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.

I know we talked about getting together to chat once you got back from Yale. I know your dx. Has changed from what you suspected, but being the mom to a child who first presented with tics and continues to have tics primarily I have been there. My daughter was four at onset...all symptoms were behavioral but the only one that stuck out like a sore thumb to me were the facial tics at the time. When we got to Dr.Latimer, she pointed out that the quirky arm movements and Tongue movements were chorea. Review of history with her also made it clear that my daughters repetive behaviors and irrational fears were actually OCD. I did not know how to recognize that...especially in my four year old. I know where these moms are coming from....as a mom to a child whose primary symptom is movement disorder, it is so upsetting to be excluded from the PANS dx. Because many of us have been at this a long time. Many of us have seen our kids respond to meds and get better. PM me if you want to talk by phone. I have a great pediatrician in Binghamton who is a believer.

We are in upstate NY. Our families are in northeast PA....Poconos/ Scranton area which is why we have gone to CHOP for other specialties. How do you feel the team approach works? I guess considering all the different specialties, it makes sense. I assume you tell them up front that you are actively working with each of them and during consults you mention the opinions of the others? Since you've been this route, can you PM me and suggest who you would see next.

For those who don't know our story, we have been at this for 4 years. Initially dx. By dr. Latimer when my oldest daughter was four and then follows with dr. B, as he was somewhat closer. Have also been to dr. Elia. I guess I've come to accept that I am not going to be satisfied until at least one other PAnDAs doc. Weighs in. Only been to drs. Latimer & Elia once , bouboulis many times. Please PM me your recommendations and any suggestions, positive or negative. No responses here please...I don't want to cause any controversy. I have appointments scheduled with each and need to cancel one. Only needing to take my oldest at this time. Thanks so much!

Oh Jill, what a story! Glad she's ok...guess the pool and lifeguards were worried about liability and wanted to make sure.

We went to chop for endocrinology....they were wonderful and thorough with the thyroid....new nothing about PANDAS, but were open to it.. Had never heard of dr. Elia whoa as doing pex for pandas right there at chop and who we were seeing later in the day. The doc. We saw left CHOP

Pandas research network has the school section under resources. Give the school nurse article....it's older but I feel to them it talks about PANDAS in the education setting, not the medical setting, as they are unfamiliar with. There are many nice resources on there...I gave several to my daughter's school, separate packets for all administrators, nurse and her teacher. Thinking even the specials may benefit from knowing this!

Same with my in laws...his parents and brothers and sisters in laws, no questions on her status or concern expressed. Thank god for my supportive family, many of whom seem to have PANDAS as well.

Have to tell you this....my 5 year old started kindergarten with her brand new water bottle in tow. I had already informed all the teachers that I expect to bottle I with her at all times. She is a very mild case of PANDAs, probably because we have treated her so quickly and intensively. I worry about her bring strep home to my 8 ur. Old. Well anyhow, she told me she told her friend "stop drinking, it's full of germs" when her good friend was drinking from the fountain at PE class. OMG...I didn't know how to respond! I have told her just that for as long as she could understand. I hate water fountains...think they should all be removed! I think the email was perfect....but please send the water bottle...our kids health first, niceties take a back seat!

Dr. Elia was so knowledgeable....we were so impressed with her! Hope I didn't portray otherwise. Just looking for more agressive treatment....still searching for a way to try to heal this and not just stay on abx. Forever.

The best water bottles I have ver foundis on the website...fly lady.com. Double chambered stainless steel, my daughter comes home with ice cubes still in it from 9 hours earlier! Excellent reviews and reasonable priced. Check them out if your kids will only drink the water ice cold like my daughter....these are a godsend! Such a little issue.....sorry to get off topic.

Saw dr. Elia in jan...PANDAS friendly but conservative. She's a psychiatrist. Spent about 3 hours with us on initial visit and then had to run off to teach. She reaffirmed treatment plan of dr. B but added that we should remove tonsils. I was annoyed to get a letter thay she left CHOP with no Contact info. Did she have a choice? Did CHOP again say no way to PANDAS and forced her to go to DUpont? Heading in a different direction for us...Off to see dr. Trifletti on the 18 th.

Speak up about the water bottles! PANDAS or not, a child should not be denied water at their fingertips! First thing that goes into a letter for me and that I practice with my girls...no water fountains ever! Be sure all "specials" teachers know this too!

Message JAG10...her daughter had an issue a few weeks into a combo of abx. With the liver.