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Everything posted by faith

  1. 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 hap
  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?
  4. yes .. its called "culture and sensitivity".....assuming they cultured the nasal swab.
  5. 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.....
  6. 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 warran
  7. 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 differ
  8. I'm still alive, lol... yes, i got it. seems to be working now. cp, if you can't pm me, ask bonnie........ regards, Faith
  9. 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 dr
  10. 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
  11. 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 afr
  12. Oh be quiet chicago, LOL........ just kidding.... so glad to see you here girlie...... good luck and blessings,
  13. 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.
  14. Do you need a doctors script for this? or can you do it on your own?
  15. 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
  16. 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 a
  17. 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,
  18. 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
  19. 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
  20. 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.
  21. 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
  22. CP, I should be open now, if you havn't got thru..... this new format is a little confusing.
  23. 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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