Posts posted by dschneider
If my schedule allows I would like to attend the dinner. Please notify me of time and place.
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!
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
-DonnaJust so you know the facebook voting link automatically gets abbreviated on latitudes since it is long. You will need to click on it, have it go to the page, then cut and paste what is in your browser in order to pass that one on:)
Let me try this "http://apps.facebook.com/pepsirefresh/idea/view/id/e4967728-67c3-102d-9528-0019b9b9e205?ref=mf&fb_sig_in_iframe=1&fb_sig_iframe_key=1ff1de774005f8da13f42943881c655f&fb_sig_locale=en_US&fb_sig_in_new_facebook=1&fb_sig_time=1277388552.504&fb_sig_logged_out_facebook=1&fb_sig_added=0&fb_sig_country=us&fb_sig_api_key=f96f7542a8c3ccef4ea4a3dbb7a59b0e&fb_sig_app_id=263136462520&fb_sig=f34ef3c0abd973b717581402e89ea168&auth_token=ba4fc289f8ce477b5672e31b3cc23ede"
Yep, that worked. The fb voting link is in between those quote marks. Just omit the quote marks when cutting and pasting.
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!
-DonnaRecently posted on facebook... keep in mind that I am tired and could not think of a clever name for the event:)
This week is declared P.A.N.D.A.S.-Refresh the Research Voting Fest!
Help us win a $50K grant for P.A.N.D.A.S. Research! We have ONE WEEK LEFT to win. Please cast a vote every day and pass it on everywhere. This autoimmune disorder needs to be dealt with head on and we are the ones who will get the job done!
Vote from the Pepsi Page
http://www.refresheverything.com/search/?q=pandas Vote from the red box!
Vote from Facebook http://apps.facebook.com/pepsirefresh/idea...b9b9e205?ref=mf
Promote it on Twitter http://pep.si/9EoRvi
In a matter of seconds, your vote can be cast and you can make a difference. A single click (no cost at all) can save a child. How can you pass that up?
P.A.N.D.A.S is a autoimmune disorder that causes OCD, tics, sensory problems, anxiety, and more mainly in kids. This begins with a strep infection (often without a sore throat or fever). If diagnosed correctly, they will be saved from a misdiagnosis of another disorder, unnecessary psychotropic drugs, and unneeded suffering. If treated properly, remission is possible. Please vote every day and help our kids! Thank you!
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.Which brand do you use?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.
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.Do you know if omega 3-6-9 is good for pandas? I've read somewhere that omega 6 is not good for pandas since it is inflammatory.
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...
So sorry you are having problems with the insurance company and so frustrating. Not to cloud the issue further, but I just got off the phone with Dr. K and along with saying that there is no PANDAS cure without IVIG, he said that he believes highly in regular Augmentin over XR exactly because of the Clavulinic acid. He is in the process of investigating if the clav acid is antiinflammatory. He also talked about beta-lactamase needing to be inhibited, even if it is not coming from the strep.
We went back and forth on whether or not Sammy from 'Saving Sammy' is cured or not. He seems to think that Sammy actually still has PANDAS symptoms and that he just hides them or has learned to deal with them. On this one I am going to have to go with Beth Maloney and with her son, who was debilitated with OCD and TICS, and went on to excel in high school and is seemingly a well adjusted, happy, successful college student. And for Sammy, XR was the magic bullet. So who knows. With that said, I think the MOXATAG is worth a try and good luck getting it. I think there is some sort of voucher you can get to keep the cost down. If not, according to Dr. K. at least, regular Augmentin is a good choice. But, he would certainly say don't expect a cure from it.
Also, from Dr. K and Diana Pohlman and LLM who posts on here, theses PANDAS docs are finally getting together to work out a standard treatment, and according to Dr K it is going to be his protocol that is adopted. He told me he has treated 500 PANDAS patients at this point.
PM me if you want to talk. AlexThis is a very timely post for me. Thanks Alex. Our insurance does not cover the Augmentin XR anymore, but does cover Moxatag. I've written to Dr. T to see if he feels this would be a good replacement.
I'll let you know what I hear.
AngelaI pulled this quote from Alex from another thread. I thought it was an important bit of info that needed a new topic. I checked out the website, it may be another tool to add to the PANDAS arsenal.
"I was doing some googling the other day and came acoss a new time release amoxicillin called MOXATAG, which other then Augmentin XR is the only time release amox. The pill is prescribed as a once a day for Strep at 775mg per dose. I have long wondered if the reason that Augmentin XR and Azithromyicn seem to be the most effective antibioitcs for PANDAS is entirely due to the fact that they are the ones that remain in the blood the longest. Azith has a very long half life, 68 hours or something, and XR is extended release. Regular amox, penicillin, and other macrolides peak pretty quickly and then dissapate rapidly. For my son, we feel strongly that he is in an ongoing battle with strep. Anytime he has no antibiotic in his system, seems to me, that his immune system would have to take over and create the dreaded antibodies.
I think it might be worth a try to give this new medicine a shot. For what it is worth, clavulinic acid doesn't really play any role in fighting strep. What it does is prevent other non GABHS bacteria from producing an enzyme called Beta Lactamase , making those bacteria susceptible to penicillin class drugs when they normally wouldn't be. GABHS has no resistance of it's own to penicillin/ amoxicllin. There's more to it but that is the gist.
To help make my case I'll point out that Augmentin XR, the way our kids are taking it, has half the clavulinic acid of regular Augmentin, but seemingly works better for PANDAS, indicating that it is not the clav acid in the XR that is doing the trick. The extended release portion of the XR is straight amox.
This new medicine is prescribed as a once a day but looking at the literature, it is completely gone from the blood PLASMA after 16 hours or so and at a prettly low level after 12. Two pills a day would guarantee constant coverage and still result in less total amoxiciilin, 1500mg per day, then the two Augmentin XR's kids are taking, and have none of the Clav acid, which can be pretty hard on the body. The website says the medicine is for people 12 years and older, but Augmentin XR is supposedly not for kids either. I am tempted to ask for it at our next appt. Here is the link. if anyone is interested. www.moxatag.com/
Thanks for the info, Alex!
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.
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...
Had follow-up appt last on Wednesday. Dr. did rapid strep test and he was negative. Tomorrow morning will be his last dose of antibiotic. He is 85-90% improved on the antibiotic, so I am nervous about the last dose. However, I am in the process of making an appointment to see Dr. Tanya Murphy and if he begins to tic after we stop the Augmentin, the pediatrician will keep him on the abx until we have appt with Dr. Murphy.
The pediatrician is wonderful although she may think I am over-reacting a bit. She thinks his symptoms will subside in a few weeks. That would be wonderful, of course, but in the event they do not, I am doing everything possible to be proactive. I keep reading this board, going backwards in posts, and everything else I can find. Sometimes I tell myself to stop looking for information. I don't want to make symptoms where there are none. Until this episode he was easily one of the healthiest, least likely children to get sick.
One day at a time. Trying to be knowledgeable...
Dear Dschneider--I am so sorry you have had to find this forum, but hopefully the experience of others will be of help--
You obviously have read and have a handle on the abx possibilities. www.pandasnetwork.org is a wealth of info. in case you have not seen it--
Where do you live? Are you able to see a doctor that will prescribe abx for an ongoing trial? If the effects of abx have been positive I think it is vitally important to document, document, document as clearly as possible to help you determine the course of action. Beth Mahoney documented within every few hours of the day at one point--if you can do that and see if there is a trend it may help your decisions as to how to treat--
Dr. K (on his website www.webpediatrics.com) noted that if caught early enough his belief is that abx may be sufficient. All the best as you chart the course through this time--
I had bookmarked his site, and per your post, went back and read Dr. K's site. I actually emailed him and his response was as follows:
"Generally two rounds of antibiotics should be sufficient and hopefully make him COMEPLETELY asymptomatic if this is indeed PANDAS and if this is his FIRST episode.
My son has a follow-up appt with pediatrician on Wednesday. I have not noticed any tic symptoms today...his best day since onset. Needless to say I continue to watch him like a hawk and will continue to document.
I live in Tampa, FL and, per this site have found the name of a Dr. Tanya Murphy who I will contact immediately if pediatrician and I are not seeing eye to eye on treatment.
I am grateful to have found this site. It is a wealth of information...
I hope to have a follow-up appt with dr this week. Any input appreciated.
Nov 10th: Son had H1N1 vaccination, nasal mist, live bacteria
Nov 11th: Son spent day playing with his friend. Friend was diagnosed with strep following day.
Nov 20th: Sudden onset of facial tics. Some shrugging of shoulders.
Nov 20th: Trip to ER. Diagnosis was a childhood tic. Basically told to ignore, but to follow up w/pediatrician the following week.
Nov 24th: Pediatrician visit. Young dr we had not seen before. Not much information except to keep an eye on him and possibly see neurologist.
Nov 25th-Dec 3rd: Tics stayed about the same
Dec 3rd: Low grade fever
Dec 4th: Low grade fever, no tics. Complained of sore throat. I looked in his throat that evening and noticed red "pin-prick" spots. Thought I would take him to walk-in clinic
the next day (Saturday)
Dec 5th: Fever subsided, no complaints about throat. No tics
Dec 6th: Decided to go to clinic to have throat and ears checked before sending him to school the next morning. Throat and ears looked good per examination.
Dec 7th: Went to school. Tics began again.
Dec 8th: Tics increased in frequency and continued to increase.
Dec 15th: I saw picture of strep throat online (looked like red "pin prick" spots I had noticed in his throat on Dec 4th.) I called and made dr appt for next day with the pediatric dr
I prefer to see at office we go to. I went armed with research (At this point I had spent many, many hrs online). Much of my research from this site.
Dec 16th: Son tests very high for strep per the "quick" test done in office. Dr was prepared to start him on antibiotic either way.
Dec 16th: Son starts 10 days of Augmentin.
Dec 19th: Noticeable improvement in tics.
Dec 21st: I am not noticing full fledged tic (eyes roll upward, face stretches), a few eyebrow raises or half of an eye roll. Most often while eating...as if chewing stimulates the tic.
Dec 25th: Still improving. Less ticcing while eating
Dec 27th: Noticed a spell of "half" ticcing this morning. Improved through the day.
I can't say son has developed OCD symptoms, but tics were obvious, sudden and frequent. He is now on 2nd round of Augmentin. 10 day dose did not last 10 days. Seems to last about 8 days. I am making a follow up appt for this week. Should I insist/request to continue him on Augmentin? Until symptoms are completely gone? I don't know why, but today did not seem as good as prior days. Maybe my imagination, but I am keeping a diary, and will see how next few days go. If symptoms seem to be worsening would you ask for stronger doseage of Augmentin? Add Zith? Try Keflex? I, of course, want to be as pro-active as possible. Suggestions appreciated.
Scared to Death - Input PLEASE
in PANS / PANDAS (Lyme included)
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.