AmySLP

We saw Dr. B last week for the first time. He spent about an hour and a half interviewing us, asking questions (some of which were difficult to answer b/c our ordeal has gone on for more than year). He has a really calm demeanor and I believe you'll feel you are in really good hands when you meet with him. My daughter has the same sort of swatting behavior-I've been describing it as swatting bugs. Last year she had the same tongue behaviors you describe (Dr LAtimer said they were choreiform movements) and eye tics-she has none of these now. We have been lucky to see 2 of the leading PANDAS specialists and you are definitely on the right track with Dr. B. Good Luck, Amy

yes, It seems that they are both on the same page in regard to treating PANDAS in children with Underactive Immune System/those who are immunodeficent on pneumococcal serotype testing with no rise in titers.

amy, same info on what? couldyou clarify? thanks Faith I edited the post...hope that clarifies things!

My husband and I attended a class on the behavioral program 1-2-3 Magic-it is quite a simple program (you can probably google it). What it did for us was reinforce the need for less talking and just immediate follow through on discipline. IT has eliminated most of the screaming matches when my daughter is really out of control.

Today was better than yesterday in terms of the number of times on her head or upside down, but not by much. Interesting on the yeast-I know that that can heighten the sensory behaviors (having worked with children as a speech pathologist). Allison has a dx of hyperacusis, as she had significant issues with hypersensitivity to sounds as a toddler/preschooler that I had an audiologist test her (and she has super-sensitive hearing in the majority of frequencies). Other than that-no other sensory issues. She did get some therapy through an OT friend of mine and ironically improved summer 2008-the summer that all this strep/PANDAS began as well. She has no other classic symptoms of yeast overgrowth- I give her a daily probiotic tablet. What else could I add? She has been on Cleocin/clindamycin in March, nothing until May and then Zithromax for about 3 weeks and now Augmentin 600 mg BID. In terms of the anti-inflammatory piece, I have thought about giving her Ibuprofen to see if this makes a difference-Does that make sense to try?? The emotional lability is out of control as well today, and she was not having these episodes prior to this weekend with the med change. As always, I welcome your input and am so thankful for it, Amy

Thanks for posting Dr. T's post- I am printing right now for my binder of info. My daughter is definitely type 2-immunodeficient. She had 4 prevnar vaccines and at least 15+ positive strep rapids or cultures in her 5 1/2 years and has not immune response to 9 of the 14 types that were tested. Her titers have always been nonexistent despite having had postive strep testing more than 8 times in a 6 month period in 2008/2009. We are now working with Dr. B and I feel even better hearing he and Dr. T give the same info. on how to treat kids in this "subclass" of PANDAS. Thanks again for posting this, Amy

Thanks for the suggestion of recording this. I have recorded all the odd arm & hand movements she's had and her eye & facial tics, but I wouldn't have thought to record this. Hoping it's gone today, but if not, I'll be sure to. I will call Dr. B this week if it continues. I hope this is one of those transient behaviors that ends soon! Thanks, Amy

My daughter has her first positive at 8 weeks old-symptoms were crying upon nursing and irritability. She continued that first year with 3-4 positive strep tests. It may be that she did not get the immune coverage from me, as we just learned that she has specific autoimmune deficiency in regards to strep. Dr. B explained that I may have the same, as babies are not ususally tsted for strep so young b/c they have that initial immunity from their mothers. Finally, a possible explanation to her early positive strep tests.

We got the answer to my daughter non-existent titers from Dr. B on Weds. You are right on that these kids with low or negative titers are b/c they are not mounting that immune response to strep. He tested strep types and found that she had non-existent immunity to 9 of those-despite havig 4 pneumoccacal vaccines which alone should have booster her immune response to strep. In adddion she's had 15+ positive rapid or cultured strep positives beginning at age 8 weeks and then 3 months of age. He assumes that I likely have the same low immune response to strep, as she should have had that protection from me, hence avoiding strep at such a young age. He did explain that there are children with the samelow immunity to strep that will never develop PANDAS, but that he feels that there is a genetic component to those kids who do. Very interestingstuff! I feel I now have a reason to explain her low/non-existent titers despite months of postitive strep tests. Hope this helps.... Amy

My daughter 5 1/2 was changed to Augmentin 2 days ago by Dr B following our 1st appt with him on Weds. She had been on Zith for about 3 weeks, but this had not rid her of her chorea-like hand movements an vocal tics. He suggested switching her ABX and seeing her back in a month to reassess. So here we are with this new behavior, initially chalkin it up to her just practicing gymnastics-but really, she must have been on her head more than 100 times today. Also severe emotional lability-none of which was present prior to yesterday. Anyhow, I couldn't even say if the hand movements are gone b/c she spent all day using her hands to stand on her head & we spent the day telling her to stop. This is nothing like she has ever had before. The emotional lability has not been this bad for more than a year. Would you think it's just this new med change? Maybe we just needto give it a few more days to kick in. Back to school Monday-she really needs to stop by then! mYhusband said she was standing on her head on the soccer field today too! Thanks in advance for your input, Amy

My 5 year old daughter has been on this twice for strep-I attribute it for clearing her of PANDAS symptoms the first time around for nearly 1 year. UNfortunately for her it did not work this second time around, however she had no issues from it. I stayed very consistent with the probiotics. Here's a really good tip though from the Target pharmacist-add the grape lemonade flavor to Clindamycin-My daughter actually LOVED it!!!! Amy

Dr Bouboulis wrote the orders with Upper Respiratory Infection as the Dx. for my husband and I to have strep titers.

My younger daughter had impetigo & just a few weeks later my PANDAS daughter relapsed after nearly a year of being free of strep & PANDAS symptoms. I blame our current situation of exacerbation of PANDAS on that skin infection-just too coincidental. Amy

My daughter is doing the same thing now-she bends her little fingers on each hand simultaneously and then usually brings them to her mouth or down past her mouth (looks like she's swatting bugs). This is a new developement for her and I've been wondering what it is a tic, a compulsion or choreiform mov't. This is happening with increased frequency over the last few days despite ABX daily.

My daughter is also on Azith. for the first time. Sh ehad been treated with Clindamycin previously. She is 5 1/2, 43 lbs and is on 200mg dose daily. This is day 17 of ABX and she has had a decrease in tics, but new compulsions have arisen during this ABX cycle-in addition to bedwetting two nights last week (1st time ever). On those same days the compulsions and chorea like movements were also ramping up. All of these have been pretty transient, lasting a day or two and then changing. We see Dr Bouboulis on June 9th and he wanted me to continue the ABX at current dose. He did tell me that these newer tics/compulsions do not tend to be long lasting-so far this appears true. Hope you have some success with the ABX soon, Amy

My 5 1/2 daughter has had bedwetting for the last 2 nights in a row now (she hasn't done this since prior to potty-training 3 years ago). My first thought was that I need to get a urinalysis to r/o UTI but then realized that she's been taking the azith prophylaxis until we see Dr Bouboulis on June 9. So I would imagine that this is not the problem. I know that this can be a symptom of some kids with PANDAS. I wonder if it could also be a sign of a possible yeast infection, although she doesn't have any other traditional yeast symptoms (I have her on alot of probiotics). In addition, she has been free of tics since a few days into the antibiotics, but on Monday evening had some strange behaviors and then I noticed some new tics. I'm not sure if that's that correct term for these, as before she had just eye blinking, mouth pulling/twitching, and vocal tics-pretty clear cut. Now she does what I'll call a bug swatting like motion-arms in the air, two pinkie fingers up, elbows bent, and then brings the right hand down to her chest level, followed by the left-she seems to always do this 3 times. She does still have a vocal tic-just voicing onset-kind of like a hum for 1 second. Last evening she sniffed each finger on her had in a cycle threee times, then put her index finger to her nose, pulled it dow through her lips-three times and then shoulder shrugs three times. She did this "routine" a few times while watching a movie. Certainly not constant, but intermittent. She has not exhibited her "typical" tics of the facial movements. So would you say these are tics or are they more OCD- like compulsions/obsessions? As always, I am so appreciative of any insight you all can share, Thanks, Amy

Just wanted to applaud Dr. B. He talked to me the other day on the phone even though my daughter has never seen him. Faxed me lab work orders, suggested ABX to continue until we see him on June 9th-amazing I thought I'd have to wait until fall for an office visit.

We started her on Azithromycin for 5 days at this point and her pediatrician wants me to call him today to talk about what we are going to do after this. I will try again to reach Dr. Latimer, but last time I spoke with her office staff they thought we needed to go back for a F/U office visit. She had recommended Azith prophylaxis. I was thinking maybe I should try Dr. B in Connecticut as this is closer for us. Wondering how long it takes to get into see him. I feel a little more unsure b/c with this return of PANDAS she has many more symptoms, much more pronounced than EVER bofore. Watching her last night was painful. She had more and more tics and repetitive behaviors as the hours went on- head nodding, biting her lip and then rubbing under her nose, shaking her right hand in the air, and that dance-like movement with her hands. I did give her a dose of ibuprofen & started the antibiotic last night. I hope that things are calmed down today so she can attend her class field trip-what timing! As always I appreciated your input, Amy

My 5 year old daughter came home from school today with facial tics and chorea-like movement of her hands (moving in a figure 8 pattern). SHe has had a throat clear, soft voicing sort of tic for a week (and I thought it was maybe allergies). She also complained of a mild sore throat last friday, Sat & Monday. I questioned a blotchy rash on her body the last few days & some pimple-like spots on her bottom since then as well. Her story in a nutshell. Allison was diagnosed with PANDAS April 2009 by Dr Latimer after nearly 7 months of resistant strep. SHe had no classic strep signs ever (except when she got the Epstein barr virus in the midst of all this). Her PANDAS symptoms were facial tics, throat clear tic, chorea-like tongue movements, emotional lability, repetitive behaviors, and fears. Anyhow, a new pediatrician saw her in March 2009 just 3 weeks before our visit with Dr Latimer and put her on Clindamycin. It worked and all signs of PANDAS began to disappear. Titers ordered by Dr Latimer in early April were normal, despite months of positive strep tests. We were so happy with her remission for nearly a year, until this past March when she was strep positive again only picked up because a hive like rash covered her body, so I asked the doctor to test. What would you have your doctor do? He's going to ask me so I want to be prepared. Would you test for strep? Would you ask for labs? If so, which ones? What antiobiotic would you use? I'm thinking Azithromycin b/c we have never used that before. Thanks so much, Amy

Just wanted to weigh in on this as one of the speech-language pathologists on the forum. Development of accurate articulation of /r/ and /s/ is expected by 90% of kids by the age of 8-these are some of the latest sounds to become precise in typically developing kids. So yes, these errors are very common in children without PANDAS. Sounds as though your daughter has a frontal lisp-the "th" for the /s/ and the addition of a lateral lisp, which results in "slushy"speech. Frontal lisps are developmentally normal whereas lateral lisps are an atypical error and rarely resolve without direct treatment. Treatment is effective, but remember these kids need to learn a new pattern so practice is key in between sessions. Also you mentioned an OT did the evaluation---speech sound errors are not in their scope of practice so I would encourage you to seek a licensed and/or certified Speech-Language Pathologist to eval and treat your daughter. PANDAS can cause chorea-like tongue movements in kids (as my daughter exhibited) making it harder for them to get the voluntary movements needed for speech practice. I feel that these would need to be resolved, if present, before expecting good results from treatment. Feel free to private message me if you have any other questions. Amy

My 3 y/o had a stubborn case of impetigo, that I believe led to my PANDAS daughter being dx with strep. The doc recommended a topical made specifically for impetigo- I believe it was Alabax. It was pricey but did clear the spot. amy

I do not know the details of your post from a few weeks ago. I do not know anything about EE, but I specialize in swallowing disorders/dysphagia as a speech-language patholgist in a medical setting. We do not deal with esophageal dysphagia in our scope of practice other than referring to a GI doc when we suspect it. But what I wanted to add is that if your daughter is having difficulty initiating a swallow, coughing, choking and/or complaining of food sticking in her throat, it may be important to know if the esophageal dysphagia is impacting her pharyngeal swallow (at the level of the throat). Should she have these symptoms and they persist, a modified barium swallow study/videofluoroscopy done with speech therapy and radiology present can give more insight and possibly treatment ideas relevent to this type of dysphagia. I am very interested in the symptom of dysphagia in PANDAS children. My daughter did not have this but did have a mild vocal tic, which as a speech pathologist I always described as an involuntary glottal sound, almost like a throat clear but not as effortful. Our vocal cords, along with our laryngeal area constrict when we swallow to provide airway protection. If a child has involuntary vocal tics and cannot control this, then it can be assumed that the same lack of volitional control needed when swallowing to protect the airway can be interrupted by an involuntary tic. If I can be of any assistance in this area, please ask away. I have always been so grateful for the help I have received on this forum and would love the opportunity to share info that I may have. Amy

Colleen, The ped did the swabs at the same time-I've never seen anyone do them separate (but in their defense-my daughter flails, kicks, cover her mouth-it's really a struggle to get them). CAn't wait to tell my doc that everyones opinion is just simply he didn't get a good sample. He saw the faint line and pointed it out to me. It was there. My ped thought maybe we should do titers to see if she's had strep in the last few months to confirm. Do you think it's worth it? Right now I fininshed her ABX but do not have her on anything else. Thanks, Amy

So simple...it's probably that he didn't get a good swab. It's not like she sits there and just opens her mouth. After minutes of screaming, crying, covering her mouth with two hands, we lay her down on the table and he struggles to get the swabbing-I think she even kicked him. I wonder if that is why the rapid test appeared so faintly.

yes, PANDAS symptoms are gone. THe only thing is the new onset of the scarletina rash.