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faith

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Posts posted by faith

  1. ;) ..... .....It's ALL MICHAEL'S FAULT.!........ ^_^

     

    I'm not going to add much more to this, I see I don't hve to, but thanks for those that understand what I was trying to convey. I know I'm not alone in these thoughts and feelings. I understand we all have our struggles here, and we shouldn't be afraid to discuss them. our kids all have varying degrees of symptoms. I know Dr. Trif has said he thinks that some treatments should be reserved for the more severe cases, and I did kind of get that drift from Dr. L. when we saw her, so I guess I'm kind of in agreement with that in some way. I'm taking it one day at a time, one step at a time. While I am fearful, I admit, I also don't want my fears to cause me to panic and jump too fast on something that may not be the right answer (for my child)..... while I wish more than anything that these treatments are the miracle cure for all our kids, and I don't like hearing about those that have had not so good outcome as yet, maybe in some wierd way, it helps in making some of our decisions or direction a little easier. We really need to know 'all' the facts. jumping up and down shaking pom poms in our hands without knowing the real score doesn't help anyone.......

     

    Wendy.... if I may add....I have no issues with 'faith'........sometimes I just struggle with 'hope'........... :mellow:

     

    hey, group hug at the tiki bar? its two for one nite!................ What!!??........... :)

     

    -Faith

  2. Faith,

     

    I just wanted to say my son has seen continued marked improvement from the treatments he has received and no major set-backs. I think you are over analyzing people's experiences....... sure some have had set backs but marked improvement over initial onsets.

     

    Dr. K has been treating for 10 years now and you would think if he has been continually unsuccessful and didn't know the outcome he'd give up on treating. I just don't want someone new to the boards to read your post and expect worse for their children if they follow recommended treatments. There has been tremendous success with IVIG for many auto-immune illness and do not consider a risky proposition at all given the alternative.

     

    I'm looking forward to our annual check-in on the forum when our son 120% and I can spell out what worked for all of my children.

     

    -W

     

     

     

     

    Regarding pex and ivig-

     

    unfortunately for all of us, the science is just not there yet for our kids. So, to some degree this is all experimentation. That being said, these medications and procedures themselves are not experimental. They seem to work for some kids, not for others, and for varying lengths of time.

     

    My daughter had pex. She was extreme in the sense that she had an overnight onset, and had a lot of trouble functioning in daily life. Getting to school, and enjoying simple things became hard for her. We did antibiotics and steroids, she would improve, and then we would have another trigger. I vowed to pursue treatment aggressively. I pursued pex for Julia with Dr Latimer. Luckily, our insurance pre approved (although are now denying). At the time we went for pex for a few reasons: a family in my neighborhood had great success with it, many who had ivig on the board were relapsing or not seeing great improvement at the time, we wanted to avoid introducing a blood product if possible. This being said, we were, and still are, very open to the possibility of ivig in the future.

     

    The pex showed us the real Julia. She was 110% immediately post procedure. Obviously it was not a cure, because a pandas episode was triggered by H1N1 not too long after. We were able to stop that episode immediately thanks to steroids. I do believe she is closer to her true baseline today, because of the pex.

     

    I have heard Dr T and Dr B's concern about pex for immunecompromised patients. The HemOnc team at Georgetown did immune testing prior to pex, and Julia passed. I am sure if there was any concern for a child, they would discuss it with the parent. What was explained to us, was that pex removes the antibodies (good and bad) from the blood. It does NOT remove the immune memory. According to the docs there, the immune system is back to normal within a few weeks, and if exposed to something in the meantime- the immune memory would create antibodies. How does this differ if you are immune compromised- I am not sure?

     

    Unfortunately, for the milder pandas kids, like my older daughter- the obstacles to these kinds of procedures are great. There are risks, they cost a lot, they are stressful, and there are no gaurantees. So I can imagine for parents of these kids, the constant agony of whether to pursue them or not. Most of the great docs for pandas, will help you get the treatment you want and your child needs. I doubt if any of them will say your only choice is to do this... or you must do this... Unfortunately, you need to evaluate the info, your child's condition, and do what feels right to you. Impossible, I know.

     

    dcmom

    thank you, I think you explain in a nutshell what some of us are up against, and your last paragraph says it well. If my child was severe enough, I would probably move forward on the express train. Not saying he is mild, because we have struggles with multiple tics, ocd getting more prevalent, and all those other fun issues. however, he is functional, goes to school, is bright enough and social enough to go under the radar with most of these issues, altho a waxing of a tic can be somewhat noticeable. I've dealt with this stuff for years, and while I'd love for it to be a distant memory, I think my fear is not that it "won't work", my fear is that I will create more problems and possibly set up a scene for him to actually get worse. Some of the 'setbacks' or 'relapses' for some here (wether re steroid, IVIG, PEX, or whatever) have pushed a few farther back than they were before the treatment. We have good days and bad days here, without those treaments, so I struggle to understand if the reasons for these setbacks are conclusive. I'm petrified (and this is with all modalities, not just PANDAS treatments) of doing something that may make my child worse off than he was in the first place, for sure my husband wiould bury me in the backyard if I pushed for something that is not a guarantee, and the result was adverse. :( You guys know I like to fully understand things before I jump in. I wish we could know wht the right thing to do is, I don't even think these doctors really know for sure what the outcome would be. If they don't know what it will be, how do they know it won't be adverse? the gamble is very frightening to me.

     

    Faith

     

    Wendy --

    :mellow: ......just so many variables here. you are confident. don't forget that not everyone is 100% positive that PANDAS is the case for their child and not everyone is reading almost every post here. I am in information overdrive......... :wacko:

  3. Regarding pex and ivig-

     

    unfortunately for all of us, the science is just not there yet for our kids. So, to some degree this is all experimentation. That being said, these medications and procedures themselves are not experimental. They seem to work for some kids, not for others, and for varying lengths of time.

     

    My daughter had pex. She was extreme in the sense that she had an overnight onset, and had a lot of trouble functioning in daily life. Getting to school, and enjoying simple things became hard for her. We did antibiotics and steroids, she would improve, and then we would have another trigger. I vowed to pursue treatment aggressively. I pursued pex for Julia with Dr Latimer. Luckily, our insurance pre approved (although are now denying). At the time we went for pex for a few reasons: a family in my neighborhood had great success with it, many who had ivig on the board were relapsing or not seeing great improvement at the time, we wanted to avoid introducing a blood product if possible. This being said, we were, and still are, very open to the possibility of ivig in the future.

     

    The pex showed us the real Julia. She was 110% immediately post procedure. Obviously it was not a cure, because a pandas episode was triggered by H1N1 not too long after. We were able to stop that episode immediately thanks to steroids. I do believe she is closer to her true baseline today, because of the pex.

     

    I have heard Dr T and Dr B's concern about pex for immunecompromised patients. The HemOnc team at Georgetown did immune testing prior to pex, and Julia passed. I am sure if there was any concern for a child, they would discuss it with the parent. What was explained to us, was that pex removes the antibodies (good and bad) from the blood. It does NOT remove the immune memory. According to the docs there, the immune system is back to normal within a few weeks, and if exposed to something in the meantime- the immune memory would create antibodies. How does this differ if you are immune compromised- I am not sure?

     

    Unfortunately, for the milder pandas kids, like my older daughter- the obstacles to these kinds of procedures are great. There are risks, they cost a lot, they are stressful, and there are no gaurantees. So I can imagine for parents of these kids, the constant agony of whether to pursue them or not. Most of the great docs for pandas, will help you get the treatment you want and your child needs. I doubt if any of them will say your only choice is to do this... or you must do this... Unfortunately, you need to evaluate the info, your child's condition, and do what feels right to you. Impossible, I know.

     

    dcmom

    thank you, I think you explain in a nutshell what some of us are up against, and your last paragraph says it well. If my child was severe enough, I would probably move forward on the express train. Not saying he is mild, because we have struggles with multiple tics, ocd getting more prevalent, and all those other fun issues. however, he is functional, goes to school, is bright enough and social enough to go under the radar with most of these issues, altho a waxing of a tic can be somewhat noticeable. I've dealt with this stuff for years, and while I'd love for it to be a distant memory, I think my fear is not that it "won't work", my fear is that I will create more problems and possibly set up a scene for him to actually get worse. Some of the 'setbacks' or 'relapses' for some here (wether re steroid, IVIG, PEX, or whatever) have pushed a few farther back than they were before the treatment. We have good days and bad days here, without those treaments, so I struggle to understand if the reasons for these setbacks are conclusive. I'm petrified (and this is with all modalities, not just PANDAS treatments) of doing something that may make my child worse off than he was in the first place, for sure my husband wiould bury me in the backyard if I pushed for something that is not a guarantee, and the result was adverse. :P You guys know I like to fully understand things before I jump in. I wish we could know wht the right thing to do is, I don't even think these doctors really know for sure what the outcome would be. If they don't know what it will be, how do they know it won't be adverse? the gamble is very frightening to me.

     

    Faith

  4. well I gave these to my son a couple of years back (he was about 8) and I gave him the shot mostly after he fell asleep so he wouldn't feel the pinch. so I can't answer to the stinging, but I think I may have read that you could fill the syringe and wait a bit so ints not so cold, and then give the shot. I think that may reduce the stinging, but not sure, you could probably find some reading on that. its been a while for us, so I forget, but I think you could find some info by googling "methyl b shots and Dr. Neubrander and stinging"....., he is kind of the expert on using methyl b for autism. we were basically trying it out as my son did show a deficiency due to methylation of b12, and we hoped it would have a beneficial effect on his tics, but I don't think it did, even after almost a year of use.

     

    Faith

  5. two more questions,

    does your son get sick alot, either in the past or now? hs he ever had immuno work ups? if so, what were the findings? any immune deficiencies there?

     

    also, do you feel in any way that any of the immune boosting treatments/supplements/whatever, could have 'contributed' or even caused the 'crohn's', by inadvertently causing too much inflammation by the party of the first part :P .... or am I reaching here?

     

    thanks

    Faithh

  6. when we used them, yes they were to be refridgerated because they did not have preservatives in them. if it is the tiny little bottle with the red liquid, then I'd say definitely. I would get a months worth at a time, so about 5 vials, and kept them in the fridge.

     

    What are you using MB12 for?

     

    Faith

  7. Hi Cheri,

    could you give me a little info if you know it? I'm trying to figure out something here.

     

    since your son has Crohns, did I recall you once saying since it is autoimmune (is it?) that you have to avoid things that would "boost" the immune system? is that the way it goes?

     

    when we talk of supporting or strengthening the immune system, is that the same as "boosting" it?

     

    remember some of the discussions re fish oil and omega 3's and 6's? was there something there re omega 3 being good for one and omega 6's not, in other words, tics/tourettes or whatnot should not have omega 6, because that would depress the immune system and not too goof for that? and the omega 3, is that something you need to avoid right now because of the Crohns?

     

    could you give me a little recap on the above and how the immune system relates to crohns and other autoimmune diseases? is crohn's considered an immune 'deficiency' for your son at this point? how do you balance the two (TS and Crohns)?....

     

    thanks so much.

     

    Faith

  8. Yes, but is immune deficiency and PANDAS horses of a different color? what may be good for one issue, may not be for the other? get what I'm saying? does finding these low igg results mean anything if the child is not showing clinical symptomology of that deficiency?

     

    and what about those that don't have immune deficiency? I mean, these workups thru the immuno were (I beleive) started as a result of 'looking for a reason for IVIG to be covered', (again I think). So I guess I am seriously wondering if these results indicate anything that might 'mesh' wiith the PANDAS issue.

     

    why again, did the Dr. state that PEX would not be a good idea for your boy?

     

    Faith

  9. Discuss, please, parents.

     

    Michael

     

     

    :unsure: ...... I don't have any input re experience with any of this, but just reading off on this thread, there are three parents reporting not so good results after PEX, with something seemingly being the aggravator after the fact. My question, or rather comment, would be, isn't there always going to be something that could/would potentially compromise the child's immune system, I mean this is the world we live in, there are threats everywhere. I don't know if these are the real reason these kids didn't fare absolutely well after this treatment, but as a bystander (for lack of a better word), I guess I'm concerned.

     

    Michael, since you state that yr doc feels PEX is not indicated for kids with low igg or iga, (I don't claim to know anything about this since we hve not had these tests and I have no idea what they really indicate), then somewhere in the back of my mind, I feel like is this just experimentation at this point? I don't see consistency here. For instance, peglem just got back from Dr. L. and apparently she did not give a go for PEX for her girl, altho I beleive she has low Igg's (I think). I don't understand what all this means. I almost feel like the protocol re PEX and IVIG is everchanging and its all a matter of who can or can't affort it, or if it is covered, or who pushes the most for it. don't really know. sorry to put this out there, but you said to discuss. and I think these things should be discussed. there are many of us on the sidelines kind of waiting for the consensus, if you will. What I greatly fear is that these treatments are still in the 'experimental' stage. I mean, the immunologist does these tests, okay, and then its found that the child has these low igg's or whatever, and it gives a thumbs up for IVIG, but my question is 'how exactly do these results tie into PANDAS?' ... I mean do the test results that indicate okay for IVIG, based on low immunity indicate the same reason why PANDAS kids need this? I thought PANDAS is where these kids mount 'too much' of an attack and too many antibodies are always present. so my question would be 'how to the two tie in"? I don't know if I'm explaining this correctly, but for me, it concerns me that those that are getting 'approved' for IVIG based on these results, are going forward because they believe it will help the PANDAS symptoms, but then we are not exactly seeing great results. So now it is said that you need more than one, or monthly....... :unsure: ..... is this just an ongoing experiment? .... plealse forgive me guys, for putting these thoughts out there, but I think someone has to.

     

    one thing that stands out in my mind, and I can't recall the poster that said this, but it may have been Alex, maybe bubbasmom? (sorry, correct me if I'm wrong), but I do recall reading where they were scheduled to do IVIG (Ibelieve thru Dr. L.) and then they, over the phone, reminded her that their child did (or did not get sick alot) forget which, but doesn't matter, my point is that then Dr. L. agreed and then said you're right, maybe PEX would be better... what if the parent didn't mention that or clarify that? shouldn't the doctor have been more in the know of what would be the way to go for this child? .... I don't know, it kind of unnerved me that if the parent didn't mention this, they would have gone ahead with the first indication.

     

    Faith

  10. do you know where the pyruvate kinase is located? is that a protein in the blood?

     

    does this mean there is a 'deficiency' of pyruvate once the antibodies get at them?

     

    so replacing this pyruvate, what is supposed to happen?

     

    because isn't the 'cam kinas' a protein that was thought to be 'activated' in children with PANDAS, etc.?

     

    :)

    Faith

  11. Could I ask this? do you think your dd would be having this same course of symptomolgoy had you NOT had these IVIG's? In other words, was the 30 days of good you had after the first one absolutely a good enough run that you know you could not have had otherwise? were there some setbacks there too? don't know if I'm conveying this right, but hope you get my meaning.

     

    Faith

  12. Im kindof confused about this too.Dr T didnt seem overly concerned about yeast with danny but did recomend florestor(sp) and I found it at costco 50 pills for 32.00$ not bad.Im not sure if his behavior changes from probiotics but How would I know if its teast if I dont do a test? Ive had tests before and havent had yeast issues.But havent been on antibiotics like this before either.HUMMM any one have anything to add?

     

    Melanie

     

     

    I think its important to use probiotics especially while on abx, so as to replace the 'good bacteria'. Probiotics are not to 'get rid of yeast', its to 'prevent it'. I could be wrong, but I'm pretty sure after the yeast problem is already started, you would begin to be aware of it via symptoms somewhere, and more than probiotics will be needed at that point. iIs possible some of you are seeing a reaction because it is from the initial use and it may not really be from the probiotics, but from the bad yeast dying off. after a bit, it should clear out and those reactions will not be seen. I've had my son on probiotics for years, just to try and make sure he doesn't get further problems, and have his tic symptoms of other issues possible escalate because of it. Having good gut health is kind of importaint in kids with these symptoms, PANDAS induced or not.

     

    Peg,

    I think the statement made to the effect of "PANDAS kids usually don't get yeast infections', is a little broad, but that's just my opinion. maybe she meant its not usually a problem, but again, that's kind of presumptuous. I'm sure your'e aware that yeast treatment is one of the key treatments for autism. (not tht it helps all, but its certainly one of hte protocols). Do you think she was trying to differentiate PANDAS from the autism when she said that?

     

    Faith

  13. Hi there,

     

    If you are doing monthly treatments of IVIG, what is the duration between treatments? We were planning to go 28 days between each infusion. This month has been really bad for DD. She had a pretty serious blip 4 days after receiving this month's infusion. She did actually recover from it, but then 4 days later she is now in another one. We are set to check back in for the next infusion in 5 days. So, DH and I are wondering if this is actually a blip or the treatment is wearing off.

     

    I thought that I read that someone on here is doing the infusoins every 3 weeks. Can we get a consensus of the time between infusions here? Any thoughts from you experts on whether we should move our infusion up or stick it out until the planned date in 5 days? Things seem to be deteriorating quickly at our house.

     

    Thanks!

    FA

     

    fa,

    please forgive this very sensitive quesiton, but, if your daughter is having these blips 4 days apart, this would make me feel the IVIG was not helping. I don't recall how many she's had yet, but what are these blips? symptoms come back, or do you mean an exacerbation? I mean is 4 days or so enough to gauge success of any modality? is it uncommon for dd to have even a few days of good? again, sorry, I'm just trying to get a handle on these treatments, I guess it seems many are seeing setbacks, it makes me kind of question this. what do you think? could you give a little more detail? thanks

     

    Faith

  14. i have wondered about a possible link also. when i got my sons medical records, there was a note that i had called concerned he was having a reaction to the chicken pox vaccine. i was surprised to see that b/c i didn't recall that. neither me nor my husband had any recollection of that. it couldn't have been much if we didn't remember, but it does make me wonder b/c others have suggested a link.

     

     

    smartyjones,

    I'd be interested to know the timeframe of tht chicken pox vaccine and what you noted about a reaction? was he a baby at the time? it was probably that he cried alot that night or something like that? I know I have a memory of my son being around6-9 months old, can't recall, and he had a vaccine during the day, and he cried continuously the rest of the day. we sort of figured out that the site of the vaccine on his leg was sore, because whenever we held him and kind of touched that area, that's when he cried. who knows if it set up anything for further problems, but I didn't see any symptoms of tics until 3 1/2, so don't really know there.

     

    But anyway, my question to you would be, how long after that vaccine would you say you noticed any symptoms in your child? just curious.

     

    Faith

  15. so basically, are you guys saying that the more intense ones, once they calmed doiwn, at least didn't go back to that level again? was it more a wax and wane, but on a more milder level at least? :)

     

    CP, thanks but I don't think I got what you meant, a few typos there, so not sure if you got thru, ... lay off the wine before dinner, will ya?.... ^_^

     

     

    Faith

  16. thanks, interesting.

    our anti-lyso was 1280, way in the high range (normal range is 80-320). the Anti-tubulin was 100, (normal range was 250-1000). He has ocd for sure, in the way of repetitive erasing, going over letters, and other quirky type things, but those are the noticeable ones.

     

    When we were there, I asked Dr. L. what that indicated, and she did not mention anything about ocd, she actually just said it meant he had a high amount of those antibodies, but they were not sure what it means yet. perhaps they are slowly compiling info that confirms that? I don't know, seems we all get conflicting info from these docs.

     

    Did Dr. L. mention if the zoloft would be okay for tics? or you didn't discuss that?

     

    Faith

  17. I'm curious about the course of vocal tics.

     

    my son has had vocal tics for some years now, sometimes better, sometimes worse, but kind of always somewhat there.

     

    recently this past summer, it kind of changed into a worse, more loud "EEww" type sound. it was kind of ongoing (about three months) until a few weeks ago. we started noticing he was shedding that, but kind of replacing it with an "oww"...."oww"....."ohhh".....type thing. He's still kind of doing that, but now after a few weeks of that, I'm noticing more of a little whimpering thing, like he'll sort of gasp and then go "oh, ...ooh.....uh".....he's not imitating a little whimpering puppy, but it does kind of sound like that. he can control it when appropriate, but of course I hear this mostly in the house.

     

    My question is this. Would anyone think that the fact that they are changing and the loud one kind of went away, and this sound is softer, .... any chance that they are on the way down? could this be like going backwards and little by little getting milder? any chance this will hit the high road soon? ...... or is this just a change and it could go either way? I realize no one knows the answer, but wondering if anyone who has had a child with vocals has seen this pattern, changing of the sound, but it got progressively less of a more noticeable sound? and then stopped? just wondering if I could look at it this way?

     

    p.s... he's not on any meds or abx right now, only a multi and probiotics which he's taken for a while now.

     

    thanks

    Faith

  18. dut,

    where did you get these kind of tests done? are you indicating that those are included in the ASO and Anti Dnase, but they can also be done individually? I've not heard of those before. Is that what its called... "streptozyme" tests? Did the doc who did that testing think it indicated anything interesting?

     

    Faith

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