heveritt1

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

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?

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.

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.

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

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.

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.

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.

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

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.

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).

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.

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.

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.

'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?

I do kind of regret bringing this to the school attention before school started. I did feel like he had a microscope on him all the time an he was in trouble ALL the time. I am not the best at this, but we have to fight for out little ones. The principal was talking to me about his anger issues at school, weather he is doing some things on purpose or instinct. I told her that he never had this type of behaviour before goign to public school, and the first 2 weeks of school at a schoolwide picnic I saw a boy punching my son. Then a couple of weeks after that, in the lunch room I saw the same boy punch my son in the stomach right in front of me. She kind of dropped it after that, for now. His new teacher has so much autism experience so that has been a huge help. I think he still has the same problems with focusing and following direction, but maybe she works with him differently. We get more good days than bad now and I think that makes him feel so much better. I think he had some foods that are not on his list, so today might be a different story. I could tell this morning he was different, angry again. And when we pulled up in the school carpool line he was panicking to get out and go to the bathroom. I hope this is not going to be another episode of PANDAs. About the tennex, we were given this a year ago. I used it when thing got really bad at the beginnning of the school year. He fell asleep in class. It was so sad, but also sad to see him blink so much and the kids were saying things to him. It never seemed to help with the tic, it just helps calm his nerves. I still keep it around, because he sometimes gets so hyped up for days when he starts the blinking that he can rest. he use to tell me his wished his brain could jump out of his head. Back to my first paragraph, we tried to move him to a private school for a calmer environment and we made the mistake of telling him. Needless to say, he was not excepted. Once you have a bad behavior rap at school it is hard to get them into a private since the teacher has to fill out a behavior survey about the kids.

trubiano I am glad the talk with the principal went well. I am not sure if the doctor will do the food sensitivity test, the medical doctors don't believe in it as much. The American Assoc of Pediatrics just released an artical saying that they have finally finished a study saying that they have been wrong for all these years they were wrong.... foods can effect behaviour! About the immune system, my youngest (not the one with the tic) and I both have tested out immune system and had one of our IGG subclasses come out low. We assume Stelrling has the same problem. He is always getting skin problems, etc. that will never go away. He has just had this bout with ringworm for 4 months. He took 2 antibotics, 2 antibotic creams and is not on an anti -fungal. He was on an antibotic last year for almost a year. It was weird, he would get the tic, we gave him an antibotic and it was gone. The doctors still act like they can not explain that??I think that means PANDAS, but you know how it is hard to get anyone to diagnose PANDAS. Anyway, his tic has been back on and off for a month but I have not gone as far as the antibotic yet, I am trying to hold off. Keep me posted how it goes with the school.

Hi there, I am also in same boat. We have been through alot with the school so I thought I would add my experience. We have had the tic on and off for over a year, we have a neurologist, natropath, pychologist, you name it, we have it. When he started Kindergarten the tic was so bad, along with the behaviour problems. He can't focus, can't sit still, won't follow directions is all I heard, he was getting sent to the principals office for silly things (just my option). I almost felt like that since I brought attention to the issues before school started I set him up for problems. I talk with the principal alot and she suggested an IEP and ADHD meds, I am totally against this and very open about my wish to treat him naturally. I reminded her that he has possible PANDA's, sensory, anxiety and food intolorances so every piece of this can make focussing and sitting still all day hard. He is doing great with the learning, I actually think he gets a bit bored. Well, we are doing much better right now (for this minute) the tic is back some, but I think it is because he is getting exposed to the flu and strep all the time right now. It is not that noticable so I am just ignoring it for the time being. Here are some steps that helped him. First we took him off all the artifical dies and colors, preservitives (he already had an egg allergy). We started seeing the natropath and here is what we do - NutriADD (a homopathic suppliment for focusing), Deproloft (another, similar to HTP I imagine), multi vitiams twice a day and Taurine when he is having a blinking spell. The school gives him the NutriADD and Deproloft after lunch to help him get through the day. In the mornings I give him a "immune cocktail" of concord grape juice (to hide colors and flavors) with Luerch powder (not sure I am spelling this correctly, it is an immune booster) and a 1/2 teaspoon of Cod Liver Oil. If there are colds moving around I add Sambuca and Echanicia and Hybiscus. Oh, and a proboitic twice a day. We had the food sensitivity test done and he was off the charts for all Dairy and Wheat Gluten. So, since Christmas we have been Gluten, Egg, Dairy/Casien and Die free! It sounds bad, but you get use to it. I think the diet changes have helped tremdously. He got a new teacher in January and she has 8 years experience with Austism, so I think that has been great for him. She even requested kids not bring candy for Valentines, I loved that! He does not seem to be in trouble as much. They have started a morning chart for him that seems to be doing good. The goal is for him to come in the room, say Good Morning and do the things he should do every day. Follow direction! They are working with him, so hopefully, by first grade it will get better. You never know, I always see stories on this forum about kids getting worse in 2nd and 3rd grade. it is definatly unfortunate to have a teacher that refuses to try and understand.

Last fall my husband and I did a ton of research on this topic and it seemed the overwhelming thought was LCD was better. I think it does not refresh, or if it does it is low. We bought a new LCD for the family room and a new monitor for his computer. I think it has been a good investment. His tic is gone for right now, but when it is here he does much better on our TV. He could be having a low tic day, then go next door where they have and older TV and come back blinking so bad. The same goes for when he is at his afterschool and they watch a movie, I will notice an increase in the tic. I am not sure the reason for not going with plasma, but at the time the research pointed towards LCD. You might want to do a search on the ACN board to see if some old research comes up. I feel sure I got the information from this board. Good luck. I know how hard it is to try and figure all of this out and help our little ones.

Thank you so much Chemar! Amazing how you put it onto words. I think most people that come to this site have felt helpless at some point so this is great inspiration. I plan to share it with a friend I know having a difficult test done on her baby today.

I have never heard of that treatment either. My son's tic just came back again after 3.5 months. I knew he was exposed to strep so we did the blood test and his ASO was 100, but the blood strep test (not sure exactly what it was, still waiting for the docs call) was positive. We do not have the DNAT? something like that) test results back yet. We started the colloidal silver and grape seed extract on Tuesday and the tic is much better? Any experience with this?

Hi there, I thought I would give you my quick tonsil story. My entire story is long with many, many doctors and now a naturalpath. My son started with an eye tick at 4. He has never actually had strep throat, but his titers were high when this started. All his symptoms point to PANDAS, but there is not a doctor around here that will diagnos it as such. We went on antibotics, it went away. Quit the antibotics, it came back. This went on and on and his behaviour was pretty bad at the same time. Over the summer we went to the ENT (this was before our real research and our visits to Duke and a neurologist, etc). We decided to take the tonsils out, it was a long shot and the doctor never said he could see anything wrong. After the surgary the doctor said that his tonsils were "rotten" and full of bacteria, this is gross, but they "burst" when he touched them. Needless to say, we were glad we had them out since we would have never known they were not healthy tonsils, however, Strep was not the bacteria in the tonsils. It did not really fix that problem and the tic was back in 30 days - along with some really difficult behaviour at school. Anyway, we are still trucking along. We went through 2 months of antibotics to get rid of it this time so we are keeping our fingers crossed. Good luck with everything.

It seems no mater which forum I pick, all the stories sound the same as mine. Everyone has done so much research already, I find that I seem to know more than any of the doctors I see. My son started an eye tic about a year ago, his ASO test was high and antibotics worked almost immediatly. Our youngest just happens to bet this skin infection over and over and the oldest will start with the tic, ADHD symptoms and wetting his pants and even speaking in these choppy sentances. We even had his tonsils out in August. After the PED said for us to leave him on Amox for 1 year we kind of freaked and started looking for more reasons/help. Little did I know what kind a of a mess would be started. His eye tic came back really bad about 4 weeks ago, it was onset in a flash it was back. The following weeks he has a tough time at school, getting in trouble, etc. We started with Amox, went to Kephlex for 10 days them Clindomyson (spelling?) for 10 days, now back to Amox. Nothing seemed to work until this week when we started back with the Amox, however, we also have taken Casien (the best we can) our of his diet and food coloring/ etc. Anyway, we got in at Duke Infectious Des. dept, and after 4 hours of talking about PANDA's, she basically said, see a Neurologist. Seems doctors have a huge problem dignosing PANDA's. She said PANDAS should not be treated with more than 5 days of antibotics, and we should give him 10 more days then stop. I told her I was really worried because it had gotten so much better (ofcourse he did not tic the entire 4 hours we were there), I am afraid if we take him off, it will start right back up. She just looked at me and said "well, if that happens then I would be very interested in knowing". I also went to an immunologist and might schedule an IGG test. The Imm doc had never heard of PANDAS. So next up is the neurologist, the phycologist and a naturalpath (for help with supplements). Anyway, it is so hard to watch him strugle and to miss out of candy, TV and things like that. He is handling it pretty well so far, it is just all so hard. Do any of your kids compain of headaches also? must go, baby crying. good luck to all. Look forward to learning more tomorrow.

Wow, sometimes I read these post and can not believe how similiar the situations are to my own. I just read this whole panel and have never thought about some of these things. We have a huge problem with TV etc. and have only one small LCD TV. Antibotics have not been working with the tic this time, so we are just doing so much research, doct appts. We are even changing him to a private school because his senses are so bad he covers his ears during class and is always in trouble. I have a question for Q's mom, I have a delayed allergy to Casien and have recently finally figured out that dairy does bother me some, so I want to do a Casien free diet test with my son, but he is rejecting it so bad. He has an egg allergy, so he is so mad I am telling him he will have to stop drinking milk. How did you do it? I also just got the Feingold diet in the mail and need to get into it also. It is all so much, I tell you I am so overwhelmed lately (not to mention I work full-time). Anyway, I will also look into the light sensivity thing too. Makes total sense. Thanks for all the post! Holly

Thanks for your suggestions Kim. you mentioned maybe having the baby looked at again so we had blood work on him to check his immune system, he is slightly sick all the time. He handles it pretty well, so I think it is what he is use to. We got the doc to give us Clindimsun (that is spelled very wrong). Appearnatly it is being percribed for Pandas lately. My doctor is working with a specialist at UNC. It started to work, then the tic came back, so I am wondering if it is yeast or something of that nature. The doctor sent us to a naurologist,so I think he is done treating my son for now. I also made an appt with an immunologist to have IGG and other test done. He is having such a tough time at school, we are even moving him to a small private school. He simply can not handle too much activity. Anyway, thanks for the suggestion. These post are so helpful. PS. Please excuse my spelling, long day