TriangleNC

My son has PANDAS which has been in control now for almost a year since being on daily prophylactic augmentin treatment. He has a definite AD/HD diagnosis as well (more for inattention, focus, distractibility as opposed to hyperactivity). His developmental pediatrician wanted to try Adderal first, but we did not want stimulant medication being used. At his most recent visit with the doctor, he then wanted to try Straterra. It is a non stimulant, but we are not comfortable using this as well because of the potential side effects. I would like to know if any of you have every used natural adhd alternatives such as Attend by VAXA or Focus Formula by Native Remedies. If so, what kind of success did you have and are there any potential side effects? Thank you for any information or advice you may have!

We had the grunting tic (definitely not throat clearing) after a strep related sinus infection with our son. It lasted for several months and was exacerbated by other illnesses including mycoplasma. It went away and is on prophylactic augmentin from Dr. L. Have not heard it since.

Hi Anne. I sent you a private message. We are from the Bethesda, MD area and are now in Apex, NC. Just recently saw Dr. L in October. More info is in the PM. Stefanie

Hi! I am a newbie on this forum and have posted a few times, so thanks to those of you who have answered my previous questions. My son has been having pandas episodes for the past almost 2 years. We recently in mid October had our first appointment with Dr. L, who put our son on augmentin twice a day long term. We did see a decrease in anxiety level after about the first week and had not been having tics either. Our sons first pandas episode occurred due to a sinus infection caused by strep, and subsequent episodes caused by other infections (viral, myco. pneum.) in addition to strep. Dr. L said at the appointment that if he has flare ups that she would do a steriod burst. Last week Monday he had a minor cold with some pandas issues flaring up with it such as grunting tic, lip licking, crossing eyes, bed wetting, some minor meltdowns/tantrums (had been doing fairly well since starting augmentin). Cold is gone and pandas issues seem to be subsiding this week. My question is this (especially to those of you who may see Dr. L) - at what point should I call in to Dr. L to have a steriod burst done? I don't want to call in too soon, however I don't want to wait too long either. Not sure what to do? Also, Dr. L said that it could take a year or more for the brain to heal based on the length of time that has gone by for prophylactic treatment to be started (our peds would not start any long term treatment except for 4-6 weeks of antibiotics during a strep episode). What has everyone's experience been like as far as healing time on prophylactic treatment? Very curious to know since he is having many issues in school with math learning, writing, handwriting, memory which I know can all be related to pandas. Any advise will be greatly appreciated. Thanks!

My son uses the chewables and does not like the taste. The only way he takes them is by crushing into a fine powder and mixing with juice. He can tolerate that, but not chewing whole. Dr. L did not want to prescribe liquid because of the need to get the prescription every ten days versus once a month.

Hi. I personal messaged you earlier, but not sure if it went through. We are in near Raleigh, NC (Apex/Cary) area too. PM me if you would like.

I guess in my opinion I would hear what the ped. will say in the morning as to how long they would put your son on the antibiotics. Dr. L wanted ours on it prophylactically, but our ped. never did, even though he also agreed early on it was pandas. I think that was mainly because he was unsure of protocal for pandas - not that he didn't want to. That's why we went ahead and made the appointment with Dr. L anyways. We also wanted him to have a good neurological check from a great specialist. She wants to see our son yearly (as she does for all her pandas patients). We did start today giving our son a probiotic (Culturelle for Kids) per our peds. suggestion. That is all the supplementation we give him other than a multivitamin.

My son has been going through the same thing the past year and a half. Our son's pediatricians (we are near Raleigh, NC) are on board with PANDAS, but are still learning and would treat each time with 2 to 3 rounds of omnicef for strep. He also had exacerbations with viruses and mycoplasma pneumonia. They were very supportive when we decided to see Dr. L because they to want to learn. We had our appointment just recently on Oct. 14. Dr. L was terrific and took her time with us. Listen to our whole history (from prematurity to recently). She definately said he was a classic Pandas case and that he needs to be on augmentin probably until well into his late teens maybe 20. My son is about 71 pounds and she prescribed 400 mg of augmentin twice a day (chewables). Dr. L said given his history that it would likely take at least a year or more for complete healing to take place, and that if exacerbations occur that she would prescribe a steriod burst along with the augmentin. I know about the Cunningham tests, but Dr. L did not ask to have them done. She went by our peds. history of blood work which was very telling for. Dr. L. Since starting the augmentin we have notice a decrease in anxiety at least at home. We are in year round schools, so he just tracked back in today from a three week track out and we are anxious to see how things go in school the next few months (having difficulty with handwriting, math, impulsivity, focus, anxiety, social issues). It has been a long two years with all the downs and ups and how this has affected our son in many ways, but hopefully now he is on the path to recovery. Hope this info helps some and hoping for good things to come your way.

My child was recently diagnosed with Pandas by Dr. L and is taking augmentin for treatment. I wanted to draw on everyone's experiences on this forum to find out if when your child is not sick with any kind of bacterial or viral infection, can stress, anxiety related to a situation, or just being tired be a trigger for a pandas exacerbation? Thank you for any advice!