colleenrn

Did you do a culture or rapid? Do you know how long they grew out the culture? When he had strep in Oct., what was he on, how much, and for how long. Sometimes the antibiotics and/or doses kids are given is not sufficient to clear the strep. My children have PANDAS and so do my sister's children. It is so unfortunate that your ped does not believe in PANDAS. This is what I would do in your situation. Get him on antibiotics (not amox/pen) for 2 weeks at a treatment dose. Then observe for improvements. His titers are high. The throat is just one of the multitude of places where strep can hide. Does he have any (at all) skin changes? Maybe not your "typical" impetigo, but anything similiar? Does he have any signs of redness around his anus? That is applace strep likes to live. Tghen yu have the gut, which you could test his stool for strep. Perhaps b/c your husband is an MD, he could call Dr Trifiletti himself for guidance. Colleen

If you have EBV and take amoxicillin or Augmentin, it causes hives. Is your daughter on any abx now? Prior to the hives appearing? Colleen

MY kids are on Zith 250/day and have beeen for 1 1/2 years. There have been times (ear infections) when we added Augmentin or omnicef, but only for 10 days. I think I saw some improvement, but they were not really in a flareup at the time. Months ago, my pharmacist gave me a weird look and told me that it is "not typical" to take Zithromax everyday. I responded, "well, they are taking for something that is also not typical". No one has said anything since, but I have the fear that the antibiotic police are going to one day stop them from filling my prescription. Colleen

I would definitely do a throat culture b/c so many times children with PANDAS have such atypical symptoms. My kids get rashes with strep (not hives but also not the typical scarlatinaform rash). The doctor is so wrong about having to show symptoms with strep. None of my kids have any physical symptoms with strep. There is so much strep in your daughter's class that it is very possible that is what you are dealing with. Good luck! Colleen

Yes. I want to do a burst with one of my children, but b/c our family has been almost constantly sick since September, I am afraid to lower his immune system even more. I may try it as soon as he is out for the summer. My sister has done several bursts and longer periods (3-4 weeks) of pred with 2 of her kids and they did not get sick, so that is encouraging. Colleen

Make sure they vigourously swab both tonsils and sides of throat. There is a 20% one tonsil will swab positive and the other not, so very important they get both. Grow it for a full 72 hours. Good luck! AND, you are not dumb! This disorder can be overwhelming, so it is impossible to think of everything. That is why I love this forum!! Colleen

I just wanted to add to make sure they get a really good sample when they swab everyone. My son recently had a positive strep on a rapid test (unusual for my kids b/c rapids are usually negative) but we decided to also do a culture just to see if there were any other streps besides A and the culture came back negative. B/c we know he had strep based on the rapid, our conclusion was that the nurse did not get a good sample on the swab. The nurse, before I could say "wait, do them separately", did both swabs at the same time. This is not good because only half of the swab touched the tonsils/throat. Ask them to also gropw them out for a full 72 hours. You may want to run the test as an upper respiratory culture (shows more pathogens) instead of the regular strep culture looking for strep A. Good luck! Colleen

To test for all strains of strep, get the swab run as an upper respiratory culture instead of just a throat culture. Colleen

Alderliefest, Have you ever added Rifampin to another antibiotic to attempt to clear carriage? The rifampin is sometimes needed if other antibiotics are not successful. Colleen

I did not yet vote in the poll b/c I am not sure how to answer. My oldest who is a girl had an overnight onset for sure! My three youngest, all boys, had a more gradual onset. Colleen

Lynn, Thank you for doing this! I would be willing to help. I have 4 children with PANDAS and their symptoms manifest very differently. This may be good to point out that even with siblings, PANDAS can manifest in diffrent ways. I will email you. One thing I am really hoping gets discussed, but this would probably be Dr. T's portion, is that physicians have an understanding that strep is not black and white. They are taught that if you have strep you will have a rise in strep antibodies, so they rule out PANDAS based on this. I know so many children who go to their pediatrician b/c their parents are pretty sure they have strep, they get a negative rapid test and are told it is only viral. They go back to school with strep that was not detected and a week later, half the class has strep. Anyway, I just wish/hope this would get cleared up. Colleen

We live in Virginia. I was really surprised when I started finding ticks on my kids in April last year. Well, my son came home today from school and said a little girl in his class found a tiny (assuming deer tick) tick attached to her today. This is definitely early in the year to find them. Yikes! Colleen

I hope every parent who has ever come in contact with a physician who doesn't "believe" in Pandas, says it is "controversial", or even worse, that you are "crazy" reads Dr T's post above this one (I still can't figure out how to put someone else's posts in quotes- sorry) You renew my faith in medicine and the realization that although we feel alone sometimes, we really are not alone. We have a lot of good guys on our side and we will figure this all out. That I am confident of, just hope it is sooner than later! Thank you. Colleen

Debbie, I don't have an explanation, but I am wondering if that is what is going on with my children. They were a mess in October 2008 when we started them on daily Zithromax. It was like MAGIC b/c within a week they were 99.9% better. They have had ups and downs over the past year, but now it almost seems to me, in the past 2 months, that the Zith is not working and I wonder if it could be a strain of strep resistant to Zithromax. Could their liitle bodies have built up a resistance? Where they exposed to a resistant strain? I have not done strep titers in a long time b/c I felt so comfortable with the protection they were getting with the Zith. Now I am second guessing everything. I am very confused, but I know something is so different with them and I am so worried. Are you thinking of trying another antibiotic? I am absolutely terrified of taking them off Zithromax, but not sure if something else would work better. Colleen

Hi. How much does he weigh, what antibiotic is he on, and what dose? What was the timeline for his increase from 960 to 1360? Colleen

What is the best way to be tested for mycoplasma pneumo? What are the specific tests? Something is going on with my kids. They have been on Zith for over a year and were doing pretty well until they were heavily exposed to strep on several occasions. Now I don't know what is going on with them. If mycoplasma pneumo is even a remote possibility, I need to rule it out. Thanks so much for any info! Colleen

Oh my gosh. He doesn't believe in PANDAS, he doesn't believe in late stage Lyme's, but what he does believe is that "something is wrong with your family"....Find out when he is on call and try to avoid those days!! You mentioned that your son that does not have PANDAS recently had strep. Did you see any changes whatsoever in him when he had strep? Does anyone have any thoughts on why some families have all their children affected by PANDAS and others only have one or two out of their children with PANDAS?? I really believe there has to be a genetic component b/c I was a PANDAS child/adolescent, all 4 of my children have PANDAS, and at least two of my sister's children have it. Does anyone think that there is a genetic component in some families, but not in others? I am SO waiting for any genetic study to subject my entire family to. Dr. Swedo told me last year she wanted to try to do something with genetics, but nothing so far. We are willing to be guinea pigs if it will help figure out this dreaded disorder for our precious children. TIA for any thoughts! Colleen

PANDASkid, Hi. If you wouldn't mind, I am wondering how old you are, how much you weigh, and what dosing of the different antibiotics you were on. I am so sorry you are going through this, but so glad you posted. Hang in there! Colleen

Dr T, We would also be willing participate in anything that would facilitate your efforts! Colleen

Yes, for sure you can get strep while on Amoxicillin, but what is more likely is that the strep was never erradicated by the amox. If the strep is intracellular, amoxicillin will not be able to penetrate in order to reach it. That is why they then attempt to use Augmentin b/c it has potassium cluvulanate added to help with that problem, however, even augmentin has a hard time reaching intracellular strep. Cephalosporins (omnicef, keflex) have a better chance at getting it, but not a guarantee. That is why Zithromax is sometimnes one of the best choices. It can penetrate the tissues and reach the strep. The redness you are describing really sounds like a strep infection. This was the case with my daughter in the first 4-6 months of PANDAS. I have all of her labs and recently was looking at them. She was put on Amox in Jan for strep, had strep 3 weeks later, again put on amox, had it 3 weeks later, again amox, had strep again the next month, this time Augmentin. After that we never used amox again. Some physicians will tell you that if your child is on an antibiotic, they can't get an infection, but this is just not true. Can you have her swabbed today or would your doctor be willing to call you in a differnt prescription? Colleen

I know someone whose son has been extremely ill with schizophrenia for 20 years. He is a long time friend of my dad and I was listening to him talk about his son. I satrted wondering in my "Mommy PANDA head", "gee, I wonder if it could be at all related to strep", b/c I have been on that "kick" for many a year. He then floored me when he casually mentioned that his son had "lots of illnesses" when it started. Physical and bacterial illnesses. Coincidence? I don't think so, but we will see, hopefully sooner than later. Colleen

That is very interesting. I actually believe that some day we will find that bacteria/viruses/etc.. are the main causes of all psychiatric illnesses. Any thoughts? Colleen

Would the lyme's tests still be accurate after a child being on daily Zithromax for over a year? Any info on that would be greatly appreciated! We live in Virginia on a farm and I pull ticks off my children almost on a daily basis from around May to October. I have even found them imbedded in 3 of my 4 children when they were less than a year old. My neighbor who keeps his horses on our farm was diagnosed with Lyme's 2 years ago, so I know it is here. TIA for any info! Colleen

Was your child on any antibiotics prior to finding out the myco pneumo? If my kids on on daily zithromax, do they still need to be tested for it? I posted that question to Dr. T on his new site, but he has not answered it. Has anyone on zithromax still tested positive for mycoplasma pneumo? TIA! Colleen

From what I have been reading, if the GBS is in the urine, that means it has colonized at a high enough rate in order for it to be in the urine. I am understanding this incorrectly? I know adults can carry it in different places in their bodies, but a baby? I also read that in a healthy uncompromised person it probably is benign, but it can make an immunocompromised person very ill. I think all of my children are immunocompromised due to their frequent illnesses, strep and viral. Thanks! Colleen