peglem

My daughter is 15. I don't know if zith is the only abx that gets inside cells. Last month her doctor prescribed a 10 day course of rifampin, along with augmentin. Rifampin is an antibiotic that goes intracellular and is usually used in conjunction with another abx, to treat tuberculosis. The results were good, but not something the pediatrician wanted to do long term, because it can be pretty quickly toxic to the liver. Although, tuberculosis patients are usually on it for several months. (with frequent liver enzymes checks). I'm not sure about augmentin...hopefully others will chime in about that.

The part I bolded above reminded me of something- How many of your PANDAS kids have "loose" joints? My daughter can become a wet noodle easily! It makes me wonder if the PANDAS affects connective tissue in the joints.

Just bumping for newbies!

She turned 8 in August. I started mine when I was about 13 yrs old. I think it was the 6th grade. Using that theory she'd have a good while more. But you never know right?! She weighs 75lbs so I'm thinking maybe I could give her 400 for a while?? Or does that sound too much? She said she was angry all day for no reason. I can tell she's on edge, she managed to get through her homework but just barely. Susan I have 3 daughters. What I've read is that it usually happens around 100 lbs. That's been true here. My oldest was a bit chunky when she was younger and started at age 10. (around 100 lbs). My second, when she was 13, again, around 100 lbs. Allie (my 3rd), just this year at age 15...finally got up around 100 lbs-and finally started at the end of the year.

Contact the airlines ahead of time, and tell them that you have a disabled child. They will help you board ahead of time, and help you make everything smoother. Dr. Latimer is fantastic. I know how you feel. Both my boys have PANDAS, and both are getting tremendously better, because of Dr. Latimer. It's been a very long haul...took 5 years to get diagnosed, and 6 to get treated (Dr. Latimer came on the scene!) I wish you lots of luck, and know that you can finally start breathing easier. This is encouraging to hear! I did contact the airlines and airport security today, and it seems like we'll get help and support from them. Anyway, I feel reassured!

We're coming from Phoenix. I looked at thrift shops (I do not want to buy a new winter coat that I'll only need for a week) but cannot find a warm coat. I'll look some more tomorrow. Our return flight will not be until the 14th...so not sure what that weather will be like. We'll have lots of Allie's favorite activities and snacks along with us. I think everything will be fine once we are airborne. Cute idea, having the flight attendants give presents!

We're staying in a hotel in Gaithersburg (something like that) about 8 miles from Latimer's office (near as I can tell from the internet). I don't know if we'll get in any sightseeing. Hard to bring Allie on anything like that, but we're bringing her older sister too, who is her paid habilitation/respite worker. My hub LOVES history stuff, so sure would be nice for him to get to do some of that. Most likely scenario is somebody stays with Allie at the hotel while we go out 2 at a time to do stuff.

When Allie was about 7, we went to a restaurant- she wanted to go....but when we got there her anxiety was thru the roof. I bent down and whispered that if she didn't settle down, we would have to leave. Boy, did that backfire on me! At that point she really wanted to leave...What she seemed to have heard me say is, "If you don't calm down then we CAN leave. I learned my lesson...no more ultimatums! Glad that worked for your daughter! This is really weird, but Allie is stuck on this MADTV version of Conjunction Junction: Dysfunction Junction. Her favorite line (or the one she's stuck on) is "I'm doping up kids with behavioral problems!" I KNOW its horrible, but singing that line can instantly snap her back from panic to happy. I'll be using that...

The blood test for strep is not actually a strep test. Its a test for antibodies to an exotoxin that strep excretes. It indicates a past strep infection only, and the nurse is right, those antibodies stay elevated long after the strep has gone. But, just one course of antibiotics does not necessarily eradicate the strep.

Maybe I can influence the reporters to write it up as "PANDAS girl and family get put off plane for unruly behavior!" Then I'll do the talk show circuit- we'll show everybody what PANDAS looks like when a child's had it most of their life! Okay...THAT IS NOT HAPPENING!!!!

We're flying out Wednesday morning for our Friday appointment. The airport/flight preparations are very stressful....please pray (if you believe in that sort of thing) for us, that getting through security and on the flight goes smoothly for us! I'm so nervous, but feel like finally we'll be able to start really treating and healing! I just don't want to make national headlines: "Autistic girl and family put off plane for unruly behavior!"

Hi, Rosalyn! Glad to see you made it over here! Worried Dad, I read a post from Roselyn at WEMOVE and directed her over here!

Hi! That sounds exactly like my daughter! She doesn't get any symptoms of strep other than behavior. The only times she tests neg. for strep is when she is on antibiotics, and sometimes she's tests positive even then. And my daughter has low ASO/AntiDnase titers as well. That suggests to me that your son may have intracellular strep, which means you need an antibiotic that will get at the bacteria inside the cell. Azithromycin seems to be what works best for my child. My daughter has autism...I'm not in denial about that, either, but understand the disclaimer-you've had those looks from professionals too, eh? The "poor-parent-just-cannot-accept" look? Well, here's what I think about that. Autism is, in short, abnormal childhood development. But, there must be something that has or is interfering with that development. It really bothers me that autism is considered a "diagnosis", when its really just a label given to symptoms of whatever is causing the abnormal development. I think, in our case, PANDAS is what caused the autistic SYMPTOMS.

I was one of the originals who was wiped as well... The OCD symptoms are the most problematic for us, but have a lot of abnormal movements as well: tics and some stuff that is too bizarre to classify as tics. My child has had raised ASO or Anti-DNAse B at some point? No My child is a canary for strep in the household (i.e., behavior changes when someone has strep) I don't think so...she has always tested positive when the behaviors start, and my other children get typical symptoms when they have strep.

Is this the thread you were looking for? http://www.latitudes.org/forums/index.php?...l=allergy+shots

I have noticed neg tests (when I knew my daughter was streppy- from behaviors) results when nurses have been too "gentle" with the swab. And we do have quite a tussle with getting the swab (if we don't, you can safely assume it will be negative). Anyway, I always tell the nurses that its okay if my child gags- if you're going to go to all this trouble to run the test, I want to make sure its really accurate.

I've never used the liquid, but the pills have always been once a day dosing for us. Zith is taken up by the tissues and has (if I remember right) @ a 60 hour 1/2 life. Most other antibiotics require more frequent dosing because they don't stay in the system at sufficient levels for a long period of time.

Here's an abstract that links cholinergic activity w/ dopamine 1 & 2 receptors: http://www.ncbi.nlm.nih.gov/pubmed/1897667...p;ordinalpos=68

I know exactly what you mean! My daughter is, I guess, a mixture- onset before age 3, Would fit neatly into type2 PANDAS, except her CamK score was upper SC range. Where would a strep A carrier with neg ASO/AntiDnase titers fit?

Just wanted to add the other immediate, but not sustained improvements we saw when starting bethanechol treatment were increased appetite and normal sleep patterns.

Kim, You may be interested as well, in this paper by Mary Megson: http://www.megson.com/readings/MedicalHypothesis.pdf My daughter has been on Bethanechol (urecholine) for a couple of years now. Its a muscarinic cholinergic agonist- mimics mAch. There are a few studies on its use to ameliorate the anticholinergic side effects of antipsychotic meds. What I have found is that when my daughter 1st goes on it (she's been off and back on 2x), we see immediate improvements in calmness, fine motor control and communication. These don't seem to be sustained though (and higher or more frequent dosing do not change that). I don't know if that's because of PANDAS exacerbations intervening or not. Last spring, I decided to try pulsing-1 week on, one week off. What we saw was problems with elevated blood sugar (not diabetic range, but possibly prediabetes-ruled out by endo) on the off weeks. What I was trying to do is replicate the effects we saw when we began the medication, but the BS rises scared me, so I have her back on it full time. Anyway, thought you might be interested. Also, the newer alzheimer meds are cholinesterase inhibiters-they reduce the enzyme that breaks synaptic Ach down into choline & acetic acid, in order to increase the time and amount of Ach in the synapse (the cholinergic version of inhibiting re-uptake). I did try a cholinesterase inhibiter with Allie-long ago- it made things worse instead of better. So, I think its the muscarinic side that we need to enhance-not the nicotinic side.

My understanding is that the tourettes she is talking about would be tics as a symptom of PANDAS. I may be wrong about that, and don't know why she called it tourettes syndrome, particularly since she didn't list OCD as well.

You'd think the symptoms would be enough proof. But, until I had this testing done...it was all theory. This test is still in the study stages, so not necessarily "proof" either. Yet, showing the pediatrician (who was already a believer in PANDAS and that my child was afflicted with it) the results gave him something to hang his hat on. The fact that he had something that showed my daughter really had anti-neuronal antibodies, reading the research about the development of the test, and talking to Dr. Cunningham about it, gave him the impetus to take action. All he knew before that was to try to avoid strep-prophylactic abx, remove tonsils...but that wasn't getting us very far. It also finally made a believer out of my husband...

Does your son know why he hits the dog? Can he tell you what happened in hindsight? Maybe you can work something out with your son- if he gets that impulse-he should do what to protect the dog? If your son doesn't know why this is happening, chances are good that he doesn't really want to hit the dog or be naughty, so maybe you and he can figure out someway to deal with it.

That is such a judgement call. You do not want him exposed to germs at the hospital, but you also want him manageable for whoever is in charge while you're at the hospital. Anyway this could be handled with just phone calls? Or with video cams?