colleenrn

I wonder if in kids with PANDAS, could their wbc count NOT raise just like their strep titers don't raise? Does anyone know? Has anyone's child had strep but no elevation in wbc?? Colleeen

Thank you for your response! I do have enopugh Zithromax from my other kids that I could give him and I am very tempted to. My gut told me from the beginning that it was strep and not just a coincidence that he had just been to the dentist. My fear is that thge culture will also come back negative as it has so many other times. Right now I get antibiotics for my other 3 kids from the NP I always see- the one who decided not to send the culture, which still blows my mind. She believes that my kids have PANDAS, so even if she felt it was viral on Thursday, she should have sent it anyway, or at the very least, told me she was not sending it b/c then I woiuld have insisted she send it. When we were there Thurs and he needed IV fluids b/c he was so dehydrated, the nurse drew blood for a CBC before hooking up the IV. They called Friday and said "the blood work looks viral". I will ask to see the labs today, but what looked viral? What did not look bacterial? Colleen

I am so upset I could scream and cry. I posted last week about how sick my 3 year old was and that I was so suspicious it could be strep b/c it all happened after his first dentist visit. He started to get better this weekend, then spiked 102 fever last night. I called our physician this morning b/c I had not heard anything over the weekend about the 72 hour strep culture and the nurse said they threw it away- the dr thought it was a viral illness (rapid was negative) so they never sent out the culture. NOW, he is wetting the bed, has enormous lymph nodes in his neck, has a fever, and had periods of sleep apnea last night (all of the things he does with strep). I have a 330 apopintment for him today, but have to see someone I never see who knows nothing about PANDAS or my children's history. I am so worried about him. My gut tells me he has strep, but if the rapid comes back negative, the dr I am seeing is highly unlikely to give me antibiotics. What to do? Colleen

Thanks for the responses! We did a rapid strep test and a flu test- both negative. We are waiting on the 72 hour culture. He does not have his "normal" signs of PANDAS (wetting bed, rash on abdomen, screaming) but I am VERY suspicious b/c this all started 5 hours after his first teeth cleaning (Bad abdominal pain) and the fact that his temp was 103 for 2 days. I am also suspicious that it could have to do with strep/teeth cleaning b/c none of my other 3 kids have gotten sick and when it is viral, usually at least one of them gets it. He was so dehydrated he had to get IV fluids, but tthankfully they were able to do it at the office instead of sending me to the ER. Colleen

Pixiesmommy, If Pixie doesn't have strep, the every other day Zith may be enough, but if she has strep, the every other day would not be enough. My sister's physician, who is very conservative, says that with an active strep infection, a much larger dose is required. She uses 500mg of Zithromax with an active strep infection in a 60 lb. child. If you think it is strep, can you give her the 250mg every day for a week and then re-evaluate? Just thinking out loud. Good luck with your antibiotic too!! Colleen

I am trying to figure out if my 3 1/2 year old son could have strep. He is my only child who is not on prophylactic antibiotics (other 3 kids on zithromax 250mg/day for past 18 months). I am very suspicious b/c this Tuesday he had his first teeth cleaning at the dentist (if he had any strep in his mouth it definitely could have entered b/c he bled several times on his gums while they were cleaning him). Five hours later he is complaining of bad stomach pain, vomits several times, then wakes up the next day with 102 temp. Next day (today) he still has 102-103 temp and periodically has diarrhea. Has anyone seen diarrhea when their child has had strep? Not sure if it is just a coincidence that this occured after dental appointment. (Keep in mind that he just had a GI bug that was going around a month ago so it can't be the same one- maybe a diferent one?) For those who have children that experienced a flareup in PANDAS symptoms after being at the dentist, how long after didi you see the symptoms begin? He usually gets a rash on his abdomen, becomes incontinent of urine, and throws lots of fits. I am not seeing any of this. Thanks! Colleen

Just wanted to add that if someone is exposed to impetigo they can get strep throat and if someone is exposed to strep throat, they can get impetigo. When my daughter was younger she used to get impetigo when she had strep. Impetigo can be caused by staph, but my bet is with PANDAS children it is almost always caused by strep. Colleen

That is hard for me to swallow- that a doctor is well versed in PANDAS yet does not believe in prophylactic antibiotics? Ask him how he would treat your child if they had rheumatic fever? I don't get why some physicians cannot grasp the concept of preventing strep infections, not just waiting for strep to attack the brain, then doing something about it. Colleen.

I would try to have a phone consult asap with either Dr K or Dr Trifiletti. That way one of them can help get you antibiotics and/or IVIG. Your doctor is dead wrong. Colleen

My kids are on Zith 250 mg/day and when they have gotten ear infections our doc adds another antibiotic for 10 days, but we continue on the Zithromax. It is OK to be on 2 antibiotics at the same time, espeically if it is just for a course. Colleen

This just happened to us. The rapid on my three year old came back positive, but the culture came back negative. The reason it happened in our case is that the nurse took two swabs and swabbed them both at the same time. The culture swab obviously did not get a good sample. Just FYI- it is best if they do each swab separately (not two swabs to do a rapid and a culture) and make sure they get a good sample from both tonsils. When you get a faint line on a rapid test, it is still positive. It is like with a pregnancy test, if you do it really early in the pregnancy you can get just a very faint line, but still positive. I think that people reading the rapid tests sometimes do not wait long enough or scutinize it enough and if they did they would see a faint line. Years ago I knew my child had strep and the NP belived me. When she read the rapid she saw the faintest line and commented that many nurses would have mistakingly interpreted that as a negative. Colleen

Bactrim is not a typical antibiotic used for strep. It is used most often for ear infections and urinary tract infections. I am not sure why your physician jumped from Augmentin to Bactrim. Besides Augmentin, what antibiotics has your child been on? IMO, if he has strep while on Augmentin, I would switch to Zithromax. Colleen

Yes, it sounds likely to be PANDAS. Given his age and severity of symptoms, I would get him on Zithromax (azithromycin) 500mg (don't mess around with a lower dose) and see about adding prednisone. I would also give him Ibuprofen 600mg every 4-6 hours around the clock for the next several days. Dr. Trifiletti may be of help to you. This is his new web site. http://pandas.yuku.com/directory Dr. Kovacevic (DR. K) has www.webpediatrics.com and he is another great resource. Colleen

Bedwetting is one of my 3 1/2 year old son's first symptoms. I did not see this with my other children though. Colleen

I was just saying that is what I would do with my kids, but I don't want to tell you what to do. I would want them to continue getting the Augmentin for a few days while the Zith is getting on board. My kids have gotten ear infections while on Zith and we add a 10 day course of Augmentin, but do not stop the Zith. It is OK for most to take both at same time. Definitely not ideal, but OK. I would give them spaced out by 1/2 a day. Are you also doing probiotics? Colleen

Deanna- Did Dr L give you 250mg/day? How much does he weigh? I am thinking that if this were me I would continue to give him the Augmentin for the first three or so days you give him the Zithromax. Yes, I would start right away. Colleen

Based on the increase in titers I would switch to Zith now and see how he does. Zithromax is just so much better at getting intracellular strep and maybe that is what is going on with him now. Colleen

That is interseting b/c we have a family history of rheumatic fever and my children and my sister's children all have PANDAS. I am hypoglycemic, as my mother was, my grandmother and my daughter. Not my boys though that I know of. Colleen

Amy, How did they determine it was a staph infection in your other child? Did they culture it? Colleen

I second the hahahahahahahaha regarding NIMH web site. I think it is doing harm to a lot of children b/c their physicians read it and treat based on the old recommendations. I posted this before, but in Feb. 2009, I was corresponding with Dr. Swedo as she had diagnosed my oldest child in 2001. She said "we are in the process of updating it". Still waiting for that very crucial update....................... Colleen

Fixit, Is there any possibility your son could be EBV positive, b/c amoxicillin/augmentin will cause hives if person has EBV. Just a thought. My daughter, years ago, developed hives after months on prphylactic dose of Augmentin. We thought she was allergic, but allergy tests were negative. She has since (3 years later) taken it without problems. Now, I wonder, did she have EBV at the time and that caused the hives. Yes, you can give an #80 child 400mg of ibuprofen, but the "normal" dose would be about 300mg. Colleen

Three of my kids have been on Zith 250/day for 18 months without any real problems. There have been a handful of times when it cause a stomach ache, but that has been rare. My sister's children do get occasional stomach aches from Zith, but that is mainly when they are on 500mg/day. You can give it with food if it causes problems, but be aware that food can decrease absorption. I try to give it to my kids firast thing in the morning, about 30 minutes before they are going to eat. If they are on it long term, you may want to check liver function at some point, but talk to your physician about the need to do that. Colleen

Could it be a strep rash? I call it strep cheeks. When my kids get strep or are heavily exposed to it, they almost always get red cheeks with a fine tiny red bumpy rash. Given that his mood has been up and down this week, I would be highly suspicious that he could have strep. This is possible even though he is on penicillin, especially if he is on a lower maintainance dose. If this is a possibility, you could have him cultured, but be aware that you can get a false negative culture b/c he is on pen. Does he have any other skin changes on his body (esp. abdomen, neck, back)? Would your physician switch you to Augmentin or Zithromax or a cephalosporin such as keflex or omniceph? Colleen

That is why my sister took her kids off Zith and put them on Augmentin. The insurance would only pay for 5 Zith pills per month. Colleen

That is great that you got the Zithromax and a good dose. Just observe him closely for any improvements! Good luck. Colleen