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Everything posted by Fixit

  1. LaurenK, do you still feel the same about namenda today? if so what dose? is it based on weight? i don't know the dose in this survey http://www.ehealthme.com/ds/namenda/tic
  2. Glad to hear you are having some successes! Regarding homeopathy...Stephanie2 is extremely well versed in it. She is also having great success with that path. She may have a couple of sites to investigate. Thanks for the update.
  3. I dont know if this is related. I was searching some other things and found this. I don't know if it's a scam. I also don't know if this has been posted before. A glutathione product. http://www.healthdiscoveries.net/parkinsons-disease.html same company as above…just a different page. But at the bottom it states the italicized http://www.healthdiscoveries.net/neurological-disease.html ASK US to send you reports from others who have been helped and have improved or recovered from: Progressive Multiple Sclerosis, Alzheimers,a Brain tumor, Epilepsy, Parkinsons Disease, To
  4. just thought of this..duh... maybe his yeast is also a little better since he's not on abx anymore. no step, no need for abx, maybe helping to slow recovrey of gut...even though i cant get him to listen about diet, beer, and the need to conitnue probiotics!!!!
  5. Hey ALex...thanks for the links. I was just about to post about the TA that my dh who has tics. AS you may recall and he has had chronic/active strep infections all his life.(i always thought it weird that he always had strep and i never have)(yes had my titers checked, but will redo just to be sure i didn't misunderstand my findings)(i believe my immune system is obviously way better) whenever he was on abx he always seemed better and i would tell him so. We finally had his tonsils out a 1 1/2 years ago. He was not on abx for more than 2 weeks post surgery...i should have asked one o
  6. I have not read all or fully read the replies. Not trying to start a fight, and I’m not looking for anyone else to agree with me..as I am secure in my position. I NEED to put this out there. AND a heads up that this reads VERY BITTER…BECAUSE I AM!!!!!! I do not know what DR you saw, BUT as mother of 3 ticcers who have gone into complete remission with abx, YOU DO NOT NEED ANY OTHER SYMPTOM TO HAVE PANDAS/PANS/possible lymes. (THIS IS MY OBSERAVATION and i don't care if the top DR or the POPE says I am wrong)(I do love that even if the top pandas dr’s disagree with me…they will at
  7. Retin A is a derivative of Vitamin A. I am not sure that A or too much a is good for tics. Also, i'm not sure of your whole story but since this is the lymes section(i think crossing information is very relavant), if she is on doxy, she may be herxing to some unknown infection. Herx is commanlly talked about in lymes. Finally, being very familiar with PANS, she may have been exposed to some infectious agent at school. Even teachers could be carriers and not know it. There is also the concern of what the school building contains. So many possibilities.
  8. i don't have an answer on most of your question... But i don't like the idea of milk of magnesia especially long term http://www.webmd.com/drugs/drug-326-milk+of+magnesia+oral.aspx?drugid=326&drugname=milk+of+magnesia+oral and check out the side effects tab too also takes away vital minerals http://www.livestrong.com/milk-of-magnesia-side-effects/ i also thought m of M contains aluminum here is what i found real quick http://www.webmd.com/drugs/drug-326-milk+of+magnesia+oral.aspx?drugid=326&drugname=milk+of+magnesia+oral&dmid=1207&dmtitle=ALUMINUM;%20MAGNESI
  9. I was going to mention about arthirits and viruses. I either read it, heard it, maybe my mom who used to read alot mentiond this, or maybe it was a theory we came up with. My Aunt(alive and in bad shape)and Uncle(passed about 30yrs ago from this)(we believe it was the drugs they tried to treat it with) on my father's side, have CRIPPLing arthritis. And when i think of other people we know in that area(when cities had different cultrual neighborhoods)(also a time, as i was raised, to live at home untill you saved enough money to buy your own house) there were ALot of people with terrible A
  10. WELL...THERE YOU HAVE IT!!!! Thanks Eamom for bringing this to our attention over here. It might possibly make more parents aware of how we have stay strong in our own conviction of what we are seeing on the ground, and fight to find the REAL doctors who will listen to their patients and their observations... thank you. And Thank you PANDASNetwork for posting this on their website!!!! I am a Mom of 3 strep(infection) induced ticcers!!!!
  11. I agree with LLM!!! I think people take yeast too lightly. This is an analogy of my DAN's; when treating the gut, or perhaps the whole immune system, think of it like wet sand. If you are scooping,(killing something) out, other things slosh in to fill the space or take advantage of that space. So if your abx is killing something, yeast will take that opportunity to fill in or grow more. You then wonder why he isn't better or why is he worse. Well you have created a new infection/problem. Some things need to be treated simultaneiously. I would probably try the diet at the same time. Fig
  12. I have not "studied" up on them completely. Yes helmeths do help. But i think all helmeths are not equal. From my understanding it is actually the toxins from the TSO's that are beneficial. Don't quote me on that. Or in reality, is it that the one breed devours the others.??????? And that is why, if TSOs work, you stay on them for life...i believe. Would make sense if they have a food supply,but a short life cycle, and cannot reproduce in our body.???? just a secondary theory i just pulled out of you know where. But i will reitterate, my ds12 has done fantastic on the parasite cleanses
  13. Notice these say "reported." Yes..besides not being reported, those not tested, and those without good testing easily quadroople the number. Now lets add that ticks don't understand boarders. Catching a ride on geese easily spreads it and i believe deer don't check for passports. If you think about statistics, the density of lymes isn't just do to more of it there... There is also a higher population of people, more people per square inch to be diagnosed. Then add that those in cities are more likely to follow through in thier health and not just let things go, they might be mor
  14. Dh is adult pandas. Strep all his life (3-4)times a year till about 18 months ago. Per a known panda dr, was put on 3-4 months of zith untill we were able to get his tonsils out.(that was not fun)Dr insisted on dh doing this as his constant infections were not going to allow our house to heal. Hubby can't believe he hasn't had strep in so long. He feels it's like a miracle. His tics were roughly a 3 maybe 4 during active infection, and i would say they are a 2-3 now. I don't think it wll be overnigt for him. I would think if i were focusing on his health i could get him to a 1 or he
  15. Well you know me..jmho..no such thing as transient tic. they said that about ds12 but each time we treated strep he went into remssion. No one belived my (a non-phd) could make a correlaton between an illness and a neurological disorder. Myco p was the final trigger for ds12 when he was 9 and we are still fighting for him. That same myco p was the trigger for ds5 (in remssion) but do to the steroids to treat breathing(i believe crated an unnoticed yeast issue) cannot absorb nutrients. ds9, i thought was going to be my non-pandas was trigger not by his 1st strep at age 8,(that is why it
  16. according to this...rare, but there!! http://www.aldf.com/usmap.shtml here's the cdc's http://www.cdc.gov/lyme/stats/maps/interactiveMaps.html
  17. yes..my younger 2 have more of this. it is not constant. it revolves areound food texture, sensitivey.. not really worth mentioning. if it were another kid, you would just say that was the way he is. Ds12 can down the most disgusting things i give him. he is my hero!!!!! the younger 2 always "think" about what they are eating more. and they think themselves into gagging. but again nothing compared to what some of you have to deal with.
  18. For Ds12..who would get roughly 3 episodes a year, he had complete remission between episodes.(strep induced...would have been swedo poster child) Either as he aged, or as more episodes occured, the tics became more severe simple tic..eye blink 3-5yrs old motor tic...shoulder shrug(eye blink gone) 5-9 years old vocals,gross motor, and chaining....9 years till current(and tics rotate, but are constant and varied)
  19. Hashimoto's is hypo-thyroid. I tried Ala because of the benefits it has I felt terrible. sluggsih. Sitting up was an effort. I noticed I felt like something was weighing on me. Much more than my other nagging feelings of dealing with pans/kids. I couldn't put my finger on it(slightly depressed, burdened). I wondered what is happening, then i realized i had taken the ala. In my memory loss, i remembered i thought i read something about the thyroid. And you know, sometimes you buy things they sit there for a few months, then you think, oh yah....i should try that!!!!! I don't know if
  20. I tried ala on me first. I have hashimots' I felt terrible. It really wacked my thyriod. It took a few days to a week to clear. Ds has thyroid issuues too. so i did not give it too him. Just though i would give you an adults experience who can articulate the effect. Interesting as i've recently read the few links about mom's autoimmune issues and pans. So the pans comes from my hubby's side...and i guess i had the other side of the key.?????
  21. This is in regards to me, not my ds. ubiquinol(coq10) gave me a little clarity..ability to think my thought through. also using Busy brain to lift some depression agitation..and again clarity.(sometimes i only take 1/2 a pill) But, i am middle aged( by that,i mean 29 ), so you loose coq10 as you get older and obvioiusly having small kids, with an illness can bring on depression, and agitation, and constant interruptions, hinder full thought processes. So those might help, but my case is more enviromental, not constitutional(ie if you could fix my kids, i'm pretty sure i would be happier..
  22. Scott smith is a very goodd PA (DAN) in NJ very close to DR T. DAN's have other modalities that can be of benefit. THis group also treats pans. and they do ivig in house as well. I believe that might be that case for drT currently as well. Personally like that i have a few specialist as they sometimes have different takes and different ideas. i always let each practitioner know what i am doing or have done even if it is not with that one particularly. THey know you are fighting for your child. "Full potential wellness" is the name of the center. depending on timeing you might be a
  23. hey norcal, i have not fully read the replies. my ds9 is more sensitive and worried? than my other 2. So i have concerns and sometime have to deal with talking him down(out of being stuck) and something that he might be fixated on. It's not to the degree you are discussing, but it concerns me as i see it lurking around. I don't know remember the age of your ds. i don't know your financial situation. Can you get him to actively participate in searching for another camp or similar trip? Shifting the expectation to the future and out of the current moment of his sadness, from how things s
  24. For some with tics..i have heard of flares with chlorine. Not for All. for ds it varies. obviously trying to live clean, chlorine would be a contrary toxin. per another friend with lymes that has been treated, they said after using bleach with no gloves..the joints in the hands/wrists, started to hurt that day and then the rest of the joints in the body started to hurt over the next couple of days. took about a week to clear. this person wonders if this was some sort of herx that some panda kids might experience from swimming in pools???????
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