colleenrn

My daughter's PANDAS started the month after she turned 5 and never had intrusive thoughts (that she or I are aware of) until she turned 11. It began out of no where and the thoughts were sexual and aggresvie in nature, which you can imagine would be HORRIBLE for a little girl and her mother. Antibiotics and lots of supplements (inositol, 5HTP, fish oil, vits, etc..) seemed to make them slowly go a way. I actually just asked her this morning about intrusive thoughts and she says she does not have them at all anymore. To answer your question about why they would disappear, has she been treated with antibiotics or certain supplements that could have helped them go away? Did she have any illness during the times of the thoughts and when she recovered from the illness they went away? Colleen

Yes, that is definitely a symptom of my daughter who is 12 and has been for years and years. She complains of intermittent headaches and lots of stomach aches.

My daughter is left handed to write, but does everything else with her right hand. When she was younger she threw balls and putted left handed, but now only writes left handed. My two sons are right handed and seemed to be so from an early age. I am not sure yet about my 2 yo, but he reaches with his left hand about 25%of the time.

Alyssa, I was wondering if you can provide a little more information regarding taking Zithromax prophylactically please. I am desperately trying to convince my doctor to go that route with at least two of my children, possibly three of them. I convinced them to do 5 days of Zithromax and when I saw improvement, I talked them into giving me another 10 days, and I am still slowly seeing improvement. I want to keep them on it longer, but I am going to really need to convince them to do so. How long have you taken Zithromax? Have you always taken the dose of 250mg three times per week or did you start with a different dose? Do you remember why your doctor chose Zithromax? Is your doctor concerned about using it long term? Do you have to ever get blood tests done to check liver function? I know you must be so busy in college, so I really appreciate your time and any answers you may have for me!! Colleen

My daughter age 12 and her brother age 5 are loud talkers and have PANDAS. My 7 yr old is not really a loud talker though and my 2 yr old is hard to figure out yet. I do remember when my 12 yo was younger she was really a loud talker. Colleen

My daughter had all of her immunizations up through age four (did not get The MMR booster at age 5) and I first noticed her PANDAS at age 5. My three younger sons have only had polio, nothing else. They show signs of PANDAS, but no OCD, mainly ADHD behaviors with some tics. I strongly feel that the immunizations made things worse. I feel they damaged her immune system. I feel my boys symptoms would definitely be worse had they received all of the required vaccines.

WorriedDad, I just read that you got a scrip for 4 weeks of Zithromax for your child back in August. I am wondering how they are doing and how they responded to the Zithromax. I am trying to convince my doctor to do the same for my child and I am having trouble. Thanks, Colleen

EAMom, Thank you for your response and info. I was able to get the doctor to agree to Zithromax for my son even though the 72 hr. culture was negative. He finished the 5 days yestyerday andI have definitely seen a difference in him. His vocal tic is gone and he is much less labile, more able to tolerate frustration. I just got off the phone with the nurse at my doctor's office after leaving a message I would like at least another course of antibiotics, explaining why (the successs other PANDAS families have had with Zith). The nurse said the doctor said "no. wait 7 days and see if things get better". UGH... I told the nurse that is not what I want, that I want at least another 10 days-30 days worth. I tried about how it could be intracellular strep, thus taking longer to respond to the Zith. Does anyone have any ammunition I can use to get them to go along? How did you get long term Zith? Thanks! This is so frustrating, especially since the dr/nurses know very little about PANDAS and think I am nuts or inventing this treatment on my own. Colleen

EAmom, I was wondering how you decided on Azithromycin 250 per day for your daughter. My son is finishing his 5 days of Zith tomorrow and I have seen a little improvement over the past two days. His 72 hr. culture was negative this week, but my dr agreed to Zith b/c I was seeing behaviors convincing me he had strep. I feel he may have had strep since Aug. as he was positive in July, but only treated with 5 days of Zith at that time. I want to ask my dr to give me another 5 days, possibly longer, then maybe try it prophylactically. Any guidance or suggestions as far as how long I may try the Zith and then if we switch him to a prophylactic dose, how much. He is 5 1/2, but only weighs 43 lb. The more I read about intracellular strep, the more I think that could be what is going on with him and has been going on with my 7 and 12 yr. old b/c their rapid strep tests ALWAYS come back negative. Thanks! Colleen

My two oldest children often had stuffy noses. In one of my children that was my clue he may have strep, when he was really stuffy and mouth breathing at night. It resolved after they had their tonsils and adenoids removed. In our case I think it was the large adenoids that caused the stuffiness and that is why it worsened whenever they had strep. I see it now in my 5 year old who we are treating with Zithromax even though his 72 hour culture came back negative. I will pay attention to him when he is sleeping to see if the Zith has helped the stuffiness, but in my kid's case I think it is the adenoid size causing it. Colleen

EAMom, Thank you so much for your reply and information! It has been SO puzzling to me over the years of getting cultures back negative (yes we do 72 hr. cultures YET the lab has messed up several times and read and discarded the culture after 36-48 hrs.) when I KNEW my daughter had strep and then having it confirmed even more that she had strep as I saw her greatly improve once we began a course of antibiotics. I have SO many questions if anyone has any answers. If intracellular strep is more difficult to culture, is there anything that I can do to insure a correct culture? I make sure the nurse gets a good sample from both tonsils and make sure they culture it for 72 hrs. Is there any reference that you know of that talks about intracellular strep being harder to culture? The longer they have untreated strep, the more likely it is to become intracellular? If strep goes untreated and the body fights it off, what happens to the antibodies if antibiotics are not given? Wouldn't they continue to attack the brain, causing PANDAS symptoms? You mentionned that some strains are anaerobic and difficult to culture if the agar is not punctured. Is this just something that the lab has to do correctly or do we have to request anything special? When I have a culture done, will they automatically test for all strains or just Strep A? How do I get them to specifically test for any strep at all and not just strep A? There was a time my son's culture came back as "non A strep" and I saw and increase in his behaviors and he responded well to antibiotics. The lab did not specify, however, what the strep was. Thanks so much, Colleen

EAMOM- You posted that if your child has had untreated strep for a period of time, the throat culture may come back negative, therefore there would be no "evidence" of strep. I am awaiting the 72 hour culture results on my 5 yo son who I suspect may have had strep for a few weeks. There have been countless times over the past 7 years that I KNEW my two oldest children had strep based on their behaviors, the culture would be negative, but my kids would always respond to the antibiotics which definitely confirmed for me that it was strep. It makes sense to me after reading your comment that it could be b/c I waited too long (as I am always second guessing whether they have strep b/c they have NO physical symptoms) and that is why the cultures are negative. I luckily have a Dr who will give them antibiotics if I think they have strep regardless of the culture, but I honestly think they don't believe my children could have strep with a negative culture. Any more info would be greatly appreciated. Thanks, Colleen

I was wondering if anyone knows if the longer a person has strep, the more likely the strep is to be intracellular, therefore responding better to macrolides like Azithromycin.

I am taking my 5 year old son for a throat culture today as he is showing behavioral signs of strep (no physical symptoms). My 12 yo daughter, 7 year old son, and 5 year old son all have PANDAS. It was a clear cut case for my daughter and son, but I have been trying to figure out if my 5 year old falls into the same category as he shows no signs of tics or OCD behaviors. His is all hyperactivity, very labile, irritable, explosive, etc... I am pretty sure it is PANDAS with him and I think strep keeps recolonizing in his tonsils b/c they are so huge. My other two children has their tonsils and adenoids removed for the same reasons. Before they were removed the strep kept recolonizing every time they would stop antibiotics and the ENT said the reason was b/c the tonsils were so large and cryptic. IF my son has strep this time I want to put him on a prophylactic dose of Zithromax, but do not know if it would still be the 500 mg/week. He is 5, but very small for his age. He weighs 40 lbs. Any help would be GREATLY appreciated. Colleen

I can only speak for my family and I have heard of some siblings having tic disorders or OCD or PANDAS when the other siblings do not have it. But, in our case, my 12 year old daughter has PANDAS and with that she exhibits tics and OCD behaviors, my 5 and 7 year old sons have not been "formally" diagnosed with PANDAS, but I know they have it. Their PANDAS manifests as hyperactivity, emotional, lablie behavior, and some separation anxiety. I also have an almost 2 year old son that I have not seen any of these behaviors yet. I believe I had PANDAS as a child (ages 7-13) as I have periodic tics, severe at times, that would vanish all of a sudden, and I do not have them as an adult. I tried to get my medical records to see if the tics correlated with times I had strep, but I was told the records had already been destroyed. Colleen

My daughter and son both have had their tonsils and adenoids removed and were in severe pain for the first 2-3 days. I alternated between tylenol with codeine and ibuprofen. I do not think that tylenol without codeine would have been enough to manage their pain. Another thing that seemed to help was to put ice on the outside of their throat. The hospital sent me home with the ice "collar" we used in the recovery room, but if you do not have one you could just put crushed ice in a large ziplock bag and put a thin towel/hankerchief between the ice and the neck. Lots of cool liquids, popsicles help, plus not eating anything at all that is irritating to the throat. Good luck! Colleen

Kim, My daughter (PANDAS) allergic to sulfonamides, which do contain sulfur. Does that have anything to do with your theory on sulfur metabolism? She was give a sulfonamide for an ear infection when she was about 1 1/2 and broke out in head to hives. Just wondering when I read these posts. Thanks, Colleen

Sorry! I forgot to put the link. Here it is. https://www.oprah.com/plugger/templates/BeO...lugId=315500001

The Oprah show is considering doing a show on OCD. I just sent the producers an email explaining PANDAS and asking them to include it in the show. I think that it would be a great way to make people aware that it exists, especially physicians who still don't know about it, so more children can be helped. Here is the link in case anyone is interested in emailing them Thanks, Colleen

My daughter is having a palatal expander placed in two days to expand her palate in preparation for braces. The orthodontist said she would have to wear it (continuously) for 6-8 months. I am SO afraid that it is going to be a "safe haven" for strep. I was wondering if anyone had any suggestions as to how she can cleanse it everyday to keep it from holding onto any strep. I have read that xylitol kills strep and I have a bag of it. Does anyone know if I can dissolve the xylitol (it looks just like sugar) in water and have her gargle with it? Would gargling once a day with grapefruit seed extract dissolved in water kill strep? Any ideas would be so appreciated. Thanks!Colleen

My daughter's OCD and tics began when she turned five and she was diagnosed with PANDAS about 6 months later (we did not even know she had strep for 3 months). After recurrent strtep, we decided to do a tonsillectomy and adenoidectomy. It turned out her tonsils and adenoids were enormous and so full of holes, the ENT said that antibiotics could never get rid of all of the strep. After having the T and A she was strep-free and OCD/tic free for 1 1/2 years. After the 1 1/2 years, she began to get strep again, but never as frequently as before. My 7 yr. old son had a T and A when he was 5 b/c he began to get frequent strep and his tonsils/adenoids were so large it was causing sleep apnea. He has gotten strep much less frequently since the T and A. My 5 yr. old has not had a T and A, but he has huge tonsils and whenever he is sick he snores very loudly and has a very occasional sleep apnea. At this point I am just keeping an eye on him.

Emma, Have you tried a cephalosporin antibiotic? My daughter seems to do well on both Zithromax and Keflex (cephalosporin), but I recently read that some strep is becoming resistant to macrolides (zithromax being one of them). Just a thought. Colleen

I had to call around to different pharmacies and ask if they had white Zithromax tabs. I finally found one that did and they said they got it from a certain manufacturer. It costs the same as the ones with red dye.

I just watched the video and it made me furious. I wonder how he would explain to me how my perfectly healthy, "normal" 5 yr. old woke up one morning with OCD and tics which disappeared with antibiotics (until the next strep infection). It is SO unfortunate and I feel negligent that he doesn't "believe" in PANDAS. HOW MANY children does he send away from his practice with untreated strep while their parents watch them get worse and worse? I intend on contacting him about this. I don't know what good it will do except to make me feel better and to continue in my attempt to educate doctors who are clueless about PANDAS. The thing that I don't understand is that there are NO doctors who don't believe in rheumatic fever. PANDAS is the same process, just instead of the strep antibodies atttacking the heart, they attack the brain. Here is his contact info if anyone is interested. Steven Pavlakis, MD in Brooklyn, NY. His website is drpavlakis.com

The following is from the book Clinical Management of Streptococcal Pharyngitis by Michael Pichichero, MD related to strep carriage. Group A streptococcal (GAS) carriage is likely when a aptient has a positive GAS throat culture but shows neither symptoms nor a demonstrative rise in streptococcal titers. Patients experiencing a relapse with the same strain of GAS soon after primary infection often have milder and fewer symptoms of GAS infection, which may not be remembered, even though such patients have been shown to demonstrate an antibody rise, thus identifying them as susceptible to acute rheumatic fever (ARF). Treated or untreated, symptoms of acute infection with GAS resolve, but ongoing carriage of the organism may persist. Patients are contagious to others in the early stages of this carrier state. After a period of time(1 to 2 months), the carrier has diminished numbers of GAS organisms in the tonsillopharynx, and transmissibility to others diminishes. High rates of GAS carriage may account for increased penicillin failures in a semiclosed community. Asymptomatic GAS carriage may persist despite intensive antibiotic treatment. Eradication of the GAS carrier state is infrequently achievable with penicillin; clindamycin; penicillin plus rifampin or cefprozil is more effective. After treatment for 10 days, patients more often become carriers if treated with penicillin compared with cephalosporins or macrolides. The following passage is talking about failure rates of penicillin and amoxicillin for strep: The failure rate with penicillin and more recently amoxicillin has been rising over the years. A projected bacterial eradication failure rate in excess of 15% is considered by the Food and Drug Administration as unacceptable for a first-line therapy of GAS tonsillopharygitis, and penicillin has not met that criterion standard for well over a decade. Hope this is helpful to some people. Colleen