peglem

The reason I looked it up is because my daughter just had a fluoride treatment, and it did seem to make things worse, but she was already going downhill, so I don't know. From the article: And they were testing in endothelial cells, I think. Maybe some science wise-guy (ehem, Buster) will come along and help!

Oh, sorry, try this. http://ajplung.physiology.org/cgi/content/full/290/6/L1139

No, antibody titers are not contagious. But, if your husband has strep (active or carrier state) that can affect your son's ASO titers, because exposure causes the immune system to create antibodies- BUT, ASO titers are not the antibodies that cross react with the basal ganglia to cause PANDAS. I'm sure that antibodies are not contagious. And I'm sure that ASO and antiDnase titers are not the cause of PANDAS. My daughter was (is?) a strep carrier and she never had either of those titers elevated. If your husband's Dnase is elevated, it indicates a past infection (or could be current, but you can"t tell current infections from titer levels). ASO and AntiDnase, IMHO, are the most misinterpreted, confusing tests in this whole PANDAS business.

http://ajplung.physiology.org/cgi/content/full/290/6/L1139 Is this saying that fluoride increases CamK II activity?

No, antibody titers are not contagious. But, if your husband has strep (active or carrier state) that can affect your son's ASO titers, because exposure causes the immune system to create antibodies- BUT, ASO titers are not the antibodies that cross react with the basal ganglia to cause PANDAS.

Allie did not have a reaction. She is IgE deficient. I'm not sure if that's connected- don't have research to back it up, but since IgE causes mast cells to release histamine...I'm thinking.

Thank you! I really needed that reminder!

Love valerian root! I don't think its psychosomatic for Allie, because she doesn't know what that pill is or what its for. Poor kid- every time I come to her with a pill, she just opens her mouth and swallows it! Careful using benzos and valerian together, though- both work on the same system.

She's been getting worse all weekend. Nonstop crap all day today. I'm exhausted! Guess I shoulda kept my mouth shut, ...bragging about a good day! What was I thinking?

It would be impossible to know how long the patient has had strep when they test positive. Its not like the infection starts when you get a positive test result! So how could you do a study on delayed or immediate treatment?

I posted it on Craig's list under Volunteers, for my area.

Precious!

I wonder if Sheila would allow it to be posted to the other forums here?

Peglem, do you mean symptomatic as in "sore throat/fever" or symptomatic as in behavioral changes? They never checked our kids when they were sick (fever, +/-vomiting-which I know know is a strep sign) b/c my kids didn't get the typical red sore throat that makes people think "strep". Every illness was presumed viral...until we started insisting on strep tests when dd was hosp. b/c of PANDAS (age 7.5). That's pretty bad to go until age 7.5 years, seeing multiple docs, for multiple illnesses and NEVER getting a strep test. They didn't look in her throat, but she had green nasal gunk and fevers, drooled like crazy (hurts to swallow your spit?)...Seriously, because she was dx'd autistic they couldn't see regular illness! She did have the behaviors as well, but those, of course were considered autism as well. I'd understand if it was just the behaviors. She had a couple instances of joint pain, couldn't walk for 3 days once- found nothing wrong with her.

Oh, no, I already thought that about my daughter's doctors! I didn't think you were criticizing all doctors, just bad study designs. I used to be very angry with doctors who would not help me- but, I've come to realize that they do help many children, just couldn't figure mine out. (but they should have tried.)

Thanks for emphasizing that point. Now I feel like my daughter's PANDAS was caused by medical malpractice! Between the ages of 2 and 8, we brought my daughter to the doc countless times, when she WAS symptomatic. They never checked for strep and seldom gave abx- just told us it must be allergies.

My dd turns all the lights on...I just thought it was her. I so appreciate this forum...makes me feel less isolated, still sad...for all of us... but at least less isolated. Mine turns them all off!

bump

Yes, its safe. Zith is taken up by the tissues anyway, and has a long half life, so most of the 1st 200mg is still in the body when you give the 2nd dose anyway. The once a day dosage is one of the (many) things I really like about zith!

We do melatonin here too. Also valerian root. But, during exacerbation, sleep schedule still gets messed up!

I'm so glad! Happy birthday Danny!

Wouldn't you know, as soon as I hit post- she starts smashing walls with her head! Ah, well.

Allie's doc wanted to get some labs before we start dicking around with abx again...she's not been so good lately. Originally, I was going to run quick and get the labs done and drop her off at school, but we didn't get much sleep last night, so I decided to let Allie sleep in this morning, do the draw, then forget about school. Considering how she's been lately, I went a bit heavy on the sedation, and prepared the draw site w/ lidocane cream. The lab waiting room was really crowded- we had to wait for seats. Allie was pretty good waiting...rocking back and forth, did some wild windmill dancing, laid across my lap like a 3 yo...pretty bizarre stuff if you're not used to her. Though a few of the other patients stared, most seemed rather enthralled with her antics- nobody was rude or huffy about it! It takes a very special phlebotomist to draw Allie's blood. And that very special person was working the desk instead of doing draws today. But, when Allie's turn came up, she did the draw for us anyway. And I don't know if it was all the practice w/ iggy V, or the 2 IVs, but today Allie decided she would sit in the chair for the draw. Usually, I straddle her on an exam table while the person I brought to help hold down her legs and then 3 lab workers handle the rest of her, with great difficulty. I did hold her from behind the chair and her sister helped, and 1 other lab person. Except for a bit of struggle with fear, things went great- as soon as the actual stick was done, she totally relaxed. We took her to Walgreen's after...had a few "moments" there, but it turned out okay. She's been great most of the day- clingy, but otherwise good, except a few short episodes of exorcist behavior... Compared to the last 2 weeks, this day has been uplifting! Oh, and the reason why the woman who does her blood draws is so good with her is because she has a son with a whole bunch of psych dx's, that the psychs can't quite figure out. This is the person who did the Cunningham draw for us last year, and she's been interested in talking about it, but this is the 1st time Allie would wait while we talked briefly. I told her to check out her sons immune system- it turns out she was having lupus flares while she was preggers with him. Anyway, gave her the name of Allie's doc. So, I hope her son gets some help in figuring out what's causing the psych symptoms!

Susan, do you know what code the doc is using for insurance billing?

Here it is: http://www.latitudes.org/forums/index.php?...amp;#entry63463