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faith

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Posts posted by faith

  1. Since Dr. Fallon is one of the most respected lyme experts, of course the instinct is to tell you to trust his judgement. I don't know how long ago your son was evaluated, and if all possible infections were tested for. But if it were me, and my son was still not resolving his symptoms, I would get a hold of Dr. Fallon again and essentially ask him to confirm whether this would still be his opinion. I don't know if your son's symptoms have evolved since his last visit with Dr. Fallon.

     

    Mary

     

    Hi,

    I kind of have a question here.I'm thinking if the lyme test was negative, and you are saying that if your child's symptoms are not resolving, to ask opinion again....why would you assume it is lyme? I am guessing this parent has a child initially diagnosed with Pandas, or at least tourettes or something else? I'm just wondering why you would think it must be lyme, no matter what the results of testing is.

  2. I'll go with giving the advice of eliminating milk, since you say he drinks alot of this and has a vocal. My son also has a vocal tic that waxes and wanes, but is always present in some for, but I beleive I see that milk seems to contribute to it. I haven't been vigilant about other forms of dairy for a while because he is a little too skinny. but its a good start for you, i'd be interested to see what happens when eliminating dairy. you could always add back in individual dairy like hidden dairy first, cheese, etc. but I would eliminate the actual milk first and foremost and see what happens.

     

    good luck, let us know!

     

    Faith

  3. CP,

    so how long now on the krill?

     

    I don't recall what exactly the reasoning is, but something about the DHA having to do with dopamine maybe and that is not good for the tics? i gotta poke around for some old posts, probably on the ones where the talked about Omegabrite? can't recall. but for some reason, what stuck out in my mind was that higher EPA than DHA was better for our kids....don't quote me, but it was the conclusion from what i read, and that was some time ago.

     

    what is the brand you are using? did you ever do krill oil before this? i know you were using salmon oil? did you wind up stopping that?

  4. hi cp..... :)

    update on the krill oil? does it have a ratio of epa to dha? just curious.

    i recall we came to conclusion a while back that higher epa is better for ticcing kids? just wondering. do you notice any improvement in attention with this? i am despearate in that area with my son..... :mellow:

  5. I see there is another topic about this, but I've been upset since watching the special on Tourettes? My husband didn’t want me to watch it, but I did anyway and I haven’t been able to sleep since.

     

    In my opinion, there was nothing inspirational or helpful about this program. All it left me with was a feeling of helpless/hopelessness. I have been able to deal with all of this based on our neurologist telling us that most TS is mild and manageable. I did not think that was the message of this show.

     

    To sum it up (and I'm paraphrasing), they basically said it’s neurological and treatments are ineffective, other then the one child that had deep brain stimulation (so scary to me). They also said it typically starts with eye blinking, and then transient tics and then full blown TS that progressively gets worse. They also said rage is a common part of the disorder.

     

    Is this the progression experience of the people on this board?

     

    Don’t get me wrong, I truly felt sympathy for these families and know this is the reality of what they deal with. I just wish there was some positive outcomes included or more about alternative therapies. Why is it so hard for the media to include encouragement in their documentaries?

     

    Kelly,

    just to note, i did watch a little of that show, and beleive me, in the past I would be too terrified to, but I was curious, altho of course, i did not want my boy to watch it.. i wouldn't want him to be scared in thinking that could happen to him too.....

     

    I don't think the intention of the show was to give medical advice on how to treat, but really more of a 'day in the life' type thing of these particular kids. I did note however, that the doctor or whomever it was speaking in cameo during the program, DID state that "most cases or tourettes or tics are mild enough not to warrant any medication or medical intervention, and that there are many people who have minor tics that go un-noticed. So basically, just pointing out that I don't think the program was necessarily to show what tourettes actually IS, but just the way it manifested in these particular children, and of course how they are coping with it.

  6. hello cagirl,

    stress in any form, mental and phsyical can of course trigger tics.

     

    have you tried poking around the forum for some ideas? magnesium is always a good start, some here like a product called Peter Gilliam's Natural Calm, a magnesium powder you can mix in juice. you could google it, the site has some good info on magnesium and its uses. Eliminating junk like too much candy, caffeine, or artificials like high fructose syrup in obvious forms, along with red and blue dyes in packaged foods, can also make a difference in some kids. its worth a try, .. see if it makes a differnce.

     

    good luck

    Faith

  7. 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.

     

    Faith

     

     

    Hi Faith,

     

    This is my first post although I have been reading the Tourettes/PANDAS boards for quite some time. I always promised myself that I would write in and tell my story when I finally had something valuable to share with others that worked. Unfortunately, until very recently NOTHING has. To make a long story short, my dd6 was diagnosed with Tourettes 1 1/2 years ago and finally with PANDAS 1 month ago. Like your son, her biggest/only major problem is a vocal tic (sounds like a cross between a loud hiccup and a cough). When she's waxing she does it every 3-5 seconds (the sound drives me NUTS). Her only other issue is a very mild sensory issue with clothing (things aren't tight enough). I tried soooo many things to help her. We tried Natural Calm, NAC, taurine, fish oil capsules, probiotics, multivitamins, NAET for 1 year, topamax, Nystatin powder, and a very extreme and strict anti-yeast diet that has left me a slave to my kitchen as I have to prepare everything for my daughter from scratch (and trust me I'm no Rachel Ray!). Despite everything we have done we have seen NO improvement in her tics! She reacted negatively (tics always spiked)with every supplement/therapy we tried. As a matter of fact, after doing all this for 1 1/2 years she seemed to be getting worse, not better. I was feeling so depressed and desperate that nothing worked for her and I was "killing" myself for nothing. Thanks to all the advise and awesome information on the PANDAS board I took her in to see a recommended Dr. in Irvine, CA just to run some blood tests (her tics started around the same time she had a sinus infection) and he wound up diagnosing her with PANDAS. I was shocked as I really didn't think she fit the PANDAS profile. We did some blood and urine tests and found that she had elevated anti-DNASE antibodies and despite being on the anti-yeast diet and Nystatin for 1 year her yeast levels were still very high. Now you should know that she was only on very minute amounts of Nystatin because even at the lowest dose her tics spiked so much I had to stop (we tried lowering and increasing her dosage for over 1 month and everything made her tics worse). Her urine test revealed that she had very, very high levels of HPHPA which are clostridium markers. I have no ides how this happened and she showed no signs of it (diarrhea or stomach problems). I would have never known she had any clostridium issues had it not been for this urine test. She is currently on Azith 5ml 2x/day , Flagyl 2x/day (for 2 weeks) and Fluconazole for 2 months. She has shown GREAT improvement (I sure hope I'm not jinxing myself here!). I think the Flagyl is what really helped. She was on the Azith for 2 weeks before we started the Flagyl and it wasn't until I added the Flagyl that we saw the improvement. I know someone else wrote in about possibly checking for bad gut bacteria and I think it's a good idea. I don't know if anything I wrote is of help to you but treating for clostridium is the first thing that we have done that has given us some really good results. I'm so sorry for what you are going through and I hope that you will find something to help your son soon!!

     

    Caring Mom

     

     

    caring mom,

    wondering how things are going re the flagyl....are you still giving that? you mention your dd doing well on it and seeming to help? has that sustained? how are her vocals now?

     

    we are still struggling with vocals here. i did try one day of flagyl about a month back, but imagined an increase in vocals, so i did not continue.

     

    thanks for any update or advice you could give. where did you get those urine tests done that showed markers for clostridium?

  8. trish,

    just to clarify....re the fish oil...did you mean that you started the fish oil and he seemed to be doing well. so the fish oil didn't increase tics from the first day, right? and you feel gluten free may be helping? you are doing both at same time, is that what you mean?

     

    could i ask what brand and dose and what the ratio of epa and dha are? i want to try again with fish oil, but always feel me son has tic increase on it, so i've not used if for a long time.

     

    thanks

  9. hi tantrums,

    I think I can relate to what you are asking and wondering. your son seems to have much of the same symptoms as mine, minus the rages, altho i might say he had tissy fits when younger, more of an 'I want MY way' type thing. (he is 11 now btw)....

     

    I also saw tics as young as 3 1/2. we have no high titers ever and he ususally tests negative for sterep. we'v also explored PANDAS and have seen the PANDAS docs and have done abx, despite not really knowing where we fit in. that said, we were given the steroid by one of hte docs, and ultimately, i opted not to try it. i was afraid of jus what you are reporting, as i had another member tell me of her experience and it not being good. so i can't give a comparison to that, but just wanted to say i did not wind up doing it, it was my choice and glad i made it because really it would hve not been anything more than a temporary fix from what i am seeing by others experience.

     

    I agree with Chemar above that some have a predispositon to tics or tourettes if you like, or ocd, and of course can either just be exacerbated by strep or some other illness, or come to develop a full blown autoimmune reaction, thus PANDAS.

     

    I understand what you are saying, becaue no matter what they call it, there still has to be a course of action, (or not)...and does not mean whatever is supposed to work for it, will work.

     

    I have been on this road for a while (tics mostly and some ocd)...I am not positive any one doctor can address it all. you may have to do piece work, something from doc a and another from doc b and yet another from doc c...all which will be trial and error. there really is no set course for these clinical dxs.

     

    Could I ask what you may have tried in the way of natural means, diet, etc....(not for pandas, just for tics and symptoms)..

     

    thanks, i would love to talk to you more, have to run now but i'll check back later on....

     

    thankis

    Faith

  10. Philamom, thanks for the reminder about waiting 4 weeks after IVIg. Our last IVIg was in March but we are trying to do another infusion soon, since plasmaperesis is off the table for now. I will make sure we run the test first. Great news that your insurance covered it 70%. I have a PPO so they should cover it (I hope!). That will make the cost more palatable.

     

    Faith, a physician must sign the test requisition form. I will have my pediatrician sign it next week when we see him.

     

    Nancy

     

    thank you nancy. you say your pediatrician will order this? he agreed to it already, or you don't know yet? did he say he agrees with you using this company for testing for lyme? does he think your child could have lyme disease?

     

    philamom,

    you say your insurance is covering 70%? that is probably 'out of network', correct? for others doing this, don't forget there is a deductable to be met first with out of netowrk, and its usually 500 dollars or more.

  11. thanks for your long post sf. listen, i don't know what your problem is....if you have found what you think is at the root of your child/children's problems, great and thank the Lord. if others are helped by this, again, Praise the Lord. SF, YOU recruited me to this forum for pandas and encouraged me to look into pandas, so perhaps I have a little moment of confusion when you were so staunch about me seeking pandas docs and ivig....ultimately I decided it was not for us as yet. You were 100% adamant and confident taht your child had pandas and that ivig helped him immensely, 98%!!!!! said you. And btw, the pandas doctor that treated your child? it is Dr. K., corrrect? have you consulted him on any of this? I'd be interested to know what he said......and one other thing, and really sorry to put this out there, no offense, but $40,0000 i don't hve to spend on anything 'controversial'...never did and never will. thankfully you do.

     

    so if I (and I am speaking only for myself) am a little confused on the information you are now providing others, sorry, but that is my common sense speaking. just the fact that you were so adamant before and are now...what? ... conceding that you may have been...wrong? is that what you are putting forth here? well, then...is it just a tiny bit possible that you may be .. umm...not so correct now?

     

    listen, I beleive that you wholeheartedly beleive in what you are writing and saying. I have my own opinions, and yes, i am scratching my head here. I see alot of "I beleive this"...and "I beleive that"....and he thinks this and he thinks that. could be, possibley, but it is NOT fact, and because you thihk it does not make it true. please be careful. you may put forth what you like, and I am grateful, beleive me I am. I am not trying to cut you down. but I do have my concerns and doubts. and when I read information, I usually have the mentality of "take it from the source"....I am not sure why you and some others are so adamant about some of what you have 'beleive'....

     

    If you want me to lay my cards out on the table right here, I will. love it or hate it, i truly don't care, i am not here to convince anyone of anything. but 'you' have lyme, and you gave it to your children? is that what you are saying? you have put forht in another post about lyme being sexually transmitted? there is no evidence to back this up. you and your doctor can 'think' all you want. and as far as passing lyme 'in utero'.....it may be possible, but what has been reported is that those babies died shortly after birth or were stillborn. listen, you now have lyme, mrs. johnson has lyme, my aunt tilly has lyme. i am sorry, but the coincidences here are just way too much for me (personally). it certainly be the case for some, but once again, NOT ALL. there is no way in God's creation that every parent here whose child supposedly has PANDAS, gets them tested for lyme, and comes out positive. (thru Igenex only)...wow. to me, that is way unbeleivable. almost everyone here? so lyme is the new pandas? everyone here has lyme on top of pandas? everyone had lyme to begin with, and now we are unfortunately getting pandas? has everyone on God's green earth been bitten in the azz by a tic? i find the coincidence alone, astronomically .......unlikely......

     

    Everyone deserves information, but SF and the lyme moms, you are being unfair to suggest, no INSIST there is some sort of lyme conspiracy or epidemic.

     

    Once again, my child is not sick enough for me to beat this horse to death. i have had the lyme testing thru our DAN doctor thru Western Blot. I am grateful to have found the information here. yes. thank you thank you......but we were negative for everything. I am not telling anyone here they do not hve lyme, my message is that omg, it just cannot be that every pandas child is now getting dxd with lyme. my personal beleif? and take it or leave it....we are desperate parents....and those that are not feeling their child is well enough for thier satisfaction will, yes, follow the devil himself in order to get their kids well. me? no one here will be congratulating me for going the distance, because I choose to draw the line when giving my child powerful meds and cocktails of antibiotics (some that have the potential of causing cancer) in order to eradicate a few tics or whatnot. again,if my child were way worse and unmanageable, i might succumb. but I prefere a live child to a dead one.

     

    sorry, that was harsh. but now "I" am being adamant. I would really prefer not to go back and forth here, so please everyone, just take what you like from this thread, or don't. i have my own feelings and opinions, always have. i am just a parent/poster here. don't have a website, don't have a book, don't have anything to prove. but I highly resent some becoming the 'experts' here. no one here is.

     

    Wendy, truly good luck to you.....I even know that if I have questions or need help in the future, you will be there to answer, i have said that of you before. really no hard feelings. but you have a way of getting in the ring with anyone who does not share your 'current' point of view.

     

    regards

    Faith

  12. Good Morning Pacific Mama, it seems like you get angry when someone posts something that is not in your line of thinking? not fair. this is a message board for ALL parents to speak. pmom seems to have personal experience with lyme, being diagnosed AND treated, perhaps to no avail. she's been thru it, and i can assure you knows something of what she speaks. I for one am very interested in her posts and what she has to say. i respect an informed point of view.

     

    why are you so sure about the information that you have? you may speak for your experience only, but there are other views and two sides, and in my personal beleif? everyone here deserves to hear all sides, not just the 'pro-active' lyme discussion that you are giving. i am not pointing just at you, but your post to pmom is way out of line.

     

    why is she researching Dr. Jones? why would anyone research any doctor? because they want to make sure they are putting their child's life in good hands. please take no offense, but common sense here, you are just a poster on a message board, and fine, your opinion is well taken, but someone who has something 'else' to say should also be respected, and posting that point of view is not to discredit, but to give 'another opinion'...(all are welcome btw)..

     

    I've done MY research, AND have spoken to several of the PANDAS doctors mentioned on this board. I have gotten satisfactory replies that Igenex is NOT their choice of Lyme tests. Frankly, I am not sure where people are getting the info that Ingenex is the best test out there. and the suggestion that all the kids on this board who are supposedly Pandas, are now being diagnosed and treated for lyme? 'interesting' is the only response i can muster up... perhaps some should do their own research... why?? because your child deserves it. period.

     

    I mean no disrespect to anyone here, i am a longtime poster, (as is pmom) and many here know me, i am not out to cut anyone's opinion, but to cut anyone else down because the do not share YOUR view is just plain obnoxious.

    have a nice day. .. -_-

  13. hello soccermom,

    Did you wind up keeping her off the intuniv or kept at it after the bad day of tics when trying to take her off it?

     

    did you wean slowly, or cold turkey? just wondering. even if it wasn't helping absolutely, perhaps just the spike in blood pressure, her system had a little jolt of withdrawal and that is what caused the spike, not necessarily that the med was doing much.

     

    I have had to recently succumb to trying out the other blood pressure med, clonodine, as my son had a terrific spike in vocal tics while on a recent vacation. i am not sure if it is helping a little, or it is just natural waning. it is not gone by any means, but not as crazy as it was a few weeks ago. i am not sure what to do either. he is on the full dose this week, no side effects, so not sure if I should continue or not. but as you say, school will be starting and I am petrified. my son is 11 as well.

     

    btw, I asked for intuiv first, but our doc would not go for it, he said clonodine first as there are least side effects. have you seen any side effects?

     

    do you think the omega 3 could be a player in increase in tics? some of us seem to have that efect from fish oil here.

     

    I can't give any advice on the dietary, we are just no good at that here, altho if you can stick to it, it is certainly worth a try. if you need more advice, Caryn on this board is very good at that and will be willing to help you out. search her posts, she has a site called 'healthyfamily.org' and she has lots of good recipes for this that might help you out.

     

     

    thanks

    Faith

  14. wendy,

    you give a lengthy response, i'm not sure I totally understand, but I'll try. my feeling is that I don't understand if your child is so much better, why are you taking the chance of giving him other abx and such. You have been very vocal and adamant about ivig and pandas here on this board. I think what I am saying is that you may be jumping the gun on this and sening alot of folks scurrying around for no good reason. Lyme is not pandas. pandas is not lyme. I dont' care what anyone thinks re co-infections, yes, they could be at play. But my point is that you have given out alot of information re ivig, even when I was questioning it. and now you are going into this lyme thing and feeling like there is something else for your kid or someone else's kid? please forgive me, but there is enough information about lyme here on the forum for those that would like to persue it. I feel you are now giving out alot of staunch information re lyme, the same as you did for ivig. Is your child recoverd or not? i still don't know... I am still way confused as to what your child's dx is and if ivig is the proper treatement? how do you even know that ivig does not make it worse? you are correct in saying to check out other things before doing ivig, but you did not say that months ago re ivig. I think parents should not send others on a wild goose chase unless they are sure of what is going on. sure, everyone give ideas and ask for advice, but I am left very confused on your children's cases and your beliefs about ivig and pandas. 98% better? you need more than that? i'll take it, pass it over here please. All these meds you are comfortable giving your child? how do you know it is not the problem? Its one thing to try things on your children but I do wish you would be more responsible and not steer others that way until you know for sure what and how these meds fare on your child. I mean no disrespect, but there are alot of desperate parents here, and many are willing to follow the crowd, especially when they believe the person who says it knows what they are talking about.

  15. :huh:

     

    I am major confused here.

     

    sfmom, forgive me, but you were the most outspoken about pandas and ivig treatments when I first inquired of pandas. you have a story about five kids on a playdate, your child had kawasaki's. I thought your child was 98% better on ivig. why are we persuing lyme? kawasaki's, lyme, and pandas? is it pandas or not?

     

    I had question after question about the efficacy of ivig, and you and I have had much back and forth about it in the past. So are you saying it did not help your child. sorry, I just don't understand.

     

    I totally understand some having lyme as a dx. or myco or whatever. but just as in pandas, it cannot be for everyone. As I said, I am majorly confused as to where this forum is going. so are you telling me i was right and ivig is not indicated for our kids' issues?

     

    whoever has said that the NIMH has talked about lyme as being a topic is WRONG. it may have been discussed, but it is only ONE of the things to be tested for in the context of co-infections. the topic of the meeting was PANDAS, not lyme....

  16. Megan, hello..

    yes, I am thinking our recent usage of probiotics at a high dose may have contributed to a big increase my son's vocals. I hv backed off, he seemed a little better, but we are going back and forht still......

     

    see my post on the NAET or DAN thread re probiotics, where I have more info.

  17. Hi Faith,

     

    My dd is taking Custom Probiotics (D-Lactate free powder). It has 250 billion CFU per 0.8 grams. I give her 1/4 teaspoon in the morning and one again at night. So she's getting about 500 billion a day (maybe a little less). She isn't on any other supplements or vitamins because she wasn't able to tolerate anything. No matter what I tried, she would react to it. Hope this helps!

     

    By the way, since I started the Flagyl again things are looking very promising :)

     

    Caring Mom

     

     

    thanks, the reason I was asking is because I think I have come to conclusion that high dose probiotics are not for us. from my observation, it seems that since I really upped the dose (30-50 bil per day), that's when the vocals seemed to go haywire. when I didn't give it for a couple of days, he calmed somewhat. so I havn't given it since, BUT, he is still going back and forth with having bouts of vocals. I really don't know.

     

    do you notice any correlation with tics and probiotics? I don't think it is just the probiotics, but I do feel it is HIGH dose that may be a problem here. I have some ideas why, and I'm not sure its all die off, because it should end at some point. I'm going to put more on this on another thread here that I notice about acidophilus, but my feeling is that probiotics are immune boosters and I am feeling like boosting my son's immune system is not exactly a good thing "for him"....dang if I can figure out why. but I have long noted and mentioned here that high dose supps (and aminos) just don't seem to cut it for us, we always seem to experience increase in tics. the only thing I can deduce is that immune boosting revs up his nervous system? my guy is one who does not get sick alot, hardly ever. and when he is sick with fever, he ceases ticcing during that time.

     

    Kim, if yu'r reading, got any ideas here?

  18. oh yes, good point smartyj, the high dose probiotics could certainly be having the effect of die off and herxing.....

     

    it was just going on so long, two whole weeks, ....DAN doc thought herxing shouldn't last that long. but I guess anything is possible. again, all trial and error. this was just too crazy. any other signs of herxing I could take, but this vocal was nuts, and chnged from his usual to a high pitched tone. not convinced it was herxing, die off , or just his system being revved up, as I said, maby boosting immune is not good in some kids. really don't know.....

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