emilyt

Thanks so much for asking. We have not seen the improvement we had seen with Amoxicillin (which was accidental, he was on it for the abcessed tooth). Today is day #5 of Omnicef and I haven't seen him yet to note if there's any improvement (he was asleep when I left for work). Still watching and waiting. Thanks again, Emily

No surprise at all that most traditional clinicians are against alternative treatments. Interesting that you are going to another doctor in hopes he knows PANDAS and can treat your child's episodes--isn't that what you have with Dr. Murphy? Are you looking for an alternative medicine doctor that can help you when he has his episodes? I guess that would make more sense. Sorry--I guess I'm thinking out loud....or something . Do you know if your child's titers rise when he has episodes? Emily

Yes, I did see Dr. Gaines, too. I know what you mean about taking them from Dr. to Dr. Thats' why I believe it's up to us to be as informed as possible. I bet many of us already know more than some of these doctors about this stuff. We went to see a neurologist first, and they were useless. We will not be back, and they do not exist in his plan of care now. Anyway, when I called into their nurse, Deborah, she offered Dr. Murphy's email address, and I gave her mine instead because I couldn't write when I was talking to her. Dr. Gaines returned my email, and we have gone back and forth since. It's not perfect, because I've had a question lingering out there for a few days now, but I bet if the University is closed for the holidays, then he doesn't check the email. Emily

Airbucket, What is an airbucket anyway? :-} For my son with autism spectrum disorder (PDD-NOS), we have used intensive behavioral therapy (ABA) for the past 2+ years. We have seen massive measurable success with it. After all I have learned about treatment of autism, I would recommend that whatever route any parent chooses, measure its success. Try one therapy/vitamin/drug/whatever at a time, pick a targeted behavior you'd like to see improve, and measure it with numbers before and after you start treatment. Otherwise, you will be saying that you started several things as recommended, and you think he's a little better. How will you know what to continue? Is the amount of improvement enough to stick with? You will definitively be able to answer those very important questions if you look at measurable data before and after starting anything. For that matter, it's a good idea for any of these problems being discussed in my opinion. I hear and read frequently that a parent thinks their child is better. Speaking of my other son now, if there was a way to count his tics before starting Tenex or antibiotic, put him on the med, then count a few days later, I would definitely know if it's working. I just can't figure out an accurate way to count his tics (in his fingers and hands currently). Believe me, I've thought about this one alot. BTW--which one of the residents did you see at Shands w/Dr. Murphy? Emily

I've tried my hardest to "search" for the answer, but I can't find any numbers. Total cases? New cases per year? Curious, Emily

Michele, Thanks for your reply. I am going to attempt to answer all of your questions. In regards to similarities in my PANDAS child and my autism spectrum child, I really can't appreciate any. My youngest is pretty high functioning, we hope to have him prepared enough for a typical first grade classroom next year. He is verbal, but his communication skills are obviously behind kids of his age. His other significant weakness is social skills, he'll do whatever you instruct him to do socially, he just lacks the ability most of us are born with to do it on his own--unprompted. Anyway, he is getting much better though, with alot of behavior therapy. He does get stuck on phrases, for the past 3 days it's "Can we go fishing?" over and over and over and over. I am pleased with my pediatrician so far. She has welcomed input from Shands and she has been aggressive with her workup and treatment plans. She seems like she is somewhat familiar with PANDAS, but I don't know if she's ever had a pt with it or not. We live in the Panama City, FL area. We just started his first dose of Omnicef on Monday of this week, and I have not seen any change yet. His tics are mild to moderate, so I'm comfortable with taking time and seeing what works. As for the Tenex, that is one tricky drug. I'm not unhappy with it, but it is a bit challenging titrating the dosages up and down while monitoring the side effects. If we are late on a dosage, he tells me he feels himself shivering on the inside, "but I'm not cold". If he gets too much, then he complains of weakness. Anyway, I think I answered your questions. Let me know if you would like any more info. I'm still trying to figure this discussion board stuff out, and I'm trying real hard to keep up with responses. :-D Emily

I did see an initial reduction in his tics with Tenex. They have never stopped, and they have changed from his head and neck to his hands and fingers currently. I have heard about DAN, but we have chosen not to go that route currently. There are completely opposing rules of thought on alternative vs. traditional methods of treatment, and my husband and I have decided on tons of ABA therapy for our son with autism and meds for my other son. Thanks, Emily

C.P., Thanks for your kind words. Both of my children are boys. The youngest turns 6 today and he was diagnosed with PDD-NOS (autism spectrum disorder) when he was 3, and my oldest is 7 and was diagnosed with PANDAS this week. Did your husband "outgrow" TS? I'm new to all of this and just learning. Emily

Faith, He was originally started on Tenex for the tics. I realize this is an alternative methods board, so I don't know how others here feel about that. Anyway, he has been on the Tenex since his tics initially started in August at the same dosage. We had never seen a huge improvement with it, as he is still ticing on the Tenex (but I don't know how bad he'd be off of it, either). As for a history of tics, the only other thing that is notable about his history is that we had taken him to an allergist a couple of years ago for a persistent throat clearing. They gave him a huge workup, which included cystic fibrosis sweat test, a barium swallow, and allergy testing with 56 pin pricks. Although he tested significantly positive to some outdoor allergens, I remember the allergy doctor telling us he thought the constant throat clearing was "attention-seeking behavior". Looking back, I think it was a tic, which he still has today although it is less. As for the vaccinations, my kids just get them on the regular childhood schedule. I don't know the exact dates. I've never dwelled on the vaccination theory--not to say it's not possible. I've been too busy dealing with treatments (and insurance, and IEPs) for autism, ADHD, and now PANDAS. I'm sure you know what I mean! Emily

Kelly, He was on Amoxicillin 250 mg every 8 hours for the abcessed tooth when we noticed the tics stopping. His dentist changed that after 4 days to Clendomycin--to be more aggressive on the abcess--and his tics came back. Now, Dr. Murphy and his pediatrician have agreed to try Omnicef 300mg twice daily for 3 weeks to see if it helps his tics. (I understand Dr. Murphy recently completed a study using Omnicef that has yet to be published). Anyway, we just started that Monday. We'll see what happens.

My 6 year old is on the autism spectrum, and my 7 year old was just diagnosed with PANDAS (manifested by ADHD and tics). Haven't talked to anyone locally that's ever heard of PANDAS, much less found anyone with 2 somewhat similarly affected kids. It looks like we have a long road ahead of us dealing with the strep treatments long term after reading everyone's posts here. Any advice, input? Thanks, Emily

Airbucket-- I'm new to this site, and your post immediately caught my eye. The reason is that my 7 year old son began with his tic disorder in August '07, while his only other issue is significant ADHD. Anyway, our local pediatrician didn't really know what to do, so she consulted by phone a neurologist in Pensacola (I'm in Panama City) about treatment of the tic disorder. Anyway, they agreed on a med to start him on, and I took him into see the pediatric neurologist as well. After I didn't like their evaluation, I self-referred us to Dr. Murphy's Tic Disorder Clinic. We saw her early November. Now, I was told prior to the appointment that it would be a 2 hour appointment, one hour with a resident, and one hour with Dr. Murphy. After all was said and done, we spent 3 hours total in the appointment, with the last 45 mins with Dr. Murphy. I went in with the intention of seeking a competent evaluation and treatment plan for my son's ADHD and tic disorder, because it seems that when you treat one, the other gets worse. What I got was a whole lot more. She asked if he'd ever had strep, which of course he had. She asked when the last time was, and it was late July--just before the tics started. While she raised an eyebrow, her only recommendation from there was to take him into his pediatrician for a throat swab if his tics suddenly got worse. Remembering that, we are where we are today....... He had an abcessed tooth 2 weeks ago that he was on antibiotics for. On day 3 of antibiotics, we noticed his tics were completely gone. My brain did a quick rewind, and I wondered if the PANDAS association was possible. To make a long story short (too late), his ASO titer was 596 (normal is less than 150 or 200), and he now has the diagnosis and we've just embarked on 3 weeks of antibiotics. The moral of my story is this--I would be cautious about going into any expert in any field and expect a specific answer. Just because she or her resident didn't give you the diagnosis you were looking for doesn't necessarily mean they are wrong. From my research, there are very few experts in the PANDAS field, but she is one of them. I immediately called her office when he got better on antibiotics, and her nurse (Deborah) took my info, and I have been in nearly daily email contact with the resident we saw. I ask him a question, he replies with an answer, and I take it to our pediatrician for her to deal with (labs, meds). Anyway, didn't mean to sound harsh, but we've had a very productive, positive experience with Dr. Murphy and her peeps very recently. Although I am finding myself dizzy these days from dealing with everyone AND my sons. Also, my younger son is on the Autism spectrum. I have emailed several high-ranking docs to find out if there's any genetic correlation. Who knows, I bet no one can answer that one yet. There just doesn't seem like there's much data out there. And they say this hard stuff is supposed to make us stronger......... Emily

Sorry to all--I'm a newbie here and trying to figure out this reply thing..... Anyway, mom2three, have you ever checked into PANDAS? If not, it is a disorder of tics that are exacerbated by strep infection. My son, age 7, was diagnosed with this over the past 2 weeks, and clinically the tic symptoms get better and worse with the amount of antibodies in the child's bloodstream. The treatment for the tics in these kids is antibiotics, which helps their tics or OCD or ADHD--whichever they show while their levels are high. Last week, before starting the antibiotics, he had NO usual signs of strep, has mild to moderate tics constantly, but his blood titer was 4 times the normal kid without strep. Don't have any advise for how to otherwise control outbreaks, though. And, as an ex-ER nurse, I can tell you Haldol is what we gave physically out of control psychiatric patients, and it REALLY sedates. We called it a chemical restraint. Anyway, here's a link to the PANDAS info: http://intramural.nimh.nih.gov/pdn/web.htm. Emily