colleenrn

If the strep culture is positive, it doesn't tell you with 100% certainty that it is PANDASA, but it sure would point in that direction. Yes, you can have untreated strep for a long time without knowing it, especially if you do not get any physical symptoms. My daughter had an onset of tics in October, which worsened throughout the winter. It was not until late January that she spiked a fever and we found out she had strep. If he does have strep, my advice would be to treat it aggressively. Colleen

I would ask to switch all 3 of you to Zithromax today. It is probable in this situation that Amoxicillin is not eradicating the strep. This has happened in my family and we never use Amoxicillin anymore. Amox works with some people, but not others. Amoxicillin cannot penetrate into the tissues to get at the strep once it is intracellular. This is often the reason for Amoxicillin failing. Zithromax penetrates into the tissue. Colleen

Dorothy, Your son had strep 2 weeks ago and just began with tics? What antibiotic was he on, what dose, and what is his weight? IMO, he could still have strep. Did the clinic you took him to yesterday do a throat culture? If not, I would suggest getting a throat culture (make sure they grow it out for 72 hrs. and that they vigorously swab both tonsils and side of throat. When PANDAS began with my daughter at t he age of 5, she had strep from January until April. Everytime she would stop taking antibiotics, she would have strep again. We came to learn that the Amoxicillin she was on was not getting rid of the strep. This could possibly be the case with your child? Zithromax or even a cephalosporin (Omnicef or Keflex) would be better choices. Colleen

Mom04, I just wanted to add that something you could look into, completely benign, is just getting a throat culture to begin with. When a young child begins to show any signs of tics, OCD, anxiety, aggressiveness (etc..there are so many different symptoms) you could possibly be dealing with PANDAS. At this time of year, there is so much strep going around, he may have been exposed to strep. I am not in any way saying your child has PANDAS, but what you have described in your son is exactly how PANDASA began with my daughter at that same age. There is a wealth of info on this site (PANDAS forum) about PANDAS. A lot of times when a physician hears that a child has tics, they immediately think Tourette's and begin with neurology appointments, psychiatric evaluations, psychiatric medications, etc... and miss the fact that it is actually PANDAS caused by strep. That is why is can be extremely helpful to just ask your pediatrician to do a strep culture, regardless of the absence of any physical symptoms of strep, b/c many children do not get any physical symptoms when they have strep (my 4 childrten included in this category). I know whn they have strep based on their behaviors b/c they get no physical symptoms. Colleen

Ellen's kid- I just wanted to tell you that I think your new PANDAS site is awesome!! I will definitely show it to my kids! Way to go!!!!!!!!!!!!!!!!!!!!!!! Colleen

I was so happy when he made it to Hollywood!!! What a very brave young man (and great singer too!) Colleen

I am speechless as to the utter stupidity of that physician. Sorry if that sounds strong, but it is true. If she wants to complain about him, find out who is in charge of his practice. Perhaps he has more senior physicians over him that could be told of how inappropriate he was. At the very least, tell her to switch docs. You may want to post on the PANDAS section, b/c there are some families on there that live in California who had a cluster of PANDAS in their neighborhood and they would probably be able to give you more info. Have you had your child checked for strep or have you ruled out PANDAS? Colleen

Yes, if you have mono (EBV) and take Amox, you can get hives. This happened to me when I was a kid and took Amox for an ear infection while I had mono. Could she have mononucleosis right now? My daughter, years ago, was on daily Augmentin for about 4 or so months, at which time one day she developed hives and we stopped giving it to her. Zithromax (Azithromycin) should not cause this to happen. Can you switch her to Zithromax? Colleen

My kids are 1/4 German, 1/4 Italian, 1/4 French, 1/8 English, 1/8 Irish Colleen

Mrigsby, Have you had him evaluated to see if his tonsils and adenoids are enlarged? Sometimes the tonsils and adenoids can be a source of reinfection. While on antibiotics the child improves, but deteriorates whenever off the antibiotics b/c there is still a little strep hiding in crypts (holes in tonsils) that recolonizes if not on antibiotics. This was occuring with my two oldest children until they had a T & A. I am taking my 3rd child in for an ENT evaluation in a few weeks b/c I think that may be happening with him right now. If your child is a carrier you can erradicate the strep with the correct antibiotics. Colleen

My 50 lb. child takes Zithromax 250/day and has been taking that dose since he weighed 45 lb. Does your bottle say 100mg/5ml OR 200mg/5ml? It most likely is the latter, which means he would be takling 120mg/day. IMO, that is a low dose. Colleen

Tatoomom, Yes. My 3 oldest kids have been taking Zithromax for 15 months. Colleen

No, my kids have not taken Rifampin, but I am so suspicious of my 6 year old- that even on the Zith he may still have strep lingering b/c of his huge, juicy tonsils. IF we decide to take the tonsils and adenoids out, I think I want to do the Rifampin beforehand to make sure there is not any strep left. I am reading and researching it now. Zithromax probably clairs the carrier state for most people b/c it reaches intracellular strep. Colleen

Yes, I was talking about two antibiotics at the same time and one of them is usaully Rifampin. In the book Clinical Management of Streptococcal Pharyngitis by Dr. Pichichero (he is a Pediatric Infectious Disease doctor in Rochester, New York) he says that, "Clindamycin and Rifampin may be the most effective in eradicating the carrier state, perhaps because some carriers have strains that localize intracellularly. Clindamycin is very similiar to Zithromax, so Zith and Rifampin would probably do the same. Colleen

MY 120 lb., 80 lb. and 50 lb. children take Zithromax 250mg per day as a prophylactic dose. When we tried to decrease it to 125/day, symptoms creeped back. When they have been exposed to strep or have a flareup in symptoms, I bump the older kids up to 500 for a few days and the younger one up to 375 for a few days. My niece and nephew both have PANDAS also. Their pediatrician, who is super conservative, puts them on Zithromax 500mg/day for 10 days when they have an active strep infection (they take Augmentin 1000mg/day as a prophylactic dose which usually keeps them from getting strep, but occasionally they require the Zithromax added in). This docotr told my sister that with an active strep infection in a person weighing 80 lb. or more, Zithromax should be given at 500 mg/day. I have searched and searched for anywhere this is actually documented and can't find it. Colleen

The first time I used Zithromax for my daughter I was given a Z-pack. I saw some improvement. When I learned here that an extended course is usually needed, my doc gave her 2 Zpacks, BUT told me to give the first pack then wait 5 days and start the second pack. When she was off it for those 5 days her symptoms came back, not as bad as before, but definitely back. When she started taking it everyday her symptoms were much better. The fact that he responded so well to the Zith is great evidence for keeping him on it for a longer course and observe how he responds. I am sure you have read on this forum that negative strep titers in no way rule out PANDAS. That is just misinformation that a lot of physicians are going on, unfortunately. Colleen

It could be PANDAS based on what you have described. IMO and experiences, I do not think that strep carriage is benign. In kids with PANDAS it is definitely not benign and needs to be erradicated. Sometimes it is difficult to erradicate strep, but is can be done. Sometimes it just requires the right antibiotics and it may need two different antibiotics. I would definitely get her swabbed and have them grow it out for a full 72 hours. If it comes back negative I would still find someone willing to put her on Zithromax for a few weeks and observe for improvement. The pocket in her tonsils that the ENT talked about is a perfect place for strep to hide. The ENT, since he wanted to swab it, may be willing to do the Zithromax regardless of the culture results. Colleen

Hi Faith, I am in the same boat. I just scheduled an ENT consult for my 6 year old b/c his tonsils are always huge. Long story short: My daughter had her tonsils and adenoids out when she was 5 b/c of chronic strep and they were always large (caused her to snore starting at age 2). The ENT said when he took them out they were very large and cryptic. After having them removed she was 100% symptom free for 1 1/2 years. My second child had his tonsils and adenoids out at age 4 b/c of chronic strep and his were so large that it was actually causing sleep apnea. ENT said the same about his- very large and cryptic. My third child started getting strep at age 2 and has always had large tonsils. For the past 2-3 years I have agonized over whether we should remove them, but his never caused sleep apnea. B/c I had more knowledge about PANDAS by the time he came around, I have treated him more agressively with antibiotics, but the reason I am considering removing them now is b/c all of my 4 kids were heavily exposed to strep over Christmas, but my two kids with tonsils had a big flareup in PANDAS symptoms and my two without tonsils seem OK. Even though my 6 year old is on daily Zithromax, I am really thinking that while he has those big cryptic tonsils, maybe he never fully gets rid of the strep. Anyway, I just want to see what the ENT thinks and go from there. I think getting an ENT consult on your son is a good idea. If they say his tonsils are large and/or cryptic, having them removed may help him. Good luck!! Colleen

Dr. Trifiletti, I just wanted to thank you so much for all the work you do with PANDAS and for being willing to help so many families. I have four children and three of them have PANDAS. We think the youngest (age 3) does also, so it is so encouraging, after eight years of hearing physician after physician say, "PANDAS, what is that" or "I don't believe it exists" or "I can't treat it b/c it is controversial", to hear you on national TV asserting that PANDAS is real! Thank you so much! Colleen

It is a shame that when a physician does have enough knowledge of a certain disorder that he/she can't have the courage to admit it INSTEAD of claiming the disorder to be "made up". Post the results of the culture when you hear from your doctor's office and we can help you go from there. It would not hurt to do an EEG to rule out seizure activity. There is a type of seizure called absence seizure (also called petit mal seizure) that causes the person to look like they are just blank staring. It most likely is not the case with your son, but being able to rule it out will confirm for your doctor that there is no seizure activity. Good luck. Colleen

memom, How long has she been on the increased dose of 875mg and have you seen an improvement when you increased dose? If you see improvement on the 875, I would think about increasing to 1000 and observe for improvement. I can't comment on the IVIG, b/c I have not done it yet with my kids and struggle as to whether or not to try IVIG. Colleen

That is great news! How much Zithromax is he on? Do your doctors feel safe keeping him on Zithromax for that long? I am asking b/c my 6, 8, and 13 year old children have been on 250mg/day of Zithromax for 14 months. We did liver functions this summer and they were normal, but towards the upper level of normal, so I am always nervous about keeping them on it and for how long. I feel it is the best antibiotic, hands down for them and don't want to stop it, so I am looking for any reassurance that is is safe to keep giving them. Thanks! Colleen

Hi. It does sound very suspicous of PANDAS. In my experience, siblings can present very differently. My oldest child had the abrupt, over night onset of OCD and tics, so she was much easier to figure out. My Next two children were more difficult to figure out b/c they have had minor tics, here and there, but their symptoms are more just being extremely emotional, hyper, fidgety, lack of attention, etc... B/c they are active 6 and 8 year old boys, it is so hard sometimes to tease through the symptoms. Are they all PANDAS symptoms? Are some just normal behaviors for little boys? And my youngest (3) is the most difficult to figure out, so I am struggling right now to determine if it is PANDAS with him. What was her CamKinase? My 46 lb. son is on 250mng of Zith per day and cannot go lower than that dose or symptoms worsen. When I see a flareup even on the 250 of Zith, I bump him up t 375 for about 5 days. How long has she been on the 200/day? You may want to consider bumping her to 250/day or even 375/day for a week, and drop back down. These are all just suggestions. I know how frustrating it is to try and figure this all out. Colleen

The whole strep carrier thing is "controversial"... IMO, if your child has PANDAS, or has Tourette's or OCD, being a carrier is not benign as some people think it to be. What antibiotic is he on and at what dose? I do not see any reason for repeating a positive strep culture. If it is positive it needs to be treated. I would very closely observe him to see what changes occur while he is on the antibiotic. Colleen

Just saw that you posted you have a sore throat. Definitely get a throat culture (72 hours if rapid is negative) b/c often another family member in the house HAS STREP while the child is exhibiting PANDAS symptoms. You may want to be safe and culture everyone in the family. Colleen