AmySLP

Kara, Yes, we give probiotics & my daughter loves greek yogurt-eats it 1-2x/daily.

Jill, I remember your daughter's symptoms & that's why I waited even a few extra weeks to do the liver testing. I did not increase the meds, no changes. I'm worried if it could be colitis issues creeping up. After all, it's been nearly 3 years of ABX in some form or another. She was home from school Friday with GI issues too. Amy

My daughter is having belly pain often. We did check liver enzymes about a month ago and they were fine. She takes Zith & Bactim currently & is scheduled to see Dr. Jones in Jan, for co-infections, that I'm afraid will mean more or even changed ABX. Anyhow, the pain seems to be cramp like & i've always thought maybe she just needed to have a bowel movement. Last night however, I was shopping with her & she was fine & suddenly she started to cry out in pain. I got her to a bathroom and she urinated & at first was still irritable, saying not to talk to her b/c her pain was still there, but not as bad. I taught her to rate the pain on a scale some months back & she told me that her pain was a 10 before she urinated & that she felt like she couldn't breath it was so bad & that after she urinated it was a 2 or 3. Am I missing something? I figure with all the ABX it could not be an infection, but she has never tied this pain to the need to urinate before. I am so worried about what to do here. I've been to the ped twice about the belly pain & he said last time we could get an xray to see if it's stool that's backed up. I really don't think so, b/c she is regular. ANy other ideas or similar stories. Thanks,Amy

I have asked this question before without much response. I know of 2-3 families in this geographic region, whose children have PANDAS. My pediatrician keeps asking me about this. My daughter is doing well & I think I may finally be at a point where I feel this is something I can take on. Let me know where you are geographically & if you are interested. Amy

Laura, we really struggled on deciding to mention the Lyme or not & chose not, b/c we haven't even seen the LLMD yet & Allison has co-infections (borderline positive). It's still hard for us to digest. What I know for sure is that my daughter had strep for over 6 months & then EBV. I really wanted to stress in the piece that mental illness can be caused by infections. hope that makes the cut. You really are at the mercy of the reporter. It's not liek we could preview and approve what airs. I just hope our messages are clear. Sometimes the things I rehearsed in my head before the interview just did not come out quite the way I planned. Happy Thanksgiving! Amy YES we certainly do have a lot to be thankful for Amy! I will definitely watch that story...will it be on PANDAS, lyme, or both? I really think the parents in CNY need to be aware of lyme disease in our area and how rampant it is becoming. Certainly our docs at Bassett Health Care had no idea. I shudder to think how many kids are affected. Happy holidays and enjoy that healthy girl!!!

Laura, I'm tearing up reading your daughter's story. I remember how bad she was last year & how desperate you were to find treatment. My daughter is doing well with treatment for co-infections as well. For the first time in 3 years I can say she is symptom free of tics and the OCD anxiety symptoms that were starting to creep in. My daughter was definitely on the mild side, but I will never doubt that it is because I found this forum and got her dx. & tx. so early. Your daughter's story is one so full of hope for kids who have been lost to neuropsychiatric disorders caused by infections. We went to the local media to share our story & it will air in Binghamton on WICZ fox 40 on Nov. 23. It will be available on the their website after 7 pm that night. ANother family that we know, whose daughter is close in age to yours, will also be featured. SHe was much more severe & has total turn around too after ABX & IVIG. It should be an amazing story! You have so much to be thankful for this Thanksgiving! Amy

We live in Binghamton NY, East of this area. I did post that our PANDAS story, as well as that of another child in our community, will air on Weds. Nov. 23 on WICZ, Fox 40. It will be available online at 7 pm.

Hi Amy We have well and trully been down the path of it being neurological - and all the neurologist have dropped us like a hot potatoe and passed it off as psychological. Involuntary she does make sounds like "ahhh" when somthing frustrates her or "ohhh" when she is annoyed - however try and get her to repeat those sounds and she cannot. It's not very loud but you can hear them. She also is able to laugh out loud and its always a pleasure to hear that noise. She has been seeing a speech pathologist for the past 5 months and whilst she still is not speaking she does make small wispering sounds vouluntary now which is a great sign. SO glad to hear your daughter is making some progress, albeit small, but still progress in speech services. The complexity of her situation is great & she certainly has a great parent advocating for her.

Does your daughter have the ability to produce sounds (cough, throat clear, vowels) on demand? AS a speech-langugae pathologist, I'm not sure why involuntary movement of the velum/soft palate would be blamed for lack of speech. This affects nasality and ability to produce plosive sounds (p, and other consonants that require build-up in intraoral pressure, but vowels ahould be there if it's just a palatal issue. What's happening at the vocal cords, where sounds are produced? Wondering if she's having involuntary movements there, inhibiting her ability to initiate speech sounds or other sounds VOLUNTARILY. Is her swallowing/eating impacted? Just wondering if a speech pathology evaluation might shed some more light on what's happening here. This sounds very neurological and I would pressure neurology to look for the cause. Amy

you can PM me & I can e-mail you the info too.

Our kids movements would look a lot alike if they were sitting side by side. My daughter had shoulder rolling/shrugging & eye blinking too-totally unaware. THat's why I struggle with calling it a tic vs. compulsatory behavior, but in talking to adults with tics, they can tell you that they just have to get these out, so maybe as you age, the awareness increases. I can't believe that for the first time in nearly 3 years I can;t see one tic in my daughter. I reluctantly started treating with an antibiotic combination for positive co-infections a few weks ago, when for the first time she started to have some major OCD & anxiety & now, even the tics or movement compulsions have ceased. Amazing & somewhat still unbelieveable!

Have you had him evaluated by a urologist? My youngest (4 1/2) is a child we are on the fence about PANDAS-wise. SHe has night time incontinence that seems to improve on antibiotics, yet negative for UTI. In the past she has had daytime frequency (12+ times /day) & we decided to rule out problems with a urologist. In our local area the interpretation of the test was that she had residual after urinating & a small capacity bladder. Took her to Childrens in Philly & the uruologist said it was shadowing they saw on the ultrasound, not residual and that it's a common mistake. HE did urge us if the symptoms continue to age 6-7, then she needs to come back. I still do take her urine in frequently for dipping because I don;t want to miss a UTI. I know Dr. B feels her urinary issues are from PANDAS, which again, we are still on the fence about with her.

We drew all the labwork before going to him, so our first appt was more thorough. Call the office and ask for the order or for what to have your doctor order. Also you had mentioned what you can do in the meantime, while your son is having a new onset of tics. I know that he recommended having my child's pediatrician order Zithromax for her until we could see him at the first appt., however that was after I talked with him at length on the phone first. I don't think happens anymore-he's gotten MUCH busier. THis was about 1 1/2 yrs ago, when I can't even recall having a wait to see him. Good Luck, Amy

My daughter always had primarily tics until recently. With these repetitive patterns of face/head touching & wiping sequences, I always have wondered if these were tis or compulsatory behaviors because they often happened in sequences, the same, over and over. Whatever they are, in any event, you may want to have your child tested to see there is a current strep infection, that might be the easiest way to get ABX. Have you approached your pediatrician about getting something uuntil you can see a PANDAS doc? Amy

We had success on two warts on my daughter's feet with the duct tape-crazy I know. But painless-left them on until they fell off and then reapplied. It's been 2+ years and I've never seen them again!

On a positive note, my daughter did kick strep infection that had been difficult to erradicate for 6-7 months with all other ABX, with a 10 day dose of Clindamycin. SHe was younger (4) than your son. It stopped the PANDAS symptoms for nearly a year. I hope for your son's sake, it is as successful for him.

Thanks!

Everyone keeps citing herxing & die-off of bacteria with Lyme ABX treatment. I think we may be going through this with my 7 y/o daughter. Are there any articles/papers written on this I could read to understand this effect better? Thanks, Amy

We were told no vaccines for now either. My daughter never had her booster of MMR & another before Kindergarten due to this & her titers fell short, showing she needed them. I never get her the flu shot either for this reason.

Thanks all. We are trying to get an appt with an LLMD as soon as possible. My daughter is now taking bactim & Azithromycin.

Sounds like the referral we got from Dr. B. I left two messages with the service & never got a call back from his office. Is that normal?

I guess I wasn't clear in my post that my daughter did test positive on Igenex testing for Erlichia (sp?) and Bartonella. Although the numbers look like they are borderline positive. She does not have Lyme, just these "co-infections" per Dr. B's interpretation.

Igenex results revealed Erlichia (sp?) and bartonella. The numbers look borderline possitive. Dr. B started her on Bactim in combo with Zith. Need a consult with someone, as she is now presenting with compulsatory behavior & anxiety (whereas before she had primarily tics & choreiform movements). Looking for some recommendations for Lyme docs, as I can't seem to get a return call from the Dr. that was recommended by Dr.B. thanks, Amy

I'm wondering the same. We are rally in need of a consult with a lyme doc at this point.

My worst fear has come true. My 7 y/o daughter's tics are essentially non-exisitent & now she has some extreme fears and compulsions. These are begining to affect her functioning, as she is avoiding many activities because of fear or the time spent on the compulsatory behavior. She fell into exacerbation 1 month ago with severe emotional lability & with a switch in ABX, that is under control. But now the anxiety and compulsions are emerging. My daughter's PANDAS has always been primarily tics and choreiform movements. For the last few days, I have not seen any tics. I Switched her back to zithromax & started Bactim (Dr. B prescribed this prior to our Disney trip) but I was afraid of the possible herxing with our trip and then school beginning. She had been taking augentin XS as a prophylaxis. We are on this new combo for only 4 days. My husband has been researching IVIG (we have never considered it an option or necessary before). We have an appt with Dr. B on Oct. 20th. We have not seen an LLMD yet for the Erlichia & Bartonella. Anyone else ever seen tics or OCD/anxiety dissipate, with one replacing the other. Thanks, Amy