AmySLP

In charting my daughter's behaviors on Augmentin ES 600mg BID, I am noticing distinctly a ramping up in symptoms on day 7 or so of the current bottle (If your child has taken this you know it's only got a "shelf life" of 10 days when mixed). I am starting to wonder about the 10 days b/c this is the third or fourth cycle that I've noticed this. My daughter has been 95% symptom free with the exception of these last few days (tonight on day 7 she has vocal tics, pinkie finger isolation & movement and an increase in standing on her head). If it's like the last few cycles, she will improve again drastically when I get the new bottle mixed on Saturday. I did ask Dr B. & he hadn't heard that from anyone else, so I have been tracking this closely. Anyone else found anything similiar?

I would also agree to call him. I have had great phone conversations with him even prior to my daughter seeing him. I'm sure he can give you info on where you stand w/ insurance & can discuss with you your child's increase in symtpoms. Good Luck, Amy

From a speech therapist's perspective this is very interesting to me. When thinking of other disorders related to the basal gangia & Dopamine, for example Parkinson's Disease, one of the hallmarks & initial symptoms is voice changes-particularly reduced volume. I would love to see how many kids have these voice changes (particularly low volume), although I think it's probably hard to differentiate it from changes in children's voices throughout childhood, which happens as a result of normal changes in the vocal tract as they grow & mature. My daughter asked me a few weeks ago if she sounded like a boy. I thought the question was so odd & asked if someone told her that. She said that they hadn't but that she sounds different. I could not perceive a difference but maybe she's on to something. Amy

CLEOCIN generic for Clindamycin can actually taste GOOD if flavored with grape-lemonade flavor. A Target pharmacist told me this and she was right! My daughter took it twice over a year period & loved it better that the current Augmentin ES she is taking (we've tried all the possible flavors for it & she still doesn't like it) Anyhow, my then 4 year old daughter was treated with clindamycin after strep was not irradicated after months of ammox & Augmentin at typical doses (we hadn't even heard of PANDAS at that time). Anyhow after 7 months of strep and positive tests continuing following the completion of each ABX, a covering doc put her on Clindamycin, saying that it was indicated at this point as the other ABX had been failures. HE said it was more likely to get rid of strep that had become intercellular. It worked for her getting rid of the strep & all PANDAS symptoms which at that time was facial tics, vocal tics, emotional lability, mild OCD. Then she went to kindergarten 6 months later & then come December there was chronic strep in her classroom. She was doing well, I did not have her on a prophylaxis ABX & she did well until MArch of this year when her sister got a strep infection on the skin. This was the kick-off for where we are currently. Her doctor did a round of Clindamycin again (I can't recall the dose) but this time it did test her negative for strep but did not take away all the PANDAS symptoms. Witrhin a few weeks, more strep in her classroom and she came home one day with obvious choreiform movements. I asked the ped. to start her on Azithromycin knowing it had been successful with kids here (If I recall the dose was 200mg). This worked getting rid of maybe 75% of the syptoms, particularly the choreiform movements, but she had alot of hand tics at that time. We then saw Dr B for the first time. He switched her to Augmentin ES 600 mg twice daily (same as your son. SHe's nearly 6, 50 lbs. She's been on that dose since June 10th. She is 95% better. Dr. B suggested keeping her on it another month & then we'll re-evaluate for reductionof the dose longer term. Anyhow, I think the key is that every child responds different to ABX so it may be about trying a different one. I did learn my lesson though, my daughter will stay on a prophylaxis ABX for some time. I wil not allow her to go through another resurgence of PANDAS. I only pray that the ABX will be enough for her in the long term. At this point IVIG is not needed, but I hope that it stays that way.

Although my daughter does not seem to have visual/perceptual problems, I believe this was anticipated when the developmental optometrist dx. her with Convergence Insufficiency Disorder (this is essentually a focusing problem where one eye darts off in the opposite direction when the object being focused on gets closer to the nose) the summer that she had strep we could not erradicate and eventually lead to PANDAS. He felt that it's something to watch, no intervention b/c she was young. My husband took her back this year prior to Kindergarten & it was less so. (in fact the doctor told my husband he had more problems that my 5 y/o daughter & he's functioned just fine with vision-so maybe you learn to compensate for this over the years). Her reading is above age level and she is a very fluent reader. The doctor felt that she may have difficulty as a result of this when the print gets smaller. Anyone else ever heard of this disorder?

I had never heard this term before until Dr. B pointed out that it was one of the abnormal labs in our 3 yr old lab results. Is this elevated in other kids with PANDAS?

Thanks for all your support. My little one started ABX yesterday, so the waiting game begins. I think it will take a change in her behaviors for me to believe it's PANDAS and not age or temperment. Deep down though I feel that without treatment, she'd wake up one day with the same tics, choreiform movements, and OCD that we saw in our oldest when she was almost four. I do feel like a nurse doing the "med pass" several times a day with ABX, vitamins and probiotics to both girls-the good news is that my kids love medicine so they gladly stop playing to come get their meds. Thanks so much for your support, Amy

My nearly 6 year old daughter was dx. with PANDAS nearly 1.5 years ago by Dr Latimer. She showed such remarkable improvement on ABX that I really questioned if she had PANDAS, b/c her symptoms were pretty mild in comparison to others and she was young (3 yrs, 10 months at onset of symptoms, with Diagnosis at 4 1/2). Anyway she had a major exacerbation this year after much strep in her Kindergarten classroom and her 3 y/o sister having strep infection of the skin (impetigo). Currently she is being followed by Dr. Bouboulis and is 95% symptom free on Augmentin ES 6oomg BID for 5 weeks now. This brings me to my nearly 3 1/2 year old daughter. We mentioned to Dr. B last month that we were beginning to question if she also had PANDAS, in the very early stages, or was it her age, temperment, birth order etc, etc. Dr. B told us to make an appt for her this month and ordered the same panel of lab work. Anyhow there were labs that were elevated and in combination with behaviors (sensory integration problems, emotional lability, meltdowns/rages, separation anxiety/fear of being alone) makes for a compelling case. He recommended trying her on the same meds and tracking her behaviors-he really feels that she has PANDAS as well. I am really having a hard time accepting this. I have been more vigilant, noting her behaviors, but really trying hard to write them off as just that, "behaviors." To hear a doctor say there is enough compelling evidence for PANDAS, is hard to digest. Did any of you feel you were trying to deny that this existed in your other children? I will start her on the meds tomorrow when I fill the RX, as we just arrived home from CT. I have such mixed feelings about it~yes, it's be nice to get her behaviors under control if they are due to PANDAS, but to think of going through this with another child is just heart breaking. I'd love to know how the diagnosis was made and what your feelings were on subsequent PANDAS dx. in your other children. Thanks for all your support. This forum is truly a blessing.

Although I can't speak in regards to the Lyme, I can tell you of my experience with Dr. B. He does not jump right to IVIG. I do believe he'd recommend a different antibiotic (other than ammoxicillian) and for a longer duration first for your son. My daughter, nearly age 6, has been on Augmentin ES 600mg twice daily for a month and we see him back this Monday. In the months prior to this, she was on Clindamycin & Azithromycin, but did not have much success with these eliminating symptoms. Dr. B felt that if she did well on the ABX alone, he'd recommend continuing these for at least 1 year before trying to wean her off. She's 95% better on the ABX, so I'd imagine he'll be suggesting continuing with that based on our prior appt. I know there are many others on the forum who will have wonderful suggestions for you. Hang in there! Amy

I have called to leave messages for Br. B on two occasions and he was available to talk to me via phone immediately. I know he has morning office hours on Sat-I think at the Darien office, have you tried calling him? If not, try on Monday, he's at the Stamford office (I know b/c we meet with him for a follow-up visit that day). Good Luck, I hope you can find some answers. Amy

T. Mom thanks for sharing the posts-they in turn lead me to other links that were very informative. I will have my husband calculate my daughter's weight into Kg for me (he's a dietitian) so I an make sure she's not getting too much clavulanic acid/day. I would hope that the doctors would have factored this into the dosage. JAG 10- thanks-she's doing welll and we'll se Monday what Dr B. says for our f/u visit. Unfortunately we had all the lab work drawn on our 3.5 y/o daughter too and she will have her own appt time with Dr. B on Monday-SHe had a skin infection that tested positive for strep in May). I really don't want to even believe that she has PANDAS too, but it's getting hard to ignore. SO we'll see-this is the same age that our 5.5 y./o started showing symptoms. Thanks for all the support as always, Amy

I went to get another 10 day supply of Augmentin for my 5.5 y/o daughter per Dr. B's Rx (We see him back again Monday). Anyhow I mention to the pharmacist that I another 10 day suppy of the Augmentin XR and he corrects me that she's on the ES. He told me that XR only comes in pill form and is 1000mg (she is taking 600 mg BID). The good news is she's probably 95% better than she was a month ago. Anyone else's kids taking this ES & if so, does that mean Extra Strength? I guess I thought the XR was preferable???

Im response to #2-My daughter had a rash that after being treated with various topicals without any change, was eventually cultured and found to be strep. So I said yes, hope that was right. About siblings-My husband & I have jokingly said maybe she has PANDAS too regarding my 3 y/o daughter when her behaviors have been really extreme. She has had sensory problems for which she received OT, but these have heightened again since her d/c and is extremely clingy. She has an extreme temper which escalates so quickly. I always thought it was just her personality. She had never had a positive strep until this past MArch with an area of Impetigo which was found to be strep when cultured eventually when nothing else worked to get rid of it (so similar to the story of my 5 y/o daughter). Dr. B thought strongly about testing her with the full work-up of lab work and I dragged my feet just getting it drawn last week. He created a chart for her and part of our re-visit appt with him next week will focus on her. I can't stop praying that it's just personality, as I can't imagine battling PANDAS with a second child.

My PANDAS dtr. always got a classic scarletina rash on her chest. My 3 y/o began with this rash this am, but not quite as low as I've seen in my other daughter. Also I have never seen this rash on the neck and face primarily~ Have any of you? I was first suspecting heat rash-but it's not that hot today & to have it all day into night now? We have labwork orders from Dr. B on our younger daughter, as it's been hard to determine if her behaviors are age/maturity related or if she also may have PANDAS. Anyhow this is the first rash like this on her. She has no other classic strep signs but my older daughter never did either with the exception of the rash. My little one did have impetigo a few months back that we suspect jump started my 5 y/o PANDAS symptoms again. I should say that my PANDAS dtr has been on ABX for about 7 weeks now w/o significant improvement. Thanks, Amy

No, my daughter's last postitive strep was early May. But prior to this in April 2009, she had had strep since July of 2008 that was difficult to erradicate. Overall she had strep postives rapids or cultures 6 times in 8 months, being on ABX for 7-10 days and then testing negative only to test positive a few weeks later. She had titers drawn twice during that period, the last one being in April with again no rise in titers. So it just doesn't happen for her....

Here's what I don't understand- if a person is immune deficient (my daughter is) and doesn't seem to make antibodies efficiently in response to strep bacteria, then why would they be able to make the antibodies that cross react w/ the basal ganglia? My (poor) understanding is that the antineuronal antibodies are antibodies against strep antigens (a normal immune response to it) that then activate receptors on basal ganglia cells. Peglem~ THis is exactly what I've been wondering too! My daughter has had the titers drawn three times-all within months of many, many positive rapids and cultures. I wanted Dr B to explain the same to me at our next appt in July. If you don't make these antibodies, as evidenced by the low to non-detectable (my daughter last time was ASO 5, Anti-Dnase-0 (undetectable) then how/what attacks the basal ganglia. DCMOM-there is currently a rather large thread on strep pneumonae, with some pretty interesting answers/explanations to all this. I don't know how this works, but it makes sense to me to some degree b/c I never undertsood why my daughter had strep 4-5 times before the age of 1 year (1st time at 8 wks old). Either she didn't get the antibodies from me (b/c I don't have them either-may explain my childhood of frequent tonsillitus and T&A) or she could not build an immune respse to them at that point either. All other markers for immunology were high, explaining her good health other than non-symptomatic strep (only PANDAS symptoms).

I will take a stab at this as my daughter has the same. Very simply- these titers indicate that there has been history of strep infection. Some children have very unusually high titers (type 1 PANDAS) and some little to no titer rise (type 2 PANDAS) per Dr. T's categorization (posted a few months ago). Rises in these titers are not necessary for a dx. of PANDAS, as I believe still seems to be the thinking of some docs. who really don't have an understanding of this disorder (we were told this by two docs-a pediatrician & an immunologist). Now the question of why some children do not have a rise in titers despite documented strep positive cultures-per Dr. B- in my daughter's case she is not mounting an immune response to the strep, therefore her body does not produce these antibodies (the opposite of those PANDAS kids who have hyper-immunity and therefore unusually high titers). She has Selective/specific Immune Dysfunction to strep as we just learned from Dr. B last week. Has your child had a more extensive immune system work-up? That may give more information. I am sure you will get some excellent more scientific info from the parent experts on this forum. I owe everything I know about PANDAS to them & I continue to learn much more everyday.

It is a "standard" vaccine with four doses. I happened to add my daughter's vaccine record to her PANDAS binder the morning of our appt with Dr. B-and it felt great when he asked if she had had the four doses and I had the info right there. I was worried b/c I spaced her vaccines considerably, but he said it didn't matter as long as she had gotten the 4 doses.

Sorry, I couldn't find the thread with any efficiency either; it might have been a tangent off another line of inquiry. Someone replied a thread of mine the other day to tell me that Zithromax/Azithromycin has anti-inflammatory properties whereas the Augmentin XR she is on now doesn't. That was news to me so I did start ibuprofen as recommended a few times per day (so far no improvement but it's only been two days). Hope that helps, Amy

Faith- maybe it's my background as a speech-language pathologist having worked with patients, parents and families for nearly 10 years that makes me feel that giving all the information up front will truly be to the best benefit of my daughter( and honestly to increase awareness about PANDAS). I have evaluated and treated many children over the years who, in hindsight, having not known about PANDAS then, makes me wonder if they were suffering this disorder. As SLPs we make referrals to physicians and other specialists when we suspect a problem. WHen a parent decides to "let me in" and give me the whole story, I am much more lilkely to be able to treat the whole child (not just their communication or feeding disorder). I have led many parents toward diagnosis of various disorders, most often, unfortunately, being Autism. I have many colleagues with whom I have shared my daughter's story with in hopes that they will remember it should they encounter a child with these symptoms and this has worked to our benefit as well-leading us to specialists and doctors and connecting us with families we wouldn't have known of otherwise. Just today a colleague of mine, a dietitian with whom I just shared my daughter's story, forwarded me an e-mail she got about a free web seminar on probiotics by a specialist in this area. IN the beginning of all this for us, sharing my daughter's story with others lead me to learning about PANDAS-a mom of a child (who happened to be a nurse practioner in the school setting) I was working with has a daughter she suspected PANDAS in & she gave me the NIMH info sheet on PANDAS. I just sent her a thank you card b/c really had that conversaton not happened, I wondered where my daughter would be today-probably not diagnosed with PANDAS. People are always so worried about labels, but this is what gets kids services. I chose to be up front with my daughters teachers and administrators from the beginning for her sake and maybe hopefully to get them thinking should another child present with similiar symptoms. I want them to know what to expect and how to respond should they see these behaviors. Currently I work in a medical setting. I spend much time reviewing histories, I want all the info upfront to decide how to proceed, it gives me a clear picture of the person in front of me. I believe those we entrust to educate our children we should be able to trust that giving them info on our children will be used soley for our children's benefit-in my experience that has always been the case. As always though, everyone's situation is different. I think each family needs to decide what is right for them based on their child and their education system.

If we all asked one teenager to rally their friends on FB think of how many votes that could get us!

I have been posting about my daughter's new behavior, standing on her head. I did e-mail the teacher about this Sunday night, as I thought my daughter might try this during periods of unstructured time. Well apparently she didn't-she saved it all for when she walked in the door. I could hear the vocal tics from the driveway as she got off the bus. She went upstairs to use the bathroom but I found her lying on my bedroom floor, legs and bottom high of the ground in a modified headstand. SHe preceeded to constantly do so until we had a leave for a school event 2 hrs. later. At school she had no behaviors or tics (it does appear that her swatting movements and flexed fingers have subsided). but as soon as I got her in the parking lot, my child's lying on the ground in a complete melt down over being unable to use the monkey bars on the playground b/c we had to go home to eat dinner. All I had to do is mention her teacher or principle seeing her and she pulled it together enough to get in the car, but then continued the tantrumming all the way home. I do have to point out that we have not had problems with the emotional lability this bad for more than a year. Her teacher did let me know that she had two periods of crying over something that children did/said at school and wanted to know if that's what I meant by the emotional lability. Regarding the movements, the teacher tells me that she keeps her body more still than any other child. She is a good student, well behaved and academically excels, so I really imagine they think I'm crazy. She was also able to keep it together during prechool last year, but I chalked that up to it being a 2 1/2 hr program-she would then fall apart at my babysitter's house for the afternoon. Anyone elses child able to hold it together for school? Does fatigue play a role in this, making the end of the day worse than the start? (this has always been the pattern in my daughter's behaviors and tics) Thanks for your input, Amy

This alone got the diagnosis of Specific immune deficiency. Re-vaccinating will not make a difference in the case of a child with this, as they have already had four vaccines and in my daughter's case, more than 15 + strep infections. There has been plenty of opportunity for the antibodies to be made, apparently her body is unable to mount the immune response to this. Again, I'll take any input on this as I am trying to figure it all out as well, Amy

This post is so relevent to info we just got on our 5 1/2 y/o daughter. Dr. B tested 14 strep. pneumonae. My daughter was found to to have no immune response to 9 of the 14 serotypes. This led to a diagnosis of Specific Autoimmune Deficiency. He explained that the Prevnar vaccine alone should provide the immune response-she had four doses. She had strep at 8 wks, 3 months and two more time before 1st birthday. He explained that the reason some docs say babies can't get strep is that they should have immunue protection from the mother-it is likely that I have/had the same deficiency as she clearly did not have this protection. Her other immune numbers were excellent and she had titer rise with every other vaccine she received, some even higher response that the normal range. He explained that some children would have this same deficiency and never get PANDAS b/c he feels that there is a genetic disposition to it. Hope this helps, trying to figure this all out myself as well... Amy

I gave the ibuprofen just after school b/c she came home today, went upstairs to the bathroom and when she didn't come downstairs, I went up to find her in a modified headstand. Laying on her back on my bedroom floor with her legs and butt held high inthe air by her hands. When asked she came downstairs and continues to go into the handstand posture against the couch, ottoman and chair every few minutes. I gave her 1 1/2 tsp of ibuprofen-does that sound right? EAMom-she is taking 600 mg augmentin twice daily. Should I be calling the docs for medication for yeast or adding to her probiotic regimine. I didn't hear anything from school so I am assuming it went well. We have a school event tonight so I hope she can manage to stay off her head there. Thanks so much, Amy