peglem

Change doctors. What is the rational for withholding treatment?

Allie has had 2 low dose IVIGs- less than .5g/kg. One was on 3/24 and she had the 2nd this last Tuesday. She's supposed to get them every 3 weeks. While I haven't seen any "OMG, she's cured!" results, I haven't had any ramping of symptoms, either. She was already doing pretty good w/ just the higher dose of abx, and has been maintaining steady progress. For the immediate future, I'm sticking with it. I may at some future time see about raising the dose. The problem is, there are not any published studies out there to bring in to a practitioner as evidence that higher dose is needed or that lower dose is ineffective. My daughter has IgG deficiency, so at least that problem is being addressed.

Well that explains what happened to my ds last week!! He as cavities that need to be refilled (that want to do caps but I just can't see the point for baby teeth) how do you deal with that? Are your kids normally on ABX when they go to the dentist? Brandy Yes, on abx. I deal with it the same as with other exacerbations. I only just put the pieces together last October when she had surgery for an abcess and then cut 4 molars at the same time. Erupting teeth have the same effect, so I know its not dental products causing problems at that point.

Looking back through my daughter's history, dental work always brought on exacerbations. I'm worried now, because she has an appt. next week for a cleaning/checkup. Her tonsilectomy did the same thing-that was the worse ever. I think its a matter of tissue damage releasing intracellular strep in our case, but that's supposition.

Low titers tell you nothing, rule out nothing, and make everything confusing. High titers confirm a previous, recent (w/in several months) strep infection. But either way, ASO is not the antibody that causes PANDAS, and the abx is not meant to treat the titers.

And please, always ask if you don't understand!

I didn't know you couldn't test for allergies while on abx... But, I've wondered the same thing about symptomless allergies. I know my daughter tested 2 years ago w/ IgE levels undetectable- and she tested neg for all allergies when we had testing done several years ago. I'm guessing because she doesn't have IgE activating mast cells- but does that mean she cannot be allergic?

I've been told if you don't get enough hydration w/ IVIG it can cause things like that, and asceptic meningitis, too.

Hi Peg, Like what? What else could it be???He is on the spectrum and has had a gizillion tests what else???? Melanie Well, I don't know! I often wonder if there is more going on with Allie, too. I can't remember everything you've done or tried, but it seems like you've tried and done nearly everything! I hope the omnicef helps.

Just my own little theory: I think that it is not uncommon for kids to get neurological "disruption" with strep (doctors got that "transient tics of childhood" idea from somewhere.) I think normally the immune system puts a halt to it and destroys the errant antibodies and prevents them from taking hold again. PANDAS kids' immune systems are not handling it properly- so they get it stronger, longer and unchecked. But, I don't know what goes wrong with the immune system that makes it not deal appropriately. I think school nurses should be allowed to do RSTs, just like they do lice checks. If there is a strep outbreak in a classroom, test all kids and staff from that, and sibling classrooms. Any positives should not be allowed to return to school until cleared by a physician. Maybe that's overkill, but I see so many going to great lengths to protect from exposure at home and then it gets picked up at school and the kids bring it home to share with the family. Its a never ending cycle.

This is what I wrote to explain on another post: So, they really don't sense someone else having strep, they are responding to the exposure they get from being around someone with a strep infection.

Did a search for you. This is on the tourettes board: http://www.latitudes.org/forums/index.php?...3&hl=mullan and this: http://www.latitudes.org/forums/index.php?...0&hl=mullan Hope that helps!

Melanie, Have you checked to see if there's more than PANDAS going on w/ your son? It just seems like nothing is working the way it should for him.

My sons Aso and AntiDNase were normal. He is having a throat culture today. What does it mean if it comes back positive. Would this confirm Pandas since he has all the symtoms. He absolutely has no symptoms right now of a cold, strep or anything else. Can carriers have Pandas. My PANDAS child is a carrier.

I've been there. I was also angry that I felt so angry all the time.

But I wonder if they consider carriers as false positive, since they don't actually have an infection? I just don't see how the test could detect strep that isn't there?

Have you tried a steroid burst for the 2yo? I think you're right to get on this quickly there is some very crucial child development going on at 2 years old and you don't want this crap fouling that up!

I'm wondering how they would use that to determine if she was a carrier? And, what did they decide about carrier status for her? The doctor told me that if dd was a strep carrier that she would ALWAYS come out positive on a throat culture. Since dd kept getting peri-anal strep, I kept getting strep throat and my son had just had his 3rd case of strep throat (by age 3) and twice didn't show symptoms, they figured someone in the family was a carrier. My husband, son, daughter and I were all swabbed at the time, and only dd's rapid came up positive. Then when her culture came up negative, they couldn't figure out what happened. They decided to swab both her throat and bottom again after the course of abx, and both were negative...so they told us that she was not a carrier. Recently I've seen posts saying that ASO and DNase-B tests are the best way to determine a carrier, and I'm seriously considering brining everyone in for that. Thanks for that! My daughter (who we believe is or was a carrier- I will not take her off abx to find out) tested neg for strep sometimes. All the specialists seemed to think she was a carrier because she tested positive while she was asymptomatic. She never got an "infection" by the time I actually got them to test for strep, but she tested positive whenever she wasn't on abx (and a few times when she was). Titers were always low-

I'm wondering how they would use that to determine if she was a carrier? And, what did they decide about carrier status for her?

I'm interested in some kind of analogy that would make things clearer as well. But I have another question- Is CamKII a switch for the G-protein pathways that Mary Megson talks about in this paper? http://www.megson.com/readings/MedicalHypothesis.pdf

My guess would be that the swab was not done well enough, too.

Thank you, I'm on the phone with his doctor they are telling me to take him to the ER. We are walking out the door/ Well, I sure hope they are able to give you some answers, and then I hope they have a solution too!

Judy, I was able to email you w/ the docs info.

My 15 yo daughter (nonverbal, autistic and very dysfunctional) improved quite a bit on high dose zithro has just started very low dose IVIG every 3 weeks for immune deficiency. We get the second one tomorrow. The 1st week after the 1st time, she got a little worse (but it was subtle), but was back to as well as she had been doing the second week. I don't know if this is going to do any good at that dose, but I'm going to give it a try for a while and if we do not see continued improvement, we'll talk to the immuno about raising the dose. After hearing stories of initial exacerbation at the higher dose...I'm hesitant. Alle's bad is very, very bad.

Not exactly Kingman, but I know of a very good pediatrician in West Phoenix. Tried to PM you, but it said your PM was disabled.