AmySLP

I'd simply recommend not wasting time and money with all these specialists that are not PANDAS specialists. There are lists by state that will be of help-I'm sure someone can post where to find them or simply post the region you live in and I'm sure people will make suggestions. Just a quick comment on that barely present rapid-Our pediatrician told us that these are like a pregnancy test-any line, no matter how faint is a positive. Just to be sure, insist that all streps that are negative are sent out to be cultured.

My daughter will come and go just the same---was there tonight though! Wonder if that is more typical of yeast?

I'm intested in this too-as my 4 yr old, who we are questioning PANDAS, does have this. Exactly what you say-like a red ring that circles the anus but with the white space in between. The same thing happens in her vaginal area. Been unable to confirm strep on this kid, she's had this ring off and on for a while. I put Desitin on it every other day or so, and it lightens but never goes away. She wears a diaper at night as well. She gets the same rash that S&S described on her bum or just above, and it itches her. My PANDAS 6 y/o always got Scarletina rash, but hers was always classic-on the chest/torso and not itchy. I will be doing soe internet research on the perianal strep too.

I think the letter sounds great...We are lucky to have the same sitter since my 6 yr old was a baby. SHe lived through the PANDAS onset and months of ###### afterward. Didn't realize how lucky I am to have her until I read your letter. SHe's great at noticing tics and such and giving me a report of the day when I arrive. My daughter is even more compliant with her taking meds (the ritual doesn't take nearly as long). I think your letter gives a great layman's explanation. Hopefully this sitter will get on the same page.

It didn't put that when I typed it-how come? Jill, I wondered why in your PM to me you did that). Certainly was not my intention! Dr. "cool shades" should read Dr. B

I can not always figure out is my daughter is having complex tics or compulsions at times, so this makes absolute sense to me. When I spoke with screener at Yale I was just told that OCD had to be primary. I did not feel that they were saying that those with tics were excluded, just couldn't be primary, as my daughter is.

Just a comment on the use of LT ABX- I have felt the same way, very unsure about how safe this is. My pediatrician assures me that there are other illnesses that children need to use prophylaxis ABX, such as cystic fibrosis. Every appt with him, he makes me feel better about them, reminding me that this disease affects her brain. PANDAS is as serious as many other illnesses requiring daily ABX. ABX have worked for my daughter for almost 2 yrs. I am wondering if she needs a switch from Augmentin, as some backsliding is occurring with her currently. We see Dr B again on MOnday. Never had an experience of having to wait more than a few minutes for him, and this will be our 5th or 6th appt. Wondering about your 3.5 year old boys. Are they having obvious symptoms? My 4 yr old is so on the fence, with some PANDA-like behaviors that are questionable as just being personality or growing up in a house and modeling behaviors that are like our definite "PANDAS" daughter, who is 6 1/2 years old. He's treated our little one before on trials of ABX, is that what your doing with your boys? Our 4yr old's only odd lab, was a high cd3, the autoimmune marker. She does not have the strep history, as our older daughter does. Love to know the situation with your younger kids. My pediatrician feels this is a big strech to say our youngest has PANDAS (and our pediatrician is a believer). He just feels-in his own analogy, that when your a hammer (Dr then everything looks like a nail. I wish this were more back and white, a more definitive yes/no test for PANDAS. All I know is that I wonder every day if both my girls have this illness. We seem to have a family history (my Dad, myself & my sister). I do believe there must be a higher rate within siblings. PM me if your more comfortable rsponding that way. Amy

Thanks for the replies. She seems to have them the more relaxed she is, when the rest of her body is still. AS she was falling asleep next to me last night, I could feel her right leg move/twitch, then throat clearing, followed by the finger movements. IF she is engaged in gross motor movement, these movements appear non-existent. Would these suggest a current infection?

My daughter, who is backsliding currently, although on her ABX regimine, has return of choreiform movements in the right hand/arm-"piano playing," flailing arm, looking through her curved hand as she holds it up in front of her eye, and her signature curling her pinky finger and "swatting the bugs" movement. These are the best ways I've learned to describe these movements & are all in her dominant right hand, with minimal movement-more piano playing-like in her left. Her throat clearing tics and some choreiform movements of the tongue are also present. IS this pattern what you've seen in your kids? We see Dr B for a f/u visit on Monday, so holding on to see what he suggests. MAybe it's time to switch ABX or up the dose (whereas we were hoping to cut the dose, as she'd been doing well for months). Looking forward to reading your input, Thanks, Amy

Still here....find myself coming back recently as I wonder if my now 4 yr old DD is developing PANDAS in the same way as my now 6.5 DD did when she was 4. My oldest is on an ABX regimine, with backslides here and there. Took a break from the board when things were a bit more settled here,but things are ramping up currently in both my girls.

I've really been on the fence about my 4yr old daughter &PANDAS, but these rages are just what I'm unable to write-off. SHe goes from being easy going and sweet, to a raging out of control child in minutes. Like all of you, I have "battle wounds" to show it (currently 3 large scratches on my face). I can see where the exorcist idea comes about, b/c that's just it-she's not even herself during these, but then again, they are occurring so much lately, that they seem part of her. Just like S&S-she is perfect at school! Then I arrive and they have seen a few times how she'll be ready to leave and then suddenly lose it-it's exactly that something did not go right. She gets more and more frustrated as we try to figure out what she wants or how exactly she wants something done. This post has helped me decided to fill the ABX rx I have and track her behaviors over a few weeks. In addition to these out of control rages...she has nighttime incontinence and almost always pees her pants during the rages, sensory issues (intense thumb sucker, sensitive to loud noises at times, hates the wind, etc). She had OT for about 9 months as a 2/3 yr old which started after PT, which she had for mild gross motor problems. I just don't have the diagnosed strep hx on her like I do on my 6.5 yr old, who definitely has PANDAS. Neither of my girls showed titer rise (despite this being done a few times in the midst of my older daughter having dx. strep for 6-7 months). ALso my 4 yr. old did have elevated cd3 (38) and poor response to the Prevnar vaccine, based on the serotypes. Also notelworthy is that my 6.5 year old delevoped PANDAS at age 4 but again with many, many known strep infections over 6-7 months. I'm starting the ABX today and going to journal daily and see where we go with the rages. They seem to be about the only symptom that I can quantify in terms of how often she has them-in the past the bedwetting has not gotten any better with the ABX, but I realize that could still be age-based. Thanks for this topic-hearing about your childrens' rages has really helped me to come around that this may be PANDAS. Amy

In the meantime, I'd say yes, yes, yes to going back on ABX to keep the tics under control. Fo rmy dd 6.5, this is her primarly symptom and w/o ABX the tics get more and more complex with time off ABX. IF they improved, put them back on.

The Cd 3 was elevated (38- not sure what normal range is) and just re-tested...we see Dr. B back on March 28th. If Cunningham's test was a difinitive yes/no I'd do it, but we haven't b/c I fear she is so mild, that the results will be just as inconclusive as things are now. I'm open to any suggestions-thank you, Amy

Maybe you could test the 4yo for some markers of inflammation or autoimmunity--C3A and C4A (not an expert but think they test something like inflamation), or, of course, Cunnigham CamKinase?

I know for certain that my 6.5 yr old daughter has PANDAS-after nearly 8 months of strep at age 4 that was difficult to erradicate & onset of tics and emotional problems & OCDduring that time period, it was apparent. SHe responds to ABX well and if taken off, the tics return with a vengence. My question is my 4 year old daughter, who Dr B feels also has PANDAS, but I'm on the fence. She does not have that step history, a few bouts, but nothing like my other. SHe is however very extremely emotional, has sudden fear of being alone, has sensory problems, night time incontinence. I'm torn between is this PANDAS on some form of the spectrum or simply a needy 4 year old, whose grown up in a household with a PANDAS sibling. The only thing we do see in her labs are elevated Cd3 and poor response to Prevnar vaccine in terms of the serotypes. Trials of ABX for 4-6 weeks at a time have shown no huge improvement but I have not honestly journaled enough to catch small changes. She's my question...my older daughter is absolutely affected.

My DD 6.5 yrs old, has been on ABX tx for about 9 months straight now, with periods of a few months at a time the year and a half prior to that. In mid-Feb. we had a f/u appt with DR. B (we see him every 10 weeks on average) but I had to cx. as my Nana was ill out of state. I left to be with my family, cancelling our Dr B appt and thus running out of meds. I decided I would let it go and see how she did, as we had been planning a reduction as long as her symptoms had remained stable, as they had been for months. SHe stayed here in NY with my husband to keep her routine (and quite honestly it's a specific protocal to give her meds and sahe does not prefer for any one but me to give them). Well-WHAT A MISTAKE!! I had been gone 5-6 days at whcih time she had no ABX (Aug 400mg & ammox 250 mg, chewables). I returned home to pick her up to bring her to PA when my husband told me she was ticcing worse than ever, with new tics. Got the meds refilled and we are about 11-12 days back on the regimine & the tics are basically gone (except an occassional small vocal tic in the later evening)but we are still trying to get the emotional lability back under control. My Grandmother did pass & I wonder if some of the emotions may be that, but I have learned how valuable these meds are for her. I struggle with the same with my DD4 who has separation anxiety, rages, sensory issues, night time incontinence-Dr B has had us try ABX rounds 30 days at a time, but I don't see a huge difference in symptoms, but I'm beginning to think she may need longer to really see a difference. My 6 yr old responds so quickly each and every time she has a backslide within a few days to ABX. I think that it's so individualized. I know my DD6 will have to stay on these for some time. Amy

My children both had a film from liquids ABX that I could not remove-one dentist cleaning removed it & since have changed to chewable pills with no more staining.

My daughter has been taking prophylaxis ABX for nearly a year now. We have changed from liquids (after getting this spit back on me for days) to pills as soon as I taught her to swallow the pills cut small with pudding. She hates the pills crushed. LAst night it took nearly an hour to get her to be able to take the pills (which eventually I crushed!) Now she's asking for liquid again but I know it will not change the length of this whole process and I worry about how much she actually takes in after spitting most of it out. She asks me each night when she will be done taking pills (I never know how to answer that question so I try to change the subject!) I'm looking for your tips and ideas is any of you are dealing with the same problems. Thanks, Amy

After years of chronic strep throat & tonsillitis, in 6th grade I began to have joint pains-mostly in the legs and some anxiety/depression. (Prior to that was seen when I was in elementary school by an orth. doc due to leg pain as well-he said it was simply growing pains). I was dx at CHOP with fibromyalgia at 12. I ended up with a tonsillectomy the next year in an emergency situation where an abcess grew very large on the tonsil that it began to block my airway. I have no symptoms of fibromyalia now at 35-never did after my chronic tonsilitis cleared up. I am left with a touch of OCD (that type A personality) which comes along with anxiety. I have no doubt I had PANDAS....AS did my Dad (OCD, sick always as a child-wouldn't step on the cracks as a child per my 85 yr old grandma, who herself is OCD) and probably my sister, who ended up with joint pain in elementary school and some odd tics. She is now 27-chronic sinus issues, sore throats and recently tested for Rheumathroid Arthritis (no results yet)-I have no doubt this is hereditary through my Dad's family. Now both my little girls, 4 & 6, have PANDAS-the same as all of us before them-we just have a name for it now. So thankful that we are blessed to be in a period of remission (with daily antibiotics). Amy

Having my own issues with my 6y/o after school for the last few days. I've been debating uping her dose, but I haven't yet b/c she's up and down liek your son. We know of 1 child in the class with strep this week so I wonder about the reaction alone vs infection. What a difficult decision with the yeast issues-in my daughter's case she manages not to have yeast issues. Good luck-maybe being out of school for the weekend and watching his behavior will help you make a decision.

When the pharmacist looks at you as if you have an addiction to ABX, b/c you're there like clockwork every 10 days to have the bottle reconsituted. It's really bad when they even know which child takes which flavor!

Just got rid of the Panda bear PJs someone gave my daughter-REALLY? Not sure if it was coincidental or not-but they have been passed on to good will!

Due to the concern with Clav acid/lb -my daughter (50lbs) was on Augmentin ES, 600mg, which has less clav acid-2x/day thus 1200mg/day & eventually to 1x/day prophylaxis. Recently we switched to chewables (which we cut & she swallows) and to adjust for clav acid amt, she takes 400mg augmentin & 250 ammox. I would question the amount of clav acid as well based on her weight.

Just wanted to weigh in on the Alabax & Impetigo. My daughter did not respond to this med, as it is specific to the bacteria that causes Impetigo. When my PANDAS daughter started to have an exacerbation of PANDAS at the same time, our ped took a culture of the rash & it was indeed strep. Changed Alabax to an oral ABX for my little one. However, in my 5 yr old, kick started her PANDAS again which had been in remission. Just be aware of this in case it doesn't resolve with the topical.