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Posts posted by faith

  1. smarty,

    what viral med are you using?


    we've been doing an antifungal regimen (enzyme, flucanazole and neomycin, and high pre and probiotics). it seemed okay for first couple of weeks, but after more than three weeks and entering california for vacation, OMG, my son's vocals are off the wall, almost non stop. I don't know wht this is due to. if it is herx due to die off (we have been using bentonie clay and activated charcoal, but doesn't seem to make a difference), .... would it be this long? i have backed off the regimen to see if he calms, but after a week, he is still going strong. I don't know for positive if yeast is his problem, i just wanted to try per our DAN doc.


    SF, would you think this type of symptom could be herxing even after all this time? I would think it would be a few days, but this is terrible. I don't know if it is because of the antifungal or what. but I have to back off and try to calm him. could all be coincidence, it didn't start right away, only after more than threee weeks. no other symptoms, (i.e. flulike, fever, nothing)....he is fine in every other way.


    sorry to hijack, smarty, but maybe we can use my example to figure some things out. if anyone has any insight. I think I am grasping at straws right now. I've backed off, used only probiotics, and only the bentonite/charcoal on some days in CA while trying to figure this out. I really don't know what to do here.......(we are not on any abx at thist time and havn't been for some months.)......I have a feeling I may have moved some metals around with the enzyme, It has EDTA in it, but not alot.


    I am about to give up and die...... :unsure:

  2. Fixit,

    you could peruse the TS board, there are many old posts with talk of allergy treatment and shots, I'd say its mixed reviews. some say it didn't help much, some think it may have triggered some tics. I have had environmental allergy testing from our Dan doc who is an immuno on my son a few years back, and the allergy treatment was a nasal spray with the allergens in it. I didn't feel it did anything remarkable in the long run, so we abandoned it after about a year. it did not eradicate tics, which we were honing in on at the time. what it has to do with Pandas, not sure. Does your son show traditional symptoms of allergies, such as respiratory, nasal drip, etc.? I feel like I keep hearing about sinuses from dr. b. patients......

  3. Pat and Betty,

    could you tell me more about CA allergens? anything in particular that is prominent in SoCal this time of year? Is it just pollen in general or some tree or plant in particular? would mold be in the air too? if it was this, how long since being back in NY would you think he'd calm? its been two days and he's still going.


    Betty, I've been down the pandas trail and we've done abx, not clindomycin, but others. With this antifungal treatment, along with the flucanazole, we were also given Neomycin for the bacteria, so maybe tht is the same thing?

  4. Faith,


    Fluconazole is a good antifungal in the "systemic" category, meaning it gets absorbed into the bloodstream and goes all over the body to treat the the fungus wherever it may be. Because it does get absorbed, it is work for the liver, and people doctors like to monitor liver enzymes if given over an extended period of time (months). Nystatin is a great antifungal that does not get absorbed, so safer, but only works in the digestive tract, because it doesn't end up anywhere else. I wasn't so much wondering why not nystatin instead of fluconazole, but more wondering why not both. Yeast/fungus sure do love the digestive tract.


    Have been wondering how things were going for you lately, wishing you well, haven't seen you posting so much recently, wondering if I missed something as I was kind of gone from the board for a couple months. Have you had a really good work-up for lyme by someone specializing in that? I think you live in one of the areas where there is a lot of that.


    The enzymes for biofilm can be very helpful. Not just yeast and bacteria, but heavy metals like mercury and also lyme bugs too. Lots of stuff in there, perhaps with releasing heavy metals from the biofilm, you may want to consider some kind of binder to help eliminate them rather than recirculating them.




    I'll have to ask about nystatin when we have our next follow up. I did get the impression that the enzymes targeting the biofilm could stir other things up, so maybe that is at play too. but how long does this go on? if its gonna stir things up and keep stirring things up, metals, or whatever, then I don't see how we can get thru the treatment. I've been using bentonite clay and activated charcoal for purposes of getting out the toxins released, but guess its nto helping. .....we've had lyme testing via western blot, but all is negative.


    how are things going with you Michael? are you done with any of the treatments you've recently persued? I'm still not knowing definitevely where we stand, I think I've given everything a fair shot. I just have to brave the rough spots and be realistic at the same time. i'm managing, but it does get tough when our vocals are up, which is what is happening right now.

  5. Hello - reading of probiotics and was wondering if you've ever tried the Garden of Life supplements? Its tough getting my son to eat any vegetables, so this is my avenue. I make a kefir shake with it and I think it has helped him a lot.


    thanks, havn't tried this, I always felt my son didn't do well on high supplements...are you saying your son's tics have gotten better since using this sup? or is it the kefir?

  6. deby,

    it seems it is vocals for us that wax and wane too, altho I can't pinpoint exactly what the triggers may be. we have recently had a vacation in California and I'm wondering about allergens in that environment. How long does the increase last when exposed to these things? would you think that a couple days back home should calm things if allergens were the problem?




  7. I think all I can do now is be strict on the dietary for a couple weeks, its almost impossible, but I will do it. I've had good advice from Caryn re diet being a big part of the antifungal regimen, so I know how important it is to not 'feed' the yeast. now of course, I don't exactly know if its there, but since we had tried some abx from looking at the PANDAS angle, it was certainly possible. The DAN said at the recent Autism conference, they heard some talks about 'biofilm', and that it is like a defense mechanism of the yeast and bacteria to survive. I'm guessing testing may not prove or disprove anything. don't really know.


    Yes, cp, you are reminding me that we've said August causes some problems for us, but dang if I know what it is. What did you make of your son increasing on probiotics? you just stopped? did it make you feel it was a problem (yeast) but you just couldn't tolerate the regimen?


    Patty, interesting about the allergens and California, I didn't even think of that, a change of environment, I suppose its possible, but again, what? The DAN says the cortisone would help to see if it is due to inflammatory or allergens, and then we will persue that. we did have environmental testing with him a few years back, it didn't show anything remarkable, some moderate things like molds and ragweed? but we even tried the allergy treatment and i didn't feel it helped much. quercetin, yes, been there. problem for me is I think I've reached the end of the road, think I've tried or persued just about everything. btw, I don't think the cortisone is like prednisone, not a steroid. its like what some get for arthritis, not sure, I gotta do a little research here. But, I am pretty sure I will not agree on it, I just don't like taking chances here.


    Michael, why do you wonder about nystatin as opposed to diflucan (flucanazole)? for some reason, this seemed to be the regimen they use, mainly for autism, but we are following it for tics. do you think I should ask to change to nystatin? the reason I wanted to try this out was because from my research around here, it seemed like several had some success when doing nystatin, so I felt I needed to try it too, since I never really honed in in yeast, did probiotics, but at low levels.


    I have told my son he had better cooperate for a few weeks, even my husband is on board. I havn't given natural calm or epsom baths for some time, but I've started those today. I don't think it will end it, but I'm hoping to get this waxing back down to a manageable level. I am sure he was not like this before we left for California.


    I hve backed down on everything the last few days, but he's still going. its pretty unreal.



  8. hi all,

    we're having a very big waxing on vocals here, they seemed to have changed to a squealy high pitched "ooh" sound. I have had my son on an antifungal program (enzyme to break biofilm, fluconozole and neomycin for yeast/bacteria, and high probiotics).. I expected die off, but after three or four weeks on this, he's still going, so not sure if its all coincidence, big die off, or maybe this stuff has aggravated him, or maybe yeast is just not his problem. we havn't had any testing for it, DAN doc says its not that useful because the biofilms protect it and the tests will show negative. sorry for those that are newish and don't understand this lingo, but I am in a realy tizzy here. we just came back from California vacation, so alot of excitement with theme parks, lack of good sleep, junk foods, soda, etc. my bad, I know, but I have kind of abandoned a strict diet due to my son's underweight, but I do know when to curb it, I am guessing it was just too much for the bucket, all this. but he started the vocal pretty much the first day, so not sure what's going on. (he always has vocals, but I mean it got way worse, more noticeably frequent).....


    I called the DAN and explained, he said he thinks there should have been some positive effects by now if the antifungal regimen was helping. I did stop a few days wondering if I backed down on it, that the die off would back down too, but he's still squeaking away, prettymuch every five seconds. if it were September, I could not send him to school like this. .... What the DAN doc suggested was to continue, but at our next visit he wants to try a cortisone shot? oh my, not up my alley. anyone have any experience with this? he said its to see if it helps, then we will know if his tics ar result of some allergic or inflammatory response. I know I am going to chicken out on this. I'm desperate at this point, but allways afraid to give something that may actually cause increase, what if this does?


    any experience here with cortisone shot? please help. I am running out of options. thanks.



  9. How long does it take your child to improve on abx if they are going to? I know each case is different and your actual mileage may vary. :-)


    Like you said, it varies, but I would give it at least a month. But, you have to make sure she is not being re-exposed. My son will still react to family members even though he has been on high dose Augmentin for months



    For matis mom,

    I'm having a hard time understanding this aspect. if one is on high dose abx, and it doesn't even stop them from reacting to someone who is a carrier, then how could the abx be considered effective? what is the point then of doing these abx if it doesn't actually prevent anything? not directing this at you personally, but since you stated this, just asking the panel what this means. to me, it means abx are not effective. I've seen a few folks here claim the same, so again, how do we know that 'carriers' or whatnot is the trigger for the upswing or reaction in behaviors/symptoms?




  10. mum,


    When my son is sick with cold or virus (fever, vomiting) his tics actually DECREASE. I have seen this many times. I don't think I've ever seen a spike during the ilness. Like if he has a vocal, when he is sick for a day or two, it always decreases to almost nothing. Now AFTER the illness I suppose is another story, somehow they do reappear, but not worse or something new, just sort of returns to the same way it was.


    you could do a search here, I know others have reported the same. we've discussed this before around here somewhere, perhaps you can poke around or do a search.



  11. AshQuinn,

    The symptoms you describe sound as much like candida/yeast as anything, so I would investigate this before jumping to conclusions re PANDAS. If your son has had strep, I am guessing he was treated at the time with antibiotics? if so, its possible this could have contributed to candida and yeast, as most antibiotic treatment does. I'm not sure if a regular pediatrician would know much about how to treat yeast, but you can peruse this board and the tics/tourettes section for info, and possibly connect with a DAN doc or naturopath. Since you state stomach pains as part of his symptom, that may be a clue right there. Do you give probiotics? I would look into that. yeast treatment may involve antifungals or more natural treatments such as grapefruit seed oil, oil of oregano, etc.


    Also, please make sure that he is not on any meds for adhd that could cause these symtpoms as well.





  12. (((CP)))

    I can't tell you in words how happy I am to hear all you have said. I am so proud of you and your son. to see that you have so much joy at this point really gives me so much hope. sometimes I lose it, I admit, but you are helping me to hold onto it a little longer. I am grateful to have you too. thanks for your joyous posting...





  13. Not only is it possible, but I would say its definite!


    I was going to post my own take on this, but saw your thread, so I'll just tell it here. I have mentioned several times here that I don't restrict too much for my son these days as his weight is just too low. I am a firm believer in the artificials, colors/dyes/flavors and especially high fructose corn syrup as being things that can contribute to increase in tics. I don't think it affects my son until he's had too much tho. And I can tell you that I am now convinced after the last few days. He has been having those stick freeze pops like they are going out of style, and the days he has them, I can see he was increasing alot, and it was confusing me because he seemed better in the days before. so I've gauged this and I see now that these ice pops are evil as all heill, I know its the problem. He's been having them since 4th of July, (yes, I'm the dummy who bought them), and I could see he's been pretty vocal all week. So today I banned them, and I'm telling you he has decreased almost dramatically so, and I dont' use that term freely here.


    So just say no to freeze pops!.................. :mellow:

  14. mommynme,


    first thing I am going to say is that there is a very good chance that this will not get as bad as you probably fear right now. I am in the same shoes as you, I have minor tics and know that I had a few as a child, despite my mother not really remembering this. my son is now 11 and I have been thru more than seven years of tics coming and going, some rough times, yes, but never as frightful as I once feared, fear of the unknown is the worst....


    that said, I agree with the others, look into all you can, you're already having a great start poking around the net, but please don't get so crazy that you will try anything without doing thorogh research on how it could affect your child and the side effects, etc.. I would certainly look at alergies and sensitivities and you will be able to get a handle on things that possibley trigger your childs tics to increase, I don't necessarily believe that it or anything per se is the actual 'cause', but certainly these things can exacerbate things and by eliminating them, the tics can be managed to a better level.


    try the natural means first and see the docs you can,...if you feel you want to check out the PANDAS connection and if strep has triggered exacerbation, by all means to a trial of abx if possible. but I dont' think it is the total answer, and i don't think parents should get so wound up and convinced that abx is the fix...I have searched this out myself, and if antibiotics don't cut it, I think continued usage can cause further problems, i.e. candida/yeast...so please search into all this with caution. I believe that those predisposed to tics may certainly be exacerbated by strep or viaral illness, but again, I am not completely convinced it is the total issue.


    If you decide to try any supplements, those come with caution too, as some may cause increase for reasons unknowsn, such as fish oil, some kids just don't seem to do well on it, so it is all trial and error. Try to come up with a dietary and supplement plan and stick to it and see how it goes, but I would try things one or two at a time. If you can see a DAn doc, they can be very helpful, hopefully find one that is an allergest or immunologist as well, as the visit witll be covered by insurance if you go in as a allergy patient.



  15. hello mum,

    I have dealt with the head shake tic when my son was about 7 or 8 (he is now 11).....I can tell you it seemed to last about two months. I beleive he did it another time after that, but it was short lived. he currently does not have much in the way of head tics, altho I do see some neck stretching while on the computer it seems. my son's tics are mostly a vocal sound for now, he's had that for a few years now, the other motor tics are come and go.


    I feel that when a tic like that flairs, I tend to look at something possibly that he may be consuming alot of that is triggering it, namely too much high fructose corn syrup in foods, or artificial colors/flavors, ..think Feingold diet. garbage in our foods can have an effect on our nervous system, especially those with neuro problems. So maybe examine his diet and see if there is something that you think he gets too much of, for us it was a reduction of high fructose corn syrup, I recall he was having syrup on pancakes every morning and lapping it up, so once I took that it out it did seem to calm....now I only use pure maple syrup...altho he does get high fructose corn syrup in other foods, I don't really watch that to much now as he doesn't have any noticeable motor tics, and his weight is very low, so I just can't watch his food intake right now. his main tic is vocal and reduction of those junk foods don't seem to help the vocal.


    I really think this will pass soon, I have read of others here who have had that tic come and go. do a search at the bottom of 'head shake' and you will find another thread we had a while back on this for some other replies.




  16. Lisamarie

    How old is your daughter? may I ask what the differing views of your psychiatrist is? if what is going on with your daughter is fairly recent, I don't think its a bad idea at all to see how things go, I would not jump into anything and cut off your psychiatrist. it certainly is possible for things to come down from a recent illness, if it is strep or viral. do you know for sure if your child was sick with strep recently? what is the recommendation of this psychiatrist?


    I think some people here make the mistake of not taking other doctors views or opinions into consideration, ...it certainly is up to the parent to decide who treats their child, but I'm sorry, just as some may think saying see ya to the doctor who doesn't agree with what you suspect, it doesn't mean that the doctor who tells us what we think we want to hear is necessarily the right option either.


    wht will dr. b. do with these tests once he sees the results? it will only convince him, no one else. what is the basis of his plan of treatment? does he have a one size fits all approach? I think you need to fully know what is going on with your daughter before you make any decisions on treatment.




  17. I've never realized this is (could be) ocd. NOW I get it. My son does this all the time. Esspecailly about wanting stuff. He will try to get me to commit to stuff, even if it is a year in the future. Stuff he knows he will never get. He harasses me over, and over. We call it badgering. When he starts I give him a bit to see how far he will take it, "I've answered you ten differnt ways, now you are badgering me. Let if go or I will have to stop playing and go inside" (becasue - I can't stand it anymore and I'm going to loooose it!) I don't say that part...ok.... sometimes I do.


    I've just considered him an excellent and persistent negotiator. But it goes way beyond that - I can see now how it relates to ocd. Soemtimes he can't let other things go either - if he feels wronged in some way, like somethings unfair - he has a very difficult time moving on - he obsesses over it.


    I think it falls into the category of being inflexible. He's stuck on something - like classic ocd - only he's stuck on something he wants, or somehting that happened that he didn't want. Control-issue ocd. He doesn't repeat the EXACT same thing over and over (he will approach it from every angle he can think of), but he is stuck none the same.


    He has another weird one that we didn't know was ocd either - he can't stand to hear or see me or his father swallow anything. He is very controlling about it. Basicaly, we aren't allowed to swallow in his presence, or he losses it and will rant and rave for 5-15 minutes. This was his first big symptom in hindsight. We jus thought he was starting to be a preteen pain int he you know what at dinner time - he and sister would get comptitive about who had best table manners "don't talk with your mouthfull - you are soooo disgusting" thats how it started. Then when other symtoms started we thought he was jsut sensitive to noises, maybe sensory intergration disorder, because he was a bit more sensitive to everything(extremely irritible) - but the swallowing thing took on a life of its own.


    norcalmom, wow, the first three paragraphs is pretty much what I would describe for my son too.


    and the swallowing part, just replace it with me or my husband humming (however inaudible), singing a line, or even saying a big word or catch phrase that he never heard before.....he gets freaky about it, exaggerates his irritation of it.......but this doesn't really occur with anyone else but us, and mostly me....... :lol:


    and tantrums, that's very familiar too, questioning something twelve different ways....."am I punished?" (I answer no).... "can I have a second chance?"...(I say maybe)......"as of right this minute, am I still punished".....and on and on until he hears what he wants to hear and must need to clarify it in stone......ack....

  18. Phasmid,

    I think what your doc means is that its meaningless to 'him', and we can't blame him for that. Also, we all have to remember (unless something has changed) that these numbers are still not yet with conclusion, Dr. Cunningham is still compiling data. Yes, it is said that they have seen the numbers for cam k be in a certain range for the test subjects in the past study of Swedo of kids with tics and ocd, but what they are doing right now, is seeing if there is a trend, and if this holds true for kids who are now being enrolled in this study that hve the same symptoms. I think its fair to say they don't really know what the total outcome is going to be. they may have an idea, but its not published, so I don't feel any doctor not in the know of this should be compelled to give cam k any weight. Dr. Cunningham herself, I do not believe will be able to say to any doctor that this means the child definitely is has PANDAS.

  19. deby,

    just my two cents, if abs don't seem to be working, you could try a little longer, but I am starting to believe that yeast becomes a problem on top of things, so working on the yeast part of it might be a good idea. at least give high dose probiotics in order to not let the bad yeast take over when the good yeast is also killed by the abx. PANDAS or not, I am believing that abx are not the only answer.

  20. I understand what you all are saying, but I am wondering, PANDAS or not (I mean, whatever the child's issue)...why call attention to these problems to the school if its not an issue? kind of like the 'if it ain't broke, don't try to fix it'...... I kind of feel once a child is pegged in some way, it kind of carries with them and just puts them under a microscope, almost like they will start expecting this behavior or magnifying something if they see it, just like if someone gets in trouble a couple times and is labeled a troublemaker, then every time something occures, it will always seem that kid's fault because he has a 'history', regardless if it really is his fault this time. I don't know, just saying, not sure why some feel the need to convince any teacher of anything. My son has tics and ocd, and I've had to address this yes, but only as it pertained to how it affected him at school. ... Does my son have way more issues at home, better believe it, but I don't think I want to describe this to any teacher, don't mind talking amongst ourselves or with other moms, but I feel the child's privacy should be protected and I don't need teachers or even other parents thinking I'm making excuses for my child. its a bummer if that happens, so I don't even go there....if teachers don't know my son is royal pain in the azz, I'm sure not gonna try and convince them, :ph34r:^_^

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