hugs2day Posted April 19, 2012 Report Share Posted April 19, 2012 Well my oldest DS9 enjoyed 3 months of full remission and he now has eye rolling, facial grimacing, worries, intrusive thoughts, etc. He told me himself this time that PANdAS was back and making him look crazy. I asked if he has a loose tooth and he showed me a tooth that is very loose. I knew my youngest DS7 has a loose tooth as well and I have been dealing with his on/off switch for over a week. He has been holding stable most of the time because I added a second antibiotic but I can tell by his eyes we are tetering on crisis. His should be out this weekend. I have them both brushing with hydrogen peroxide rinse in addition to their toothpaste. I also added Xylitol Rinse by Spry and the gum. They are both on treatment dose antibiotics so I guess I will try to attack the strep on teeth topically. I called the dentist to ask for Peridex but dentist refused saying that it is only prescribed for mouth infections. Any other ideas? I need to send my husband to get supplies asap as we will likely be homebound for a awhile. Teeth are my kids worst exacerbations! I sound panicked and I am my oldest is almost done losing teeth but my youngest is barely beginning. I can hardly wait for the tooth fairy days to end. Sad but true. Link to comment Share on other sites More sharing options...
Fixit Posted April 20, 2012 Report Share Posted April 20, 2012 (edited) Well my oldest DS9 enjoyed 3 months of full remission and he now has eye rolling, facial grimacing, worries, intrusive thoughts, etc. He told me himself this time that PANdAS was back and making him look crazy. I asked if he has a loose tooth and he showed me a tooth that is very loose. I knew my youngest DS7 has a loose tooth as well and I have been dealing with his on/off switch for over a week. He has been holding stable most of the time because I added a second antibiotic but I can tell by his eyes we are tetering on crisis. His should be out this weekend. I have them both brushing with hydrogen peroxide rinse in addition to their toothpaste. I also added Xylitol Rinse by Spry and the gum. They are both on treatment dose antibiotics so I guess I will try to attack the strep on teeth topically. I called the dentist to ask for Peridex but dentist refused saying that it is only prescribed for mouth infections. Any other ideas? I need to send my husband to get supplies asap as we will likely be homebound for a awhile. Teeth are my kids worst exacerbations! I sound panicked and I am my oldest is almost done losing teeth but my youngest is barely beginning. I can hardly wait for the tooth fairy days to end. Sad but true. Do you have a DAN? Mine will give me abx when we go in for teeth cleanings? We don't use floride tooth paste. Check the contents. Maybe start a round of ibuprofren for a couple days. I hate teeth too! Edited April 20, 2012 by Fixit Link to comment Share on other sites More sharing options...
patric Posted April 20, 2012 Report Share Posted April 20, 2012 Hi fixit, You mentioned no flouride toothpaste? I hadn't heard of this. Does it cause problems? Also, we recently switched to water with flouride. I am wondering about that too. Any info. Appreciated! Thx Link to comment Share on other sites More sharing options...
Fixit Posted April 20, 2012 Report Share Posted April 20, 2012 (edited) Not a good thing, it is a toxin. i like this read. Talks about affecting the immune system. http://www.consumerhealth.org/articles/display.cfm?ID=19990303222823 ps..this says no fl under age of 2? i figure its' just like when smoking was fine.. then it was bad, but second hand smoke was fine??? now we all know better.. http://www.time.com/time/specials/packages/article/0,28804,1976909_1976895_1976898,00.html Edited April 20, 2012 by Fixit Link to comment Share on other sites More sharing options...
hugs2day Posted April 20, 2012 Author Report Share Posted April 20, 2012 Hate teeth! Yes we do have a couple of docs including a DAN. They were already on treatment dose of antibiotics but the loose teeth still caused problems. Tummy problems too. Yes, I agree about Flouride. Tim Buie, excellent gastro dr. said in a autism seminar I attended "flouride is an irritant for the gut and bad toxin". Since then I buy xylitol toothpaste or Branaam its no flouride, no aluminum, no sls, also contains xylitol. Also, flouride water gave my son spots on his teeth when he was 9 months old. I used to buy the baby flouride water and he got the spots so I stopped and have avoided flouride water since. He has methylation issues so floride no good for him. I will let them get floride treatments at dentist but I have them rinse immediately after. And a couple of times a week I have them brush with floride and rinse really good. I still think we need floride for teeth but not everyday for kids like mine and I am picky about which toothpaste I allow them to use with floride. Link to comment Share on other sites More sharing options...
patric Posted April 20, 2012 Report Share Posted April 20, 2012 Wow, I had no idea about floride! The article you posted was really eye opening. We recently started getting the hinkley floride water in the big jugs. I will request the non floride jugs. Thanks fixit! I really appreciate it! Link to comment Share on other sites More sharing options...
fightingmom Posted April 20, 2012 Report Share Posted April 20, 2012 That article was very helpful. Learned a lot. Thanks! Link to comment Share on other sites More sharing options...
colleendonny Posted April 20, 2012 Report Share Posted April 20, 2012 I started thinking about flouride after DD had her teeth cleaned and started on flouride. The day after getting her teeth cleaned, a throat clearing tic started. After a steroid taper and discontinuing her flouride supplements, the throat clearing stopped. I just ordered periobiotic watermelon toothpaste for my kids. It is a brand recommended by our LLMD. I hope the kids love it because itcost $14 for a small bottle! Just wondering for the kids who use flouride free toothpaste, what brand do you use? Interesting as well- I was reading that flouride has a connection with affecting the thyroid. My DD's TSH was highly sensitive at 4.02. Normal range is .27-4.20. Link to comment Share on other sites More sharing options...
fightingmom Posted April 21, 2012 Report Share Posted April 21, 2012 Argh, I think my biotene toothpaste has flouride. Darn it. It has xylitol, lactoferrin, and other great enzymes for bacteria in the mouth. I hate to say goodbye to it. Has anyone tried this one? http://www.amazon.com/Xyliwhite-Non-Fluoride-Toothpaste-6-40-Ounces/dp/B000MGWIE8 Link to comment Share on other sites More sharing options...
fightingmom Posted April 21, 2012 Report Share Posted April 21, 2012 I started thinking about flouride after DD had her teeth cleaned and started on flouride. The day after getting her teeth cleaned, a throat clearing tic started. After a steroid taper and discontinuing her flouride supplements, the throat clearing stopped. I just ordered periobiotic watermelon toothpaste for my kids. It is a brand recommended by our LLMD. I hope the kids love it because itcost $14 for a small bottle! Just wondering for the kids who use flouride free toothpaste, what brand do you use? Interesting as well- I was reading that flouride has a connection with affecting the thyroid. My DD's TSH was highly sensitive at 4.02. Normal range is .27-4.20. Just looked up the Periobiotic toothpaste. Probiotics in toothpaste? Very cool! Link to comment Share on other sites More sharing options...
bulldog24 Posted April 21, 2012 Report Share Posted April 21, 2012 are our kids supposed to get cleanings? I have heard different things. Link to comment Share on other sites More sharing options...
colleendonny Posted April 21, 2012 Report Share Posted April 21, 2012 I am going to continue cleanings, just no flouride treatments. Link to comment Share on other sites More sharing options...
patric Posted April 21, 2012 Report Share Posted April 21, 2012 My pandas doc said no cleanings at all. Link to comment Share on other sites More sharing options...
Dean1065 Posted April 21, 2012 Report Share Posted April 21, 2012 I was wondering if those that were told not to have any cleanings if it was due to individual circumstances or if it was issued a general advice to all PANDAS kids? We have a cleaning appt in a few weeks and am wondering if I need to rethink it? My daughter doesn't seem to have issues with loose teeth, not sure if that matters. Do prophylactic ABX help with dental procedures? Link to comment Share on other sites More sharing options...
TessaKrista Posted April 21, 2012 Report Share Posted April 21, 2012 (edited) Well my oldest DS9 enjoyed 3 months of full remission and he now has eye rolling, facial grimacing, worries, intrusive thoughts, etc. He told me himself this time that PANdAS was back and making him look crazy. I asked if he has a loose tooth and he showed me a tooth that is very loose. I knew my youngest DS7 has a loose tooth as well and I have been dealing with his on/off switch for over a week. He has been holding stable most of the time because I added a second antibiotic but I can tell by his eyes we are tetering on crisis. His should be out this weekend. I have them both brushing with hydrogen peroxide rinse in addition to their toothpaste. I also added Xylitol Rinse by Spry and the gum. They are both on treatment dose antibiotics so I guess I will try to attack the strep on teeth topically. I called the dentist to ask for Peridex but dentist refused saying that it is only prescribed for mouth infections. Any other ideas? I need to send my husband to get supplies asap as we will likely be homebound for a awhile. Teeth are my kids worst exacerbations! I sound panicked and I am my oldest is almost done losing teeth but my youngest is barely beginning. I can hardly wait for the tooth fairy days to end. Sad but true. I have stopped using flouride toothpaste on my son since he had his first pandas episode. I noticed that every time he got his teeth cleaned, he would twitch afterwards. Then I made the flouride connection, and asked them not to use any flouride in any part of their cleaning procedure. Things were fine since then. His recent pandas thing is not connected to flouride. I have him use baking soda occasionally to brush his teeth. They become very white. Otherwise he just uses water, a toothbrush and kids floss. Has anyone else used baking soda too? The dentist said that it should be fine, since it is what people used in the old days. It is the "original" toothpaste he said. The dental hygenist thought that it might be too abrasive and suggested to only use it sometimes. So, I have him use it occasionally, especially when he eats things like blueberries etc. Before that, I would have him used it daily. Now, only once or twice per week. When he swallows a bit, I remind him that we use it in baking products. Perhaps not good to swallow if a kid drinks pop, bc of the fizz. Don't know really. Edited April 21, 2012 by Sweet Cheeks Mom Link to comment Share on other sites More sharing options...
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