peglem

Well, I think if this was the doctor's own child, he would be seeking an explanation. I would not be satisfied with the doctor's best "guess" for why this is happening and I can tell you aren't satisfied either. I'd request to see a neurologist. Just because its not caused by a brain tumor, doesn't mean its benign. W/O proof that it's a tic, I'd be looking to rule out possible causes, especially dangerous ones. I think there are a lot of things it could be, incluing a strange tic, but I'd sure want to make sure all avnues were explored. I know with choreatic movements, often the irregular, uncontrolled movements are triggered by attempts at purposeful movement. And I guess this could happen with vocal chord muscles as well. Stll, to assume this is what's going on w/o further investigation...I wouldn't be willing to stand for that.

It sounds to me like the doctor is frustrated that there isn't more guidance and research on what to do about PANDAS. But think he gave a pretty good summary, though it was a bit blunt. Is he refusing to try to treat, or just saying these are the options and he thinks Keflex is your best bet? I actually appreciate it when doctors give me straight talk like that. I think the principal acted very unprofessionally in telling you about the parent complaints- that's his problem to deal with, not yours. Your only responsibility is to make sure your daughter gets what she needs to be successful at school. I don't see how sharing that information is going to do anybody any good. At the same time, the other parents don't have any idea what is going on with your daughter-they just hear about behaviors, so I can see them being upset. Its illegal for the school to share any personal or medical information about your child with the other parents. My concern here would be that the other children don't start picking on Gaby because of her problems-this would make things worse.

I think that sydenham's and PANDAS are close enough that PANDAS should be considered a variant of Sydenham's. It was my understanding that, while OCD is not part of the dx criteria for Sydenham's, it has been observed as a very common occurrance. My thinking is that if PANDAS was included under Sydenham's Chorea, it would be more easily accepted by the medical establishment since SC's existence has already been well established (although not well reseached or understood). Much of Swedo's research was based on what is known about Sydenham's.

I did ask for an EEG because I wanted to be sure that it wasn't any seizure activity, but they wouldn't do it in the ER. It was after lunch and I certainly thought about everything she ate, but I bring her lunch from Whole Foods every day and make sure it is absolutely gluten free/casein free, a fresh pear, some juice (very low in sugar) - nothing that should have upset her. Today she occasionally pointed at the air and told something to stop or go away (the white lights or dots), but it didn't happen non-stop like yesterday. I didn't give her any inositol or B6 today or lecithin. Not sure if that has anything to do with anything, but I want to go back to just all the vitamins she was on before and nothing new for a while until I figure out what's going on. I still wonder if she wasn't exposed to some strep at school. I'll try to have her go back tommorrow and see what happens. Thanks for your support. Oh, I meant to get the doctor to order a VEEG. You may have to hook her up for several days to get a reading during one of these episodes. Its a pain to do (we did one for 8 days). But, getting a reading during an episode is the only way to find out if the episode is a seizure. I wish I could help you more...I know how terrifying it is to see this happening to your child and not know what's causing it.

I don't want to scare you, but if I were you, I'd insist on a VEEG and try to catch one of these episodes on it. Something scary is happening to her all of a sudden and I'd want to see if its a seizure. Another thought-was this after lunch? Could there be a food trigger? I feel for you- this is scary business.

cefdinir is the same as omnicef.

They always swab both q-tips at the same time in my daughter-just in case of a neg. on the rapid. I don't think they'd get a second shot at it otherwise. I've never had the culture come back positive when the rapid was neg., but I know it happens. You only need to culture if the rapid comes up neg. I thought it was routine to send a sample for culture in that case, but would make sure they know you want it done.

I'd get him strep tested asap. If his tics are associated with the strep, you want to establish a connection between the strep and outbreaks of tics. Many of our PANDAS kids do not have typical strep symptoms.

Oh, wait, sorry! Misread the 2nd one as antiDnase.. So, after reading more carefully, I think they are the same- the first one just calls it a titer and the 2nd calls it an antibody (Ab).

Could have been regular old yeast w/o the biofilm-sure. I don't know about the dye, no experience with that. But, if you had the same experience w/ the plain white pill...I was trying to figure out why zith, in particular, and not other antibiotics could cause this reaction. Or was that somebody else- I think I'm too tired to post.

Because biofilms have a protective coating, the microrganisms w/in them are not subject to detection-only the bacteria/yeast outside of the outer sheild can be detected (including by the immune system). I believe most biofilms are multi-microbial, including bacteria, yeast and fungi. Let me see if I can find the thread where this was discussed, and I'll link it. Here it is: http://www.latitudes.org/forums/index.php?...&hl=biofilm

Well, its a judgement call. In order to confirm PANDAS you need to establish a pattern of symptom exacerbation (behaviors are symptoms) w/ a temporal relationship to strep infections. So you may want to hold off on the prophilactics until a pattern has been established. But, don't wait for typical strep throat symptoms to appear (sore throat, fever) to get strep testing done. Test as soon as you see an increase in behaviors, unless, of course typical strep symptoms appear before the behavioral symptoms. That's what I would do. BUT, this is your child, not mine. Some people do not see behavioral symptoms until several weeks after strep infection (especially I think if you're still in early PANDAS) so by that time your child may test negative, although, in that case you could run titer checks to see if they've gone up from last time. My child's titers were never high, even with beaucoup positive swabs, but it sounds like your child is making the titers. Is the doctor willing to give you prophilactic antibiotics at this point? I think there is wide variability in response times to the antibiotics- I've seen magical improvements w/ zith just 2 hours after the 1st dose. I don't want to complicate this for you, but if the strep has formed biofilm complexes, it likely has yeast w/in the biofilm as well and the reaction you saw to the zith could also have been yeast released from the biofilm. Zith is one of the few antibiotics that is known to penetrate biofilms (also Clarithromycin).

Nope-2 different tests

Ooh, here's a nice little article comparing zith, clarith and eryth. http://www.emedexpert.com/compare/macrolides.shtml

My guess would be that they work similarly. I did a quick check and clarith has been shown to destroy biofilms. I wonder what the difference between them is?

Okay, I thought you meant visual, but with so many of our kiddos having yeast problems, could have been BM's.

Floaters? I'm thinking of a few things you could mean...

I did have my child's vitamin D level checked and it came back almost smack dab in the middle of the normal range. What I have been unable to find out is if the range is set for "neccessary to avoid illness" or "optimal health." I haven't supplemented with D (other than what is in her multivit). We live in the desert (Phoenix), but we have a tendancy to hide from the sun in the summertime because its so harsh. 110 degrees is too dang hot no matter how dry it is!

This and so many things you guys say about your children's PANDAS behaviors is so similar to my daughter. It really makes me wonder how much of her behaviors can be attributed to autism and how much to PANDAS? I think her strep went untreated for about 6 years...and all that time, as she got worse and worse, it was all chalked up to autism. I suppose it could be possible that the autism is caused entirely by strep/PANDAS.

When she's in strip mode (and it doesn't happen all the time) she strips her clothes off frequently and anytime. It doesn't seem to be related to the weather or temperature, maybe its sensory (although I hate to assume, I've been wrong too often). She'll keep clothes on for about 5 minutes when she's in strip mode and after 5 or 6 times of redressing her, we usually give up and let her go nude...so no pics if she melts down nude. You got me thinking though- is this part of her PANDAS? It was much worse before her strep was under control. Guess it could be an OCD thing.

What I really need them to see is the rages. Unfortunately, I'm too busy dealing with them to film them or get someone to film them. She also strips off her clothing so, I really don't want that on film! But, once she had a rage in the doctors office he really understood what I meant. She'd had lesser behaviors (not so severe to me) before that and he kept asking, "Is this what you mean? Does she do this alot?" and I'd answer that this is not bad and we get way worse. It really took 1st hand observation for him to get it. So, I think filming is a great idea, if you can get it.

I was curious, so I looked up Bactrim. Found this: http://www.rxlist.com/bactrim-drug.htm You may be especially interested in page 4. It says it is not useful for GABHS infections. But also, it cautions that it can cause folic acid deficiency, so I'd supplement with that while on bactrim.

My daughter's pediatrician checks her liver function every 6 months because zith builds up in tissues, and is cleared through the liver. He has her on a rather strange schedule for the zith (due to his safety concerns). She takes 250mg/day for 5 days, then none for 7 days, in order to allow it to clear from her system. Then we repeat that cycle.... But another thing to watch out for with antibiotic treatment, even if you are dealing with the yeast issues, is clostridia. That's another bad gut bacteria that seems to not be wiped out by antibiotics too well. It produces neurotoxins. The thing that helps with that is s. boulardii, which is a beneficial gut yeast. Still, its unclear to me if antiyeast treatments kill the boulardii. Besides the antibiotic, I wanted to mention that I have pretty extensive layman experience as far as psychiatric treatments go. If you have a child with rage episodes try to avoid anything anticholinergic. This would definately include all antipsychotics (seems like they all want to give risperdal these days). Some ssri's also have anticholinergic properties, as do antihistamines. (benedril triggers rages in my daughter). What has helped my daughter immensely with rages (and we'd tried many, many things) is lamictal, which was prescribed for seizures, but is used also off label for mood stabilizing. Anyway, it not only has reduced seizures, but really has helped immensely in reducing rages. Of course everybody reacts very differently to these drugs and most of them were tried before we even knew about the strep problems... I'm not an advocate of psychiatry, believe me, but I know there are times, at least short term where your child really needs some relief. My daughter was very miserable (and me too) for years- its actually emotionally painful for me to see any photographs taken of her during that time-like they all are screaming, "Mommy, help me!" Based on my experience, if you can find something to help your child get through this until they are healthy enough to deal with it, its worth it. Yes, I wish I could have found natural stuff to help her, and in fact I do use some, its just not enough...and a lot of the psych meds either did nothing or made things worse, but I feel bad for her being so miserable for so long before I found something that worked and I began to get so wary of meds that it took me longer to find something and get to the right dosage just because I was sooo hesitant to try again.

But, see, I don't even think its a matter of misdiagnosis. The autism "dx" is really just saying a certain set of behaviors has been observed in this person. So, it seems to me the real dx would be the thing that is causing the behaviors...So, if my daughter has PANDAS, a metabolic disorder, a genetic disorder, whatever....she still manifests as autistic because she has those behaviors. Honestly, the whole autism dx is messy business. I prefer the way autism is defined by the RDI (relationship development intervention) people. They identify it as developmental deficits in 5 core areas- and they have a way to address and treat those deficits. Thanks for the clarification on what Sweedo was saying...that sounds about right. I hope I get a chance to watch the whole presentation...I seldom get a whole hour to myself here.

I haven't had a chance yet to watch the presentation (sure wish I could just get a transcript). But, PANDAS, is not considered a dx and has no dxcode. That's one of the reasons its hard to get doctors to diagnose and treat it- they have to make a treatment plan based on their dx. But, it is a subgroup of people who can be dx'd with OCD/tic disorder. I'm not sure if she referred to it as a subgroup of autism or not (she was speaking at an autism conference, no?). My personal opinion is that children who contract PANDAS in infancy or early childhood may qualify for an autism dx because of the effect it has on sensory processing and at that point in development OCD would look alot like stereotypical behavior or self stim. I also think PANDAS problems would interfere enough with normal development that there would likely be some developmental delays. Frankly, a lot of the PANDAS behaviors I read about on this board are exactly what happens frequently in autism. (my daughter is pretty severely autistic and we found out she has PANDAS as well- which came 1st?) Also, researchers at the MINDS institute have found immune system abnormalities in autism. As far as placing PANDAS on the autism spectrum, I'd think we'd be much better off if PANDAS was given its own dx code or called atypical syndeham's. The trouble with the autism dx, is that it comes with SOOOOOOO many preconcieved notions and, being as the criteria for autism was invented by psychiatrists...well, hmmm, I'm having trouble explaining what I mean, but, Its really tough to get medical treatment for autism- there are these ideas out there that it is a pschiatric condition (slowly changing) of unknown cause and no cure or treatment. They don't generally try to find what's causing these strange, bizarre behaviors in your child and they assume that everything that happens to your child is the result of or attributable to the autism. Educationally the predjudices are pretty prevalent as well and most educators (even special ed people, who are perhaps worse because they think they've been trained to deal with it and know better than parents) see your child has unable to achieve (again because of the autism) and they have a built in excuse for why they are unable to get your child to learn the things other children learn. I think if they were really trained-they should be able to teach autistic kids the same thing that other kids learn. So, I get your point about at least professionals recognize autism as a real disorder. But I think they started on the wrong end of the problem when they defined autism- as a set of behaviors. Sweedo is saying, "Hey, something is causing these behaviors and its not just one disorder, but many different causes that are manifested in similar ways." So, instead of studying the big Autism and trying to generalize the results to a bunch of people that they may or may not apply to, she wants to break it down into subgroups. Its about time. Parents of autistic kids have been saying for a long time that there seems to be a huge variety in what causes this (before doctors even considered looking for a cause). I've been frustrated by research that shows 40% of autistics show improvement w/ treatment x, 57% show improvement with treatment y, etc. So then, practitioners just try these treatments for all autistics...nonspecifically. I'm tired of trying treatments that don't work for my child!!! Furthermore, (sorry, didn't set out to write a diatibe on autism-but since we're on the subject...) since most doctors don't know what to do about autism, they're pretty quick to toss it over to psychiatry. Psychiatrists don't know what to do either, so they recommend all sorts of vile psych meds, completely guessing what might work AND since autistics have different causations, even if they are very successful with one, that same treatment is useless or damaging for others. Okay, I'm done now.