DebC

Our daughter never reacted with other infections until her PANDAS started after a strep infection. During her strep recovery, her sinus infections would set off additional behaviors. Now that symptoms are minimal, colds and other infection have not set it off. They recently had a strep outbreak at school and we convinced our ENT to put her on Augmentin to protect her. We noticed that just the exposure caused a small increase in behaviors.

I'm in the process of handing mine out as well. In fact, I followed Beth's suggestion and sent one to the Obamas along with our family's story. I also sent one along with a similar letter to Dr. Kurlan and stated how much harm his webinars against PANDAS will do to PANDAS families: "Our story and that of others I have gotten to know through this journey are my reason for writing to you today. Doctors who say that PANDAS does not exist are not taking into account that these symptoms were not present until a strep infection. The symptoms just suddenly appear and gradually go away with antibiotic treatment. Saying that PANDAS does not exist makes the life of a PANDAS parent and child more difficult as we then have to struggle to find appropriate treatment. I ask that you consider what you are teaching and discussing before your webinar as your actions may have an adverse effect on the lives of these children and their families. It is a difficult road that we walk."

Thank you, thank you, thank you for your post. What a wonderful thing to give all of us a gift on YOUR birthday! I can't begin to tell you how wonderful it is to read a post by someone who is living life to its fullest with PANDAS! It gives such hope to those of us with PANDAS children, knowing that they can learn to live and manage their symptoms.

Poster name: DebC Location: Plano, TX Childs year of birthL 9/2000 Present age: 9 Gender: Female Weight: I'm guessing 55 to 65 lbs. Brief history of symptoms/when they started: First onset of symptoms was probably when our daughter was 7 and in the first grade. She started obsessively cleaning her room after a case of strep. We didn't link the two and thought it was a great phase as her room was extremely neat. In January of 2009, during 2nd grade and at the age of 8, our daughter had her major exacerbation. She went to bed on a Wednesday evening a perfectly "normal" child on an antibiotic for strep. She woke the next morning consumed with fears of things getting into her eyes, ears, nose, and mouth. Theses fears continued to mount until she was nearly non functional a week later. Her symptoms are OCD based and CBT has helped somewhat during flare ups. Any previous diagnosis, i.e. autism, asbergers, pdd: No previous diagnosis PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.): Limited to OCD although I have recently noticed her scrunching her nose and don't know if this is a tic or just a habit. Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but Positive culture?, immunology results, etc. Camk number (if done): Just positive rapid strep tests Antibiotic use history: On antibiotics nearly continually from age of 6 months to 3 when she finally received ear tubes for recurrent ear infections. She has been on a prophylactic dose of antibiotics during strep outbreaks at school. I have not been able to find anyone to prescribe the higher doses. Doctor and what protocol they suggested: Our pediatrician, Dr. Charles Goebel provided the diagnosis but he does not treat. We saw Dr. Majeed, a children's neurologist to check for tics. We see Dr. Debra Phalen, a child psychologist who works with teaching our daughter CBT. Our ENT, Dr. Roger Skiles has recently been prescribing prophylactic antibiotic after I wrote him and our pediatrician a letter begging for their help in treating/preventing future exacerbations. Other doctors that were helpful and why: (again, name optional, just name type of doc or initials.) Steroid trials and detailed experience: None Special section on those persuing IVIG or PEX and what the details were, updates could be added here too. None Additional therapies sought: Supplements used: Meds used: Any 'other' pertinent info: Our daughter developed shingles after a varicella vaccine when she was in the first grade and her round of strep with first episode of OCD cleaning started shortly thereafter. (anything else anyone would like to add or have info on.)

Our non PANDAS child has this problem with antibiotics and we find that Yakult (in the yogurt section) really helps a ton.

Thanks, mama2alex! I sent a message to Dr. Gupta. Hopefully if more parents do so, he will do a story on PANDAS as well.

Our daughter had flu mist this fall and had a mild onset of OCD symptoms. She is still exhibiting some obsessive cleaning, but we can all live with that as it's mild. It will probably dissipate with time. I am guessing that the mist had something to do with it. However, during this time, H1N1 was rampant in school and her brother had it so I'm still not completely positive that this wasn't also triggered by exposure to other illness. It's hard to say. Fall and winter are hard on these kids since their bodies are always fighting off illness. That being said, I probably won't have the mist administered again next year. Her biggest reaction to a vaccine was with the varivax (chickenpox) vaccine. She had not yet been diagnosed with PANDAS at the time. At exactly 14 days post vaccination, she developed shingles on her ear. The blisters were painful and lasted for weeks. They would come and go every several days. We worked our way up the ladder with Merck as they were very interested in this fairly rare reaction. The head of that vaccine went so far as to call and speak with our doctor. There's still a part of me that wonders if this vaccine acted as some sort of a trigger to her immune system, setting her up for her later PANDAS reaction.

I got one too and blocked it as well. Too bad there isn't a report button for messages.

One thing to change is that CBT should be cognitive behavioral therapy. Our daughter has done this and it has helped. I agree on the SSRI's. Our psychiatrist tried them for a few months and when our daughter's behavior became whacky every evening at bedtime, almost drunk behavior, I took her off the drugs against his advice. Within a week, those episodes were gone. It was unbelievable how they were extending her PANDAS exacerbation.

Our PANDAS child still has her tonsils. However, our 5 year old, non PANDAS son had his tonsils removed last November a week and a half before Thanksgiving. The biggest piece of advice I can give is to give pain meds around the clock. We set the alarm to ring every time he was due a dose and woke him to give him the medication. That way, we stayed ahead of the pain. Also, around day 5 to 7, you see a dramatic improvement in pain level but that is typically short lived as the scabs start to come off a day or two later. Then the pain is as bad or worse than at the beginning. At day 10, it was as if someone had flipped a switch around noon. Suddenly , the pain was just gone. Our son has been much healthier since. We also asked if our son could be hospitalized over night to keep him hydrated with IV fluids, and since he had some breathing issues it was determined a stay would be a good idea.

Thanks for sharing! I love to hear success stories. They provide so much hope!

Our daughter can take her pills if we put them in a spoon of flavored yogurt or apple sauce.

Our daughter also had giddy episodes at night. Those episodes were much worse when her psychiatrist had put her on Prozac. Then, they were almost drunk episodes. I pulled her off of the Prozac after several months and then we were just back to occasional giddiness. Do you notice that your children's pupils are also dilated at night? I notice this with our daughter and wonder if it's from PANDAS or it it's just how her eyes function.

lismom - we are working with a homeopathic protocol similar in theory to antibiotics but with a different substance. when we started this, i posted here often asking how people were rating their treatments. overwhelmingly, it was based on the parent's observations of how their child was doing. of course, you mention the H1N1 which could certainly be a factor, but 3 months sounds like a rather long time to me to not see an improvement. do you see improvements but just not back to 100%? or is it that you don't really see any improvement at all? solely my opinion, if you see some improvements but slow - that could be that healing takes time. if you don't see anything, it may be time to ramp up abx or change treatments. my son started with symptoms Oct/Nov last year. we discovered strep Dec/Jan. he was on a 5day course of azith - all symptoms intensified with a vengenance. Feb he was on 35 day course keflex - within 3 days he was 100% back to normal. May - a few weeks off abx, relapse - again keflex - improvements but not totally. still not 100% but seems to be s-l-o-w-l-y inching near 95%. Our daughter (9) was diagnosed with PANDAS in January at the age of 8. Looking back, her first episode of PANDAS had occurred a year and a half earlier but was very mild and we attributed her obsessive cleaning at the time to being just a phase. Her January exacerbation was severe. She had extreme separation anxiety and OCD fears about all sorts of odd things. She was at her worst for about 4 weeks and things began to slowly improve. She was doing pretty well by end of March and then had a sinus infection that caused a small flare. However, she didn't get nearly as bad with this. By summer, she was nearly her normal self. Once she was back at school this fall, we've seen slight flare ups here and there with OCD. I currently have a 60 day prescription for antibiotics which I will begin again this week. We took a 10 day break to give her intestines a break as she'd been on Augmentin when her brother had strep. She is currently not on a high or regular dose of antibiotic.

Our daughter does get strep. She's 9 now and was diagnosed in January with PANDAS. Her throat doesn't get sore, but she starts to feel bad, gets dark circles under her eyes, and then throws up due glands that swell with strep. Any time she throws up, I know to take her in for a culture. He symptoms are severe OCD anxiety along with separation anxiety. It took about 3 months for her to return to near normal after her mid January strep. At her worst, she was pretty much non functioning in January. Her first PANDAS episode was probably 2 years ago in first grade. After a bout of strep, her room was obsessively neat to the point that a friend coming over and moving anything would set her off. I thought it was just a neatness phase. However, after her big PANDAS exacerbation in January, the last stage was obsessive neatness as she healed. Therefore, we've linked the previous behavior to PANDAS.

We live in the Dallas area. Our pediatrician is the one listed on Beth Maloney's site who diagnosed our daughter. However, as I had her specify, he only diagnoses. Our neurologist confirmed PANDAS (titers then weren't high) but since our daughter had no physical symptoms, he doesn't treat further. He would do more if there were tics but she only has the OCD portion. Our psychologist is great at working with her using CBT but this only goes so far. I am getting ready to send very long 4 page letters to our pediatrician and ENT giving them consult information of doctors who are currently treating PANDAS and pleading with them to become doctors who treat the illness and not just diagnose. We do change the toothbrushes after any strep and each child has their own tooth paste which is also changed after strep. I have allergies and so my throat is always sore or scratchy. Therefore, anytime there is strep, I'm tested as well. At this point, I'm not sure how to proceed. I'm wondering if I need to hop on a plane to go elsewhere to be treated. My husband doesn't want our daughter on long term antibiotics, however, isn't this the most proven form of treatment? If this is the mode of treatment, how long are your doctors recommending your children be on the antibiotics and what are the long term effects?

Our 9 year old daughter was diagnosed with PANDAS in January at the age of 8. Her behaviors normalized after her bout with strep and treatment with antibiotic and then time. I have seen an upswing in obsessive neatness in the last 2 weeks. Her brother had strep and our daughter was also put on Augmentin for 10 days during that time. The behaviors have continued to increase ever so slightly. I want to stop anything that is starting to happen and want to get a blood test run. I plan to request that her pediatrician run a test for the ASO (Antistrep-O) titer and the AntiDNaseB titer. Is there any other test that I should request when they are doing bloodwork? If these titers are high, then I have an argument for a higher dose of antibiotic, correct? Our pediatrician diagnoses but does not treat PANDAS so I'm hoping I can convince him to consult with other PANDAS doctors.

Our daughter (9) has PANDAS. Our son (5) became sick 2 weeks ago and when I took him in to Acute Care on a Sunday, suspecting influenza as it has been rampant here in Texas for 8 weeks, he ended up testing positive for strep as well. I asked the doctor who saw us to please prescribe for our daughter as well. I explained that she had PANDAS. She put our daughter on a slightly lower dose of Augmentin and our daughter has done well. I have seen a slight uptick in straightening of rooms which always accompanies her PANDAS symptoms when she has a small flare, but so far that has been the extent of it. She has almost finished the antibiotics and I'm hoping that 14 days will have been enough. I will start her on her lower dose again. If I seen an increase, however, I will immediately call our doctor. It is so hard to protect them from strep, especially with siblings who bring things home. Strep seems to always be around, especially during the winter months, so I'm hoping that our doctor will continue to prescribe the precautionary antibiotic.

Our daughter received her booster chicken pox vaccine when she was 7 and in the first grade. Within 14 days of receiving the shot, she had shingles on her ear. At first they thought it was a staph infection as it was blistered, but as it continued to recur and tested negative for staph, it was determined that it was shingles. Merck was very interested in this reaction at the time, but by the time they were involved, the blistering was done and there were no fluid samples available to send to them. The area was inflamed and sore for over a month. During the same fall, our daughter had strep and suddenly her room was neat, OCD neat. She would become very upset if anyone moved anything out of place or if a friend played and moved anything. This lasted for a couple of months and at the time, I thought it was a "phase" and didn't connect it with the strep. In January of 2009, our daughter (8 at the time and in 2nd grade) had her big PANDAS response to strep. She went to bed a "normal" child one evening and woke the next morning consumed by irrational fears. I don't know if there was any connection at all with the varicella vaccine, but I've had thoughts that this was quite a big coincidence as others seem to have similar stories. If they ever require a third booster, she will definitely not get it!