putting together the piece

Yes. After abx challenge my ds12 went from Ingenex and CDC negative to Ingenex and CDC positive. Prior to abx. he had some ind. bands but only band 41 was +.

Yes, I have noticed something like an inverse reaction in my son during certain flares. It always resolves afterward but during the flare there are definitely unique gender specific issues which arise. For example when he was 6 years old we were in a store and he latched on to an enormous zebra printed bra and loudly proclaimed he just had to have it! LOL. Then he tried holding it up to his chest and seeing how he looked. He was so serious! I am not too worried about the behaviors as they always resolve with the flares and I think it helps him be more understanding of people who are different than him.

Dear Smartyjones follow the link provided. It should help answer your questions. We just completed neuro-psch testing thru our school. I sent this article to our school psychologist to help him understand what test we needed and why. Good Luck. Interesting article from PsychiatryOnline American Psychiatric Publishing (psychiatryonline@psych.org) 11/28/14 Newsletters To: mvesay@joesusedautoparts.com A link to the following article(s) has been sent to you by michelle vesay (vesayjewelers@hotmail.com). Neurocognitive Functioning in Youth With Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcus Thank you for using psychiatryonline.org! Sincerely, American Psychiatric Publishing A Division of American Psychiatric Association 1000 Wilson Boulevard Suite 1825 Arlington, VA 22209 Phone: 800-368-5777, 703-907-7322 (8:30 AM to 6:00 PM Eastern Time, Monday through Friday) Fax: 703-907-1091 Email: psychiatryonline@psych.org

Please get to an LLMD asap. Both my kids are PANDAS/PANS with chronic Lyme. It is a bear to treat and a good llmd is necessary if you want them to get well.

I would like the full article as well. Could you please send it to me too? Thank you.

Addressing the infection correctly seems to be a key component in fighting the OCD anorexia. For my child the first thing that had an impact was Minocycline, his food refusal and lack of appetite were both improved with the addition of that abx. But we also had to address adrenal insufficiency. He is also on Ceftin , Crypto- Plus , Cumanda, and a boat load of suplements.

When that type of slip happens I give activated charcoal or Chorella to bind with the offending substances and reduce the resulting offending behaviors. It helps especially if you can address quickly.

LLM is right. Now that she is eating you need to get the nutrients in her that she was missing. Try to reintroduce the healthy stuff along with the yummy stuff.

So happy for you!!!!!!

Glad to hear that things are looking up. I would say she probably needs the abx and the cbt.

Yes. Find an LLMD fast. Your ind. bands are lyme specific. This is exactly how my DS 12 presented. After 1 month abx treatment for Lyme his INGENEX test lit up CDC postive. Also my DS 9 was CDC positive and although we were treating with abx. for the Lyme, IVIG (2 rounds) would not hold. You have to handle the Lyme infection and any co-infections.

I did try and send a second pm. Please check.

I sent you a pm.

Just to be clear we use LDA or low dose allergen shots. They do not keep increasing in dosage like some of the more typical allergy shots. If you google it you can compare to traditional shots. Best of luck to you and your ds.

Maybe I can help. Ds9 has classic pandas and lyme. For 2 years he suffered with horrible intrusive thoughts that just never let up. During this time I began to realize that he was very sensitive to mold. We took him to a child allergist and started him on low dose allergen shots. It was the best decision for him. Within 2 days those awful intrusive thoughts stopped. We continue to get the shot every 2 -3 months. It has been really helpful for him. That being said it is only part of what we are doing for him but it is a meaningful part of his protocol.

We like Barleans Brand Organic Ultra DHA. They are fairly small and lemon flavored so there is no fishy after taste. Each of our ds' s take 2000 mg daily.

Thanks llm I just signed and posted it on Facebook. Your right about the usefulness of the raw data. Methylation issues can certainly throw a monkey wrench in the healing process.

Hi Janny There is a doctor in Towson Md that is a Pandas doc and he was able to get rid of my DS's intrusive thoughts. It was such a relief to have those thoughts go away! My DS made a lot of progress in that office and the doctor is brilliant. Pm me if you want his information.

Hello Cara, Our Pandas doc has us rotating probiotics on a 3 day rotation. We were told to use Therbiotics, Theralac, and Tru flora. We also use Nystatin (a compounded rx) 2x daily. Both my kids are on prolonged abx. Hope this is helpful. Best to you and your son

My DS 12 is currently using Ocytocin nasal spray. It seems to have helped him with social interactions. He is on 4 sprays daily for about a month now.

I know a Dr Christopher Lam in New Jersey. If this is who you are referring to. Feel free to PM me for details.

I am going too!

What state is your Pans/Lyme doc in?

I don't know. He usually sends patients to Latimer but he said many were complaining about her administrative staff. I will check today but I got the feeling that writing the IVIG plan was not something he does.

Hello Everyone, After years of trying everything else we have finally reached the point where IVIG is now looking like the best option. Our current doc agrees but he doesn't do IVIG. Based on your experiance whom should I contact? I'd appreciate any feed back that you think is important. Thanks