AmySLP

My daughter had this as well...dx. The same year she was dx, with pandas.

You might want to read "saving Sammy" by Beth Maloney

Yes, yes, yes!! Somewhere in my old posts I am sure I asked this question. My daughter had issues at day 7 or 8 and the pharmacist thought I was a nut, when I'd ask for the studies that measures potency at each day. Never offered to reconstitute it in smaller amounts but that's a great idea. Chewable a are terrible, but my daughter did accept them crushed for a while in pudding. It was a great motivation for learning to swallow pills.

Read the "helpful info for pandas at the top of this forum. Every child does not rise and titers and this was never needed for dx. I'm pretty sure there is an explanation there in one of the articles at the top of the forum. Many docs and I believe sue Swedo herself states in her work, that a titer rise is not necessary. Print those and highlight those areas and give to your doc.

Wonder if a placing a petition on change.org would be simpler and reach more people - my family is a lot more likely to click once on a petition than to fill out a template letter. Anyone know much about change.org? I think this is a great idea!! Could you email it to Beth?

I have never attended a professional seminar or multiday conference at which I've been told not to share info...interesting. I have some special certifications in my field (speech -language pathology) an had signed contracts that I understood that only certified therapists could perform the techniques...in others words do not train someone else or share handouts. Didn't realize that this would be a controversial topic....I was surprised there was no summary or sharing. Now I know why! Hoping dr. T. will share some info when we see him next week. Amy

My daughter has been in an exacerbation for a few weeks...she sees ENT today and dr. Trifletti next week. I am tired if using the abx. Bandaids for her. Last night she was saying as she was coming out of the bath...I can't breathe. The air is dirty, it smells dirty in here. Then as I am wondering if she just smells something and says the same thing happened as school. My first thought was physical, like asthma, but she has not shortness if breath symptoms or wheezing. No illness. Now I'm wondering if you'd call this OCD and /or an irrational fear. Has anyone ever had this in their children? It's been years since she had irrational fears as a symptom (then it was fear of me getting hit by a car, going down the drain after the tub etc.). Thinking this may be the case. Good thing we are going to the ENT today...so she can be examined to rule out physical problems.

Any info? Is a summary to come?

Kristin, You are on the right track! We are going to see dr. T on the 5th when the kids are off of school. I need to send you the list of labs....may helpful for you to have something to go with for your appt. Amy

Well written Kristin. I will find my email with all the labs dr. bouboulis got on our initial visit. You have a good pediatrician.....can't see why she wouldn't order these. Many won't make much sense to her, but will help when you get a second opinion. Amy

I find this post so relevant to what we are dealing with...residual symtoms after treating infection (and yes I've tested her and treated accordingly for tick borne illness). Tired of the abx bandaid....I am seeking to turn this around. Our kids who respond so well to abx may benefit from an immune modulating treatment to see if it may turn things around for them.. Seeking the same for my 8 yr. old. Amy

I would think its likely viral since she's on a good dose of abx. Be aware that viruses can exacerbate PANDAS symptoms too! It may have to just run its course.