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  1. Hi, I live in NC and am my son is being treated at Duke Hospital, and my nephew, with antibotics. We see the Pediatric Infectious Diseases department. Email me and I will give you a name - heveritt1@yahoo.com
  2. I just read this blog about someones kid getting better with glutathione has anyone read it? http://autismwithrhonda.com/glutathione/ Anyone ever heard of this?
  3. I have been dealing with PANDAS with my older son since he was 3 (he is 8 now), however we did not know exactly what we were dealing with until he was 4. What is crazy about your post is that I have never seen anyone say anything about Impetigo and Pandas. I use to always be on this forum and after we gave up and put my oldest on antibotics perminatly (been 3.5 years), unless there is an outbreak, i don't go on here much. anyway, after 3 months with crazy behaviour with my 4 yr old son, depression, anger, crazy mood swings etc. He also kept an ear infection, sinus infection, you name it.. suddenly he started the having to pee every 20 minutes and clingy. We took him back to the doc yesturday for yet a different antibotic adn what do I hear.... He could have STREP in his ears and it maybe be something called PANDAS! I thought I would die, but it all makes sense, he has joint pain, etc. Ok, back to my story about the impetigo. When 2nd son was a baby he got impetigo and at the same time my older one (then 4) got a raging case of the eye tic and ADHD symptoms, it was horrible. I kept taking the younger one in saying it had to be Step, that the other one was reacting to it.. and they blew me off. We finally got rid of it, it went away, then came back and the same thing again. I always thought there was a connection, but no one would listen. So, the story thickens, in the last 4 months my older one has had his tic come back some and had some behaviour problems so I doubled his meds. All his throat cultures were negitive, I could not figure out what was triggering it. During this time, my younger one was having the sudden behaviour problems, I thought I had the devil on my hands.. angry morning and night, then suddenly sad. He was also fighting ear problems, etc since January. So, 10 days ago, I was so worried about my younger one, I forgot to give my older one 2 pills of antibotic a day, only one (this usually would start a tic back). And my younger one was getting treated with Omnisef... my older one cleared up.. no tic! So I wonder if (like at your house) my younger has been triggering my older one the whole time?? What in the world? They have a cousin (4) we think also has this.. I am now convinced that when he was a baby and had impetigo, it was Strep. No dout. So frustrating having 2 in the house with PANDAS problems and their symptoms seem to be so different.
  4. Ok, so we have been treating my older son 8 for 3.5 years now for PANDAS. He has pretty clear symptoms, a eye tic and ADHD symptons with some others, but the minute he starts blinking we know it is on. I was hopeing my younger son 4 would not have to go through this nightmare, but he has had months of these severe mood swings that go along with a low grade fever, then it was a sinus infection, now that same nagging ear infection that has never gone away. But the ONLY sympom is his horrible mood. the irritibality, wakes up mad, goes to bed mad, just pissed (like the orginal post said) all the time, expecially when he is with us. this weekend it changed to depression and he had to pee every 15 minutes. He was depressed, it was totally different, he walked slow, has a sad face, just so sad all weekend so I took him back to the doctor because I figured the ears were not better and the Omnisef was not working. I was right, still has an ear infection (oh, he has had joint pain for 2 years). But still, his only sympton is mood. They told me, he might have Strep in his ear and the behavoir could be PANDAS! Seriously! How can I have this twice in one house! So, long story, I guess now I have one with irritability as a main sympton. That is so hard, a tic is actually easier to figure out.
  5. Hi Lisa, I am in Raleigh. I have been on and off of this wonderful forum for a few years now. I usually come on now only when we are having another episode. We have been dealing with this since my son was 3.5 yrs. He turns 7 in a month. I have tried everything, every kind of doctor and would love to share my story (I have typed it in several times). my email address is heveritt1@yahoo.com if you would like to chat over the phone, I can send you my home number. I was lucky recently and changed doctors and come to find out the doctor treats her son for PANDAS, so that helps. Good luck
  6. Hi there! We had a stall on the tonsillectomy surgery because DD ended up with strep. She received two weeks of antbiotics, and then had the surgery. After the surgery they gave her antibiotics for recovery. I'm not sure if they dosed her up at the hospital with any antibiotics in her IV, but after about 4 weeks of antbiotics in her system she seemed good to go in the mood department. Her surgery was in May 2007, and the 9 month antibiotic course began in early September. She had a couple slip ups during the summer, but in August 2007 was when we noticed the turn for the worst. Her 9 months of antibiotics began September 2007 and ended May 2008. She did great all summer long and then we noticed her moods started tanking quickly around October. She's been put back on antibiotics (just the cephlaxen) since late October, but we haven't seen much improvement. Wednesday she'll be seeing a sleep neurologist... in the past she's seen a pediatric nuerologist who found results in her EEGs & MRI of patterns in her sleep area that were indicitive of seizures, but then he felt that it wasn't enough to go on to make a diagnoses and basically dropped us. ::sigh:: We're hoping round two with a different pediatric SN doctor that we'll have better luck. We're also going to talk to DD's Infectious Disease specialist about changing her antibiotics to the azythromicin (sp?) to see if that helps. A few on the forum have suggested it. We have been struggling with the Pandas/strep/tic issue for a couple of years now. I feel like we have seen everyone and tried lots of things you read about on these forums (most of which I have learned about here). We did decide to take his tonsils out right before Kindergarten (aug 07). He actually never had a throat swab test be positive before that, but the blood test always showed signs of strep. Up until the tonsils were out, if the tic came on we gave him antibotics and boom, it was gone. After the tonsils were out, he was OK for a month then it came back and bad. I remember it took Several different antibotics and about 3 months for it to go away. I finally found a doctor that treats her son for PANDAS and felt more confortable with prophylactic antibiotic treatment. We use 800 mgs of amox a day and it seems to work well. Of course I hate to think he has to be on antibotics all the time, so I have taken him off a couple of times only for it all to come back! Recently, I took him off for 3 weeks, and I got strep in my sinus's... his came back and for the first time ever he tested positive in his throat. he went on 10 days of Omnisef and nothing... then zithromax and with in 2 days it was 50% better. We finished the zithro and went back on the amox and it is almost completly gone and his behaviour has been back to normal too. You might want to try a different antibotic, we even used Clindomysin (SW) once. I actually get the amox made at the compond center so it is a die free medicine. Good luck!! I know it is so heartbreaking, when it is gone it is easy to forget how bad it is, until it comes back.
  7. Hi there, My son is 6.5 and this all started when he was 4 yrs old. We have done several diet changes also, but recently we decided we could not tell much of a difference having him off os dairy and wheat to we started back again. I guess it could have weakened his immune system right about the time I let the antibotics lapse. I am headed to the doc today to have my throat checked since I am alway sick too. I take him to the doc tomorrow to beg for mor Zith. I will say that after 2 days he was MUCH better, then this morning I see it again already. But the behaviour has settled some.
  8. I just took my son off his daily dose of amox in the beginning of Sept. He has been good for 6-8 months (seemed so long, I can not remember). I thought things were good. Well, I brought home strep in my sinus's, put him right back on his anitobics and it was to late. He is having such a bad episond right now I am so mad at myself for trying this. Once I get it under control again, we will keep him on a daily dose for a long time.
  9. Interesting article. The inhaler is not supossed to actually cary any of the antibotic to my blood stream, so I don't get the usual side effects. Still good to know. I wish both of us could just get off of antibotics. It is crazy. I am calling the doc about me again today, I have the drainage, etc coming back. I might ask for the throat culture just to be safe. I just wanted to make sure that you're aware of the potential for tendon problems assoc. with cipro. It now has a black box warning regarding it. I have taken cipro for UTI and had no problem. It was prescribed for my oldest son for a staph infection. The Ped had given us Bactrum, then called and said the lab recommended cipro after the culture. There was a note of "what ever," in Peds voice (I got the impression that he didn't really feel cipro was necessary). I read about cipro's side effects which listed seizures as one, among others that I didn't feel were great for a child with a neuro issue. I decided we would stick with the Bactrum after speaking with a pharmacist who said he didn't think there was any significant danger of MRSA complications by using bac, instead of cipro. He did say not to throw away the filled cipro script as it's a very expensive drug. I guess I'm getting a little off topic here, but I do feel with possible autoimmune problem in the family (connective tissue problems in some cases?) probably a good idea to be aware of this. http://latimesblogs.latimes.com/booster_sh...-joins-the.html
  10. Thanks for the response. I changed doctors last year after it was evident that our current ped was a bit tired of us and really did not know what to do next. He actually suggested long term antibotics, but at the time I was not interested and thought that was crazy. I did end up at a different peditrician who actually treats her own son for PANDAS. She made sure his titers were high before prescribing long term( since he never had a positive throat culture). I am going to try and get in with her this week to see if she will change the zith from 5 days to 15 or 20. As for my strep issue, I have had sinus surgary so he can get way into my sinus's for a culture. they have me on a new treatment right now, it is a sinus antibotic inhaler. I inhale cipro "steam" for 6 minutes or so. It is supossed to fumagate my sinus's to get rid of the bacteria that regular antibotics cannot. I am not sure if is working so good as I seem to be getting a cough and thoat thing again. I might actually just get my throat cultured again as a precation. Thanks for all of the info. Hopeing to see things slow down in the next few days. It was really bad today.
  11. I have not been on the post in a while, my son was in a remission for about 8 months. I have fought with the idea of having him on long term antibotics and after a very long fight with the tic and behavior the doc prescribed 800 mg of amox. I had it made at a componding place so it would be die free. Just thought I would share what I think was my latest mistake, "I wish I had not", experience. After 3 months of the amox, things are good. I decided it was time to see what happened if he was taken off. He was off for 3 weeks. In the mean time, I developed another bad case of sinusitus and was not cured with 14 days of omnicef and a round of steroids, the doc did a culture from my sinus's. Sure enough it was strep!! I immediatly came home and started ds on his amox again, but 2 weeks later some strange behavior started, more trouble at school.. then the eye tic. He did develope a cough, but no fever or sore throat. I took him to the doc and he actually tested positive for strep. He has never actually tested positive in throat, usually just the titers are high and the onset symptoms. I regret letting the amox lapse as he can barely function now. He blinks, eye rolls wtih his whole face every second or so. So, that is my two cents worth. I know it will take a month or more of stronger antibotics again to ge rid of it again ,and this time I will keep him on his prevenative dose (if it works again).
  12. Hi, I have not been on this forum in 6 months or so. We were in the "clean" stages> we have been dealing with PANDAS 2 or 3 years now. We have neurologist, thearpist, naturopath, you name it. Lately he has been fine so I decided to take him off his preventive dose of Amox. During that 3 weeks I got sick with another sinus infection(I am cronic) and after a dose of antibotica and steriod I was no better they did a culture. Sure enough, I had Strep in my sinus's! I immediatly came home and put him back on his antibotics, but 3 weeks later he came up with a cough, etc. I took him in and she wanted to do a throat culture. I assured her that he never had a positive throat culture, but if we did a blood test one of his titers would be elevated. his tic was also back.. and bad. His culture was positive! First ever, and along with it was the headaches, hyper, negitave out of control behavior and the eye tic (with facial moves). I saw in your message that your daughters sister was a carrier, how did you find this out? I have had my throat cultured before and it was negitave. Any suggestions?? My ds just finished a round of omnisef and nothing changed (it just got worse), he still missed 3 days of school in a week. The weekend PA gave us 5 days of Zith, but I think we need more. Back when I visited the forum alot, zith was not the most popular med, but now it seems to be.
  13. I did try Bright Spark along with the Focus Formula - I made the mistake of the buy 2 get one free. I am not sure if it worked or not. It seemed to do OK, but I took it to my naturopath and she said the Focus formula had alcohol in it and she suggested Deproloft and Nutri Add (which I buy from her). she said that the Native Remedies have not been clinically studied, but that Deproloft and Nutri ADD had. I just started to worry about buying over the internet somethign for my child. it should be fine though, I showed to the pediatrician and the neurologist and both said they had seen other people use that before and it was fine. Oh, I also showed it to the person we saw at Duke Univ in ID department, she also said it was OK. That is my take on it, hope that helps. About the Deproloft and Nutri ADD, I still do nto know if that helps or not. I am going to continue it until school gets out then take the summer off and re-evaluate next year since it is expensive and I don't see HUGE improvments. You just never know what it is, we just had to start the antibotics again for another round of tics/behaviour problems. I dont know if it is food or what? I am thinking of ordering the IntraKid to give it a try.
  14. Hi everyone, we have a long history with PANDAS and we are having another round right now. I just got back from the neauroligist and he went over some numbers from when he had a bout in February. I am so mad, since the neurologist said ASO was fine (120) but that the Anti DNASE showed a detected level, but that they don't treat strep and sent me back to the peds. My peds said it was not elevated, so I did not treat him. I did give him some silver colloriad and Grape seed extract and it got better, but still was around. About 2 weeks ago the tic came back during the day more and the behavior and frequent urination came back pretty bad (these are usually our tip offs). Just thought I would tell you what my doc said about the numbers. I can not remember now who had their results, but I would say PANDAS based on those numbers. They say for a school age kid under 200 is normal for the ASO Titers. For the Anti DNASE and a school age kid - normal is under 170 and I think someone had a number close to 689. My sons was 240, which might not seem like it is too terribly elivated, but he is sensitive to everything. I believe any elevation will effect him. My husband still says it is anxiety, etc. But our visit proved yet again that it is probably PANDAS. Our neurologist is really good, he does believe in it, but says it is not "clinically proven" yet and it might be 5 years or so before they have enough data. I have been fighting the use of antibotics, but I think with all the strep going around it is a problem. So, I just started him back on Amox to get him through the season. We had a compounding place whip up some die free/ allergen free for us. (my son is on an egg free, dairy free, gluten free and die free diet for behavior) Anyway, hope this helps.
  15. 'Jasminky' Hi, My son's tic is back and the behavior is terrible again. Like night and day in a minutes notice. What behavior's did your daughter have with the tic and has this suppliment helped with the behavior?
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