colleenrn

Two of my children have had their tonsils and adenoids removed and did much better (no strep) for over a year. I would definitely recommend giving antibiotics before surgery, during/after surgery (IV antibiotics) and then keeping him on antibiotics at a treatment dose for a while (? a few weeks?), then switching to a prophylactic dose. If your child has strep harboring in their tonsils or the tonsils are very large, it could help, BUT you have to keep the antibiotics on board. Are they planning on removing the adenoids? Colleen

Could it be that your child has a bacterial infection and the steroids made it worse? Steroids suppress the immune system allowing the bacteria to proliferate. Read about mycoplasma pneumonia. Dr. K says it triggers PANDAS and given your child's symptoms (ESPECIALLY the croupy cough) I am wondering if that is maybe what is going on. Was the doctor saying that if strep were the trigger, that there is nothing you can do about the strep?? Colleen

Augmentin is just Amoxicillin that has clavulanate potassium (a B- lactamase inhibitor) added to it. β-lactamase inhibitors are often given in combination with penicillins to tackle the problem of the resistance caused by the presence of β-lactamases from bacterial cells. In my experience with my PANDAS children, Amoxicillin does not work with their strep, but they did respond INITIALLY to Augmentin. That did not work so well after a while though. You may want to also consider cephalosporins such as Keflex or Omniseph. Colleen

This is probably NOT what you are dealing with, but I thought I would mention it anyway. If your child has mononucleosis AND takes Amoxicillin, they will most likely get a bad rash. It usually looks like hives and is head to toe. Colleen

I am sorry to hear about your son. My 12 yo daughter has been on Zithromax 250mg for more than 3 months and was diagnosed yesterday with an ear infection (she also has a bad cold). I was really surprised that she got an ear infedtion while on Zith, but my doctor said we could either up the Zith dose to 500mg/day OR give her Keflex for 10 days WHILE she still takes the Zithromax. She said she was comfortable with her being on both for only 10 days and that it is done a lot, so that is what we decided to do. Do you think Dr. K would try adding either Keflex or another cephalosporin OR increase his Zithromax dose? Just a thought. Good luck. Colleen

I just wanted to add that someone dr's offices take 2 swabs, hold them together, swab the throat with both at the same time, then do a rapid on one and send out the other. This is NOT the best way to get a really good sample. It's best if they only swab with one at a time. Make sure they get both tonsils and not just one. Colleen

Lacy, I think it is disgraceful the wat that neurologist acted towards you. You are right to be upset! BTW, I live in central Va (Charlottesville). Have you ever seen any doctors in Charlottesville? Colleen

Thanks Caryn for your response! It turns out my daughter has an ear infection while ON Zithromax 250mg/day I would think that dose would be enough to prevent ear infections if it is supposed to prevent strep. So frustrating! My NP agreed my son's rash looked like it could be a strep rash and we did a 72 hour culture. Colleen

I would start by studying and learning anything you can about PANDAS, b/c if you do that, chances are you will have more info than a lot of docs which you will need to figure out what's best for your son. I would at the very least have frequent throat cultures. If the rapid EVER comes back negative, have them do a 72 hour culture. You can ask them to send it as an upper respiratory culture (same swab, they just run the test differently). If they run just a regular throat culture, they will not be looking for strep other than strep A. Another thing you may want to start researching is the use of prophylactic antibiotics. I am really glad your son responded so quickly! Good luck! Colleen

My 12 yo daughter has had ear pain on and off since October. Today it is much worse and ALSO her PANDAS symptoms have worsened. I am freaking out because she is currently on 250 mg of Zithromax each day, and I even bumped it up 3 days ago to 500mg/day (she weighs 120-125 lb.) Has anyone experienced this with their PANDAS children? I have an apt. in 2 hours for her. I am at a loss as to what antibiotic I should try if she got an ear infection on all that Zithromax.. Also, If I can tag this other question on this same thread- my 2 year old has what looks to me to possibly be a strep rash on his belly. SAME rash he had in Oct. when he tested positive for strep B (not strep A) and same behavioral symptoms as in Oct. (screaming a lot more than usual, throwing major fits, AND peridic dilated puplis). With all of my 4 kids, this is the earliest I have seen possible PANDAS symptoms. I am wondering if ANYONE has experience with PANDAS symptoms in a 2 year old (he just turned 2 1/2). Any help or comments or suggestions would be greatly appreciated. This really stinks! Colleen

I wonder how Dr. Sanker can make that "claim" when a lot of PANDAS children only exhibit anxiety and/or OCD and NOT tics. In the beginning, my daughter did not have tics, but OCD symptoms. When are these physicians going to admit they are clueless about PANDAS and just start studying the families that have it so they can learn about it? No one claims that rheumatic fever or SC are not "real" and it is virtually the same process. Colleen

This link talks about OC spectrum disorders, which includes tourette's, OCD, eating disorders, etc... http://www.brainphysics.com/spectrum.php I have always said that PANDAS is so incredibly tricky, not just b/c of the strep issues, but b/c there is such a HUGE range of symptoms that children experience. I never have thought of it as a spectrum, but would the fact that there is such a range make it a spectrum disorder? I think you are very wise to explore all the avenues that you are! Colleen

My daughter told me should would try her hardest at school or in public settings to not tic, but when she wouold get home she would relax and then we would see the tics. Lots of peolpe have told me they never noticed her tics until I pointed them out and they really tried to pay attention to them. I think that is probably common with some kids.

Lisa, I am glad your son is doing better on the Amoxicillin. Your doctor is incorrect when he said it would not have dissipated so soon. PANDAS kids oftern get markedly better within a few days of antibiotics- sometimes after two doses. I am not discouraging you from seeing a neurologist, but they often don't "beleive" in PANDAS and want to medicate the tics. A child with PANDAS does not need to exhibit OCD. There is a huge range of symptoms as you know (ADD, ADHD, OCD, tics,anxiety, etc..) Some PANDAS kids have only tics. You mentioned that he tested positive for strep at age 4, but you did not see symptoms. Were there any ohter changes you noted when he had strep at 4? Changes in urinary patterns, changes in sleep patterns, any type of anxiety, including not wanting to be away from you, rashes? Can you describe what the excema looks like and where it is located on his body? My children get rashes that look similar to excema, but after years of studying their skin and when they get the rashes, it is definitely linked to their strep. In fact my youngest had what one NP told me was excema, but when I showed it to another nurse practioner, she said it was definitely a scarlatinaform (scarlet fever) rash. He tested positive for Group B strep (NOT A which still has me very confused) and the rash completely disappeared with 2 days of Zithromax. Just weondering if your son's excema could be strep related. One of my sons gets a "lump" in the side of his neck when he has strep. What is your plan for when he finished the 10 days of Amox? Good luck! Colleen

This is not good news for any of us with children with PANDAS. just wanted to post this FYI. Colleen http://www.dailymail.co.uk/health/article-...ded-decade.html

I think you should have seen improvement by now on the Amoxicillin. Perhaps he would be willing to switch her to Augmentin (Amoxicillin with clavulanate potassium added for better effectivenes). The first year of my daughter's PANDAS we used Amoxicillin and she would test positive for strep within days of completing a ten day course. Just a thought. Colleen

TraceyRee, I know this may be easy for me to say and harder for you to do, but do not worry about stepping on your doctor's toes for suggesting what is best for your child. Penicillin for children with PANDAS is not the optimal choice and your son needs what he needs regardless of how you get it. I went along with my doctor for almost a year when he only wanted to use Penicillin and Amoxicillin and my daughter suffered for it. SOME kids do OK with pen/amox, but more do not. I would definitely suggest Augmentin or a cephalosporin (Omnicef, Keflex). You should see a big improvement within a few days. If not, there are others. My daughter used to test positive for strep a few days after completing a ten day course of Pen and Amoxicillin. Have you seen any improvement since he beagn the penicillin? Colleen

When my daughter's symptoms began , they were primarily tics, night terrors, and separation anxiety. It was not until we were a month-two months into it when she started any OCD behaviors. As far as the behaviors and/or tics changing, I saw that all the time. Even within one PANDAS episode, her tics would sometimes change daily. One day she was blinking her eyes, 2 days later the eye blinking stopped and it would be throat clearing, etc... There ia a wealth of misinformation and even more ignorance on the part of the medical community when it comes to PANDAS. Just keep educating yourself as much as you can about it so you will know if you are given the wrong info about it. You will soon be the expert, not your doctor .One of the many tricky things about PANDAS is the HUGE range of symptoms. BTW, I think you were very smart to test your dog for strep. When my daughter's symptoms started years ago, we had a Great Dane and we had him tested for strep as we were desparate to fing someone/anyone who may be reinfecting our daughter. He was negative, but I remember the vet saying that dogs can definitely be strep carriers. What antibiotic does your vet recommend? if your dog is a carrier, I would think a strong antibiotic would be needed and it would be best to keep your daughter away from him for a while until the antibiotics kick in. Good luck! Colleen

Browneyesmom, I live in central Virginia. Where in SW VA do you live? Something that has been essential for some of the parents on this forum is having their physician call Dr. James Leckman at Yale, who will set them staight as to treating PANDAS with antibiotics. I would highly encourage you to do this as antibiotics are so crucial in PANDAS. In fact, my sister's daughter was just diagnosed with PANDAS and the only thing that FINALLY got her to give them Zithromax, was calling Dr. Leckman. My sister's doctor has been aware of PANDAS for years b/c of my children (my sister let her doctor know about what my kids were going through) and she STILL would not completely "buy into" the fact that my niece has PANDAS. One short phone call with Dr. Leckamn changed all of that. Colleen

Joyfulshout, I am so sorry to hear what your family is going through. In my opinion, PANDAS must be ruled out as a cause b/c if it is PANDAS, it is crucial he be treated with antibiotics. You stated this all began around age 4-6, which is a very common time for PANDAS to manifest. I would make a list of specifically what you want the the doctor to do and march in with the list. Don't take no for an answer. You are paying for the doctor to provide you a service and if he/she won't provide that service, I would look elsewhere. I would most definitely have titers drawn (ASO and antiDNase . If the titers are normal, that still does NOT rule out PANDAS. I would also have a throat culture done (NOT rapid test- but insist they grow it out for 72 hours). If you meet any resistance, perhaps telling a small white lie such as "I have a good friend who is an MD out of state and that MD friend told me I needed to have these tests done on my child". I am a nurse and I have seen SO many doctors discount what a parent wants, BUT the second they hear that another doctor feels something should be done, they quickly begin to listen. Just a thought. Also, can you look back over the last several years, especially the first 1-2 years that you noticed symptoms, and look for other things that could help to either confirm or rule out PANDAS. There are many symptoms that these kids go through that at the time is not seen as a symptom of PANDAS. Some of these are any type of change in urinary patterns (feeling urgency to urinate, urinating more frequently, feeling like you stiil have to urinate after you have already emptied your bladder, wetting bed or having accidents), night time difficulties (night terrors, nightmares, separtation anxiety (not wanting to sleep alone), enlarged puils, red, fine, rough rashes on chest and cheeks, perhaps an exacerbation of symptoms after dental work (teeth cleaning, tooth extraction), hyperactivity, deterioration of math skills, deterioration of handwriting, fear of choking. This list may seem long, but it is not all inclusive- PANDAS kids have a huge range of symptoms. Good luck! Colleen

I was wondering what the best way is to start to figure out if my children have yeast overgrowth and/or leaky gut. My daughter has been on and off antibiotics for the 12 years of her life, as well as my 3 younger children. I research like crazy about strep, PANDAS, etc.. BUT I have completely fallen short of the yeast issue and it must be there based on the years of antibiotics. Is there any test I can do at home? I just don't know where to start in figuring this out. Any help would be so appreciated! Thanks! Colleen

That was hard to watch. I wanted to strangle that attorney. How dare they interrogate those parents like that. We have to fight for our rights as parents. Colleen

Myrose, THe optimal dose for Zithromax is 12mg/kg/day. If your daughter weighs 45 lb. (20.5 kg), then her dose would be 245 mg/day, so I think it is perfectly fine for her to take 250mg per day. Good luick! Colleen

Hi Browneyesmom: I am sorry to hear what you and your daughter are going through. I just wanted to comment after reading your posts. What you have described with your daughter definitely sounds like PANDAS and very similiar to my daughter, who is now 12 1/2, but diagnosed at age 5 with PANDAS. Amoxicillin was extremely ineffective for strep in my daughter's case. I would get a throat culture on her a few days after completing ten days of Amoxicillin and she would still be positive. We then switched to Augmentin, which was effective for a while. She had a T & A when she was 6, after which time she did not get strep for 1 1/2 years. Since then we have found Keflex to be effective , but Azithromycin more effective. I think alot of PANDAS kids have intracellular strep and that is why Zith works better. There are lots of supplements that can help alot, BUT the bottom line is doing whatever you can to keep them from getting strep, which means prophylactic antibiotics. I read that you said you are an RN- I am also. I think it is shamefully disgusting what some parents (a lot of PANDAS parents) have to go through to get antibiotics for their children. Maybe the fact that you are an RN will help you in your quest, it has defintiely helped me to get doctors to listen. I made the mistake about not being agressive enough about her antibiotics. We did not do prophylactic antibiotics for a long time and I am really afraid she may have some lasting damage from that. My doctor at the time would give me antibiotics when she had strep, but that was just not enough. Colleen

Sarah, I found that when my kids first started Zithromax, they had on and off abdominal pain, especially my 12 yo, BUT after they had been on it a week or two, they did not have the abd. pain. I figured their GI tract got used to it? Colleen