peglem

Peg - Are you sure Augmentin will not treat intracellular strep? I was told that, because of the clauvonic (?spelling?) acd, it would go intracellular so long as in adequate dose and duration. Have I been misinformed? No, I'm not sure. It did not clear my daughter though.

Boy, sure wish I could come out there and give you a weekend off to have a vacation! I do get exactly where you are right now...so overwhelming that you're losing it yourself and then feeling so guilty because you know its the PANDAS and not your son acting that way. It sounds to me like your son is a strep carrier, which means that the strep is actually living INSIDE the cells. If that is the case (I'm not a doctor!), augmentin is the wrong abx. You need an abx that will go after the strep inside of cells- augmentin will only go after the stuff outside of cells. Zithromax gets intracellular strep, and you need it full strength over a long period of time, and possibly in combo with another abx (like augmentin). Sorry, but I have to let you know that most doctors consider strep carriage to be a benign condition since it is not causing a sore throat and other signs of illness. And most doctors are very hesitant to prescribe high dose zith or other abx over a long period of time, especially if signs of illness are not there. I don't know how to find the right doctor-that's what you need right now. I got blessed in stumbling upon our current pediatrician. The only suggestion is to find a DAN doctor or you may have better luck from a DO (doctor of osteopathy). They tend to listen better to patients and be more willing to investigate things. You have my prayers.

As a carrier, my daughter tested positive for strep w/o having an active infection. It really confuses doctors when that happens. A 5 day steroid burst improved things for as long as it lasted. She got sick immediately after the 5 days though. She did not test positive for strep at that time (she was on full strength abx), but the burst coincided with cutting molars and dental work and her first period...so I'm not sure what caused what.

I think SFmom's suggestion is good. Remember, these doctors (even though they are considered experts) are really pioneers in the field of PANDAS treatments, just like we are. They have more experience only because they have been willing to treat when others have not- but there is still much to be learned and discovered about this disorder.

I can't say why it happens...but it does seem to be common in PANDAS and most doctors (I told many for years about this symptom) just don't seem to know what to do with that information.

My daughter's pediatrician was kind of skeptical with PANDAS at 1st. He'd just never seen it before. But, after seeing the pattern of me repeatedly being able to know just from behavior that my daughter was positive for strep, he has become a believer and our biggest supporter. Sadly, he's not getting much help with this from the specialists he's sent us to. That pattern is important! That is exactly what happened with my daughter. She'd get a course of antibiotics, then 3-5 days after finishing, behaviors would flare and she'd test positive again. I hope you have a good experience with the ENT. The one we saw was the biggest j***a** about PANDAS. He was adamant that strep CANNOT cause behavior problems. Does your son have any "real" strep symptoms? Forgive me if you've already answered that question- I scanned the thread for it and didn't find it. We'll finally be seeing Dr. Latimer next week. We are praying that this will be the beginning of the home stretch for us!

peg, could you elaborate? are you saying that if the immune response is not adequate, that they could have some illness or even disease, but not show it? My daughter would test positive for strep all the time w/ NO symptoms, other than behaviors. No congestion, no swollen tonsils, no fever....the strep was there- the immune system was not mounting an attack. I asked a pediatrician (not her regular one) about it after 3 different specialists (ENT, rheumy, immuno) said she was "just a carrier"- I was so confused...I asked, "So, if the bacteria aren't causing an immune response, does that mean they aren't doing any damage?" He said, "no, they're still a problem." So, in our case, illness was only detected when the neurological behaviors showed up, but evidence of immune response was absent. I don't know if strepA was all she had- it was the only thing she was tested for.

And, if your child does not mount a vigorous immune response- you may not "see" illness at all. Most symptoms of illness-what you see, is caused by the immune response.

Got a lab slip faxed to me today... CBC W/Diff ASO DNASE Sed Rate CR-P Total IGG IGG Subclasses The Pediatrician offered a 14 day trail of Penicillin... not the drug of choice I should try to get Zith or Augmentin right? Is 14 days enough? Just my opinion, 14 days is not enough. If your child is yeast prone- augmentin is infamous for yeast. My child does best on zith- but at full dosage. Zith seems to be one that is prescribed for shorter periods of time. The usual is a 5 day course (the zpac) My daughter is coming down from exacerbation right now- we did 5 days at 500mg/day, then switched to 500mg every other day. At one point in our journey (several years ago), My daughter got an injection of penicillan. It worked for 10 days...then the strep came back. But my daughter most likely is a strep carrier. That makes a difference, because with strep carriage, you need an abx that will go intracellular.

Just so you don't feel alone...My daughter once broke the big living room window with her head, and once broke a window on the school bus with her head as well. She was not injured either time...but, sheesh! And, I know the "must get away to sob my heart out" drill, as well. That's okay, cry when you need to, this is heartbreaking and frustrating to deal with- not to mention very scary! Then, when you get sobbed out-make a plan. Even if you just get as far as 1 thing you're going to try- or 1 doctor you are going to contact. You need hope that things can improve (they will!). Come here as often as you need to. This is where you can get the support you need. It would be great if you could get a break from being the caregiver, but I know that's not always possible and is never possible as much as you need it.

With our experience w/ ENT and Immunologist- they do not prescribe the same type of antibiotic for sinus infection as they would for strep. And unfortunately, they are unable to tell what type of bacteria is in the sinuses by a CT. Is there a way to find out without surgery? That would be awesome!!! My son has already had one sinus surgery and the ENT wants to preform a very invasive surgery now- we decided against this. They can do a nasal swab to check for strep in sinuses.

We used regular augmentin with 10 days of rifampin- saw a nice little 3 days of good improvent at the end of that. Continued regular augmentin for another week, but saw regression w/o rifampin (and developed a stubborn yeast infection). Then added zith (500mg/day) to the augmentin for another 7 days. Stopped the augmentin (and finally got rid of the yeast) and have continued on 500mg zith, every other day. So far we're maintaining a stable improvement.

Well, I'm intrigued by that...not trying to grill you or demand proof. I just wanted to investigate it a little more. Frankly, I'm flabbergasted by how little information there seems to be on how the immune system is influenced by environmental factors...this is what worries me about vaccines, that they can't have foreseen possible negative consequences because they simply don't know. And yet, we are constantly officially assured that they are perfectly safe. Also, abx clearly have some influence on hormones (it is well known that abx can interfere with birth control pills, for instance), but there seems to be almost no research into how/why this influence occurs. And there seems to be indications that hormonal changes in a woman's cycle and pregnancy have consequences in the immune system as well- but, again, there is very little research there.

In my opinion....TS, OCD, ADHD, are all observable symptoms of an underlying disorder. PANDAS may be the underlying cause of these symptoms in some cases. There may be other things that cause these symptoms. I really think medical science needs to stop accepting these things as diagnosis and look for what's causing these symptoms. An analogy would be if a patient were diagnosed with chest pain. That's a symptom that can be caused by different things, but if you're a patient with chest pain, you're probably going to want the doctor to find out what is causing it before you are treated.

Where is that article from and is it based on research? I mean, is it followed by a list of research articles that support this conclusion?

I haven't heard that low IgG can be caused by antibiotic use, but I have wondered about it. But, I don't think antibiotics suppress the immune system, at least I have never heard that. My understanding is that abx impair bacterial reproduction or disable/weaken it in other ways so that the immune system is more able to get rid of it. My daughter's IgG levels were not checked until after quite a bit of antibiotic use (but not yet prophylactic), when we began to wonder why she always tested + when not on abx...and why her immune system was not ridding her of the strep, even with the help of abx. So I'm supposing IgG was already low before abx usage. When IgG was tested 2 years ago, for the 1st time...it was below normal range. When tested just 2 months ago (after being on prophylactic abx for over a year) it was even lower. The immunologist declares that its not a true immune deficiency or she'd be having trouble with being ill all the time, to the point of having to be hospitalized frequently. And he says she'd be having trouble with more than just strep.

Maybe the usually part is true. I think its based on temporary immunity passed on from the mother. But I've heard of many pediatrician who don't believe its even possible for infants to get strep.

When she was on augmentin, I was giving a probiotic capsule about once an hour + 5 or 6 yogurts a day. We still needed diflucan to finally get rid of the yeast though. I've never heard of too much probiotics....

I don't know how to tell for sure...w/ my daughter, when the vag yeast shows up, I know for sure- but you don't have that "luxury" w/ a boy. She has less yeast trouble with zith than w/ augmentin. Maybe because zith is just 1x/day and I can spend the rest of the day treating yeast. Augmentin always results in hard to battle yeast here. My experience has been that the rageys come from strep and the hyperhyper maniac giggling is from yeast. But I don't know that it presents the same in others.

Yogurt and probiotics, eaten/administered at least 2 hours after abx to replenish intestinal bacteria.

When my daughter gets super hyper, its usually yeast related.

The regression is while still on abx? Could it be related to yeast?

Merry Christmas to all! I feel like I have extended family in all of you! Wishing you all great blessings!

I'm not sure; quite possibly. I guess I could check with the dentist. He's always been a little behind in terms of the maturity of his mouth; he's still housing some of his baby teeth! Is there something about the cutting of the molars we should be aware of? With my child, any oral tissue damage amps up symptoms. Her ped and I think its because she's harboring intracellular strep in her epithelial cells, which is released with tissue damage: cutting teeth, dental surgury, T&A... And the adolescent teeth seem to come with the hormonal development. My daughter had a bad flare recently w/ a double whammy of cutting 4 molars and dental surgery...all timed with the onset of her 1st period. The worst flare of her whole life occurred following T&A surgery. Looking back, her worst times always were thought to be caused by teething pain...before we new about PANDAS, we thought she just had a terrible time with teething.

Not about hormones, but is he cutting his 12 year molars?