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Everything posted by Fixit

  1. Read a few replies and i relate to all of them. Cant' be in the room with them...even with the boys who are ok. Being on DEFCON 5 all the time has done me in.
  2. Not really relevant... I would just drop the P and call it ANDAS/ANds/itands....what have you. i just wonder if there was this suscepptiblity that was never triggered. or if the perfect storm just created the susceptiblity and then the trigger was pulled. i wonder if the gereneral population continues with bad diets/mutiple vacines/polution..how much more of this we will see. Not sure how true this story is, but some connection is being made that people(adults) are coming down with tics(ts) because of the meter readers that are being installed for remote reads. Especilly if they are b
  3. are you giving the right form. we just started using mag taurate again..my ds is about 105-110 and we are currently using 125mg...that is the dosage in each capsule. sorry just remembered..per recent introduction we are only giving 1/2 a capsule currently... i put the firs half in a shot glass with some other things...and leave the rest in the capsule and give it the next day. for what its worth.
  4. Yes...things did seem a bit better. I was kinda hoping the warts were the answer since i did see some improvement But since i am having a hard time getting this DS to 100%, there are flares with every tooth loss, yeast infection, allergy season, etc. When my kids are 100%, teeth, colds etc, food colors(ie at freinds houses), don't affect them, not even pollens, until they are sent into overload. I suspect the snot lets this bread and then wha-la an infection. In episode, the load is too much, inflamation too high and i can tell something is even worse!!! For ds12 we just realized we he ha
  5. SF, i am very curious if you have tried or started l-glutmaine. I was reading about how it helps the intestines and ordered some. And upon rereading the link i have earlier in this thread by amy yasko..(i can't seem to find the exact reference..so maybe it was another article). glutamine converts to glutamate(bad thing) found these 2 though http://www.ncbi.nlm.nih.gov/pubmed/15052410 http://articles.mercola.com/sites/articles/archive/2004/05/01/glutamine.aspx Not saying you are talking about high doses. DS did not respond well to Nac..or at minimum no effect.
  6. Ds had warts on his knees for 2 years. Interestingly once they were gone i realize they started, i think, the same exact time as this long episode. I think i was the perfect storm where he got everything at once and i was looking for was strep(idiot). Anyway we tried every thing to get them to go away. If i am correct i think we were on tagamenet for other reasons, that i did seem to soften his pandas condition at the time. but we went off as sometimes you have to stop and reevaluate. It got to the point where his knee looked like a colyflower(sp). The dr was at his end after 2 years(
  7. This is my ds also. But i wonder even if ds isn't "snotty", though i think i hear him sucking it in once in a while if you know what i mean(yuck)(i also think it gets stuck and doesn't drain) wouldn't it seem logical that that there is a mucos build up in the stomach/intestines. I have no idea if i am right. Just thinking it through. Then other stuff have a breeding ground. Or maybe not breeding, but since there is a mucos, other aspects of the gut are not running to their full potential? I agree, in that i am concerned about stripping the gut of things it needs. I'm sure the abx's are
  8. I keep coming back to this article by amy yasko for many reasons. There is alot more info than just about NAC I can't say nac helped.(it was just the form N-Acetyl Cysteine) and i did add Vit C. DS is blood type O and MULTIPLE strep infections. NOt to say that maybe it might help at some later point, once other aspects of the gut are healed/being assisted. http://gordonresearch.com/articles_autism/role_of_excitotoxins.html Blood Type/Streptococcal Infection The A-B-O system for blood typing is dependent on the blood group antigens that are expressed on the outer surface
  9. We also saw a little improvement with tagament. We may revisit that in the future. I don't want to confuse our strategy at the moment. Here is the link to a sal-free diet/ingredients. But they are also called Guier's (sorry for bold type ...sent to someone else to help me understand, so used large font) I am also interested if anyone has any thoughts on this or can translate better. I've tred to understand the Guaifenesin Connection for more than a month now. Per another mom, they heard that using robitussin, if you can't get pregnant, might help. It thins out the mucus
  10. vanco..if remember right my Dan also orders antifungal with that as vanco stays in the gut. once there is open space any other available organism will try to populate that space.... needless to say alot of probiotics to fill in..alot of pearls too. vanco helped the screeches several times for ds... we may have to go there again...but we are not nearly as bad as we have been in past this time. trying to hold off till necessary. as one thing comes into balance another goes out. got to run myself...but i was looking at some other things that are gut related along the line of clariton
  11. Dealing with this for ds12 3 1/2 yrs. other 2 are in remission.(all ticcers as main/sole possibly condition/other possible conditions if counted are so insignificant/to me) But ds has had more than a dozen strep infections with paperwork to prove infection..followed by abx and remission. Per Bonnie G..and amy yasko..and maybe a couple of others...there is a belief that step does something to the gut. some other domino effect occurs. Recently started a salicylate free diet, with additinal restrictions from the failsafe diet and we have seen improvement. That is comboed with addi
  12. yes very helpful stuff. this item is white. he was taking alinia which had a yellow coating that he reacted too. it compounds yellow but the coating is something else and per an autism site i scraped it off and he does better on it.
  13. ok, hadn't thought of that. a/o a month ago or so, i sneak 2 charcoal capsules in with his lunch...that is all i can do during the week. I used to do it when he cam home..but that put everything way off into the night. on the weekends i do get to give an internal drawing formuala that does contain volcanic clay, zeolite, and some other stuff. But again that is only 1 time, around noon. we are not doing an antifugal currently. i am hoping the nightly probiotics and the biotin will hold enough for awhile. these along with the binders were in place prior to starting the anti-vir
  14. Thanks SF. Definitely helps to hear this. DS hhv6 is 20 times higher than normal..so pretty high. Also recently tested pos for Coxsackies too. A mom just contacted me and suggested that maybe it is him feeling better! He is rather a lathergic, shlumpy, lump. Tics overall are ok...when the hyperness kicks in the tics/more complusiony at this point, SEEM up, or maybe they are more intense?.
  15. DS is so hyper since starting this. Therefore trickle of makeing the tics seem worse...i think!?!?! IE..yesterday he was wrestling his younger brothers any time our heads were turned. Its funny as i type that statement(i kinda chuckled)..but it's not funny when you hear thunking, banging, and of course the inevitable crying, screaming! list of ingredients Valtrex is offered in 500 mg and 1 gram tablets, the active ingredient being valacyclovir hydrochloride, with the inactive ingredients carnauba wax, colloidal silicon dioxide, crospovidone, FD&C Blue No. 2 Lake, hypromellose, magn
  16. This moring was beautiful. I gave first dose of this at 12pm ish. About 1;30-2 we are seeing a ramp up in tics. IT is easier to see an effect when the house isn't on fire. Has anyone had worsening of symptoms by addressing hhv6 with this or other antiviral? If so, how long did it last? Did you push through? Scheduled detox with drawing formula in about 20 minutes...maybe that will take the edge off. Cant believe i never checked hhv6 before. All this time i thought we checked it. from my understanding per a dr. 1:8 indicates prior infection 1:20 could indicate cur
  17. I tried ds on quercitin a few times and thought he seemed worse. Not crazy worse, but worse. we have also done curcumin and Enhansa... I could not figure out why he was getting worse over a period of time. One of the recent things i decided to address( that most of pandas, dans, immunologists, DRs and few other people i have mentioned it to)is salicylates. Ds mouth itches with most fruits. so drs said don't eat or dont eat if during allergy season. But even if i get it past his mouth, what is it doing interanally? So we have gone sal free. TURMeric and querctin(which i seem to find come
  18. I agree completey!!!! Well said. We have been doing more gut modality/dibiosis/methylization/inflammation protocal. It's not just gf/cf that needs to be considered. Along with viral/infection load. Alot of inprovment in a few weeks. But things were bad, and i am being pretty hard core.
  19. I have no real input, but i heard of a Dr(i dont' remember who, or who told me) that supposedly treats PANDAS by giving ivig for 5 days. But either gives a minimum of 4-8 treatments, (and sorry for being so vague, as i have tried to find out who this was to figure out the theory) and i want to say either does it every week in a row, or one every month...and supposedly believes this way is curative...IDK. I would love to find out who this is and talk to them. I think you may need to really look at methylization to have better results with some protocals you my be attempting. i wish i had m
  20. OH MMc, i wish it were a magic bullet. i am writing down what i am doing. I've been trying to stalk a couple of moms that i think might have a realivant piece and i have a couple more dr's i am talking to, in order to continue this exhasperating journey toward healing. We did pex with no avail either. Something is in the gut!!!! Or something has happened to the gut, because of multiple strep infections. His tics progressed from a simple tic, to a motor after 6-9 strep infections, with comlplete remission in between. Then from a single motor, to gross, complex, chaining, motors and voc
  21. I weep as I read this. I am so sorry. I need to state that even if the tics do not respond to ivig that does not negate the fact that they are triggerd by infection. Just like others who are treating ocd with ivig, I cannot say that i am reading 100% recovery with that. That they either need multiple ivigs or other interventions and medications. And even with he added side items are not 100%. So to say if ivig is not recovering the tics, it is not infection driven is a big mislead. As some do get recovery of tics from ivig. UNfortunately, i think it also triggers some other path for so
  22. Thanks for sharing. Wonderful to see the support and the acknowledgement.
  23. Another panda mom and i were just discussing this, this week. The exact eye thing that both of our boys seem to have in common, besides a few other things. Anyway, because of that conversation i started ds on eye exercises again that i learned from Brain Balance. Another thing that helped ds early on was an overlay. The concept is that the glare from the white paper, and/or the flourescent lights creates a problem and makes it difficulat to track. The fluency with the overlay was amazing. supposedly different people need different colors, red, blue, green etc. I notice it was more comfo
  24. interesting, i'm glad things are looking up
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