colleenrn

The cleaning went OK- so far I have not noticed an increase in behaviors. I ended up not giving them extra zithromax. I am worried that my 6 yo is not responding to the Zithromax as he did the first time we used it. Not sure if I should switch him to a cephalosporin. Colleen

Michele, My sister lives in Brunswick, Ohio (just south of Cleveland) and FINALLY got her doctor to "believe" in PANDAS after talking to Dr. Leckman (Yale study- THANKS DIANA!) Her doctor has given her 30 days of Zithromax and they will "re-visit) it afetr 30 days. Do you live anywhere near Brunswick? Maybe her doctor will help you. Let me know if you want more info. Colleen

My kids don't get canker sores, but they do get very, very frequent chapped lips and it has never seemed to be related to a lip licking tic. I have always wondered if it has anything to do with the strep.

My three PANDAS children are having a dental cleaning this afternoon. They are all currently taking Zithromax 250mg/day, but I am still very worried the cleaning may cause a flareup. They were off the Zithromax for almost 3 weeks in December when they had chickenpox and two of them are not responding as well to the Zithromax as they have seemed to in the past (still very labile, but no tics). I am wondering if I should give them extra Zithromax before their appointment today? EAMom, I saw where you posted giving your daughter Amoxicillin on the day of her dental cleaning. Any thoughts on adding extra Zith? Thanks, Colleen

My daughter was taking Augmentin daily to try to prevent strep when she was about 9 or 10. After taking it for about 4 months, she broke out in head to toe hives. We (me and doctor)believed that she had developed an allergy to it. I stopped it right away and she began to clear. I took her a few weeks later to an allergist who did skin tets on a bunch of differnet antibiotics. Her tests showed she was NOT allergic to Augmentin and we could safely use it again, but I have not ever given it to her. Based on her allergy test, though, I could. Maybe that is what is going on with your son? Or could it be some type of viral rash? Those can be hives/patchy and itchy.

SMZ/TMP is a combination of two sulfa drugs, sulfamethoxazole and trimethoprim which is used to treat infections, such as bronchitis, middle ear infection, urinary tract infection, and traveler's diarrhea. It is also used for the prevention and treatment of Pneumocystis carinii pneumonia (PCP). It is commonly known as Bactrim or Septra. It is active in vitro against many gram-positive and gram-negative aerobic organisms. They have minimal activity against anaerobic bacteria. Susceptible gram-positive organisms include many Staphylococcus aureus , including some methicillin-resistant strains, S. saprophyticus , some group A beta-hemolytic streptococci, Streptococcus agalactiae , and most but not all strains of S. pneumoniae . Gram-negative organisms that are susceptible include Escherichia coli, many Klebsiella species, Citrobacter diversus and C. fruendii , Enterobacter species, Salmonella species, Shigella species, Haemophilus influenzae , including some ampicillin-resistant strains, H. ducreyi , Morganella morganii , Proteus vulgaris and P. mirabilis , and some Serratia species. {104} Sulfonamide and trimethoprim combinations also have activity against Acinetobacter species, Pneumocystis carinii, Providencia rettgeri , P. stuarti , Aeromonas , Brucella , and Yersinia species. They are also usually active against Neisseria meningitidis , Branhamella (Moraxella) catarrhalis , and some, but not all, N. gonorrhoeae . Pseudomonas aeruginosa is usually resistant, but P. cepacia and P. maltophilia may be sensitive. It is a pretty heavy duty antibiotic, so I would definitely give a probiotic. It does have a lot of side effects, including making you very sensitive to the sun so you can burn easily. Sulfamethoxazole and trimethoprim combination should not be used in the treatment of group A beta-hemolytic streptococcal tonsillopharyngitis since it may not eradicate streptococci and therefore may not prevent sequelae such as rheumatic fever. Dr. Kaplan (strep expert) says: sulfonamides do not eliminate strep from the throat (although they can be used to help prevent recurrent rheumatic fever).

My children's PANDAS began with OCD. The tics did not come until a few episodes into PANDAS. I think one reason PANDAS is so tricky is b/c our children have a wide range of presentations.

Hi Gibster, I was wondering if you could comment more on the doctor wanting to get an ultrasound on your child's heart to look for strep. There have been many times I KNOW my children had strep, but thoat cultures were negative. I have always thought that the strep could be hiding in their adenoids or sinuses, but never heard of it being in their heart. Is this in relation to how strep antibodies attack the cardiac valves such as with rheumatic fever? Anything you could add about that I would REALLY appreciate as I am constantly trying to find liitle pieces to this very confusing disorder, as we all are. Thanks! Colleen

I personally believe that Gardasil will turn out to be one of the most dangerous vaccines we have ever seen. I tell everyone I know with young girls how dangerous it is. I live in VA and we have an "opt out" clause, but the majority of parents don't realize that and almost everyday my 12 year old daughter comes home and says anopther friend got the Gardasil vaccine. I recently was at my yearly GYN appointment and had the Gardasil discussion with my Certified nurse midwife. She says that she and the MD she practices with, not only do they not promote the vaccine, they refuse to give it b/c of it's uselessness and dangerous side effects.

I was wondering if anyone has any thoughts on whether our children are more susceptible to diseases such as meningitis b/c their blood- brain barrier is already altered? I always understood that the strep antibodies attacked the basal ganglia, deep in the brain, but I did not grasp until now that it is b/c that barrier is actually altered. I find that very scary. Colleen

I buy mom from keycompany.com. It is a derivative of coconut oil. It comes in 300 mg and 600 mg. I use 600mg. I first gave it to her when she was about 9 and I gave 600 mg 2x/day. We rate her PANDAS on a scale from 1 to 10 (10 being the worst). After taking it for 2 weeks, she went from an 8 to a one. We continued that for about a year and stopped for awhile (honestly I don't rememberr why we stopped but it was not due to any side effects). I recently have her back on it, but with 4 kids and so many health issues, have not given it consistently. I plan on upping it to twice a day and trying to be consistent about giving it to her. It is a capsule with powder. I need to find out if it is safe to open the capsule and dump the powder into a liquid as I really want to tey it with my 5 and 7 year old sons (almost 6 and 8). Colleen

Peggy, Have you tried monolaurin? It has anti viral and anti bacterial properties. I had great success when I used it with my daughter. Colleen

Darla, I am sorry, I should have been more clear. My daughter was diagnosed at 5 1/2 with PANDAS and she is now 12. We did Penicillin prophylactically for a while, then Augmentin for about 6 months, a few years ago she took Keflex (a cephalosporin) for almost a year, and now she is taking Zithromax daily. It was trial and error with her b/c I was basically trying to figure this out on my own. Until I joined this forum, I had never had contact with anyone dealing with PANDAS, except for the one time we took her to see Swedo and that was in the very beginning. Knowing what I know now, and if I could rewind 6 years, I would have put her on antibiotics prophylactically, no doubt whatsoever. I am going that route now with my younger children. Colleen

Darla, Have you ever tried a cephalosporin for your child? They are effective against strep and can be taken prophylactically. My daughter took Keflex for about a year. Colleen

Pmoreno, In the case of my two oldest children, before they had their tonsils and adenoids removed, the antibiotics would kill enough strep to decrease their symptoms, but not fully eradicate it. The "leftover" strep would then recolonize and we would see an increase in symptoms. That lessened after the T & A. Colleen

EAMom, Only my 12 year old got the varicella vaccine when she was one and got shingles at age ten. My three sons have not been vacicnated. I hope I am not jumping the gun in saying it is a mild case, but we first saw spots last Thurs., so today is day 5 of getting spots. The weird thing is a ot of them are just red bumps and not turning into blisters. There is another girl in his class diagnosed the same day with chicken pox. So far, we don't know where they got it though. Thanks, Colleen

Thanks for everyones responses. I decided to stop giving him the Zithromax a few days ago and will restart it in a week or so. He is doing really well so far and it seems like a fairly mild case. i am more worried about the upcoming weeks as my 2 and 5 year olds get it b/c i have read that the first sibling that contracts chicken pox has a milder case and the siblings being exposed all day/everyday get a worse case. Anyone experienced that? So far I have not seen an increase in PANDAS stuff. Colleen

Thank you for all your responses. I remember something about antibiotics making chicken pox worse or somehow negatively affecting someone with chickenpox. I could only find limited info, but it looks like antibiotics can increase the chances of a secondary infection when a child has chicken pox. He has been on Zithromax for about 1 1/2 months. He last week switched from 250mg/day to 125mg/day. I do not know if I should stop the antibiotics if they will indeed make the chicken pox worse. OR should I be more concerned about him getting strep in I stop the antibiotics. I am not sure what to do.

My 7 yo PANDAS son was diagnosed with chicken pox this morning. I am anticipating my 2 and 5 yo will also get it. I was wondering if anyone's PANDAs child has had chicken pox, and if so, did they have a big flare up of PANDAS symptoms? My daughter had shingles two years ago when she was 10 and I did see an increase in tics, but not a huge increase. I am wondering what to expect and I am very concerned and worried about him. He is now on Zithromax 125 mg per day. I am afraid his pox will get infected with strep and the complications that could arise from that. Thanks in advance for any info or input! Colleen

On the subject of different strains of strep, I earlier posted about us recently testing positive for Group B strep in respiratory culture and beta strep, non A,B,C,F, or G. This has also happened in the past where we culture positive for non A strep, but the lab reports they don't know what strain. I have always wondered if we have a certain strain of strep that doesn't register positive in our cultures. Years ago when I took my daughter to meet with Dr. Swedo at NIMH (2001)and she instructed me to always insist on 72 hr. cultures b/c it can take that long to register positive in PANDAS kids, I asked her if she thought it was b/c they got a different type of strep. She smiled and nodded her head, which I took to mean she thought so. This has always made me wonder if my kids are picking up some different strain. Colleen

I have often wondered if Zithromax is best for the first few weeks at getting rid of intracellular strep, then switching to a cephalosporin or Augmentin that actually kills the strep. Not sure.

I know some of us have more than one child with PANDAS. I know 3 of my four do, not sure about my toddler yet. What I was wondering is does anyones children have cousins with PANDAS? It looks like my 8 year old niece has PANDAS. Thanks, Colleen

Lacie, I know exactly what you are saying. It is so overwhelming. Colleen

MyRose, How old is your daughter? They only recently added the second chicken pox shot, as a booster. I think it was just last year that they changed it. This link has the current recommendations. http://www.systoc.com/newscomments/news/Ju...7/Varicella.asp My daughter received it in 1997, but I have not, nor will I, give it to my other 3 children. My daughter had a horrible case of shingles when she was ten, which I found out later can be common in kids who get the vaccine. Wish I knew then what I know now. Colleen

Just wanted tho thatk everyone for all your responses! I really appreciate it! Colleen