worriedmommy

Hi there. I'm pretty new here. dd suffers from tics, and some anxiety, which we believe is due to PANDAS or PITAND. Tics are her biggest issue. When they first started a month ago they were literally every 3-5 seconds of so during waking hours....so thousands per day. She was on Amoxicillin for about 3 weeks with some initlal improvement. Her tics got much less spastic and severe in nature, but were still about every 10-15 seconds. However, she seemed to plateau after the 1st week with the Amox. Upon Dr. T's recommendation we switched her to Biaxin this past Monday. Aside from daily complaints of headaches, which I think may be related to the Biaxin, she seemed to improve a bit on Tuesday & Wednesday. Her 1 vocal tic was still fairly constant, but very quiet and her motor tics were so subtle they were hard to notice to be able to time. Then we made the "mistake" of bringing her to get her ears pierced. (She's been begging to get them pierced for months.) All was well until they took out the thing that shoots the earrings through your ear. She got super nervous and literally started ticcing like crazy in the chair. She couldn't go through with it, and to make matters worse she got very mad at herself for being to scared to do it. The day went downhill from there. Her tics remained strong in severity and picked up to every few seconds. In addition to that she probably asked 40 times if we could go back another day...to which we said "absolutely. when you feel like you want to do it, we will go back." That would hold her for a few minutes, and then she'd ask again!!! By this morning her tics were slightly calmer, but still worse than before the whole earring fiasco. The motor tics are calming but the vocal (throat clearing) one is constant. During her bedtime story it was every second. I guess my question is, would a stressful situation really cause tics to increase that much if the antibiotic is actually working? Am I just expecting too much too soon from the antibiotic? I'm just so terrified that we're not going to find a solution for her. It's heartbreaking to see her so out of control with her body. Any feedback from those of you who have been through this would be greatly appreciated. Thanks!

Does anyone know if your child can catch strep while taking Amoxicillin? My dd has had confirmed Group A Strep in the peri-anal area twice in the last 9 months. (We suspect she's had it many times in the past, but was never properly diagnosed.) Anyway, she's currently 3 weeks into a course of Amoxicillin, 1000 mg per day, and last night she complained of soreness / irritation in the peri-anal area. I looked and it is fire engine red with some red raised bumps. It looks very much like it had in the past. I would have maybe thought this was yeast (although she's also taking Culturelle probiotic to prevent yeast), or simple urinary irritation from an acidic food...but my son, who I bathe with her, also complained of the exact same thing last night, and his bottom looked exactly like hers. So,I'm doubtful about the yeast as he is not on any medication. I guess what I'm trying to determine is if dd could even have a GAS infection if she's been on Amox for 3 weeks, without any missed doses.

So, can just exposure to a cold also cause an exacerbation of symptoms? I'm curious b/c dd has been on antibiotics since the Feb 15, and up until this past Saturday (Feb 27) we were seeing some improvement. Then things started going downhill FAST. Tics back to every 1-3 seconds. My dd is healthy, but her increase in tics came on the same day that my son woke up sick, threw up, croupy cough. He denies a sore throat, but has had asymptomatic strep in the past, so we're getting him cultured today. However, if it's not strep, does this rule out that dd's increase in tics was a result of being around ds's illness? So confused...so frustrated...

We tried epsom salt baths for 5 days, but I stopped them...don't know why exactly. Do they really help? Is it something that should be noticable right away, or does it take a number of days?

I'm new here. My 5 yr old daughter started with tics a few weeks ago...sudden onset from nothing to thousands a day. Over the past few weeks we've been trying to pinpoint a trigger. We're already looking into the PANDAS theory as her sudden onset conisided with an outbreak of strep at her school. What I can't understand, however, is why the tics seem to not bother her if she's talking or moving around. (They NEVER interfear with her speaking). It's when she tries to sit still to do school work, watch TV, eat a meal or snack, listen to a story, or color...they go out of control. Her poor body just jerks and tics away. However, the minute she falls asleep, they stop. Is this normal of Tourette's to have the tics increase while still, and then go away completely during sleep?

My daughter is 5. The first tic she ever had was in Nov 2009 when the tic cough started. (At the time we didn't know what it was...only that it was a repetitive single dry non-productive throat cough that she would do thousands of times a day, yet it would disappear as soon as she fell asleep.) It wasn't until the motor tics that started all at once on 2/7/10 that we were certain she was having tics. They started so suddenly though. Even the cough...she went from nothing at all to ticcing every few seconds all day long. Not sure if this is relavent, but my dd has always been "ants in the pants". She just never wanted to sit still. Also, never really a cuddly child. Nothing that ever looked like anything I'd call a tic though until what I've explained above. Also, no OCD symptoms or separation anxiety. A couple strange things since the Feb 7th onset though is that she has been having nightmares every few nights, and 3 times over the past 3 weeks has been panic stricken that she cannot swallow while brushing her teeth. I've been there all 3 times, and she literally goes pale, eyes open wide and hands go to her throat. No feeling of this while eating though.

I'm trying to determine how much improvement to my dd's tics should be expecting to see from antibiotics? For those of you that don't know, I'm a newbie here. My daughter started with what we now believe to be a tic cough back in Nov 2009 after 5 days with a high fever. (She had previously had 3 confirmed Group A Strep (both peri-anal & throat) cultures since July 2009.) Anyway...after 2 stints on antibiotics (Amox & Augmentin) in Dec & Jan, both of which showed dramatic reduction of the cough the 1st time and complete remission of the cough the 2nd time, she had an explosion of motor, and one vocal throat clearing tic occur on 2/7/10. She literally started ticcing every 3 seconds the entire day...until she fell asleep, when everything completely stops. (I should note that while she did not have strep on 2/7/10, 11 of the 22 kids in her kindergarten had confirmed strep cases in the week leading up to and the week following her sudden onset of these tics.) She's currently on day 13 of 1000 mg /day of Amoxicillin, and is doing better than when she started...but no where near where I hoped she would be. We are trying to find a pattern as to what is aggrivating her tics...and so far it appears to me that if she is talking or moving around, the tics cease. It's when she has to sit still and be quiet that they explode....for example, meal time, watching TV (which we've cut out for the time being), bedtime story time are the worst. Tics are every 1-3 seconds. They all start with her pushing her stomach out and then sucking it in forcefully. This causes her shoulders to shrug, her neck to extend, and sometimes her mouth to frown and eyes bug out. She almost has a look of panic on her face. However, if she's talking the tics seem to stop and do NOT interrupt what she is trying to say. Is this typical to still have bouts of ticcing that go every 1-3 seconds 13 days into antibiotics? Could it be that she needs a different antibiotic? We're still not even sure if this is PANDAS, Tourettes', or something else. I just feel that something, other than genetics alone, is causing this, and I need to find out what. During long bouts of ticcing my dd actually complains that her "tummy hurts" but she just can't stop the stomach jerks.... I want to cry

Can anyone explain why PANDAS kids have an exacerbation of symptoms when strep is in the classroom. Do there symptoms pick up if they catch strep? I ask b/c my daughter had an explosion of tics a few weeks back (never been dx with tics, PANDAS or anything before), and come to find out that 11 kids in her classroom had strep. 3 of the 11 cases were confirmed prior to her onset of tics. Don't know if my dd actually caught strep b/c she wasn't cultured and she is currently on day 12 of Amoxicillin as a preventative measure.

What is the best antibiotic for PANDAS? My daughter was perscribed 1000 mg of Amoxicillin per day for 30 days. We're on day 12, and while she's better than day 1, she's not anywhere near "normal".

The neurologist we're going to see is Dr. Alcy Torres, at Children's Hospital in Boston. I saw on another post that he is treating some other PANDAS patients with IVIG, so my hope is that he is able to accurately differentiate PANDAS & TS. All of dd's past confirmed strep cases were done by swab that went out for culture. It was just the recent ASO Titer test (taken days after the motor tics started) that was a blood test. The pediatrician did it after I questioned PANDAS given dd's history and the strep outbreak in her kindergarten class. He peeked in dd's throat and saw it looked OK, even though she said it was sore. He told me that a culture wasn't necessary b/c the ASO titer test would tell us if she had strep. ---Yes, I've since learned that ASO titers don't rise until 4-6 weeks after infection...and don't rise in all patience. I could kick myself for not having him culture her. I just didn't know then what I know now. At this point she''s 11 days into 1000 mg per day of Amox, so my guess is that if we had her cultured now it would come back negative even if she did have strep with the rest of her class. I will look into Mycroplasma Pneumonia. I've never heard of it before. Any details would be appreciated. While I know that tics cannot be stopped with bribes, I found it interesting since it was while on antibiotics that she was able to stop it when bribed. Weeks prior, when not on antibiotics, we had tried bribing...including piercing her ears (something she's been begging for), with no luck. Thanks for your feedback so far. I have been scouring through old posts and am definitely learning a lot.

Hi there. I'm new to this forum...and also very new to PANDAS (or what we think is PANDAS). My dd's story is as follows... As a baby she got many ear infections and had tubes put in and adenoids removed at 22 months. Then at 4 years old she had her tonsils removed b/c they were huge & causing sleep apnea. --Up until last year, I do not recall her having strep throat...although my ds, who is 2 years younger than dd, had it 3 times before he was 3. I also have had it twice in the past 3 years...most recently in Sept 2009. Ds most recent strep was Scarlet Fever in April 2009. He recoverd w/Amox, and a week later dd started scratching at her privates. (She has had a history of itchyness down there since she was in diapers. Dr always said it was yeast, although Nyastatin never did anything to help.) By 33 months she was in underwear full time, and itchness/redness continued. I didn't understand since she was in undies. Twice dr perscribed antibiotics...and rash/itch went away immediately. (Didn't know until I just read her medical records that notes said suspected strep rash). Unfortunately, there were many other times (over an 8 month period while she was 3 that other Dr, blamed redness/itch on poor wiping, etc. Then when DD turned 5 itch/redness came back with a vengence!! She was literally clawing at herself. (This started within 1 week of ds having Scarlet Fever). It took 2 months for Dr to run a strep test to then realize she had Group A peri-anal Strep. Amox was perscribed, and she was better within days. --MAKES ME WONDER IF ALL HER RASHES AS A BABY WERE STREP!! I came down with strep throat in Sept 2009...and 10 days later dd was itching again. Had her swabed, and not only did she have peri-anal strep...but throat culture was also positive for GAS...with no symptoms. Again, Amox cleared everything up. (Whole family was also swabed to rule out a carrier...and none of us are.) The last week of Oct 2009, my daughter came down with presumed H1N1. Made a full recovery after a week, and was healthy as can be for the next 7-8 days. Then she came down with a 103 fever that lasted 5 days. She had no other symptoms other than the fever. We waited it out...and by day 6 she got get better. (In hind sight I wish I had brought her in to have her throat cultured. Sigh.... Within a week of her fever going away in November, she started to cough!!! This was a dry, non-productive, single cough that she would do over, and over, and over, and over...all day!! Literally thousands of times...and it would stop completely the minute she fell asleep. I brought her to the Dr who said it was a habit cough...to ignore, and it would go away. He also said Benadryl might help...which it did...b/c it put her to sleep! What did not help was ignoring...it did NOT go away. By early Dec 2009, I had heard the "sneezing girl" story, and it was my first time hearing of PANDAS. When I learned that this girl's sneezing was thought to be related to strep, I couldnt' believe it given our year of strep. I immediately brought her to the dr, had her throat swabbed (which came back negative) and asked for antibiotics. 3 days into the Amoxicillin, her cough was down to 1 every few minutes...dramatic improvement. Unfortunately, she caught a cold by day 5 and started with runny nose, junky cough, etc...so that by the time she was better, her Amoxicillin was already done, and within a week or so her dry "habit cough" was back in full force. By Dec 31 I brought her back to the Dr, at which point they said the cough was likely a tic, and this could be the onset of Tourettes. I was devastated by this news! Over the 4 day New Year weekend we decided to go wheat/gluten free, just to see if it would help. For whatever reason it did. There were a couple of days she only coughed 20 times. We brought her to the allergist on 1/4/10, and had her tested for wheat allergy...came back negative. Started eating regular diet, cough came back. --Still not sure what connection, if any, wheat, gluten has to this.... Actually just had gluten/celiac bloodwork done and are awaiting results. Allergist thought maybe silent reflux or post nasal drip was the cause...reluctantly, we started her on antihistamine & reflux medications. 2 weeks later, brought her to the ENT (to get his thoughts on the reflux theory). He wasn't convinced about her having reflux, but was intrigued that her cough went away in Dec while on Amox. Her perscribed Augmentin (14 days) to see what happened. By day 4 of Augmentin, I lost my cool and bribed my dd with money to stop coughing. To my amazement, she did immediately. Odd b/c we had tried bribing her to stop coughing earlier in the month, and she could not stop. Over the next 3 days she didn't cough, but started clearing her throught. By day 7 of Augmentin, we told her she could not cough or clear her throat, at which point she was able to stop all noises. We had silence for almost 2 weeks!!!! Then, Super Bowl Sunday came. My dd wen to a Bday party, and I'll never forget what happened. Multiple complex motor tics came out of no where. Knee bends, stomach jerks, facial grimaces, shoulder shrugs and neck extensions. It was heartbreaking. I found out the following week that there were 5 confirmed cases of strep throat in her kindergarten class (which started the week leading up to this b-day party)...the number of confrimed strep cases in her class climbed to 11 by the next week. In the days following the b-day party her tics ranged from every 3-5 seconds (yet went away when she slept). We have since started high dose Amox, and have seen some improvement (we're on day 11, and the tics range from every 5 - 90 seconds...and appear less severe). Although books, tv and meal time seem to make them pick up. Maybe b/c she's sitting still??? My dd's pediatrician, is dumbfounded. He's seen Tourette's...but never this severe so suddenly. We had her ASO titer done and it was normal (13)...this being said, we she had 3 positive group a strep cultures since July 2009. We're currently awaiting seeing a neurologist in Boston who specializes in PANDAS. Any insight any of you have would be greatly appreciated. As a parent I so desperately want this to be something we can treat and make her better. Not that PANDAS is something you want your child to have, but at least there is treatment...so it seems a bit less hopeless than a dx of TS. This is all so new to me, and has completely turned my whole world upside down. Since we don't even know what her dx is, my brain is going in every direction. Does this sound like PANDAS to you parents of PANDAS kids? If so, any advise when seeing the Neurologist? Thanks!!