colleenrn

Susan, I just wanted to add that there are two ways to send a throat culture (labs grow them out in a different way- look for more pathogens). One way is to just send the swab as a culture for strep A. The 2nd way is to send the swab as an upper respiratory culture. This looks also for non-A strep, as well as other pathogens, such as mycoplasma pneumonia. The swab is done the same way in the throat. It may be more expensive to do it as an upper respiratory culture, BUT I think it is important to do it that way with PANDAs children b/c if you keep getting negative throat cultures, you are just finding out they don't have strep A, BUT they can have other streps (B,C,D,G,F...) or other pathogens that are triggering PANDAS symptoms. I really think this may be occuring in some kids with PANDAS. The advice that people have given to make sure it is grown out for 72 hours is very true! You can have a culture that is read negative at 48 hours, which is when most cultures are read in a lab, but by 72 hours the culture reads positive. If your lab is reading the culture before 72 hours you may be getting a false negative. Colleen

Pat, Yes, you can get a negative throat culture and most definitely still have strep somewhere in the body. I have seen it many times with my children. Strep can be in the gut, the adenoids, sinuses, perianal area. If your child improved on Amoxicillin and then the symptoms reappeared once the course was done, I would be highly suspicious of strep, regardless of a negative culture. When my duaghter began her PANDAS journey at age 5, she would show signs and symptoms of strep within days of completeing Amoxicillin. Eventually when her tonsils and adenoids were removed, we realized they were both harboring strep that the Amoxicillin was not erradicationg fully, so once she was off the Amox, the strep immediately recolonized. I really feel like this may be going on in a lot of children with PANDAS. It may not be a bad idea to check for mono b/c it is much easier for a PANDAS child to get mono as their immune systems are already so copromised. Colleen

Hi Richard, The pneumonia your son was diagnosed with is an atypical pneumonia, similiar to mycoplasma pneumonia. I was wondering what antibiotic your son was on? Colleen

MyRose, Stuffiness can sometimes be related to enlarged adenoids especially in children with a strep history. Before my son had his tonsils and adenoids removed, our ENT put him on Nasonex b/c his adenoids were so large it was causing sleep apnea. The Nasonex must have shrunken his adenoids (temporarily) b/c his sleep apnea greatly improved. This could possibly be more "evidence" for you to use b/c a lot of times when you KNOW your child has strep BUT get a negative culture, it is very possible that the strep is in the adenoids. Just a thought. I agree that doctors are very quick to use other medications, some with more side effects than antibiotics, rather than just TRY a trial of antibiotics. Perhaps you could address it that way with your doc. Ask him/her to give you a reason why it would be harmful to just do a trial of Zithromax. I think he would be hard pressed to come up with a legitimate reason why you could not do a trial, given your child's strep history and abrupt start of tics. I read over most of your posts, back from last year also, and I am NOT trying to diagnose your child, but her history is extremely suspicious for PANDAS. Her history is very similiar to my daughter's when this all began right as she turned 5. Just another thought. How did today at the clinic go? Colleen

MyRose, I think you got your answer already, but strep is definitely a bacteria. Colleen

MyRose- I think it is crucial to rule out PANDAS 100% before concluding it is a non-PANDAS tic disorder, b/c if you don't, the child may be living with untreated strep. My suggestion about Zithromax, if you decide to try it, would be do most definitely do it for at least 10 days. My kids are doing well on daily Zith. I have not bought ity online and I would be leary of doing so b/c of not knowing if it is exactly the same as the pharmacists. I have heard stories about people making lots of $$ selling fake pills. One way to try to get it if you can't get a physician to prescribe it is to try to get it from a walk-in clinic. Tell them you get ear infections or strep or sinus infections and do not usually test positive, but always respond well to Zithromax. You may be able to get it that way. I think it is such a shame that any parent would have to go through this to just get a short term medication that is proven successful just b/c the physicina doesn't think it may work. I think trying every avenue is the best for your child, to make sure 100% that you know what you are dealing with. Good luck! Colleen

KimDel- I just posted a comment on this thread about the peeling hands, but then went back and read your initial post. Your son was on 5 days of Zith, a week later peeling on hands with a positive strep, then was put on Amoxicillin. It very well may be that the Amoxicillin is not getting to the strep and he still has strep. This would definitely explain the peeling on his hands which could be from strep. The 5 days of Zithromax was probably not long enoughh to erradicate the strep. Would your doctor be willing to switch to Zithromax today? Colleen

KinDel- Hi. I just wanted to add that scarlett fever can cause peeling of the palms of the hands and soles of the feet. I know he is on antibiotics, but could the peeling be related to scarlet fever? Colleen

Bronxmom- I had similiar experiences with my two oldest children post tonsillectomy and adenoidectomy. After a period of time (1 1/2 years with my oldest, less with my other child) the strep came back and Amoxicillin was very ineffective. I tend to think, based on his symptoms, that he has strep lurking somewhere. Would your doctor be willing to do Zithromax for maybe 10 days, THEN switch to Cefdinir? I would be concerned that if there is any intracellular strep, it would be best to dose with Zith first, then OK to swich to Cefdinir. The comment your doctor made was very unproffessional and so uncalled for, but I know you don't want to switch doctors at this point, I just had to vent about the inappropriateness of the comment. I bet his wife would not be happy to hear that comment!! Colleen

Kathy, The "treatment dose" for strep is as high as 12mg/kg of body weight, which would be 490mg for a 90 lb. child. Most doctors routinely give that size child 250mg as a treatment dose, which is usually high enough, BUT, sometimes they need the full 12mg/kg. My sister's pediatrician, who is very conservative and will NOT give her Zithromax prophylactically, but will give it to her when her kids have strep (They are PANDAS also) insists that even in a 65 lb. child, the treatment dose for strep should be 500mg. I have researched this to death and cannot find anything on the Internet to support this, but this doctor says it is relatively new research. Given that, maybe your child needs a short course of a higher dose and then you could bump it back down to 250 per day. Colleen

Kathy- I am sorry to hear about your son. How much does he weigh and what is his daily Zithromax dose? Colleen

Madhu- I have a 6 yo (weighs about 50 lb.) and an 8 yo (weighs 65 lb.) taking 250mg of Zithromaz per day since Oct. 2008. You mentioned a possible tonsillectomy- will they remove the adenoids also? Strep can hide in the adenoids, perhaps that is why the throat culture is negative. Colleen

madhu- We have not done IVIG. Colleen

I believe the reason my 12 1/2 yo (PANDAS began at age 5) has much worse PANDAS than my younger children is due to the fact that she received all vaccines required at the time (she was born in 1996) except for the 5 year old MMR booster. My younger 3 children have only received polio. I did everything the same with all of them, except for the vaccines. BTW, I was wondering if anyone watched Law and Order this past Tuesday. I was literally disgusted me b/c there was a mom who did not get MMR for her son, he contracted measles and did fine with recovering, apparently infected an 11 month old ,who died. The thing that made me so mad was that they called the mother who did not get MMR a murderer, over and over again on the show and prosecuted her for murder. Colleen

Thank you to everyone for your responses. His pupils seem normal today. I am going to monitor them daily and see what happens. Colleen

Eamom- Everything you described makes sense as to why it is happening. I have seen little things here and there that really make me suspicious my kids have been exposed to strep (there is TONS of strep right now in their school), but b/c they are on Zithromax, I have (fingers crossed) not seen any major flareups. I am convinced and absolutely know, that without out the Zith, it would be a different story. My 3 oldest have been on it since Oct., but my 2 year old only twice, for 10 days this time and 3 weeks the other time. I wonder if he is getting it (a carrier perhaps) and exposing them to it OR are they just being exposed at school. My niece and nephew are visiting tomorrow and were both diagnosed with strep 6 days ago. One put on Amoxicillin, one on Keflex. I was 90% confident if they were still contagious, my kids would be safe b/c they are on Zith, now I am not so sure. Strep stinks, to put it lightly!! Colleen

I need help understanding why my children with PANDAS will have dilated pupils one day, the next day they don't, then two days later they are dilated again. It seems so random to me. I have posted here a lot, so I am probably repeating our history. My 3 oldest children are definitely PANDAS- not absolutely sure about my 2 1/2 year old son, but it looks like he may. He has has strep 3 times in the past year with no physical symptoms, just behavioral. Last Tuesday he woke with 103.5 temp, headache, sore throat. Rapid culture negative. Had them send out a 72 hour upper respiratory culture. Came back negative for strep, "normal" respiratory flora with heavy growth (his cultures always read heavy growth, so if anyone can shed light on that??) Because of our strep history and my strong suspicion that he has strep based on behaviors and abrupt onset of sleep apea (sleep apnea occured in my 2 oldest children whenever they had strep until they had their tonsils and adenoids removed) that my wonderful Nurse Practitioner gave me a script for Zithromax. He is on day 7 of Zithromax (we are doing 10 days) and is doing better, but still has the apnea, although it has definitely improved. He periodically has dilated pupils, but tonight they are so dilated I can barely see his iris. They are huge. I just don't understand why they could be dilated one day and not he next, then dilated again. Can anyone explain this to me? I know giving Ibuprofen can help, but I don't understand what is going on. If his basal ganglia is inflamed, how could the pupils go from regular size, to dilated, back to normal, so quickly. My sister's daughter is also PANDAS and she says some days her pupils are huge, some days they are normal. It sems that they wouyld be huge, then slowly go back to normal size, not jump around. Thanks so much for any input!!! Colleen

That is really scary, that our children ON Zithromax can have a ramp up of symptoms when just exposed to strep. I know if they are not on antibiotics and are just exposed to strep they can, but I ws feeling pretty safe that it would not happen while on Zith. EaMom- Did you increase your daughter's dose or just ait it out until your Augmentin kicked in? I am curious why they put you on Augmentin rather than Zith. Colleen

The problem with relying on titers is that sometimes the titers are normal even in the midst of a PANDAS flareup and they still respond to antibiotics. This has happened with two of my children. Had my physician based prescribing antibiotics on these titers, who knows what would have happened with my children. Instead, we treated with antibiotics based on their PANDAS symptoms and they improved. We are taught in health care that you must have abnormal titers with strep and that is just not so in every case. We are told that the throat culture must be positive to have strep and that is not so. I am frustrated after so many years of trying to explain to multiple physicians how PANDAS works in my children. Strep is not cut and dry as it is taught. Colleen

If the history and laboratory studies are negative, then no association can be identified and the patient does not have PANDAS. If they are positive, the patient should be followed over time. This is the problem I had with Dr. Fuhlbrigge's article. My children have had negative throat cultures during a flareup of PANDAS and when given antibiotics, they respond and their symptoms decrease. If the strep is elsewhere (sinuses, gut, skin) then the throat culture would be negative. I think statements like this increase the likelihood that some children will have untreated strep because physicians will be unwilling to treat based on the neg culture. Colleen

Deanna- Maybe your doctor got the NIMH study confused, b/c it was Zith 500mg/week, not penicillin. I agree, penicillin once per week would be very ineffective. Lismom- My kids have been on Zith since October, and fingers crossed, doing well. My 6 (50#), 8(70#), and 12 (120#)year old are on Zith 250 mg/day. When I see an increase in symptoms (their schools are full of strep cases- worse then ever, so they are constantly exposed to it) I increase the dose to 500mg for my 12 yo. I agree that it can take a few weeks to see a big improvement. Five days, in my opinion, is usually never enough in PAndas KIDS. I question whether five days is enough in non-PANDAS kids. Colleen

I wrote to Oprah show about two years ago, explaining PANDAS and pleading for them to consider doing a show, especially b/c it is still not widely known and kids are getting misdiagnosed. I never heard back and did not pursue it further. I would be glad to write to them again! Colleen

Here is the contact info if anyone wants to email this doctor. I just sent him an email- we will see if he responds. Dr. Robert C. Fulbrigge, MD, PhD Primary Office Location Children's Hospital Boston Division of Immunology 300 Longwood Avenue Fegan 6 Boston, MA 02115 Colleen

TMom- Yes. Ask for an upper respiratory culture and try to get them to run it for 72 hours. Some drs offices/labs say "we don't do 72 hours", but in reality they can and will if the physician orders it and you are assertive that you are paying for it and want it grown out that extra day. It was Dr. Swedo who told me to always insist it be grown out for 72 hours, but, of course, the NIMH web site does not reflect that. AmySLP, Thank you for the cardiac info! Colleen

Once again, physicians putting out incorrect and damaging information. I don't understand why a physician can't comprehend that you can get a negative throat culture AND still have strep. It is basic knowledge that strep lives in many other areas of the body. I am in the process of sending that physician an email about this. I get so mad when I read this incorrect info that will cause a parent ot think their child does not have PANDAS when they really do and the family suffers greatly b/c of it. The way I deal with that anger is to send emails directly to the different physicians explaining why they are so very wrong and giving them the correct information. I will post if I get a response from him. I think it takes all of us calling these docotors on their ignorance when it comes to spewing out misinformation. Maybe, a little at a time, we will change their thinking! Colleen