ktdommer

As a parent who has fought your fight, I want to say that not all advocates are created equal. In hindsight, I wish I had interviewed our first advocate. She didn't have enough medical experience to advocate for my sick child. I fired her and our second one did better. It took over two years to get an IEP. It made all the difference in the world. Couldn't believe the energy it took to get my son help. So many promises made by the district. I should have gotten more things in writing. Good luck!

What has helped me justify the abx combos for Lyme treatment is that my youngest bed bound son did have a huge improvement lasting nearly a year. I have Lyme and unknowingly gave it to both my boys in utero. I watched my oldest clear symptoms we though were from braces or sports. He was the healthiest of us three. I have had my vision improve, anxiety disappear and lupus like symptoms clear. I no longer get hives from the sun and my ANA is normal. Still feel like I need to sell our decisions to treat intensely. I cautiously share my story now after a pharmacy refused to fill abx and I was reported by a psychiatrist who questioned POTS and Lyme. What I'm hearing is that PANS is less understood than even Lyme. Sad! It has already been a hard battle to get well.

I am appreciate your informative reply llm. My son got better with orals and IV, makes me wonder if that confirms PANS or if it was Bart clearing temporarily. We blame rages on Bart. He has been with two ILADS docs. Newer doc is brilliant. Very integrative in depth treatment targeting a lot of things. Doc trained with Horowitz and understands the body from hormones to nutrition. Tested positive for MTHFR polymorphism recently. Addressing that now. KPU being addressed. Many overlapping symptoms with PANS. Vit. d always low. Takes 12,000 mgs a day. New doc has tripled anti-viral Valtrex. ABx combos always include at least 3. Also taking supplements. Stool kit is sitting on counter. Hard to get an angry 18 year old to follow through on that one. So many send out kits with new doc. Good info but not covered by insurance. IVIG was denied so doc is working on an appeal. How old was your son when he did IVIG? Did insurance cover it? If so, under what diagnosis? I look forward to learning more.

I know from experience that I only start one thing at a time or I'm confused about what caused what. When the doctor names more than one thing to start, I always ask what he wants me to start first with my son. Our usual rule is at least 3 days between starting something new. Three in my family on probiotics at high doses and no side effects. I do know that some people are much more sensitive. I hope you figure out the nausea issue. Has your son been tested for Lyme disease?

Thanks for the replies Joybop and Rachel. I felt like Cunningham was speaking to me during her ILADS interview. I did not see her presentation. I didn't believe my son could have PANDAS because he doesn't have a tic. I sort of ruled that out years ago. Didn't know a thing about PANS and new research. During his years of illness before Lyme diagnosis he had so much strep. In between documented cases he would have a puss filled throat with lots of pain. All that cleared after 3 months of orals for Lyme. I believe in my gut, that salmonella from eggs benedict could have been his trigger. He was never the same after that brunch. It presented like a severe flu and made all symptoms flare. Landed him bed bound for months. Despite a hospitalization, no one took his psych issues seriously at age 14. Kari

I've been learning as I read the posts on the forum. Looking for answers as I'm sure many can relate. On 4/22/10 my already sick child has extreme personality change overnight. He didn't have ticks, bladder issues or food issues. He was severely depressed and had bipolar tendencies. Manic at times and suicidal at times. He tested positive for Lyme, bartonella, babesia, mycoplasms, viruses and weakened immune system later that spring. He went from bed bound and crazy to back to school and playing some sports after 9 months of Lyme treatment which included IV rocephin. He has continued on oral treatments over 3 years now. Last February he started back to the severe psych issues and slid backwards health wise a bit. Nothing seems to be helping. I watched Dr. Cunningham during the ILADS feed and learned about her testing. I have just sent it off this week. Does it really take 6 weeks to get results? Our new ILADS doc is supportive of the testing. PANS seems to fit, especially acute onset. Any advice for a mother in limbo? Anyone with adult age children treating PANS? Thanks, Kari