dschneider

Hi, Although I read the forum daily, I seldom post, but your post has prompted me to do so. I found this board in December 2009 after my son had a sudden onset of eye-rolling and mouth drooping. Then a slow build up of other symptoms such as separation anxiety, chorea movements in his hands. When the onset of eye-rolling occurred we went to the emergency room where I was told it was a transient tic. Then a trip to the pediatrician where I was given the same opinion. Approximately 3 weeks after the occurrence, on a Friday night he complained of a sore throat and I could see red spots at the back of his mouth. I took him to a walk-in clinic the following day, but the spots were gone and they thought he was "fine". My constant research led me to this site and I immediately called the pediatrician to have him tested for strep. This was almost 30 days after the sudden onset of eye-rolling. By this time other symptoms had arisen. Although asymptomatic for strep he tested positive. The pediatrician was not concerned it was PANDAS, but at my insistence, did prescribe Augmentin vs. her preferred Amoxicillan. His symptoms improved greatly within 3 days. The eye-rolling became minimized. I was fortunate to get an appointment with Dr. Murphy is St. Petersburg, FL and the pediatrician (begrudgingly)agreed to keep my son on Augmentin until that appointment. My son had the flu mist H1N1 shot in November 2009 and was exposed to strep the following day and the consensus is that the combination caused his PANDAS outbreak. (There will be no more flu vacs and I may balk at any other vaccinations, as well.) Since then he has not had strep, but did have several outbreaks for 16 months. Frequently we knew it was because he had been exposed to strep. Some of the outbreaks were mild and some more severe and he was kept on Augmentin for most of the time. In September of 2011 he got off the bus and commented his eyes were doing that "funny" thing again. A few months had passed since any major symptoms, and as it turned out his classmate, who sits next to him had strep. My son did not test positive for strep and the eye-roll was minor and short lived. He has not had an antibiotic in a year. I am not telling the story with the emotion that I should, but I know that each parent here has, or is, living the fear of a sick child and there was a 12-month period when I could not pry my eyes off him, that I could not love him enough as I waited to see what each day would bring. I do not know what the future holds, but I am ever grateful to all of the knowledgeable parents on this forum who are here to share information and give comfort to each other. Is my son "cured" or in "remission"? I do not know, but I am prepared to battle PANDAS if and when the symptoms strike again. Dr. Murphy's office stated my son has the mildest/or one of the mildest cases they have seen and I often wonder if the outcome would be different if I had not found this board and the courage to battle a pediatrician who was not totally on board. A poster at this forum recommended a pediatrician that my son now sees and I am comfortable I am surrounded with people who will take care of him, if needed. Your post prompted me to write this update. I keep each child that is written about on this forum in my thoughts and prayers and have great admiration for all of the parents here. And, again, I am so grateful for the knowledge you share. -Donna

If my schedule allows I would like to attend the dinner. Please notify me of time and place. Donna

Per a young doctor in her office a few months ago, it is my understanding that Dr. Murphy in the Tampa area is researching the possibility that the clavulanic acid is what is most beneficial in the PANDAS individual.

Kelly and Vickie...you both are fantabulous! To get PANDAS to the top ten in 2 months is just amazing. Thank you both for all the time you dedicated to this project. Please do let us know what groups voted for us that need support next month, as I will be there for them. And again, you two are awesome! -Donna

Fan-tabulous for your daughter! I enjoy reading about every milestone for everyone of our PANDAS children. A wonderful update

Thanks for the long link, Vickie! Did you know you can take a long link to http://tiny.cc/ and it will shorten the long link? Thus, this http://apps.facebook.com/pepsirefresh/idea...672e31b3cc23ede turns into this http://tiny.cc/oxdjl !!! -Donna

Vickie: Thank you for this great post. I will use it in my emails today. My husband and I own a real estate company and up until yesterday I have only been campaigning for votes from friends and family...but I have emailed and forewarned all our clients and co-Realtors that I will be emailing them everday asking for a vote. What a response I had last night from my first email! However, there were several who were not able to vote as they use IE and got stuck...so I am borrowing your email below to send to my list today. Thanks! -Donna

Dr Murphy recommended, and it has worked for us, Coromega Omega 3. We buy the orange flavored packets. She stated you do ot want to give Omega 6's and that the Omega 3 deters the Omega 6's from causing inflammation...not sure I am saying that precisely. Also, it takes about 30 days for Omega 3 to take effect and I found that to be true.

My son takes only Omega 3 fish oil as instructed by Dr. Murphy. I did take him off for a short while and began noticing his eye tic and a slight change in behaviour. I do feel the Omega 3 is beneficial.

Adding my thanks to Kelly and Vickie. Two awesome ladies as well as an amazing and dedicated group of people behind this effort to raise money for PANDAS. I collected a few more proxy votes today and look forward to seeing PANDAS in the top 10 in June.

I have not been able to vote for several days due to the slowness of the site. I tried Safari this morning instead of Internet Explorer and got my votes in quickly. Hurray!

My son had molluscum contagiosum. Started at 4-1/2 during the period he took swimming lessons. For months there were only 3 or 4 on his side, then there was a sudden explosion of close to 40 on his back. We had them "frozen" off last August to keep them from spreading. Onset of PANDAS in November....

My son had a follow-up appt at Dr Tanya Murphy's office today. Today we saw a young Dr. who works with her. He stated that there is suggestion (and maybe he mentioned a possible study, I cannot recall) that it is the Clavulinic acid that is effective and not the amoxicillin for PANDAS patients. He mentioned the possiblility of trying children on straight Clavulanic acid (and again, I cannot recall if the word study was used). I will inquire more my next visit. My 5-1/2 yr old son who presented suddenly with motor tics on 11/20/09, was incorrectly diagnosed until 12/16/09 and then was diagosed with strep, thanks to a picture of strep throat I found on the internet and this board. He has completed 30-days of antibiotics and is now off of them for 7-days. He is 90%+ symptom free and continues to show improvement. During the month of antibiotics he took Augmentin ES-600 (2x the Augmentin to Clavulinc acid) and for a very short time, regular Augmentin. I felt he did better on the Augmentin ES-600, at a higher dose, but there may have been some circumstances that occurred during his time on Augmentin that influence this opinion. Like many others on the board I am giving supplements. Omega-3, Vitamin D, magnesium and a multi-vitamin. A week ago I added bilberry extract. I have searched this board to see if others use it, but did not see much. Supposedly, "bilberry can also help to decrease the permeability of the blood-brain barrier to pollutants, drugs and other undesirable chemicals by improving the resistance of the capillaries in the brain to the transfer of such substances through their walls. It does so by preventing the collagen of the capillaries in the brain being degraded either by enzymes or other agents, Also, by helping to strengthen that collagen structure so that it becomes more impermeable to the larger molecules that form the pollutants". We are giving it a try. The knowlege I glean from this board and feeling secure my son's care is being overseen by someone very competent in this field is a comfort... -Donna

Our pediatrician originally prescribed Augmentin ES-600 (1-1/4 tsp 2xday). My son improved from original tic onset by 80-90%. Last week we saw Dr. Murphy and she changed his prescription to Augmentin 400 (1 tsp 2xday). Within 36 hours I saw a decline in my son. On Sunday afternoon I started him back on the Augmentin ES-600 and he showed marked improvement. He is doing very well today. Augmentin ES has double the dose of amoxicillin as regular Augmentin and the same amount of clavulanate as regular Augmentin. I read a back thread that discussed being cautious about giving too much clavulanate. My questions are in layman's language what would be a maximum dosage of regular Augmentin 400 for a (5-yr old) 45-lb child? In ml or tsp? What would be a maximum dosage of Augmentin ES-600 for a 45 lb child? In ml or tsp? Is Augmentin XR a possibility? It is my understanding (from a previous thread, I think...I am in information overload with reading threads) that Augmentin XR is not used in younger children. I will be going to our pharmacy in the morning to speak with pharmacist also, but any information is appreciated. I intend to call Dr. Murphy's office tomorrow and explain the decline and improvement in the two Augmentins and implore that the the dose be high enough, within safe range, to benefit him the most. When I see him doing so wel, I of course, want to continue in that direction. Help with the mathematics of Augmentin dosages is much appreciated. -Donna

My 5-1/2 year old son had his first appointment with Dr. Tanya Murphy this past week. Until 11/20/09 he had no symptoms of PANDAS. On 11/20/09 he developed facial/eye tics, shoulder shrugging. Later a slight choreiform movement in fingers. On 11/10/09 my son had the H1N1 flu vaccine, nasal mist. on 11/11/09 he played for several hours with another child who was diagnosed a day later with strep throat. Strep had also been active in his kindergarten class. My son has never had strep and is seldom sick. Dr. Murphy suggests he may have an over-active immune system and that being exposed to H1N1 live bacteria and strep at the same time may have initiated the tics/PANDAS. Thanks to the internet and these boards especially, I realized on Dec 16th that he might have strep although he showed no symptoms, but he had complained of a sore throat a couple of weeks before. However, it was a weekend and when I took him to the clinic the next day his throat showed clear. (I noticed small red dots the night before in throat). The clinic did not test for strep. Nor did the ER on 11/20 or the pediatrician appt on 11/24. I post because I strongly feel the H1N1 vaccine somehow, helped trigger the tics. My gut instinct to not get the vaccine has proven correct. And, as we all know, the clock cannot be turned back. Dr. Murphy changed my son's Augmentin ES prescription (prescribed by pediatrician) to regular Augmentin and has recommended we add Vitamin D, increase magnesium, add Omega-3 and continue with multi-vitamin. My son's lab work was done Thursday. I do not know if we will have the results prior to our follow-up appt on the 27th. The antibiotic has greatly diminished my son's tics. They are still there, but not noticeable to most people. Some days are near perfect, others not so perfect. It is not appropriate for me to complain when I read some of the other stories on this board. However, I am consumed by what is currently happening in my son's life... -Donna