kthomas

DMy DS7 has one of the same tics. It is so hard to watch them as they struggle with the tics and OCD. We too have had an exacerbation since December. We have been to the doctor several times, but he would not give a steroid taper or change the antibiotics from 250 mg azitthromycin daily to something else. He has suggested using over the counter anti-inflamatories and treating for allergies. We have done both and have seen some relief, but not back to where we started in December. I agree with the post about lessening the stress. During some of his worst days we kept him home from school and limited his extra-curricular activities to give him a break from trying to hide his tics. It did help. Our doctor wrote a note covering the absences so they were excused.

My ds8 experienced stuttering, repeating of words and phrases when trying to formulate sentences. He was and is verbally gifted (at age 7 reading on 6 th grade level) with an advanced vocabulary, but seemed to falter when expressing himself because of the stuttering and repeating of words and phrases. He has struggled socially, being impulsive and intrusive into other children's boundaries. He also had sensory issues to light, textures of fabric, and food. I also noticed the fixation on a topic and the inability to stop talking about it. Since starting abx of azithromycin 250 mg. daily we have seen vast improvement in all three areas.

9:12 PM - back from a long day in San Antonio at Christus Santa Rosa with Dr. I. The appointment went very well, and I felt very confident with what Dr. I had to say. He mentioned that he had been in contact with Dr. C. from OK and that she is in the process of opening up her lab and getting the Kam Kinase test available. He is currently treating PANDAS patients and set an appointment for 6 months from now so I think he plans to continue to treat them.

Saidle10, I met your family at that appointment with Dr. I in San Antonio in Dec. 2011. My ds8 has a 6 month appointment with Dr. I today. We have not gone the IVIG route yet, and was going to discuss if he still did IVIG with Dr. I today. I have always liked Dr. I and felt he was empathetic to the PANDAS cause, but that it was not his specialty. He did the dx of PANDAS for ds8 and he did start prophylactic dose of azithromycin, but he was not willing to be the primary doctor. So I started searching and I found another dr. in Texas. Dr. R. in Port Aransas. We have gone 3x to him and he upped the dose to 250 mg azithromycin daily and dx'd 10 mg strattera. Both have worked well for ds8 - 56lbs. I will PM you with his contact information. Dr. R. primarily treats autism patients with some PANDAS. PS. Meeting you and seeing a real family dealing with similar issues was so heartening to me. Thank you for taking the time to talk to me and for letting your boys interact with my son. I too feel that this illness has taken a toll on my marriage. For me anyway, it has become my focus and I'm not much fun in the middle of a storm.

DS8 has been battling PANDAS since Nov. 2010 when a sudden onset of tics erupted. He went un- dx for a year until through antidotal evidence it was apparent that it was not TS or tic disorder. In Dec. 2011 the doctor rx a script of 500mg of azirthromycin 1 x per week. There was some improvement, but it was not till July 2012 that he started on a rx of 250 mg of azithromycin daily and we saw a remission of all his tics and ocd type behaviors. His ADHD is still causing him challenges with peers and he is immature for his age. If it were your child and the tics/ocd were in remission would you push for an IVIG to try to reverse the ADHD/impulsivity issuers?

Thank you for sharing. So happy for you and your family.

Great news that your children are doing well. Which antibiotic are they taking and what is the dosage?

We did try taking out all dairy and gluten. It helped with congestion, which kept sinus infections at bay, but did not affect the tics, OCD or behavioral issues. The only thing that helped those was the rx for azithromycin was 500mg 1 X per week has just changed to 250 mg daily. DS8 weighs 54lbs. We have also been doing probiotics - Yum-Yum Dophilus found in the refrigerated section of Sprouts - and natural anti-inflamatories like fish oil and tummeric. We now limit dairy and gluten, but occasionally allow them on special occasions.

If that doesn't help, you may need to increase the Azith. dose to daily. Our dd was on 250mg daily when she was that size. With PANDAS, it usually doesn't pay to be conservative with antibiotic dosing. To get improvement with antibiotics, it's important to use the "right" antibiotic (which can be trial and error, as some kids repond better to Azith, others Augmentin, etc) as well as a high enough dose. You may eventually experiment with a lower dose but at least initially, the low doses often aren't effective. IMO, PANDAS kids don't have a "good immune system against strep" which may be one reason lower doses don't seem to do much for them. This is an update from my prior posting in March. DS8 had seen remarkable results with the lower dosage - all tics gone and OCD behavior gone, but socialization is still a big issue. HIs impulsiveness and ADHD behaviors have improved some, but continue to be a problem in the classroom. He is also verbally unkind to others to the point that he is loosing his best friend because of the hurtful comments he continues to make. Has anyone else seen that the tics and OCD behaviors improve before the behaviors. Do the behaviors eventually improve? We went to a new doctor last week that was listed under treating physicians on pandas network.org. Dr. Bruce Russel in Port Aransas, TX. He was fantastic. The doctor increased the rx to 250 mg. of azithromycin daily instead of 500mg once per week. I am hoping that this will help with ADHD/impulsiveness behaviors.

DS7 has been taking a prophalactic dose (250mgx2 1 day per week) of azithromycin since December. It has made a world of difference for his tics and other related behaviors. Unfortunately the medication that I ordered through Medco has just arrived and it is the Greenstone brand. From what I have read on this forum Greenstone is not as effective as Sandoz or Teva brands. Has anyone had any luck with Greenstone, or do I need to run to the pharmacy tomorrow?

Have you considered Dr. Kenneth Bock, the author of Healing the New Childhood Epidemics in Rhinebeck, NY. In his book he discusses his treatment of patients with PANDAS. His website is Rhinebeckhealth.comI have read his book and was very impressed. If I lived anywhere near him, I would seek treatment for my DS7 with him.

My DS7 also complains of headaches. When he complains of a headache, I know that he is coming down with something, because he doesn't usually run a fever. In fact his sudden onset of a tic (licking hands and rubbing eyes) started with a cold and then headaches and some fever.

DS7 started a new antibiotic (Azithromycin) on Wednesday, after a visit to Dr. I. The tics have been far worse than on the Penicillin V (2 months.) I have read through other posts and have noted the information on herxing and am wondering how long does this last.? It has been 4 days of constant tics. I just started him on charcoal pills to hopefully get some of the toxins out of his body. Does anyone have experience with this?

Dr. changed rx to azithromycin (200mg 2x per day, one x per week) Thank you to all who responded. Appreciate the information. (DS7 weighs 53 lbs.) What was the dosage for azithromycin that was rx-ed for your children?

After battling PANDAS for nearly a year, in late October DS7 was finally put on Penicillin V (250 mg. 2 x daily.) The first two weeks his hand movements disappeared, his impulsivity decreased, and his tic all but subsided. He then had an episode with the tic waxing for one day almost to the levels where he was when this nightmare all began. HIs tic and hand movements came back and he is again struggling with impulsiveness, and new tics. I am so disappointed and fearful that there is little relief for him. I think I put my faith in the rx working and since it is not I am left a feeling of hopelessness. I remind myself that this is just the first round of penicillin and perhaps he needs a different type of antibiotic. Has anyone had luck with penicillin v, or have suggestions.

Dr. Beck's book on the 4 A Disorders - Autism, ADHD, Asthma, and Allergies has some PANDAS case stories in it. You might find his insight on the topic helpful as you look for answers to your son's condition. I read this book about two months ago and have adopted some of his recommendations on anti-inflammatory supplements. We have been struggling for almost a year now with PANDAS symptoms.My DS7 was just put on antibiotics this past week. We went from doctor to doctor looking for someone who would listen and knew about PANDAS and have finally found a doctor that is working with us.

Thank you for taking notes. Great information. I do hope they will make the lectures available like they did for the Autism One Conference. I am curious about Dr. Cunningham as my ds7 was one of the participants in her study that did not receive any results from the submitted blood sample. I was so disappointed not to get the results from her test. Did she mention using the samples they already have in the lab for their next study?

Ds7 50lbs was given Intunive 1mg 1x daily. He did not react well to it - his tics increased and he was impulsive and aggressive with his peers. It is my understanding that Intiunive increase glutamate which is already a problem for ADHD/PANDAS kids. The neurologist changed his rx to Risperdal .25 mg. 2x daily- I'm not too happy with this medication either since it has some pretty weird long term side effects. It has however calmed him down remarkably to the point of having good behavior for 5 days in a row - a miracle in our house these days. We have also started supplements of turmeric, fish oil, cod liver oil, vitamin c, calcium and magnesium as per Dr. Beck's book which has a whole chapter on supplements and dosage ranges. As to your discussion on giving stimulants, I was told by the neurologist that children who have tics should not take stimulants as it increases the tics and can cause tics in children who do not already have them.

Fast forward to six weeks into the school year and DS7's behavior is off the charts. After the first week his teacher complained that he is out of control and needed meds. We started the meds - Intuniv 1mg, but he was inattentive, still impulsive and having problems with peers. I knew that Intuniv raised glutamate levels and could cause agression in ADHD children so I called the doctor and she changed his meds to Risperdal .25 mg, 2x daily. It is still not working. Tonight at Open House she was still concerned that he was not doing well and perhaps had been doing better on Intuniv. The couple of days I took him off meds to change him to the new meds, he was swinging from the chandeliers. I am heartbroken that he is struggling so much at school and that he is alienating the rest of the kids in the class. I have started looking up doctors in Texas hoping to find someone that will recognize that he has PANDAS and treat it properly. Any ideas??? We have tried gluten free and dairy free diet - helps with congestion, but not behavior. We are currently starting supplements as per Dr. Beck's book.

Great information from all of you. Thank you. I will keep up the search for a doctor that can help.