Jump to content
ACN Latitudes Forums

faith

Members
  • Posts

    2,161
  • Joined

  • Last visited

Posts posted by faith

  1. Dear Carolyn and baby Aiden,

     

     

    just thinking of you guys and wanted to wish Aiden a very happy, healthy and blessed first birthday. Don't know if you're around much, but hope you are doing well and hope you can post some pics and an update soon!......

     

    love and hugs,

     

    Faith

  2. I think the first poster phasmid, is asking if IVIG is worth it.....

     

    To be fair, those that answered in the affirmative, are ones with more toward the severe or at least with kids who have many issues. if your child is 'non-functionable', then maybe its a no-brainer. but for those of us who teeter on the moderate to mild, well, ..... just don't know.

     

     

    Just my two cents, but I am quite okay with those with more severe cases going forward with this, I would do the same. I think the problem comes in when the child is not as severe, a more moderate or even mild case. My own feeling is just seeing alot of setbacks, and yes, some worsening, even if temporary. hard to say what the right thing to do is. for me, we have no high titers (I know its not necessary) or even a big history of strep, past or present, so I am not presently comfortable that these treatements will help, or 'hinder'.....

     

    Everyone who posts here deserves the truth from everyone, the good, the bad, and the ugly. And its basically up to the parent and doctor as to wether they should move forward for more advanced or aggressive treatment. I personally don't feel these treatments should be 'advocated' publically yet (and by public, I mean media)... just my opinion, don't beat me up. This is still between doctor and parent/patient. We are all here for support, and we should all be free to give it, but ultimately, it is a choice that may warrant taking alot of things into consideration. I also think that saying our kids deserve 100% is not necessarily a fair argument. While that is most definitely true (and we wouldn't be on these boards if we didn't think that).. but who is to say what is the thing that will top us out at 100%? Clearly, it has not turned that way for everyone...at least not yet.

     

    And btw, Dr. T. may have seen 'relapses' of kids on abx who are now in their twenties, but I think the one you may be referring to is the case of a girl who did wonderfully on abx and got well, altho may have had some symptoms return, albet mild, when she started birth control pill at around 21 or 22. I pretty much know that for a fact, but you are only 'hearing' it from me.....

     

    I'll end by saying thank you to all who have contributed (and continue to contribute) to helping the rest of us make informed decisions. I've said it before.....say it again.....no 'one size fits all'........

     

     

    Faith

  3. Stephanie,

    did you feel the tics were helped by the spiro as well? or they were still kind of there? if they were gone withthe sprio, is this the first time? I mean, does he ever follow that pattern before, like tics go for a bit and then come back? wht tics ramped up now? ..

     

    just trying see how this works for you vs. the sprio. (things aren't that great for us here in the way of tics either, but I'm another story, lol.. :) )

     

     

    thanks

    Faith

  4. mama2alex,

     

    So many people get diagnosed with lyme with a much more "negative" looking IGeneX test than your son. I had band 41 positive and band 39 IND and the rest negative, and also negative for lyme, bartonella, and rickettsia. Yet my LLMD diagnosed me with lyme and bartonella. It is just very common to not look full-blown positive before treatment. I am only 2.5 weeks in to lyme treatment, so nothing too much exciting to report, but I'm sure I'm on the right track. I also had a very high CamK (183 I think), and experienced some improvement with antibiotics for PANDAS, but it was very limiting, so I'm much further along with lyme treatment now.

     

    Sorry if the treatment for lyme seems overwhelming, but it really looks like that's what it is. Agree an ILADS MD might arrange the best plan. There are plenty of things you can do in the supplement category to really help the treatment work better. It would be very useful to read the "treatment and diagnostic hints" available from the ILADS website, lots of helpful advice there on supplements near the end of the document.

     

    One last thought for now, if you can afford it, unless you are just overwhelmingly healthy, you might also consider getting a western blot for yourself.

     

    Michael

     

    Michael,

    what is the treatment that you are doing now, what abx? Is this different than the clarith for myco p.? how did that wound up turning out? did dr.k. say anything about that .. or this?

  5. Patty :)

    I second that these seem to be ocd habits, I would not classify them as tics.

     

    If you ask him to not turn the faucet like that or turn off/on the lights, does it 'bother' him? he has to do it, or he feels 'bothered' if he doesn't? we've gone thru that with the retracing and erasing of letters. I can attest to ERP therapy helping this. it was really bad at one point, where it really upset him that he was doing this and could not seem to stop. the first step tho, I feel, is that they have to feel it is a problem and 'want' to be helped and want to find a way to have this stop. Altho, if this is not that much of a problem, in other words, if it is not interfering with anything or upsetting him, than not sure it needs to be addressed, it might make things more uncomfortable and just open up some problems, you'll have to gauge how much you feel his "OCD" is a problem.

     

     

    * (don't think patty will mind if I point out that, no, she doesn't think he has PANDAS, but he does have tics and now this ocd, but the parents here seem to have more of experience with ocd in their kids.... we've been kind of on the same path for a while with our kids being somewhat similar).....

     

    Faith

  6. Buster,

    just going along with your original post, you say 'untreated' strep.......but what if the strep IS treated somewhere down the line? my son does not have it now, hasn't in a long time that I know of, no high titers to substantiate, ...... so if he's had abx and is not sick now, ...why does he still have tics and other comorbids?

     

    This is the point where I just fall off and can't get past.......

     

     

    thanks

    Faith

  7. Buster, Diana, Kim and T mom, These guys especially Gilbert knows that tourettes and ocd can be caused by an autoimmune disease. (As Diana said from Leckman). In 2002 Gilbert told me that tics are most likely three different diseases, Either autoimmune, birth trauma- trauma related and developmental/genetic. My dd had an extremely high ana with chronic illness and no one thought her tics weren't from autoimmune. Gilbert even prescribed steroids. These stupid articles only influence the pediatricians whom barely skim over the subject. Without Diana and Cunningham my dd would have been in a psych ward. Blood markers they love. All immune docs now say wow your dd really fits the pandas profile, years of relapse and remit, low igg, high antidopamine antibodies, high ana that reduces with ivig. Basically what I am trying to say is neurology will not be the ones to change this disease protocol. All they want to do is separate out the immune def kids and send them to another specialty. Its not their specialty and they will always emphasize the other neurological deficiencies that they better understand and are working on for tourettes. Gilbert told me himself that the immune disease needs to be with rheum and immun docs. Its a shame these neurologists are so into their own success and research that they cannot even try to open the doors for the kids whom have pandas, out of fear of every parent wanting abx or ivig. I am not sure what I am trying to say here, other than do not get upset over Kurlan, he is just into his own study with mirapex, he has been consulting on this drug for rls (for rls patients not tourettes) for many years past and now he heading the five million dollar tourette study of this drug. Dopamine is his angle, autoimmune disease just complicates his objectives. So I am glad Swedo is doing another study. Does anyone know how long the study will take? Are they looking at PEX again? I agree with Buster that Kurlan and Gilbert slant their language, so that the uninformed easily dismiss the autoimmune component. What's so weird is that both know ocd and tics can be caused by an autoimmune trigger. They have forsaken our children to make their lives easier, so they can continue to manage TS as a genetic developmental dopamine disorder. After swedo's study with 30 more kids do you think this will be large enough to sway them? They want markers to distinguish these kids. 15 minutes they have with each patient, how will they know who is pandas and whom is not in 15 minutes? Dr T and Dr B and Dr L spend far more with each child. I look forward to swedo's results, but even with her results it will still require the parents to fight for their children. 15 minutes per child Gilbert has, and if you are "lucky" enough to see Gilbert all followup is scheduled with his nurse practitioner.

     

    nevergiveup and kimballot, (and all who have replied here)...

    I understand and pretty much agree with what you are saying, but how exactly do they go about figuring out if autoimmune is the problem? For someone like me, who even after seeing two of the PANDAS docs, and being treated as such, I feel like I still don't really hve a definitive answer as to what my son's problem is. I'm not comfortable assuming anything. he surely has all the symptoms, maybe not all at once, but tics since 3 1/2, ocd. sensory, etc..... But so far, abx doesn't seem to do anything remarkable, and we don't have glaring proof of strep, ..all testing comes out normal, no deficiencies, no co-infections, nothing (cam k was 179,. with high anti-lysogangliosides)..........so basically I have done all the homework and explored all avenues. where else do I go from here? My son is not presently sick with strep or anything else, but he always has tics, mostly vocal, at pretty much every point. there's no remittance, just sometimes more waxy than others.

     

    sorry to put out my own example, not trying to make this discussion about us, but I think there are alot of us here who really just don't know exactly where they fit in, the ones with manageable symptoms, not

    in 'exacerbation', or 'crisis'..... ...

     

    I absolutely agree that all children with symptoms should be screened, checked, even a trial of abx should be fine....but what do you do subsequently?

     

    I would not do steroids of IVIG at this point, not knowing if we are or not pandas and 'autoimmune'... I personally do feel comfortable from all my research that tics, tourettes and maybe ocd, does have an autoimmune component, but if that is so, then why can't it be proved?

     

    when you guys say there should be a standard protocol, what would you think that should encompass?

     

    I, too, have a fear of parents getting the wrong information and trying these things without proof of what is going on with their child.

     

    thanks

    Faith

  8. :( I'll start by saying I don't know if we are definitevely PANDAS, but we do have symptoms. and HELLO, we are having a rough time with math too, he's definitely falling off. We're fighting over it right now while he's doing hw, he doesn't seem to be able to figure anything out without calling me...hard to say, but the work does get harder, with all the different types of math, fractions, word problems, algebra and all that ......yesterday I got a notice for the first time for summer school for math only. man I was pisssed. first time, and he's in fifth grade. I was kind of the same way as a kid, did pretty well in school, but math was always the sore spot. Even still, I am about to pull some hair! ;)

     

    ...slowly exhaling..... :huh:

  9. Maybe the mackeral? is it from a can? maybe it's omega 3, but having the same effect of increasing tics that some have with fish oil........

     

    I'm thinking its possible there could even be minute amounts of mercury in the fish, but just speculating. Have some Rice Krispies the rest of the week and see what happens..... :ph34r:

  10. Just for the sisters......... .......(sorry boys.... :ph34r: )

     

    "Why Men Pee Standing Up"

     

    Seems God was just about done with creating the universe -- but he had two extra things left over in his bag, so he decided to split them between Adam and Eve.

     

    He told them that one of the things he had left was a thing that would allow the owner to pee while standing up. "It's a very handy thing," God told them, "and I was wondering if either one of you would like that."

     

    Well, Adam jumped up and down and begged "Oh, give that to me! I'd love to be able to do that. It seems just the sort of thing a man should be able to do. Please. Please! Pleeease! Give it to me." On and on he went like an excited little boy.

     

    So Eve just smiled and told God that if Adam really wanted it so badly, he should have it. So God gave Adam the thing that allowed him to pee while standing up and he was so excited. He whizzed on the bark of a tree and then went off to write his name in the sand, laughing with delight all the while.

     

    God and Eve watched him for a moment and then God said to Eve, "Well, here's the other thing -- and I guess you can have it."

     

    "What's it called?" Eve asked.

     

     

    "Brains!" God said.

  11. Coco -

     

    I may have missed something in the posts, but I am wondering if your daughter has an IEP or 504 plan in school. Also, has she every had a real live functional behavioral assessment from a fully qualified psychologist.... and has she ever had a positive behavioral support plan? (Please do not tell me they told you that putting her in a room with no chair was positive behavioral support!)

     

    coco,

    :wub: ... :D I was wondering the same as kimbalott.... Does your dd have any plan in place? it really makes alot of difference. however, I personally, don't feel it is in best interest to state anything re PANDAS for school purposes, its too broad and they don't understand all that it encompasses. So I think everyone should just stick to the individual symptoms, ie. ocd, tics, adhd, anxiety, etc. They cannot punish for those things, a plan will work around their problems. I can understand being admonished for poor behavior and having some consequences, but what you are describing is almost like they are trying to punish 'you'. :wub: . This may sound archaic, but I have found the best way to deal with my son's issues in school is to make as little waves as possible, just so they don't take their frustrations with 'me' out on my son. I know your situation is a little deeper than ours, but just for the other parents here, I feel that making it as simple as possible without too much explanation makes it much easier. I just make sure everything is 'confidential'. unfortunately, it helps to kind of play the game, if you know wht I mean.

     

    Praying things get better you'll be able to sort this all out....

     

    hugs

    Faith

  12. I don't think there is anything one can do to really stifle the urge to tic, wether it be making a vocal sound or physical movement,....we deal with vocals here, and I know my son would be very uncomfortable if he had to stifle it. However, I do think it should be okay for gentle reminders of how to deal with it in certainl social situations. it may not always be possible, and that is okay, but sometimes just a reminder to maybe try and keep it low (if they can) while in class or at times when it would be more obvious to others. Beleive me, I know its not always possible, but we have been dealing with this for some years now, and I do see that my son can vocalize somewhat more sociablyy acceptable if he has to....If he couldn't , I certainly would not force him, I let him go at it in the house, but sometimes, one can't help but kind of give a little gently nudge to not sit forward in the back seat of the car and kind of screech in my ear while driving..... ;) I think its actually good for them to be mindful of it if they can, it just promotes a more social appropriateness, even tho its not perfect, I see nothing wrong with developing social skills around their tics...if at all possible and the child is okay with it. none of this is perfect, but I do what I can.

  13. Stephanie,

    Is the spiro prescribed for autism only, just wondering? could I ask why your doc prescribed that along with the abx, or were you already on abx? Also, the issues you feel are resolved for the time being, ..had they ever been gone before for any period of time? I know you've wondered if it was the spiro that is helping, so just curious about that too. Did your doc beleive that the affects of the spiro would be this quick, or did he feel it would be a number of months before it had some positive effects, if any. Any side effects that you note?

     

    thanks

    Faith

  14. Is it just messy, or can you pinpoint any ocd problems such as scratching out, going over letters, erasing?

     

    Those were the problems for my son (altho his writing was impeccable), so his was more ocd in that it bothered him if it wasn't perfect. we have recently tackled that with ERP therapy (exposure and response therapy for ocd)...its a form of congnitive behavior.

     

    I really don't know how they would tackle messy handwriting, but in case you havn't, I would check out the book by Doris Rapp called "Is this your Child?".....talks about how some things like handwriting problems could be the result of food sensitivites or allergies. maybe you can make a connection there? sometimes, certain foods, dyes, sugar, etc. has an effect on behavior, attention, handwriting, maybe look at what he consumes and you might figure some things out.

     

     

     

    Faith

  15. lfran,

    if you could, my advice is to wait til the tests are over, and only because some of us have observed an increase in tics (don't know if your child has that) on zith. I tried about a month of it, and felt he was better off them, but I definitely noticed an increase of his vocal tics, and opted not to continue. so just in case there is something, I'd say let him get thru the tests without any chance of problems, you never know. my son has a 504 and takes the state tests in another room due to his tics and ocd that can slow him down. again, dont recall offhand what your child's issues are, but better to wait so you can observe better, otherwise you might think he has anxiety because of the tests, etc.......believe me, the week will go fast......

     

    Faith

  16. Did only one child have the ivig, or two of them?

     

    in terms of better, how can you really tell after 10 days or so? unless you know a child had bad anxiety every single day no matter what, then I would think that would be more apparent, but just don't know about how to gauge that. we havn't had treatments here, so not telling of my experience,..but I do see things like that come and go in my child, or at least be more apparent some days than others, just depends on the situation. I mean one day he could look like he feels like doing school work and other days, more interested in playing or 'doing it later'....

     

    why does dr. b. think you will need more than one treatment at this point? what is the reasoning?

  17. fixit,

    could you tell more about the taurine? are you saying when you first had the test, your child was on taurine?

     

    do the symptoms he had then correlate with these results? in other words, you say 106 in November,....were his symptoms mild at the time, all symptoms, tics? .....I am aware that your son's tics have ramped up considerably lately, so 160 I guess would correlate there. But you also know that you havn't necessarily had strep recently, so just saying again, really who knows what causes the activation, ...

     

    well don't cry, maybe good to take a break, lol....

     

    you could also email Kathy with any questions, maybe they hve some answers that we don't know yet...

  18. We just got word yesterday - 167. For me, it's the last feather I needed for my "you're not a crazy,paranoid, self-diagnosing, in-denial about your son's mental health mom" cap . I think I might just email that score to the dr. who told me not to waste my time and money with this... By the way - I wanted to publicly say that Kathy Alvarez is AMAZING! Despite a long day at work, she took our results home with her so she could calculate them and get them emailed out to me by the end of the day. Her email came in at 11:30 at night (her time)- and then another 3 hours later - 2:30 in the morning! Seems like lately I've been coming across more and more very kind health professionals that are going out of their way to try and be helpful. This is just amazing to me after the months I spent jumping up and down screaming for ANYONE to understand and help.

    \Kathy is AMAZING and very patient. It is so reqassuring to know there are individuals out there who understand the frustration and are so willing to bend over backwards to help us out.

    On a different note my sons score was 161. We are still trying to figure out treatment. I am still waiting for the other results the Cunningham lab provides. It has been almost a month. Im not sure what they are suppose to reveal. Do you?

     

     

    what it will show several different types of antibodies and in what range they are. for instance, my son had very high out of range (1200) anti-lysogangliosides antibodies present. what does it mean? who really knows? no one at present. it just suggests that he does have an abundance of these particular antibodies. when all the data is compiled, perhaps they will see a correlation into the type of symptoms that each child has and if there seems to be some common thread. maybe all those with high anti-lysogangliosides are those with tics, and maybe the other antibodies suggest more ocd, or other behavioral. ... I will add here that our score was 179, so pretty high, altho try as I might, I cannot definitevely prove strep is our culprit. my son's main symtoms are tics and some ocd.....

     

    I have asked Dr. Latimer what it all means and she has said that at present, they really do not know yet.

     

    I'm just putting this out there to make sure the right info is put out here and some do not get false hope. This is a study, and you are helping by participating in the study. If it helps with your overall diagnoses and treatment, all the better, but I do think everyone needs to be realistic....This may prove to be something very important in the future, just not yet.

×
×
  • Create New...