Phasmid

Shouldn't cause any kind of problem... in our experience.

Thanks. uh... I think... I ... no longer know... what to do.... I'll go back to setting up my mom's Kindle and I just won't think about it anymore... until they send me ANOTHER letter.

Yup, both A and B are circulating here, and I think a good % of the school has it. This is DAY 5 of fever!!!!!!!!!!! Finally, down to 100.

Hey Fixit! Been thinking about you. Hope things are okay there. On the flip side of the "vaccines" coin, my poor boy is in bed, since Monday, because I chose not to vaccinate for flu. He's now getting the flu "pink eye" and really scared that he's getting worse. Fever is finally down, but the cough is there and basic feeling horrible. The thought of him getting whooping cough now, should he be exposed here, gosh, that's a tough decision. Is there REALLY a recommendation to avoid immunizations within 6 months of IVIG?

NO... not something else to worry about! Strep was at school according to school staff who called me today. So, maybe. But doc says influenza A and B are going around. How would I know??? He's been on azithromycin, so not likely strep, is it? Thanks for saying "hello" but I don't live in Palos Verdes anymore. We moved up to central coast (san luis obispo area) last July. Hubby is still down in LA- long story... Thanks for mentioning Kawasaki. Do older kids get that too?

He's had a fever since Monday evening. Yesterday it went slightly over 104! Today, it is down to 101-102, but he developed a red conjuctiva- which scares me, as that is his bad eye and there's lots of inflammation there. Mostly in the corner, but his eyes are bloodshot, which I know can happen with fever. When would you be worried about it? There is no pain. Just red. What's it from? He's only on azithromycin, but I have been giving vitamins and he had one big dose of zinc last night only.

Thanks all. Just heard from doc who said he SHOULD get the vaccination. Says it would not be a problem with his status. Hmmmm.... On another note... I AM LOSING THE DOCTOR I JUST FOUND!!!!!! HE IS TAKING A POSITION AT STANFORD!!! Someone else here sees Dr. M. at UCLA- who again? Well, now what? I told him I guess it just means I drive 4 hours north to SF, instead of 4 hours south to L.A. But, seeing as I just got him established with a pediatrician who is PANDAS believer, maybe just do everything locally!

Anybody have information on whether this is safe or not? I don't really want to do any immunization. School says he has to have the booster (anytime after 7th birthday, and i have checked- didn't have).

http://mdheal.org/articles/word2/drugsupplementinteractions2.htm Dr. Leo Galland is my favorite!

Here's a twist! A quote where the tables are turned (I bet I am the ONLY one here who can tell THIS one!) Statement by psychiatrist whom I consulted at the very start: "Gosh, this sounds like PANDAS. There is quite a bit of evidence for this." Stupid Comment by ME in 2004: "No, not PANDAS; I have read the studies, and the data just isn't there."

With the most recent issue of re-reading (rechecking ocd) and the stutter while reading aloud (stopped after IVIG), our immunologist got very nervous and wanted a neurology consult to rule out more serious stuff. I am not too worried, now that I see it goes away with infusion, but I made an appointment so I am following the wishes of our doc. My question is: Has your neurologist (if supportive of the PANDAS dx) offered anything in terms of imaging (MRI) or other diagnostics? He had EEG when all this started which was of course normal. Any meds they tend to push?

Our original trigger was definitely strep and we did not have a pet at all at the time.

I hadn't caught it the first time around, so thanks for posting!

It may have helped my son. Sleep disturbance was one the worst problems he dealt with. He had never slept through the night starting at age 6- constant waking with terrors, anxiety, etc. Impossible to say whether Clostridium or Strep- it's a PANDAS thing for sure though.

Well, it sure sounds like it especially with confirmed strep problem. The echolalia can be part of it- my son has it, and others here too. If I am not mistaken, I believe most docs specializing in PANDAS treatment offer a 30 day DAILY azithromycin regimen, from 250mg. to 500mg. per day. Azithromycin works miracles for my son. About the probiotics- several of us, my son included, have found that adding one of these super-concentrated, super-selected monoculture probiotics causes symptoms to increase. My doc knows of this and has explained that it may indeed be a problem to an already overwhelmed immune response. So, instead, we use a fresh, liquid Kefir found in the grocery. That really should be sufficient to repopulate the gut. You may not get the response you hope for from a specialist who does not have first hand experience with many PANDAS cases. We all try, and some succeed at getting our docs to follow the protocols used by top PANDAS docs, however, many of us have had to travel far and wide to get to someone who really knows how to treat this. Where are you located?

Oh... here's another one! Took ds to ped for first time at sudden onset of his chorea, tics, ocd and we were absolutely terrified- that's how bad he was! He said, "I don't see a thing wrong with this kid, but you need to go see a psychiatrist- you're going to make him ill." After all was said and done, and after a beer or two, I wrote him a five page letter and told him exactly what I thought of him. Ran into him at a restaurant last year- wanted to attack him with my steak knife!!

Well, this won't top yours, but here goes... "You can't tell me that just dealing with his PANDAS stuff is the reason for your depression. I mean, my mom is dying of ALS and she's not depressed." ~ Dear Husband

http://www.mdheal.org/immune.htm Leo Galland, M.D. is my favorite source of information. He offers VERY scientfically based recommendations for nutrition and health maintenance.

norcalmom, .... o geez, I forgot what i was going to ask you!!!! Now I know i'm losin it!! :lol: oh yah- did your doc write the first appeal or did he have a peer-peer consult? The link you gave above is definitely helpful. Doesnt' have to be PANDAS specific. The important note is that it says you should not do it over the phone, and you should not respond with a simple letter. What they need is everything ever printed that remotely suggests that IVIG is helpful. All these references should be provided, with a short sentence summarizing each citation. My doc, today, told me not to send anything to them- to let him take crack at responding to the denial with a letter. I felt like saying "good luck" to him but I will have faith he knows what he's doing!

Wilma, I'm sorry you are so torn. About the other "infections" - You cannot assume probable Lyme Disease based on a positive band 41. This band commonly shows up. It doesn't indicate Borrelia species, but rather any flagellated bacterium. Yes, Borellia is flagellated (which makes the cell motile), but so are many other common bacteria. Do you have reason to believe your child could be infected by Borellia or other co-occuring bacterium? If your child has Clostridium difficile, she definitely needs treatment and if your provider is suggesting vancomycin oral, then that is a good place to start. Is he talking about IV vancomycin? That is another issue, as that has greater risk. IF I WERE YOU, I would do the oral vancomycin and see how she does. You will know VERY QUICKLY if that is what is causing the problem.

YEEESSSS! When my son had vocal tics during his more recent major episode, the Florastor made things worse. Much worse. Other dry probiotics (such as Lactobacillus rhamnosus GG) did the same. My theory is that when the immune system is overactive, putting these billions of foreign cells into the gut, where much of the immune function is, stimulates a reaction. I don't think it has anything to do with competition between species, but the body's immune response to these new cells which the body's immune cells recognize as "invaders." My doc said stop all probiotic strains except for those that occur in the "live" kefir drinks.

Age onset: 3 or 4 Time it took to get PROPER treatment: 6 years Remission: spontaneous remission of chorea movements for one year after acute onset; remission of motor tics and vocal tics for four+ years (but behavior stuff, ocd, imulsivity stuck around unrecognized as part of the syndrome) after second episode; remission of severe OCD (coprolalia) and vocal tics for 2+ years after 3rd major episode. Still dealing with chronic trichotillomania, and new OCD stuff emerging. I was very ignorant about the disorder and didn't know that it wasn't ONLY tics. I didn't identify the ocd as such- didn't even know there was such a thing in young children

Hi and welcome, regarding the school situation, yes, by all means, notify your school, either formally (in a 504 plan) or informally in a letter to his teachers and the principal. I wish I did this sooner. My son's crazy behaviors got him into trouble all the time, and it wasn't his fault- he couldn't help his actions, most of the time. Getting in trouble really caused a snowball effect. Also, my son had issues related to school work- another reason I wish I had done it sooner. He needed accomodations which, sadly, he did not get. You do not need to give lots of detail about the condition. When you meet, just give simple line by line requests for things you thing he might need. A letter from your childs doc will help, simply stating that accomodations are required at this time. Glad you found us!

I certainly wouldn't want to suggest avoiding treating anything and everything that needs treating, but here's my two cents: I really feel that doing one thing at a time helps the whole situation. My son responded really, really well to vancomycin. It was good for me to do one thing at a time, as having one variable allowed me to say that there was a clear association. Also, if there is an issue with one drug, you know which caused a problem. If more than one at a time, and there is a side effect or something, you can address that clearly. Vancomycin for Clostridium difficile is effective very quickly. If it is going to work at all, you will know very soon. The standard treatment is 14 days, followed by another course usually. There is a great deal in the literature about the need for tapering. We ended up needing a taper when we had relapse upon stopping. We tapered for one month! My son's G.I. doc didn't know the most recent protocol (didn't see it all that often) so I spoke directly to the author of a paper published near the time we were dealing with it. The cholestramine we used along with the vancomycin clearly impacted the effectiveness. Even spacing it out away from the antibiotic, we saw a diminished effect. We stopped altogether and I used a fiber supplement.

Please don't feel you should avoid posting negative stuff. Or we're all gonna feel that we have to do the same! This is what we're here for. What's up? Why are things so bad? We're here for you, Emerson!