dominique

My son has Pandas. About a year ago we went to an infectious disease doc and she put my son (8yrs old) on clindamycin for 10 days. (3 times a day) When finished he was symptom free! It has been over a year now and he is still free of ticking, ocd, anxiety attacks, everything. It seemed to do the trick, thank god. At least until he gets another case of strep. Dominique

,I too went for over a year of doing research. Constantly on the internet, reading, talking with doctors all of the United States trying to find a solution for my sons ticks and OCD. One day he woke up blinking his eyes. Lasted about 2 months. Took him to his doctor every week asking him why this was happening . He said it is normal and kids just get ticks. Then about 2 months later they stopped and about a month later started up again. This time worse. It then went away again and about 5 months later after getting 4 teeth pulled all at once, he woke up with a neck jerking motion. That went on for about 2 weeks, then it was wrist jerking and leg jerking. This went on for months along with major OCD as well. He would freak out if anyone even sat on his bed. He was full of anxiety and especially due to separation. I also noticed that he was having difficulty breathing. His nose was completely stuffed up too. I thought it might be allergies. I once again went back to our family doctor asking him for help. He kept saying, nothing was wrong, kids get ticks and they go away. They come and go. I then did research on Tourettes and it mentioned Pandas. I went back to our doctor and asked if Pandas was a possibility since the ticking came on very suddenly and OCD as well. He had turned into a different child overnight. He said that he would test for strep. He tested positive. By now, it was too late, he had already had the strep for months and the bad proteins had developed and they were attacking the Basil Ganglia of his brain creating the movement disorder and the OCD. The doc put him on antibiotics and they did not work, which I hear is common with Pandas. We then took our son to a infectious disease doc in San Francisco who put him immediately on a strong antibiotic cocktail of 3 different antibiotics. She was determined to eradicate it. She and another doctor in Texas said he should have his tonsils and adnoids removed immediately. It lives in the nasal pharnyx cavity of children supposedly. The strep was everywhere. In his adnoids, blood, gut everywhere. It was even coming out of his nostrils. We also had a Pandas test which was Positive! We had the operation and did the antibiotics. He has never had another tick since. His breathing is perfect. No more allergies. No more stuffy noses. No more OCD . I have my child back! He seems totally healthy. It has been a year now and he will be 10 in Jan. We are on a program right now with a doctor on the east coast. I give him over 40 herbs a day. No dairy, no wheat, no gluten, no casein no meat. He also uses a great product called XClear. It is a nose spray. We all use it twice a day. Kills strep on contact. He also gargles with Biotene Mouthwash every day. Takes 2,000mg. of vitamin C/sodium ascorbate daily and lots of cranberry. Our Doctor has a strep protocol and believes that by following it carefully it will keep the gut in balance and make it an environment where strep can't survive any longer. It has been a long journey for us. I too have become incredibly neurotic. I worry everytime he gets invited to a birthday party or goes to a friends house. My relatives think I am nuts! My husband and I almost got divorced last year because of the stress of it all. The year he was so sick, I couldn't leave the house, I saw nobody that I knew. I didn't go to work and I lost 28 pounds. We almost lost our house due to this. Every time I had a phone consultation it cost 300.00. This website saved my Life and sanity! Even though my son is back, I never take a day of it for granted. Every day, I make sure that he eats well, takes his smoothies and most important his C and nose spray. The bad protein that he developed from the strep will never go away. If he ever gets strep again, he will get those same symptoms all over again. My mission is to hopefully keep him from ever getting it again. It is suppose to disappear after puberty. I think I can hang in there until then. So far , so good. Dominique

Just a couple of weeks after his 12th birthday, my son started with tics. (His bday was at the end of February) But we started him on a multivitamin that very day, add I added mag & calcium and over a period of two weeks his ticcing calmed down a lot. He still tics but it is not as devasting as they were. I don't know at this point if his tics are in the waning period or if they have decreased in severity b/c of the vitamins. Or does it not matter when it comes to waxing and waning?? Ugh. I'm still learning the terminology at this point. Loren Loren, Same with our son. We started him on bontech vitamins just days after i saw his first tic (eye blimking) in December 06. He still tics some today. Not sure if it is all allergy related, food related (going to an environmental Dr. tomorrow) or what? Also not sure how much ther vitamins are affecting him because we started supplementing right away and we are not ready to pull back on vits to see how he is. Our son started eye blinking when he was around 6 years old just for a couple of weeks and it stopped. One year later in Feb. i believe he started again for about 2 weeks or so. Then it suddenly stopped and 2 weeks later full on neck jerks, hand wrist and leg jerks and 2 weeks after that major ocd. It turns out that he had had strep for months and we didnt know it. Never diagnosed after almost a dozen trips to the family doc. He never did a throat culture until it was too late. 9 months later after a 10 day round of clyndamycin and tonsils and adnoid removal and a strict diet, no dairy,wheat,gluten or sugar and religiously on the Yasko strep protocol to balance his system so strep can't thrive anylonger he is symptomfree completely. What ever it was that did the trick im afraid to stop. This seemed to work for our son. Dr. Yaskos theory is that once you balance your gut and body that an autoimmune response to strep or whatever can actually disappear eventually and after 6 months on her program i think that is what is happening finally with our son. Hes never looked so good and he says he feels fantastic. I know that could all change if he gets another overload of strep in his system, but im determined to try and create and environment in his gut where strep can no longer thrive like before. It loves low glutathiione and high alluminum. It holds on to alluminun supposedly.and that why it hard to get rid of and keeps returning. Were trying to get rid of the alluminum(horsetail grass and edta) and then hopefully the strep will go with it. Dr. Yasko feels that one can keep reinfecting themselves with it that the strep lives in the nasalpharnex cavity. I think that the adnoids not sure. Anyhow this seems to be working for us, hes been symptomfree since Dec 15th. I never take one day of his health for granted. By the way he was diagnosed in Sept. with Pandas. The doctor said he had the highest antigens hes ever seen on record. I think this was because it had gone so long without ever being diagnosed. It was everywhere, heavy growth in his throat, gut blood and stool. We chose not to go on prophlactic antibiotics even though they were recommended, only that 10 day round of Clyndamycin. Anyhow that is our story. He just turned 8 years in Jan. I'm hoping we can get through puberty without ever getting strep again. Dominique

Dedee, If you want some names and numbers of doctors that are familiar with pandas let me know I live in California. but the doctors are in texas and chicago. Im so sorry that your doctor didnt mention Pandas until now. That is terrible although if i hadent of found this forum when i did i probably would of gone through the same thing. According to one doctor who had treated over 20 children with Pandas said it extremelyimportant to get it under control before puberty... good luck! Let me know if i can help in any way. Dominique Be sure to read the article that Dr. Vojani wrote regarding pandas. It very interesting. Hes the owner of the lab Immunosciences

Dede, I just had a Pandas Panel done at Immunosciences Lab in Beverly Hills Calif. The phone number is 310-6571077. I highly recommend this lab. Dr. Vojdani has written several articles on Pandas, hes truly an expert. The test results are very difficult to read and understand. I tried calling Dr. Vojdani but he cannot talk with you, you must have someone that understands Pandas. My son had several abnormalties and is positive. but presently has no symptoms . Does your son only have symptoms after getting strep? If so for how long? Do the symptoms start to reside? Has your son been on antibiotics? Did his symptoms improve? My sons did dramatically then got worse when finished. It only takes a few days for the results and cost about 90 dollars i think. Youll have to get his blood drawn at the lab. Good luck, Dominique

Sunshine, My story is very similar. Our doctor thinks my son is a carrier as well and wants to put my son on a 10 day round of Clindamycin and Refampin to try to erradicate the strep. My concern is he hasent really had symptoms since last April. Im afraid that if we put him on this 10 day course all of his ticking and ocd will return and maybe be worse than before. Ive been doing the same vit c B6 B12 mag calcium probiotics 5htp sellenium glutatione etc. every day for months. He went on 2 rounds of amoxicillin back in March. His symptoms improved and then when off worsened. My doctor is afraid that if we dont erradicate it it could cause real damage to his heart. I thought when your a carrier this doesnt happen. Hes been tested to antigens very high and autoantibodies positive. Could he have the true infection instead with no symptoms. He was tested for the 4th time this year and the culture came back positive all 4 times. Have you tried the Clindamycin yet? Has your doc ever seen a sucessfull strep erradication in a panda child? Please let me know how it goes. Im suppose to start the round tomorrow. Were also planning on having my sons tonsil and adnoids removed nextweek. this is war. Im not ever going to give up. I too feel like im loosing my little boy. Im on pins and needles now that winter has arrived wondering when ###### have another episode. Hope to hear from you. Warm regards Dominique

My son went to a ID doc on Monday He had a culture done and it was positive for strep. Even though he has no symptoms presently she feels that hes a carrier and wants to try to irradicate it with Clindamcin and Refampin. 10 day course. My son did have a pandas panel done last month and was positive for extremely high antigens and autoantibodies. Very high. Presently being that he has no symptoms other than an occassional tick in his wrist am i taking a risk by going on this 10 day course ? Ive been reading that when finished with antibiotics the symptoms can return with vengence. Is this only true if youve been on them for a very long time? Im also scheduled to have my sons tonsils adnoids removed in 2 weeks. A doctor in Illonois recommended this and also suggested taking Keflex instead of Clindamicin and Refampin. He thought it would work much better to erradicate the strep and thought these others were too strong and would probably not work. Has anyone had any success with any of these?Are there sideeffects? Has anyone ever successfully erradicated the strep? And had symptoms completely disappear? Im probably just dreaming that this might happen in our case. I get such mixed opinions from every doctor i speak with. This one panda expert says its very important to nip it in the bud asap before puberty because once he goes into puberty the damage cannot be reversed and the ticking and ocd will stay thru his adult life. Has anyone heard of this happening? He also suggested TA removel and then if symptoms reappear taking steroids then ivig then keflex for a year. Yikes! One thing im very confused about is why if you can erradicate the strep whereever it might be ,why would you still have symptoms? If theres no strep toxins then there would be no antigens for the autoantibodies to attack the basil ganglia right? or wrong. I find this so confusing. I can understand if he got another strep infection the symptoms could reoccur but what if he didnt get another strep.? Is it common with panda children to be carriers? If so when they do have reoccurances with strep are they getting the strep each time from other people or from themselves? Over and over again. Im so so sorry for all of these questions but im in a desperate state. Im suppose to start these antibiotics tomorrow and im afraid if ido it his symptoms will all return when im finished. The doctor is concerned if i dont do it that the step can end up doing permanent damage to his heart. I thought when a child is a carrier it doesent do damage . If hes just a carrier why are there such high antigens in his blood? I thought carriers didnt have this it just stayed in their throats. Would this mean that he may insteas have a true infection instead of a carrier? Its been 8 Months now of non stop sleuth work and look at all of these questions i still have. The docs all give me completely different advice. I dont know who believe or what to do. I hope someone out there can take a moment out there busy schedule try and answer any of my questions. Id be so very grateful. Has anyone ever seen a child make a 100 recovery from Pandas or thru supplements, probiotics, cheltion etc have the immune system straighten itself out and become symptom free? God Bless Dominique

Hello pandamom, Im new at this so i hope im doing this correctly. I too have a child with Pandas and just went to the ent. He wants my sons tonsils and adnoids removed asap do to the fact he feels that the strep toxins could be harboring there. How did you daughters operation go? Did they test her tonsil and adnoid tissue when removed for the bacteria. Has she had any strep episodes since this was done? Im scheduled to have his operation very soon and would love to hear your results and feelings on this procedure. Is tonsils acutually looked very good no scarring but his adnoids were gigantic and blocking. As far as i know my son has only had one case of the strep A in the past and had a severe onset of symptoms Today he his pretty much symptom free although he woke up this morning with a sore throat. If going thru with this surgery did help to prevent another strep episode i guess it would be well worth it. Did you find any articles on the results of culturing the specimens after words whether or not they were positve for strep bacteria?? I hope to hear from you soon Best to you and your daughter Dominique.

Hi Ronna, My name is Dominique. I have a little boy age 7 who in last January came down with a cold. Actually it was his sinused were completely blocked. Then one morning he woke up with a migraine headache and an hour later started jerking his neck uncontrollably back and forth. Then a week later he was jerking his wrists back and forth. Then the ocd set in full force. He then complained of a sore throat and i took him to our family doc. The doc tested him for strep a nd it came back positive for strep a. He put him of a 10 day round of amoxicillin 250mg twice a day. Took another culture and it was positive. We then went on Augmenton, 250mg. twice a day for 10 days. When finished another culture was done which was again positive. The doc said nothing more we can do he must be a carrier. Over the next few months our sons symptems started to improve. No ticking and ocd disappeared. This was May thru now which after doing tons of research on Pandas im am now convinced that he has this. I finally had the courage last week to get a pandas pane done and my suspicions were corect. he had very high antigens The doctor at the lab suggested he go on antibiotics asap. and suggested a doc that specializes in Pandas. i called this doc and he said forget the antibiotics and instead have my sons tonsils and adnoids removed at once. He said the step toxin is hiding somewhere and it loves to harbor in the adnoids. I went to ear nose and throat doc and he agreed even though he never heard of pandas. Anyhow im am convinced that my son was not a carrier like we thought but instead actually had an infection which the antibiotics werent strong enough to erradicate. I dont think amoxicillin was potent enough. Anyhow in 'sept. we did another culture for strep and it came back neg. Thats what makes me think he never was a carrier. The doc thinks because he really has no symptoms presently ;he cant have a strep infection but he has some of the highest antigens the lab has ever seen. Why would they sugest antibiotics asap. So know im headed to a ped. infectious disease doc mon. to see if we can maybe get a high dose ofClyndamyacin to wipe this nasty bug once and for all. Now im reading today that taking antibiotics when your finished symptoms can come back with vengence stronger than before. Even if my son presently has no symptems and take antibiotics for a couple of weeks. or is this with children that have symptoms and go on long term antibiotics? Im also scheduled to get his tonsils and adnoids removed in 2 weeks. Im so confused at this point im pray that imn doing the right thing. If the tonsil removal is the cure for this disease or a great preventative measure for not getting another strep infection. why am i not reading or hearing anything about this. If we erradicate the strep will the antigens go away.?If I dont find a solution soon im taking him out of school selling my house moving to Arizona where the chances of him getting step will be greatly reduced. Can a child have just one onset of this pandas and the immune system normalize? Im taking great care of hinm the past 6 months especially. No wheat or dairy probiotics daily lots of vit c omega cod liver oil etc. Now today i read that by strenghtening hes immune system i migh be overstimulating it and making things worse! If I dont strengthen his immune system how can i prevent him from catching the one thing that will make him sick again? I hope this makes somesense. Anyhow where do I go from here. I live near san fran. cant seem to find anyone that knows about pandas. I wish i could sit down and have coffee with someone that knows about this disease. Help! Now that winter is here im on pins and needles waiting for thenext infection. Ill go anywhere in the country to get help for him. Ive read a few stories about kids that have pandas symptoms take a strong dose of antibiotics and ther back to normal. In the preventative magazine article they talk about Luke having pandas symptoms taking amoxicillin for a month and he was back. Is that possible? They make it sound so simple. I guess every case is different. Please if you could respond as im ready to remove his adnoids and put him on another round of stronger antibiotics. Last thing i want to do is have a reoccurrace of his symptoms just because ive given him antibiotics. Is it true if you catch pandas on the early onset that you can prevent basil ganglia and nervous system damage? I hope so, please help me im truly at lost here and dont know where to go next. Hope to hear from you soon. Best regards, Thank you Dominiquej

Ronna Hello Ronna, My name if Dominique and my son as far as I know had his first episode with Strep back in January 2006. He woke up with a headache and had severe congestion for the past few weeks. He suddenly started with neck jerking and then finger jerking and a week later the OCD arrived with vengence. He then complained of a sore throat so I took him to our family doctor who then took a swab of his throat. It was cultured and with positive results of strep A. The doc put him on amoxicillin 250 mg. two times a day for 10 days. Ticking and ocd reallyimproved while on antiobiotics for those 10 days. Another culture was taken and it once again was positive. The doc then put him on augmentin 250 mg. twice a day for 10 days. Symptoms improved but returned when finished. Once again we had a culture done and it was positive. My doc said he was just a carrier and there was nothing really he could further recommend. I immediately went home and started my sleuth work. I discovered Sheilla Rodgers who calmed me down when I was pretty convinced that my son had Pandas. Since that day ive done every test you can imagine for metals yeast allergys etc. and finally a Pandas Panel which he had several abnormalties and extremely high antigens.. Hes had that 1 episoded and in May 06 the symptems pretty much declined. Today he symptom free with occassional anxiety. Im still convinced that he still has the strep infection that was never addressed. I Dont think amoxicillin was strong enough. Dont the high antigens in his blood prove that hes got an infection verses a carrier state? Now after reading everything i can about pandas i feel like i still have so many unanswered Questions. Ive been to several doctors one ent. doc says he thinks there harbored in his tonsils and adnoids. and he thinks we should have them taken out at once. Were scheduled to that next month. I havent read anywhere about anyone doing this as a preventitive measure and if they have gotten positive results from doing it. Im so desperate ill do anything if it helps my son. I feel mayb e i should take him out of his school and homeschool him so he doesnt catch the strep again. Im living in constant fear. I cant seem to sleep worring constantly. I wanted him to go on a stronger antibiotic like a round of clyndamyacin for 10 days thinking maybe that might erradicate this strep once and foreall. Now i hear that the symptoms can not only return after antiobiotics but also get worse . Im scared to put my son bythe way hes 7 years old,on antibiotics full time when he seems so well today. Do I wait until he has another strep episode? Would i give him Clyndamycin iif and when hes gets another strep? or do i do nothing but just wait. Can a child have one episode of an auto immune reaction to strep and never again? Have you heard of anyone having sucess with tonsil removal. His tonsils looked really good but his adnoids were huge. I f they find where its harboring and remove it does that ger rid of the antigens? Im so totally confused at this point I dont know where to turn. I live in San Francisco and cannot find anyone to help and I desperately would love to talk with another mom with a chid with Pandas. If tonsils removel was the cure wouldnt we know by? it seems like such a easy sollution to such a big problem. Do you think taking a stronger dose one more time of /clyndamyacin woul d make my son start ticking again and ocd return? Im giving himnutrients to strenghten his immune system and probiotics now im reading that that could overstimulate his immune system. He had high metals and low gluthione levels so im now giving him gluthione. Sounds like thats not good either. Im also been giving him probiotics twice a day to strenghten his immune system so hes not vulnerable to catching strep again. Sounds like thats not a good idea either. Have i been doing more harm than good the past 6 months? He seems great it all seemed to be working. but now winter is back and Im terrified. Please can you or anyone else help me? Can you recommend adoc in my area? If he gets another episode of step does the symptoms come back strongerwith each episode? Have you ever seen a child get it one time and never again?Im so sorry for all of these questions but i am totally lost. Hopefully im catching this early enough before damage is done to his nervous system and basil ganglia. Please if you could answer me at your convenience is would so appreciate it. Surgery is scheduled for next week. Thankyou so much. So sorry for all the mispellings but im am not very tech savy and not much of a typist. Best regards, Dominique

Dear Pandamom. My sons titer level is also high and his tonsils, and especially his adnoids, seem to be the concern. Did your daughters removal surgery cure, or greatly benefit her condition? Thanks for your help! Dominique