AmySLP

Must have been responding at the same time as T. Mom- so glad to see our responses include the same info.

Although it is bittersweet, I'm glad you found this forum. We all have stories similiar to your own & in that you will find support and excellent advice here. It is very late here so I won't go into much detail as I need to get to bed, but I think most would agree here that in the meantime, while waiting for strep titer results, ask your pediatrician to start your son on antibiotics as a trial (zithromax & higher does Augmentin seem to be the the meds that are most commonly used). Some kids do not mount strep titers (my daughter, after nearly 6-7 months of chronic strep with positive cultures, did not/does not mount titers, but has PANDAS & responds to antibiotics (3 years and counting). The titers are not diagnostic, the response to medication can be. Some would recommend a steroid burst ( I do not know anything about dosing on this,as we have never needed this, but others will). Also in the meantime, share where you are located & others can recommend PANDAS specialists who may be geographically closest to you. Take action- do not wait on the titers, other infections can also trigger OCD & tics. This is the greatest place to ask questions and find answers and support. Glad you found us, Amy

I have been so back and forth on my 4 yr old (my 7 yr old is clearly PANDAS with absolute onset). My little one has always been clingy, had sensory sensitivities etc, etc & i can only recall one episode of strep (IMpetigo) that occurred and things got definitively worse. Dr. B. treated her for while & then I pulled back saying I thought it was personality. Well, after some unbearable weeks after a Disney trip (my older daughter had definitive exacerbation on and following the trip) I decided to put her on some Zith. ( I am fortunate to have a stash) and she's a different kid. I still want to second guess myself, not wanting to have 2 PANDAS kids, but I can't deny the change in her behavior in a week's time. Meeting with my ped. tomorrow re: my 7 yr old, but will share that I medicated my little one with success so far. This is hard to swallow. The good news is that you recognized it and you know how to deal with it.

My daughter saw Dr. Latimer initially & we were set up with her colleague the day after (b/c we were in town from NY)to r/o RF. Her biggest concern was that we believe my daughter went at least 2 months with undiagnosed strep based on her med history. Didn't sound like this was routine at the time (that was 3 yrs ago) & fortunately my daughter's heart was unaffected. Amy

Always been on the fence about our youngest, whose symptoms sound alot liek your daughter. Her symptoms are so wishy-washy too (typical 4 y/o behavior or PANDAS), whereas out 7 yr old PANDAS daughter's onset was much more distinct after nearly 6 months of difficult to erradicate strep. Here's how I handled it this time-I put my little one on the ABX for a trial (I should say she was followed by Dr. B for nearly a yr. b/c he was convinced and had ABX in my stash for her just in case. I think it's hard b/c no one wants to have more than one child afflicted with this, but I am now relieved to have my sweet 4 yr old back, not the screaming possessed child I've had for a few weeks. We are only 4 days into zith with her. It was like turning off a light swithc with behavior change for her in 24 hrs after 1st dose. Can you trial the ABX with her-maybe with your pediatrician on board to give ABX for trial before seeing the PANDAS specialist? No sture how long I will keep he on the ABX. We're back in school, so maybe through winter. I still don't want to say she has PANDAS, even though her positive reaction to the ABX is hard to deny. Amy

My 7 y/o daughter began to have exacerbation while at Disney approx 2 weeks ago, despite prophylaxis ABX. Anyhow, this has progressed to nighttime waking due to bad dreams at approx 3 am each night, keeping her awake for 1-2 hrs. Twice now she's had some night time incontinence (we have only had this with one other exacerbation in 3 years dealing with PANDAS). Should I be considering melatonin? We changed ABX based on pediatrician's suggestion & her tics have decreased, as well as emotional lability. Hoping that we will all get a full night's sleep tonight. thanks, Amy

Dr. B's receptionists are more than willing to fax lab results. WE've done this with each set.

We live in upstate NY & have a backyard full of wildlife, so it's more liky that my daughter may have gotten bitten right here in our neck of the woods. I was told by an infectious Dis. Doc. in Albany, NY who treated in Rhode Island for several years, that deciding to test with Igenex was crazy b/c why would a doctor set up that lab in a state that doesn't even have lyme and tick-borne illnesses? I kid you not--that was the first thing she said to us. We saw her on consult recommended by our Pediatrician. We won't go back there obviously. Awaiting a return phone call from Dr. Jones' office to schedule initial visit.

My 7 yr old daughter was found to have positive bands for Erlichia & Bartonella (no lyme). We were prescribed the meds on Tues & I have yet to fill the rx. b/c I also felt/feel like there is no possibility. Then I think about how we have always vacationed in N. Carolina with my daughter, wheremy dad has had ticks removed from him and that her onset of this was there on vacation. We also definitively know that she had strep at that time, b/c it then took 6 months to erradicate. We did also take in a stray cat last year, in addition to our other cats, which were previously strays from the shelter. Considering all this, I guess it is possible. Like Jill's daughter, we were prescribed Bactrim and Zith. We do to Disney in a week and I am afraid to upse tthe apple cart, as things are pretty good right now (slight tics).

We are seeing an Endocrinologist tomorrow with our 6 yr old PANDAS daughter. Her TSH was elevated 7. (something) and last bloodword was 5. (something). Normal range max is 4.2. Our pediatrician set up endocrinology appt, but Dr. B feels that it is self correcting, as the number has fallen getting nearer to normal over a six month period. That lab work was not drawn during exacerbation where we are now though. Not sure what knowledge this doctor will even have of PANDAS and wonder if I will get any critisism of that dx. I will be printing the basic info for her just in case. Just wondering if anyone else has had fluctuating or any kind of changes/problems with the thyroid.

Mydaughter's only signs of strep were behavioral changes and then the scarletina rash, usually on her chest, but then sowing up on her thighs. Look it up on the internet for a picture. IF it feels rough and like sandpaper, its likely scarletina. It only comes from strep.

I would think you would need to get their paperwork filled out by your own doctor. You can call Igenex and request the lab kit, but then it needs ICD-9 codes (diagnostic codes) filled in by a doctor and sogned off on with license #. Now I know that Dr. B has ordered lab for my husband and myself for titers, however, when mine came up 700+ he could not write me an RX for ABX. Odd that he could write the order for those tests, but did not feel like he could prescribe. I would think that b/c that Igenex needs to be signed off on your own practitioner will need to. When all this started with my daughter, my husband and I did not have a primary doctor for ourself since ours had left the area more than a year before. It became apparent that we needed someone who understood PANDAS especially when we were always going to need them to test us and treat strep aggressively. Just in the last 2 weeks everyone but my PANDAS daughter in my house had strep. I felt so lucky to have a nurse practioner that actually wants to hear how my daughter is doing and is open to learning about PANDAS. Dr. B had recommended Augmentin XR the last time I tested high on the titers and she did not hesitate to order that again for myself and my husband when he developed symptoms of strep as well.

I slept next to her last night at my sister's house, but do not think she had the movements that she had the other night. Also, she was positive on bands 41 & 23 on the Lyme testing from Quest and I have orders for testing from Igenex, but after meeting with my pediatrician and an infectious dis. doc at his request, we chose to accept it as a negative. Maybe I need to get that drawn. My daughter is also about to see endocrinology on Tues b/c she has developed hypothyroidism (also an autoimmune issue). I definitely think it's neurological, that's why I'm thinking we should at least have some baseline neuro testing/imaging.

Do you think I need to see a "local" neurologist for that work-up or can my pediatrician order those tests and take the result s with me when we see Dr Latimer again in July? (we haven't see her in 2+ years; have been seeing Dr. .

In past exacerbations, my daughter has stood on her head or was constantly hanging upside down. This behavior began to re-emerge in the last 1-2 days. Wondering if I did the wrong thing by not doing the lyme testing with Igenex. My daughter was positive on band 41 & 23 with Quest. I have all the orders and paperwork for Igenex.

My daughter's primary issue with PANDAS is movement based. She is getting so much involuntary movement, that many of my colleagues who are PTs & OTs in adult care are questioning why I have not had a typical neuro work-up including imaging. They think I should be ruling out a tumor. My daughter has an extensive strep history. What do you all think? Dr Latimer was the neurologist who diagnosed her.

My 6 y/o daughter has been waking at night and coming into my bed. I am having problems sleeping b/c she is moving so much with twitch like movements in her head, neck, arms & legs. Her PANDAS is mostly movement/tics. Any one else see this?

Just wanted to add that I feel the same way when I tell docs that we see about the prophylaxis-they usually just glare and do not offer an opinion, but there face shows what they really want to say. Our pediatrician is wonderful, always assuring me that there are kids with other disorders (Cystic Fibrosis etc.) who take them for years and no one questions it. HE streses that this is the brain we are trying to protect here. My new thing with doctors (in fact we are seeing an endocrinologist with our daughter in Tues) is that PANDAS is similiar, if not on a spectrum with SYdenham's Chorea, which it is widely recognized that a prophylaxis ABX is needed. It seems to make them more understanding everytime.

This is exactly my problem! ALways worried if the benefit outweighs the risk of the ABX in the long term! HOwever, we have tried several times to take her off- Diagnosed PANDAS officially in April 2009 after 6-7 months of strep where we went back and forth on ammox/augmentin every other month until finally a covering pediatrician said that that had clearly been a failure and put her on Clindamycin-her symptoms began to resolve and were essentially gone for nearly 10 months, with mild flares with viruses May 2010- acquired strep-choreiform movements appear suddenly and she goes on Zithromaz-no real improvement until she goes back on clindamycin. We left her on ABX from last summer to a point this Feb. where I was traveling frequently and honestly my husband was not real good about giving the ABX. I thought it might be a chance to take a break, but the symptoms returned as always, and as always with new behaviors (in her case movements) We just had strep in our house (myself, my husband, my 4 yr old) and my daughter seems almost as bad as she was in 2008/2009 when this all started. I'm going to cal lthe doctor today b/c I think she needs to try CLindamycin again and see is we can wipe this out. I wonder if strep in hiding somewhere in her body that we are just not irradicating it with the Augmentin ES.

Can someone explain this to me? I know this has been on the forum before, but thought that it was not something to worry about. I've been using Stoney Field and see every flavor I have has it in!

Not sure if your daughter is a finger or thumb sucker or nail biter, but if so, this might explain recurrent staph infection in the mouth.

Just scheduled a F/U with Dr. L (2 years after initial dx). I really want a second opinion on this. My daughter was fortunate to get dx and treatment relatively early, with all my thanks to those on this forum. I don't know if that is why she is mild, but when you've had this shield of ABX for so long, it's hard to think about the potential of going back to a time when things were more problematic. I think it's because I am overwhelmed with having to sort out what to do next. She had an elevated TSH (thyroid) twice in the last few months, that now needs to be addressed. This was on the heels of 2 positive lyme bands, which, due to her current stable status, we have decided not to pursue further at this time. I feel like I am always challenged to determine if the need for long term abx in HER CASE, outweighs the risks. I am so appreciative of all of your opinions. Thanks so much, Amy

My daughter went for 6-7 months on and off low doses of 10 days of penicillian alternated every 3-4 weeks or so with standard doses of AUgmentin-it was during those months of strep that was difficult to erradicate with standard ABX treatments that she developed PANDAS and her symptoms gradually worsened. Finally a different pediatrician saw her and prescribed Clindamycin to fully erradicate an infection that had been there for half a year. I would think treating with the Zithromax first would make more sense.

Vickie, My daughter has remained strep free on the ABX. SHe was having a few months of exacerbations, but then I found that I had a high ASO. I got treated and she is doing quite well. I am struggling with taking her off completely or tapering the dose. Dr. B felt it was necessary that she be on the prphylaxis for on year solid and we are at that point. Does anyone just treat the exacerbations when their child responds favorably to the ABX? In other words, episodically. My daughter has, in the past, gone without ABX for nearly 9 months in remission w/out ABX & was strep/PANDAS free until dx with strep (that was Summer 2009- spring 2010--she was 4 1/2- 5 yrs old). Prior to that she was on the ABX on and off, just treating it episodically, but with each backslide she would have increased symptoms and new behaviors. I fear that not having her on anything may possibly lead to more significant problems if she contracts strep, but in the past treating her with Clindamycin has been successful in erradicating it. We have not found Zithromax to be very helpful to reducing her tics in the past. Also, she get significant discoloration on her teeth from it, requiring us to get cleanings every 3 months. Wondering if anyone has had any success with Augmentin or some other penicillian at a dose of just a few times/week?

After nearly 2 years of higher dose prophylaxis of Augmentin (and at times zithromax), I want to try a lower dose ABX. Looking for the lowest dose that's working for others who are on more on the mild side PANDAS (my daughter has tics & choreiform movements as primary with exacerbation). She does so well in the summertime, when strep is not so rampant. Currently she is nearly symptom free-I'd say 95% or better. She is currently taking Augmentin ES (ammox 250mg, augmentin 400mg) daily. Thanks, Amy