Mayzoo
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Posts posted by Mayzoo
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Just watched the trailer - looks good
http://www.indiegogo.com/THE-GREATER-GOOD-MOVIE
Also, there's a matching gift of up to $75,000 for donations rec'd by April 19. Info is to the right of the video on the above site.
Jill, do you know if it will be available to watch online (for those of us who are relishing the summer weather and may not be house bound on Saturday?)
Or those of us who have no tv services other than regular free broadcasting?
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Argh...everything is so trial and error. I really wish we had something conclusive to go on and some more research would be done for these poor kids!!
Oh, you just want to take all the "fun" out of this don't ya .
Seriously though, with all the kids being different metabolically, genetically, vax history, medically history, abx history, etc...there will likely never be a one size fits all *sigh* but we can keep wishing .
Well, I bought it anyway. If she cannot take it then I will as my nutrition and energy levels is dismal most times anyway.
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Argh...everything is so trial and error. I really wish we had something conclusive to go on and some more research would be done for these poor kids!!
duplicate post...sorry computer hiccup
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Yeah, I am a little torn too, but I did give her a probiotic that had this in it in the beginning and she still improved some. Then I tried one without this in it and she still improved at about the same rate.
Right now, she is not on probiotics since we could not clear an infection for two months. A pharmacist buddy of mine told me to lay off the probiotics in general as they may be lessening the abx effectiveness regardless of the time separation (6-8 hours apart). After we laid off the probiotics, the infection cleared so he may have been right. Now that it is cleared, I am considering putting her back on the probiotics during the remainder of abx treatment.
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I am new to this, so just wondering after reading the ingredients if the streptococcus probiotics are alright?
You will get conflicting answer to that one. Some feel it is bad to introduce anything with the word streptococcus in it. Others feel there is a difference between Strep A bacteria (live) and streptococcus probiotic. I will let the more learned than I on the subject chime in.
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As far as supplements go, how does this one look? See any glaring concerns? We are in a good place right now with kiddo. She currently takes a MV, Omega, IBU, and coconut oil in the am...zith, IBU, melatonin, coconut oil in the PM. This would only replace her MV and Omega. I was thinking about 2 caps a day in am for her (50lbs).
Thanks for any input.
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Wanted to make sure you are not dosing the aleve and ibuprofen together. They compete for the same receptor sites and only one will work anyway, but they both can upset the stomach...especially together.
Sorry no real help for the confessing problem, but sounds like some great advice already.
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Okay, it is still a 20/20 special, just this years version. The other name was last years version apparently .
"My Extreme Affliction Makes ABC #1 on Saturday for the 2nd Week Running" Same time frame I believe.
This is the only episode information I have found so far, and I cannot research progeria right now, sorry.
"Description:
Children of hoarders; women who love cats; a former hair model has the condition alopecia; children with progeria."
Okay, I made a minute to find this:
"Hutchinson-Gilford Progeria Syndrome ("Progeria", or "HGPS") is a rare, fatal genetic condition characterized by an appearance of accelerated aging in children. Its name is derived from the Greek and means "prematurely old." While there are different forms of Progeria*, the classic type is Hutchinson-Gilford Progeria Syndrome, which was named after the doctors who first described it in England; in 1886 by Dr. Jonathan Hutchinson and in 1897 by Dr. Hastings Gilford. "
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I will have to try to watch it on the net after kiddo goes to bed. It seems it is a 20/20 special (8 weeks long started on 3-3) on ABC at 9pm EST/8pm CST--probably different issue with each show. No indication yet what the subject is, but I am looking on the ABC site now.
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I recommend waiting the full 6 weeks before tinkering with the dose. Optimal effects are seen in the six week range. Our Neuro asked if I wanted to up the dose within a few weeks, and I had to remind him that optimal is not seen that soon, and we should wait the full 6 weeks. He agreed, but said most people want to see results now, so he frequently agrees to bump the dose faster.
SSRIs for adolescents are very much a trial and error, and caution and appropriate time needs to be exercised.
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I would go with cefadroxil. It is a cephalosporin. Augmentin did not clear my DD of strep, but I imagine you will get numerous different responses as every kid is different and has a different history.
Thanks you mazoo...this is the first positive strep she has had since last march. We have used BIcilin, amoxicillin, and then zithromax but I must say with the other two her symptoms were much worse and she always tested negative but with a titer rise. Zithromax is the opposite..symptoms not so bad at all and positive rapid strep. The only way I knew to bring to doc is that she had slight petechaie around her eyes. Last week I just got a blood test showing ASO back in range for the first time ever since Scarlett fever in feb '11!! I was hoping to stop all together soon..,! What a joke right. Do you think I should continue the zith once a day too? Thanks for replies again. Jv.
Check with the doc, but if it were my kid, I would want to do the short term treatment for positive strep concomitant with the long term. I would be extra alert for common side effects with antibiotics, yeast infection, diarrhea etc... but I would be leery to let the blood level drop off on the zithromax.
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I would go with cefadroxil. It is a cephalosporin. Augmentin did not clear my DD of strep, but I imagine you will get numerous different responses as every kid is different and has a different history.
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Option one is likely the cheapest. Sweetie had lab work done recently and our deductible is not met yet either. The lab billed the insurance for $500.00. Insurance allowed $86.18, and the lab has signed a contract that they will accept what the insurance company allows.
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We are trying Zithromax (azithromycin) and have been on it steadily for about 44 days. I started seeing minor improvements in two weeks. Now I would say she is back to about 90% of her normal self.
Bit of history:
DD was diagnosed with strep on 1-5. Her Pandas flare up started in Sept 2011. We did not begin treating it until 1-5. We started with Amoxicillin (one step newer than penicillin but still in the penicillin category) for ten days. Saw minor improvements on days 6 and 7, then lost them all of them the rest the ten days. We switched to Augmentin (amoxicillin + clavulaunic acid) for 10 days. Saw more very minor improvements, and did not lose them, but did not resolve the active strep infection either. We switched to Zithromax and still did not resolve the active strep in the first 5 days, so we just kept at it with the Zithromax for 30 more days before we tested again and got a negative strep test and culture.
Every kid is different, so what works for my kiddo may not work for yours
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Kiddo had 4 positive strep tests over a two month period, and her ASO was very low at 6 (under 150 is normal I believe). We just got a negative strep test on the 29th confirmed by culture.
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I like the "Naturally Fresh deodorant crystal". It is a crystal that you get wet, and rub on. It forms a natural barriar against odor causing bacteria. It contains Natural mineral salts ( Ammonium Alum), Aloe Ver (Aloe barbadensis extract).
Information:
T-CCD International
800-653-4006
www.tccd.com
So far as I know, the company is still in business.
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DD was on maybe six courses of abx in her 10 years prior to dx.
Never tried the glutathione treatment.
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Ask the office what strain he tested positive for. Then you can research it. There are many types of strep.
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DD 10 has some constipation though she has been on abx for since 1-5. She was rapid test strep positive until the last visit (2-29 waiting on culture still.) She started zithromax 250mg per day on 1-25. I stopped her probiotics on 2-1 based on the advice of a close pharmacist friend who felt they may be inhibiting the effectiveness of her abx (despite timing them 6 hours apart from her abx.) She has made sx gains by leaps and bounds since a few days after stopping the probiotics (2-1 rapid test was still positive despite 6 days zithromax).
She has shown no signs of complications from the abx w/o probiotics. I can easily treat the constipation, but I was wondering for those who do not give the probiotics with the abx, how common is this? I would have thought she would have diarrhea by now, not constipation.
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Looking at my DD's blood work results copied from doc's office show only one value for the ASO and it says under 150 is normal. You may have had a slightly different test done than my sweetie had done.
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My kiddo has the BCBSTX Blue choice PPO and a referral is not needed--so it depends a lot on what kind of BCBSTX you have. For me, an office visit within network is an office visit. So long as the doc is on the preffered provider list, we get in network office visit co-pays (up to six a year). This year we will go way over the six for the first time.
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My dd (9 at the time) went from drinking around 80 oz of water a day to drinking barely 12 to 20 oz of water a day when she presented with symptoms. Now that she has been on abx and the vast majority of her sx are 80% ish better, her water intake is up again as well. Not to her normal levels yet, but better. Kiddo developed a sudden, unexplained fear of using the restroom, so I attributed the reduction to that, but I am just guessing. She reduced her food intake drastically as well, but again, I do not know why. My kiddo has autism and is expressively delayed, so I cannot just ask and get a simple, clear answer to a lot of questions.
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It was one of about 2 dozen symptoms that were uncharacteristic and sudden onset for my kiddo. Google search for nightmares and personality changes lead me to PANDAS.
does anyone know if strep lives on surfaces
in PANS / PANDAS (Lyme included)
Posted
Months
"In a systematic review of the literature, German researchers explored the ability of infectious organisms to survive on inanimate surfaces.1 They found that most gram-positive bacteria, including vancomycin-resistant enterococcus (VRE), methicillin-resistant Staphylococcus aureus (MRSA), and Streptococcus pyogenes can survive for months on dry surfaces. "
http://www.infectioncontroltoday.com/articles/2006/11/fomites-and-infection-transmission.aspx