Pandamom

Giselle, I'm a fifth grade teacher in a public elementary school which has an extensive ESE program so we have children with special needs as a daily part of life - and I have to say the "regular" kids in our school accept our ESE guys without blinking an eye - when they go to middle school where the ESE kids are not treated equally it is a great shock to them. I had a young man in my class two years ago who was thought to have ADD. He was extremely bright and shy. He cried constantly and had some very unusual tics. Our music teacher discovered that Ian has a beautiful voice and had him sing a solo in front of the entire school. I told him to just look at me the whole time and pretend like he was just singing to me. Little did I know that at the end of the solo which was "I'll be seeing you in all the old familiar places" and made me cry like a baby because he was graduating fifth grade that year; at the end of the performance he got up with several other students and told who made a difference in his life. He said, "Ms. Williams has helped me know that I can do anything - I really believe in myself!" I think that feeling came from music - he found a spot in life where he can excel and feel confident. You might want to share this with his music teacher. When the world reaches out and embraces our kids with all their unique gifts it's very empowering for them. Ian has gone on to middle school and found a great place in the band where he can really shine. Ultimately he was diagnosed with aspergers. good luck. I'll keep my fingers crossed that he has the chance to be shining star.

Good luck Brenda, My daughter has Pandas and her OCD definitely gets worse when she sees things that bother her. Her tics react the most strongly - especially if we are talking about them, they go into high gear. She has never had a positive throat swabe for strep but her blood work shows her titer levels to be really high and just getting higher every time we test her - that's how her doctor diagnosed the pandas through bloodwork. Her ENT suspects the strep is living in her adnoids and tonsils and he is removing them at the end of the month. I'm fairly new to all this, and this forum is a great place for ideas. Hope things get better, tracy

My daughter is still experiencing alot of symptoms with her Pandas including facial tics, bedwetting, and alot of congestion and difficulty breathing. The pediatrician sent us to the chiropractor yesterday to help with the congestion and breathing problems. She had her first treatment yesterday and last night she didn't snore once! She also didn't wet the bed! I'm afraid its just a fluke since its only been one day, but I'm wondering if anyone else has tried this type of treatment with any success. She still has the tics and we're scheduled for surgery in two weeks to have her adnoids and tonsils removed and her tanbites(i know that's the wrong name) reduced because they are very enlarged. He's going to end with an exploratory look at her vocal cords since she's had vocal cord disorder all throughout the Pandas. I'm keeping my fingers crossed the chiropractor is part of our answer.

Our doctor has my daughter taking Omega 3, a full dose every day, unless she has had a food source with Omega 3 like salmon or flaxseed waffles. She also takes a whole food concentrate, Juice Plus, which is like a multivitamin. It's 17 organic fruits and vegetables concentrated into tablets - She hates the "fish burps" with the Omega 3 but it seems to help. The biggest food trigger I've found with her tics which are all facial is caffeine.

One thing caught my attention in your first post. The counting steps forward and backward. That can be a symptom of OCD and OCD is associated with Pandas. My daughter has Pandas and she has had all the facial and vocal tics you are describing: the huh sound every few seconds; eye blink; mouth stretching; coughing and they have been so severe they have caused her extreme pain. She also has ocd without the counting - but that was the first thing the doctor asked when they suspected ocd "are you counting anything?" By now you probably know that Pandas symptoms include tics and ocd. My daughters onset was pretty sudden but more over the course of a week not overnight. Her titer levels are still going up even though we have had her on azithromycin -zithromax prophylactically the last four weeks. Her tics have improved and her ocd but we are also on other meds and there is some fluctuation with her symptoms. As a point of reference her most recent levels were ASO 244 and DNase 960. She is now scheduled for surgery to have her adnoids/tonsils removed. The ent thinks there may be acting as a reservoir for the strep so she has an 80% chance of significant improvement - 20% no improvement. Good luck

As simple as this sounds, I follow the advice of my doctors first. Of Course, we have great doctors. There is so much going on for these Pandas kids and the symptoms are so varied and so intertwined. I have also found that on a couple of occasions my "gut" feeling about things has been correct. Our psychologist always tells me to listen to my mommy intuition.

Wow, so much is being said here. I have to add my five cent story. Four years ago, a little girl in our school was diagnosed with osteosarcoma, bone cancer. The family needed financial help and we decided to hold a motorcycle run for her before her surgery so that she could ride with her dad. We raised alot of money which was nice, but the amazing part of the story was Amber's recovery. She had been given a 25% survival rate and as she went through the year and multiple surgeries and chemotherapy she watched alot of her little friends pass away. One day, a reporter asked her surgeon what makes the difference with kids who are terminally ill. Why do some make it through? The doctor said it's the love, the support, the prayers and the positive energy surrounding certain children that he believes pulls them through these difficult times. Amber is cancer free four years later!!!!! We hold our breath every time she has a scan, but all the love and support have continued to pour into her life. Every time we talk to each other, talk about our children who have such difficult challenges, hold each other in our thoughts, regardless of the religion we hold in our hearts, our children benefit. I know for a certainty that love, compassion and prayer save lives. Although our children don't face life threatening illnesses, they do face life altering illnesses so the same principal applies in their lives as well as Amber's. Our pediatrician reminds us often to stay positive and things will improve, just through the power of positive thought. Maybe all doctors should learn this lesson. I know we have.

Thanks for letting me know you take it every five days. We've been told it stays in the system 3 to 4 and I was wondering if every seven days was still waiting too long. Does anyone know how often Ronna's son Kurt is taking it?

Just wanted to post an update for all the pandas moms out there. Tori started azithromycin a little more than two weeks ago. We did the ten day course to begin, and there was no significant change in her tics or behavior. She has been suffering from steadily increasing depression so, in the middle of the course her psychiatrist changed her Pexeva to Prozac and her depression seemed to lift very soon after. We still have her on risperdal and she was still having mild tics. This past Sunday, she did the 500 mg weekly dose, Monday ticcing very hard at the doctor and then boom! They just stopped and I haven't seen them since. Her energy levels are going up. Her three hour nap now only lasts one to two hours, and she doesn't fall asleep when her friends come over to hang out - she's very happy about that. I do think its the 500mg that has stopped the tics this week. The risperdal doesn't produce a consistent enough relief. Hopefully, in another two weeks, when her Prozac is levelled off we will try taking her off the risperdal and that will definitely tell if its the antibiotics. Her titer testing showed an increase in one of her levels and a decrease in the other - strange. I haven't gotten the numbers from the doctor yet. We are hoping to get back to school part time next week and that is very exciting all the way around. We'll keep you posted as we go along. Hope all is well with everyone Tracy and Tori

Good morning, We just finished day 10 of the azithromycin and still no positive changes. My daughters tics are still there, but very light and over the last week her ocd seems to have gotten alot worse, prompting the psychiatrist to change her meds to address ocd and depression. I holding out hope that once we start the 500 mg azith on Sundays we will see some improvement. keep you posted Tracy

Carrie, My daughter has Pandas which resulted in tics, panic disorder, agorophobia and ocd. We got a great book from our psychologist called Freeing your Child From Anxiety by Tamar Chansky. She gives alot of great tips on how to talk to children with anxiety. You can get it on Amazon.com Hope this helps. Tracy

My daughter has difficulty sleeping too. Per her pediatrician she takes an epsom salt (magnesium) bath - we put in 3 cups of epsom salts and lavendar bath oil. It really helps her relax and go to sleep easier. The magnesium is absorbed through the skin as you soak and the lavendar is a natural relaxer. Good luck

Hi Amy, My daughter was diagnosed with Pandas in July. Her symptoms flaired up in February and she has never in her life had a positive strep test - however her titers were 680 in July. She has alot of symptoms other than the tics that are the subject of this discussion board, panic disorder, fear of dying, bedwetting vocal cord disorder and chronic sinus infections. She is beginnng to get depressed as well and I don't know if its a side effect of being ill so long (7months) and losing control of her life or if its something else. She is having such a hard time she has been pulled out of school. Originally in July the doctor started penicillin shots once every three weeks. We would see breakthrough improvements but nothing lasting because the penicillin did not stay in her system. The pediatrician was inclined to go with daily penicillin but I asked for azithromycin to try and save her body from some of the side effects. The pediatrician agreed to start her on azithromicin and began with a 250 mg daily for 10 days which will be followed with 500 mg once a week after that. We are on day six and she still has all her symptoms. I'm still hopeful but I do wonder if it is Pandas since so many other stories here tell of results that were almost immediate. She is also on pexeva for panic disorder, valium for vocal cord disorder and risperdal for tics. I'm hoping to stop the risperdal this week to see how the antibiotic is working. Before I found this website I felt so completely alone with this problem. These discussions have been so beneficial. Feel free to email me if you like tracyl.williams@comcast.net Good luck with your child, Tracy

Thanks ad ccl Today is day 3 and we were out of town for an overnight trip. Tori did not tic once - she's on risperdal but always keeps a tiny tic for anxiety type situations - and she didn't seem anxious about being away. So I'm keeping my fingers crossed. We see her psychiatrist next Tuesday and I'm going to ask if we can stop the risperdal to see how the tics are doing without medication. I'm very hopeful. It's hard to see her so "out of it" all the time. She is starting to miss school and friends too. I cried when I read your response (tears of joy and hope). It's so wonderful to know that these kids can make it back out into the world. It must be amazing to see your child come back! Thanks for sharing and I'll keep you posted.

Mommy 007 and Chemar Thanks for sharing with me. We just started the antibiotic treatments yesterday. Zithromax 250 mg for 10 days and then 500 mg weekly. I'm keeping my fingers crossed and hoping that eventually we can take her off the risperdal for tics and the valium for VCD. We also went to the ENT who thinks her tonsils and adnoids may need to come out. Anyway, we have her first IEP meeting this morning. What a long strange trip its been. Through it all we keep looking for the good - right now she should be starting the teenage "mom stinks" temper tantrums and instead this has brought us closer together - of course we still have tantrums about things like leaving the house I'll let you all if the new antibiotics work. We also have an appointment with Dr. Tanya Murphy on November 3rd and I'll fill you in with any ideas she has as well. Thanks for all the support and I hope everyone has a great week. Tracy

Oh my gosh. I just called the NIMH this week and got her name. I haven't contacted her yet but I passed her name along to my psychiatrist. He is looking at treating Tori with the long term antibiotic. He's a very open doctor and if I can stick with him and get what we need that's my plan. If not the next step is to call Dr. Murphy myself - we're in the Jacksonville Beach area and only an hour and a half away. A short drive is no big deal after some of the things we've done the past seven months. Thanks for the info.

Thanks Chemar - definitely alot of good information. We are going to the ped on Monday to discuss antibiotics long term and I am going to ask her to do the ELisaA blood test to rule out or identify food allergies, mold ect. The nurse at her school keeps asking me if she is allergic to mold because there is alot present. Let me know if there are other tests you think are important. Thanks for thinking of us Tracy

Hi Amy, Welcome to this discussion. I just discovered this forum myself last weekend and have felt such overwhelming relief that there are people who know and will discuss PANDAS. My daughter is 12 and she had her first onset in February. Since then we've had a roller coaster ride. I've kept a log of her symptoms and treatements and found that during times of antibiotic treatment for sinus infections (which have been chronic) her other symptoms improve dramatically. We use cognitive behavior therapy for her anxiety and panic disorder and she has been very successful with that. I am now in the process of trying to talk her psychiatrist or pediatrician into trying the prophylaxis dose of antibiotic. They are at least willing to research the data and discuss the possibility with me. I have been calling all over the country trying to find a doctor who understands this condition and will give some guidance. I called the NIMH (where they did the prolonged study of antibiotics and Panda kids) and they gave me the name of a doctor here in Florida. Perhaps they know someone in Colorado as well. The number is 301-435-6650. Good luck. I know its frustrating. I can't tell you how many people have looked at me funny when trying to describe what is wrong with my child. We actually changed pediatricians five months after my daughter first had symptoms at the suggestion of our psychologist. The doctor we use is involved in nuerotransmitter research and has a very holistic approach. Maybe you could find a ped with that type of background. We are blessed with doctors who have open minds and hopefully you can find someone also. Tracy and Tori

Our psychiatrist and pediatrician are looking into the antibiotic treatment for my daughter. Can you tell me what Dr. Brown's treatments were for your son that worked so well? My daughter is 12 and was diagnosed just this year. Her condition is so bad we had to pull her out of school. Thanks for any ideas you may have. Tracy and Tori

Thanks Chemar and Evie, Joining these discussions has helped me so much. We are seeing the psychiatrist this week and hoping he is open minded enough to try the antibiotics. I keep a log of her symptoms and after reading about everyone's experience here with antibiotics I reviewed the log and found that the two times she has been without tics in the last six months she was on antibiotics for sinus infections. We are also going to try and set an appointment with an immunologist and I will definitely ask about food allergies everywhere I go. If you have any other suggestions I'd love to hear them. Tracy and Tori

Thanks Giselle, My big challenge now is finding a doctor who will work with the antibiotic treatments. Our ped is holistic and not inclined to prescribe antibiotics on a regular basis. I wouldn't wish this on anyone, but since joining yesterday I have certainly felt better knowing I'm not alone. Reading your story about Hoyt really helped me. Thanks for sharing. I think its the key. So many people are intimidated to share their experiences. Tracy

Hello, I'm new to this discussion board, but I am a certified teacher in the state of Florida and I know how difficult those tests are! It took me two tries to pass the math. Congratulations, you should be very proud of yourself. Good luck in your ongoing education. Teaching is a wonderful profession. I left it this year because of my daughter's illness but I'll be back just because I love it so much. It's the only job I ever had (and I've had a few) where I got hugged at least three times a day Tracy [ quote name=carolyn_lsc' date='Aug 15 2006, 04:24 PM' post='11513] Hi Everyone, Some of you have seen my post about the teacher's exam by Praxis/accommodations on Braintalk, but without it being up I wasn't able to post whatever happened with it. For those of you that didn't see it, I'll explain. I was having trouble getting accommodations for the teacher's exam I had to take which is made by the same company that does high school SAT tests. I had been denied twice and after talking with Susan Conners from the TSA, I was able to supply the Praxis company with everything they needed. I received 50% additional testing time and extra breaks. I took the teacher's exam today and know I passed the reading and math part! The writing score isn't instant as the essay has to be graded so I won't know that for another two to three weeks. I got a 184 on the math part and 171 or above is our state requirement. I got a 176 on the reading and 170 is our state requirment for it. I'm really glad I passed the exam as now I don't have to worry about it anymore and can apply to teacher's college for next year. Anyways I just wanted to share the good news with you all. Carolyn

My daughter has been diagnosed with Pandas and has been taking penicillin along with those supplements and we have not seen an improvement yet. However, our doctor says it takes 3 to 4 months and we just started in July. Tracy

Cherry - my daughter is 12 also and has been struggling with severe symptoms which her pediatrican has diagnosed as Pandas. In all my research, until today when I found this site, the one person who seems to be a real expert in the field is a Canadian: Dr. Swedo. She has done alot of pioneering research in the field. Perhaps she is close enough for you to contact her. good luck Tracy

Hello, I am new to this forum and hope I am using it correctly. My daughter became very ill this past February. She is 12. Her symptoms included an obsessive fear of dying, which led to panic disorder w/ agorophobia; chronic congestion (can't figure this one out still); mild facial tics, vocal cord disorder, regressive behavior - watching preschool tv for hours, and bedwetting. Her pediatrician addressed her symptoms individually using Cefzil once which seemed to improve her condition, and finally sent me to a psychiatrist. Once she was on Pexeva and recieving CBT her condition improved dramatically. We changed pediatricians in July, because the congestion was so recurrent - our new doctor is homeopathic and she immediately picked up on the Pandas; tested the titers and they were elevated. On the first day of school she did incredibly well. Her meds were Pexeva, valium, and risperdone for tics. Within a week she developed a sinus infection and the panic attacks began to occur. Her symptoms are milder than February, but still so severe that we have had to take her out of school. Her psychiatrist is changing her medications in the hopes of finding the right combination. The one symptom which has dramatically changed for the worse are the tics. Facial tics around the eyes, coughing and a neck muscle tic that moves from the right side to the left so quickly it looks like her head is a ping pong ball. Does any of this sound familiar to anyone else? I keep wondering if it really is Pandas. If so, after reading some of your posts I think we need to be more agressive with the antibiotics and not rely on a penicillin shot once every three weeks. Does this condition ever go away? At the beginning of this year, I had a happy, above average student who was so well rounded socially. Now her friends have pulled away because of some of the symptoms and she can't stay in the classroom without feeling panicked. Any thoughts or insight is so greatly appreciated. No one I know has even heard of this syndrome. Thanks, Tracy