colleenrn

LMama, Don't let the doc tell you that babies can't or don't get strep. I was told that way back and it turned out that my toddler had strep, but with no physical symptoms. Anytime anyone in your household has strep you have to be very suspicious of the rest of the family, that they couold also have it. Some docs put you on Clindamycin instead of Zithromax, but they are similiar. How much does your child weigh? The Clindamycin dose should be 20-40mg/kg/day. Colleen

Is it Alyssa?

MyRose, I am so sorry about your daughter. My suggestion would be to do a 72 hour throat culture asap to rule that out. Colleen

Michele- Diarrhea can be a symptom of SIBO (small intestine bacterial overgrowth). Could it be possible that your son has strep is his small intestines, causing the PANDAS symptoms AND diarrhea? How much Omnicef is he on daily? When was the last time he took a treatment dose of antibiotics? I am just thinking out loud. I feel so badly for what you and your son are going through, with no one giving you Zith. Your son seems like the perfect candidate to at least TRY Zith to see if it makes an improvement. Colleen

Hi. I also wanted to add this piece of info and I have posted about it once before. My sister's pediatrician, who is conservative and does not give out antibiotics lightly, insists that as a TREATMENT dose for strep, Zithromax 500mg/day is required, even in the case of my 8 year old niece who weighs 60 lb. My sister is supposed to ask her if there is any literature or studies regarding this dose, but this physician stays very current on literature and I trust what she says. IF this is the case, we may be undermedicationg in cases of active strep. I just wanted to put this out there. Colleen

Susan, In my opinion, it is definitely genetic. 3 of my 4 children definitely have PANDAS and signs have pointed towards the 4th also. In addition, we have a family history of rheumatic fever. My 3 children have been on Zithromax 250mg per day since October. When I try to reduce it to 125mg/day I see symptoms increasing. I think it is great you are getting Zith for your children, but I would start with 250mg per day and then try to decrease it to 125 per day. Did you get a positive culture recently? If there is any possibility that your children have strep somewhere in their bodies right now, I would think about doing 250/day, b/c 125 is not enough to treat an active infecton. In six weeks when you go to a lower dose, I would recommend not going to only once per week to begin. You may want to do every other day at first, then see if you can get it to 2x/week. That is just my two cents. Good luck! Colleen

Lacy, I am so absolutely disgusted and mad for you. How DARE a physician have the audacity to talk to you and your daughter in that manner. I am an RN and have seent he "good and bad" in physicians, but this truly takes the cake. Your daughter obviously deteriorated when antibiotics were discontinued and that is a huge sign of PANDAS, as well as the other signs and symptoms you have decscribed. Chalk this experience up to utter incompetence b/c that is what this doctor is, incompetent. I feel so badly for any patient that she comes in contact with b/c she sounds like a close minded and very uninformed physician. I would LOVE to know her name as I live in Charlottesville, Virigina and worked in psychiatric nursing for years. I would not hesitate, if I were you, to post her name on this forum, as I feel that any physician who has the audacity to act so uncaring and ignorant, should be "outed" for all to know. If you do not feel comfotable in posting her name, I will IM you. You hang in there! That physician is ignorant and has NO IDEA how to diagnose OR treat PANDAS. Try Dr. Latimer or Dr. K. Also, the practice that treats my children is one hour away from Richmond. I have spent the last few year educating the practioner I see about PANDAS and she is definitely on board. Please let me know if I can help you in any way, but hang in there!!! Colleen

Do you think that being on Zithromax could potentially prevent Lyme's disease? I know they sometimes give Erithromycin to treat it, which is similiar to Zithromax.Three of my children are on prophylactic Zithromax for PANDAS. We have had the WORST summer EVER (and it just began) with ticks. I pull ticks off them every single day and our neighbor was just diagnosed with Lyme's. Colleen

Myrose- I was wondering if it could be that her teeth are coming in b/c when you have a tooth pulled, or it falls out, or any dental work done, the strep that could be lingering in the mouth has a quick entry into the body, thus causing an exacerbation. Just a thought. Colleen

Deanna- There are lots of different strains of strep A. The scarlet fever strain produces an erythrogenic toxin, which is what causes the skin to turn red. It will elevate your titers just as strep throat does. There have been times when my children have had untreated strep (it was untreated b/c I did not they had it b/c they don't get the typical physical symptoms) and have resultd in a red, scarlatina rash. Colleen

Yes, you need a script for Bactroban- it is a topical. I do not think 7 days is ever long enough for a child with PANDAS, but a 10 day minimum. What antibiotic is she on? Colleen

Brie- Glad you got oral antibiotics! In a person without PANDAS, topicals are OK for impetigo, but in PANDAS children, they need orals. I think that Bactroban (mupirocin) is more effective than just neosporin. Colleen

I have never done the streoid burst with my children, but was wondering at what point do you decide to do it? My 6 yo with PANDAS has been on Zithromax since October and doing pretty well. The past several days he has been very emotional, with a very short fuse. He was exposed to strep a lot at school, but is now out for the summer. I had a culture done about 2 weeks ago when he had an "on again-off again" fever for several days. The culture was negative. I would love people's opinion as to whether I could or should do a steroid burst with him. I didi not know that was an option when my older children had their worst PANDAS episodes I bet it would have helped a lot. Thanks in advance for any input! Colleen

My daughter got a high fever (103) about a week after receiving the vaccine and a red rash. She then developed a horrible case of shingles at age 10 (9 years after the vaccine). My other three children did not receive the vaccine. They all three had chicken pox this past Christmas (ages 2,5,7). Out of all the vaccines, IMO, the varicella vaccine is one of the scariest. Since my daughter's shingles, I have read horrible side effects suffered after receiving it. Colleen

IVIG has been used routinely for a long time with many other disorders. It is not something "new" that is unknown. It is just new to PANDAS, but it does work, no question about it in my mind. Colleen

MyRose- Can you describe the rash? Rashes are tricky and a lot of times they are diagosed as "viral" rashes b/c the physician does not know what it is. I have been told a strep rash was viral. I just want to make sure that it is not a strep rash. Did you do a culture or just a rapid? I never ever rely on negative rapids b/c my children always have neg. rapids, but pos. cultures. Colleen

Kayanne, I was wondering, if you don't mind, if your sister's children also have PANDAS. My children do and two of my sister's children do also. I have always wondered how many kids with PANDAS have 1st cousinsd with it also. Colleen

I have the full article in pdf file, but I have no idea how to post it. I know how to email it as an attachment. Can anyone help b/c I would be glad to pass it along if I can figure out how. Colleen

DCmom- Did they do an EKG and an echo? I have wanted to have my kids checked for a while, so my goal is to do it this month since they will be out of school soon. Do you think most insurance companies will pay for it under the long history of strep b/c PANDAS has no diagnostic code. Or maybe if the physician who gives mne the consult order could put rheumatic chorea? Colleen

Also, if SC, RF, and PANDAS are all the same, which I believe they probably are, WHY won't physicians accept PANDAS as real? When physicians have looked at me like I am crazy in the past b/c they have never heard of PANDAS, I have always said, "Well, are you familiar with RF, b/c the processes are similiar, if not the same" Colleen

PMom- I have the same exact questions and concerns about cardiac involvement with our kids. I know at least one or two children on this forum had a cardiac workup. Can anyone give me any more info where cardiac involvement is concerned. I have felt for a while that my kids, with their long history of strep, and periods of untreated strep b/c they had no physical symptoms to know to test, should have a cardiac workup. Thanks, Colleen

Sandy- I just wantedf to comment that the INITIAL trigger is strep, but subsequent flareups can be caused by many other bacterias and viruses. Even though your daughter is 15, you could still be looking at PANDAS. Has she been on an antibiotic recently? When was her last throat culture and did theygrow it out for 72 hours? You can get false negative throat culturea AND normal titers and still be dealing with strep. Strep can hide in sunuses, gut, skin, adenoids. Colleen

My feeling is that this would be a dangerous vaccine for PANDAS children because the vaccine induced high titers of antibodies to all 26 serotypes of group A streptococcus targeted by the vaccine. Colleen

MyRose, Just checked out web site-Oh my Gosh, what craziness! I sent them an email also. We'll see if they answer back. "MSG has health benefits" is their claim. Colleen

I wanted to comment on siblings of PANDAS children. I have been waiting for years for someone to study the genetics/family history of PANDAS b/c I KNOW it has to be genetic. I have 4 children. My oldest diagnosed PANDAS at age 5, she is now alsmost 13. My 2nd and 3rd children are also PANDAS, but fingers crossed and lots of prayers AND antibiotics, they have not had it as severely as my oldest. I have been MUCH more agrresive with antibiotics b/c I feel that is one reason my oldest has a more severe case- we were not agressive with antibiotics with her in the first few years b/c we did not know better. My last child (2 1/2) I am not 100% sure about yet, BUT he has already had strep a few times with no physical symptoms, just behavioral, so it is pointing in that direction. With that said, I am positive that I was a PANDAS child and my brother and sister were not as far as we can see, so it is very possible that all siblings will NOT have PANDAS. We have the family history that goes along with PANDAS. My mother had scarlet fever and rheumatic fever. My father has a rare autoimmune disorder (not sure if it has anything to do with strep b/c they have no idea what cuses this disorder). My sister's children (2 of the 3) have PANDAS. There is so much to learn and figure out about PANDAS that I think researchers need to really look into the family history to understand better what is going on. Colleen