investigative treatment." No surprise that my son's IVIG coverage was denied last week when a well-known (to this forum) PANDAS doc tried to have it pre-authorized. This doc usually comes from an immune deficiency angle (which my son has, but not severe) when getting IVIG covered; however, he used PANDAS as the dx. The Dr's office is appealing the case on our behalf. Has anyone else gotten BCBS (from any state) to pay for IVIG for PANDAS specifically? Those of you who have insurance that covers IVIG for PANDAS specifically -- do you know what research/data your insurance company is using to support their policy? A little background info: My DS13 was only dx 3 months ago with PANDAS. Four doctors have now diagnosed him with PANDAS (3 of them well-known on this forum) and all agree that he needs IVIG. They all agree that an uncleared strep infection at age 3 1/2 and then a ruptured appendix/peritonitis at age 4 triggered the autoimmune response in his body. He has shown more improvement on daily Biaxin and 2 steroid bursts within the last 3 months than he has in the last 3 years with therapies, psychiatric drugs, special schools, OT, etc. You can also do the math -- he has been sick with PANDAS for 9 years with no treatment. It is a sad story (like many others's on this forum....) Diagnosed with Asperger's, then severe, untreatable OCD, Anxiety Disorder, Sensory Integration, etc. He has been hit so hard with PANDAS that we were forced to place him in a school 50 miles from home for children with special needs. But we are on a hopeful path now that we know it is PANDAS. I would appreciate any information you can give me. Thank you.

Be careful. Many probiotics have strep bacteria in them. We use Culturelle twice daily. Abx with breakfast, probiotic with lunch, antibiotic with dinner, probiotic before bed. Also, we are gluten and dairy free, so using a GFCF probiotic (there are few) is important. Culturelle has a gluten/dairy free probiotic. Vitamin Shoppe has best price.

My son was dx with Asperger's at age 7 1/2 and just a few months ago was dx with PANDAS. Two of the 3 docs that dx him with PANDAS all agree that he most likely does not have Asperger's. His social delays, behavioral issues, etc. are all PANDAS symptoms.