colleenrn

I asked Dr. Swedo back in 2001 if she thought other strains of strep could cause PANDAS and she smiled and nodded her head. Strep A may be the most common cause, but I don't believe it is the only cause. Colleen

My daughter was strep free/PANDAS symptom free for exactly 1 1/2 glorious years after her T & A. It was so wonderful, until she woke up one morning with her symptoms back again. My son was less clear to me when he started getting strep after his T & A. His symptoms were and are still harder to figure out than his sister's b/c his are much more ADHD/emotional/behavioral stuff, so it is harder to figure out. With my daughtrer it was much easier to figure out b/c she would immediately begin with tics and repeating the same phrases over and over and over again. I did not do this with either of my children pre and post T & A, but really wish I had and would do it this way if my other kids needed them removed. I would have them on antibiotics ( a full treatment dose of Zithromax) 2 weeks before and two weeks after surgery. They usually cannot remove 100% of the tonsils/adenoids. The more skilled the surgeon, the better chance you have, but if any strep is anywhere in the body, it can just recolonize. That may be what has happened with some of these children. Colleen

Lena, Unfortunately a lot of really good doctors are still prescribing penicillin and amoxicillin for strep. It takes FOREVER for the AMA to finally make a change- it really does. A few years ago they were in the process of coming out with new guidelines for antibiotic treatment of strep, but it still has not happened. Although PCN and Amox work fine with some people's strep, b/c it has such a high failure rate, it really is not the best antibiotic to treat strep. Cephalosporins (such as Keflex or Omnicef) or macrolides (zithromax, erythromycin, clindamycin) are much more effective in clearing strep. IMO, I think it is best for most kids with PANDAS to be on one of these antibiotics. Colleen

My advice would be to either increase the Amoxicillin back to a treatment dose or do another prophylactic antibiotic (Keflex or Zithromax). How much Amoxicilin was he on for a treatment dose? I know some people have good results with Amox, but none of my kids did. I think everyone needs to have a very low threshold of symptoms returning before increasing antibiotics, especially when you have had a recent positive strep test. Colleen

Is he on the penicillin prophylactically? When did he last test positive for strep? Penicillin sometimes does not erradicate strep. Yes, it kills strep in a test tube, but not in the body. Sometimes children with PANDAS do not react well to the three medications he is on. If it were me, I would switch his antibiotics asap to a treatment dose of Zithromax. If any of the strep is intracellular (commom reason for penicillin to not work on strep) it will get to the strep. You could also add Ibuprofen, which decreases the inflammation in the brain. If he is 11, he could take 200-400mg every 6 hours. You may want to try that for a week and see if that helps. The steroids are used to decrease brain inflammation. That is something you should seriously consider. Type in steroids in the search box and there is a lot of info here b/c a lot of children have benefited from the steroids. I already commented on the hospitalization, but again, I would definitely not even consider that. Colleen

What antibiotics and at what dose? I am asking b/c a lot of times these children are given ineffective antibiotics or doses that are too low. Colleen

Deanna- Yes, you can buy oscollococcinum at health food stores. Alot of other stores sell it now also (target, walmart, cvs). You take on vial at the first onset of symptoms, another vial six hrs. later, and one last vial in six more hours. Colleen

Lena, I am so sorry for what you are going through. From what you described, your child definitely does not require hospitalization. It is very odd that your neurologist even suggested it. IMO it would only make things worse. What meds is he on right now? Colleen

Yes, the prophylactic dose is just a smaller dose, but given every day. I hate that my kids are on antibiotics too, but it is crucial to prevent strep in order to prevent all of the awful PANDAS symptoms. I did not use prophylactic antibiotics for a long time and I will always regret it b/c I feel that my daughter had untreated strep that at thye time I was not aware of for such a long time that I fear she hmay possibly have some lasting effects. I have been much more agrresssive with antibiotics in the past few years and things, knock on wood and many prayers, are much better now. My 6,8, and 13 yo are all on Zithromax 250mg/day. When we try to decrease to 125/day we see a flareup. They can't be on Zith forever, but what I am 100% sure of is that they will be on some prophylactic antibiotic through childhood. You sort of have to look at it as if your child has rheumatic fever and the protocol for that is prophylactic antibiotics. The families that I know who have been reluctant to use prphylactic antibiotics eventually do use them after a big flareup. If your child gets strep, there is such a wide range of symptoms, from minor to extremely severe, and you never know which it is going to be. It is a huge gamble, IMO, to not use any prophylactic antibiotics. Rearding testing yourself and husband- great idea. FYI, neber ever rely on a negative rapid strep test. They are often negative when the child has strep. Insist they grow the culture out for 72 hours (if rapid is positive you don't need culture). Good luck! Colleen

The 16 yo in Texas who died had multiple chronic medical problems. I have read about two healthy children with H1N1 that died last month, but they both died from secondary bacterial infections (strep). They also had strep at the same time, but no one tested them or treated them b/c they assumed the sore throats were from the flu. We are not getting the vaccine. We have had the flu several years and have had excellent results with oscollococcinum. It cuts the viral load in half, has none of the side effects that tamiflu has, and can be given to anyone. I think that it is really important if any family member gets the flu that they be closely monitored for any signs of a secondary infection and not just assume the symptoms are all related to the flu. Colleen

I see an increase in symptoms when they have a cold or other virus, but nothing at all like with strep. I thought it was very interesting that when they had whooping cough and chicken pox last year, I didi not see any increase in symptoms. Colleen

Hi Lena, What dose did your doc put him on for the Zithromax? How many days? Just asking b/c most times 5 days is not long enough. Good move washing the toys and switching toothbrushes! Strep can live for up to 17 days on a toothbrush!! Have you thought about prophylactic antibiotics? There are some options. Some kids are on Zithromax, keflex or Omicef (cephalosporins), some on Augmentin. Colleen

I would add a different antibiotic prior to any dental visit. We have used Keflex on the day beofore, the day of, and the next day. My kids take Zith daily, but when two of them have gotten ear infections, we add a different antibiotic for 10 days for the ear infection, continuing also with the daily Zith. Colleen

If the rapid was positive, he definitely has strep. What probably happened is they swabbed both swabs at the same time and the one they sent for a culture was the swab that did not touch the tonsils and throat enough. What did your doctor say about it? Is he responding to the antibiotics now? Colleen

Three of my children (ages 6,8,13) are on their 11th month of Zithromax 250mg daily. I am scared to death (understatement) to change the Zith to something else. I am also very concerned about using it longterm. This is a constant concern that I think about everyday. I know for sure that I will keep them on antibiotics for a long time b/c I have seen what happens when they get a strep infection and that scares me the most. Colleen

Sam, You all are in my prayers. Good luck and hang in there! Colleen

My daughter is 13 and just had her second period. I don't see any difference yet, but she is on daily Zith. If anything changes in regards to the link to menstruating, I will definitely post. I thought at some point I read that the hormones can initially make things worse. I have not noticed that either, jut the "teenager tude". Colleen

Susan, If she has had that reaction to gluten before, it may be the meds she received in the hospital. There are lots of meds (have not found a comprehensive list yet, but I am looking) that contain gluten. Get her medical records from that day and the meds they gave her should be listed. Colleen

Hi. I did not have a good response with my daughter using Amoxicillin. She had several months of reoccuring strep infections. She would finish 10 days of Amoxicillin and within 1-2 weeks have strep again. If I could do it over again, I would have switched antibiuotics after the first time. I know some people on thius forum have had good results with it though. My advice would be to have an extremely low threshold as far as any symptoms coming back or symptoms not completely going away, then I would switch immediately. Some kids (my kids definitely do) react to the red dye in the liquid amoxicillin, so keep that in mind. Read up on intracellular strep so you have a good understanding of it in case you need to make your case to your physician for switching. Many physicians insist that strep is not resistant to Amoxicillin or penicillin, which is just not the case. These abx may kill the strep in a test tube, but in the body there are different mechanisms that cause these antibiotics to not erradicate the strep. You mentioned that your child is on 1 tsp, 2x/day. Do you know how many mg of Amoxicillin is in it per tsp (thre are 3 different doses of amox liquid- 200mg/5ml, 250mg/5ml, and 400mg/5ml). I am asking b/c sometimes the treatment dose a child is given is not high enough for strep. It may be for other infections, but not with strep. Colleen

I think my sister's pediatrician had her 8 and 10 year old on 10 days of Zithromax 500mg. Colleen

My sister's children also have PANDAS (as well as my children). Her pediatrician is SUPER conservative, but insists (per research that her doctor has read, but I cannot seem to find), that for strep, a treatment dose must be 500mg/day. Her pediatrician says this 500mg/day is needed, even in a child weighing only 60#. I am not sure about lower weights, but for 60# and higher, she says 250 is definitely not enough. If this is true, and I do believe it to be true, many children are getting treatment doses that are far lower than needed. Once the treatment dose is done, bumping down to 250 should be fine. I continue to wonder if this is the reason kids have flareups while on lower prophylacic doses of Zithromax (when it is given every other day or a few times per week). I wonder, if at some point they have an active strep infection that is not detected, that this low dose is ineffective in erradicating the strep. Colleen

I am not sure what to tell you about switching antibiotics at this time. Is this the 1st time he has been on Zithromax and, if not, how did he respond to it previously? There are some (not a lot) of strep strrains that are resistant to Zithromax, so that could be happening, but not likely. Is it possible that he had an initial positive response to Zithromax b/c it is working, then got exposed to strep and is reacting to that? My kids are on Zithromax prophylactically (250mg/day for 11 months), but when exposed closely to strep, do have a big flareup. If he is 8 years old, and if you see that Ibuprofen helps him, I would feel safe in giving him 200mg of ibuprofen, up to 3 times/day. Hang in there! Colleen

Sam, With Shae weighing 40 lb., given that the treatment dose for strep is 30-50 mg/kg/day, the lower dose (30 mg/kg/day) would be 300mg, twice a day. The higher dose (50mg/kg/day) would be 450mg, twice per day. I am assuming that if her dose is 200mg, twice per day, that she is taking the liquid. If it were my child, and I am not in any way telling you what to do, I would increase her dose for 10 days, to a treatment dose. If you are giving her 1 tsp 2x/day, she is getting 200mg, twice per day. If you increase the dose to 1 1/2 tsp, 2x/day, she would be getting 300mg, 2x/day (which is the lower treatment dose of 30mg/kg/day). If you increase the dose to 2 tsp, 2x/day, she would be getting 400mg, 2x/day (which is the treatment dose of 44mg/kg/day). (treatment dose range 30-50mg/kg/day) I hope this helps some! Colleen

Sam I would probably increase the erythromycin. The treatment dose is 30-50mg/kg/day, in divided doses and not to exceed 4,000 mg/day. What is Shae's weight? I would try to keep your children as separate as possible, throw out toothbrushes and even toothpaste that may have been contaminated. Have you ever used xylitol? You can get it in mouthwash, nasal spray, and gum. Maybe you could add that temporarily- nit can kill strep in the mouth and sinuses. As far as rapid strep tests while on antibiotics- I would say it would not show a positive. I have lost all faith in the rapids b/c so many times the rapids are negative for my kids, then the culture is positive. I also think anyone else in the house should be swabbed, esp. if you have a sore throat, just to rule out that you didn't gt exposed by your son. Good luck! Colleen

I am sorry- I was not clear. All of these non A streps have been in myself and my children, not pets, but that is why I was saying to treat any type of strep your pet has and not just strep A. We did culture our dog years ago. The vet did a throat swab. Colleen