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sss

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  1. Like
    sss got a reaction from wisdom_seeker in Anyone know current status of Amy Smith from California?   
    I would like to briefly share:
    Amy Joy Smith worked with my daughter and I over the last 2 years.
    If I spoke to a supplement recommendation and said:
    We tried homeopathy, did not work for us, or,
    my daughter won't take a pill if it's dark green,
    immediately response: no problem, I understand.
    Because she totally understands.
    I could write a whole lot more
    but I will close with
    Thank God for Amy Joy Smith,
    and her depth of knowledge, intelligence, ongoing education,
    blood sweat and tears
    with helping and transforming the lives
    of our children. And adults.
  2. Like
    sss got a reaction from wisdom_seeker in Flare from a few acne boils? Or serious seborrheic dermatitis? Lotion Tx?   
    Boils to me, I think MRSA staph. Might want to rule that out (Dr.).
  3. Like
    sss reacted to wisdom_seeker in Help me understand these results   
    Hi SSoda,
     
    So sorry you had to go through this, and still are. I wouldn't worry about MS, but do trust your instincts and stay away from that MD who didn't even talk to your daughter and dismissed all you said. I had one of those as well. Maddening. I don't think that MS would create all the symptoms you describe. How frustrating that the infection took so long to treat, so many times you were dismissed.
     
    Only a quick reply, for it's late here.
     
    IgM antibodies are produced rapidly after an infection as a rapid-strike force, but they disappear within a few months. IgG antibodies are much more precisely specific to the virus/becterium so they take a few weeks to develop. However they typically multi-year or even life-long immunity to that virus (or strain).
     
    So if you are It means
    IgM+ IgG- early in an infection, (IgG antibodies not yet created)
    IgM+ IgG+ recent infection, or recent re-activation (say chickenpox, or HHV-6)
    IgM- IgG+ an infection in the past (with few controversial exceptions).
     
    If your daughter was IgM- IgG+ to HHV-6, then that doesn't sound like drug-induced reactivation either does it? And I'm too tired to think clearly about what else it might be, besides PANDAS from one or more infections, plus perhaps drug allergies. Perhaps somebody else will have ideas.
  4. Like
    sss got a reaction from jan251 in Intravenous Curcumin anyone?   
    Hello- I can only speak for me I guess, but I have the A1298/C 677
    the genetic deal where I am 'suppose' to not tolerate yet my dd11 doesn't have that and can't tolerate, so unfortunately it seems trial $ but I do believe in quality and trust Lee Silsby
    saying all that!
    I say for certain for me taking Enhansa reduces inflammation noticably- in my gut/intestines, etc. it's powerful, seems to battle yeast w/ a sword.
    HTH!
  5. Like
    sss reacted to MomWithOCDSon in Can a Pandas or Pans episode cause permanent regression?   
    I have to join Jan251 in echoing an "I don't know" with respect to some of your questions, but I can also offer this. In the depth of my son's worst/pivotal PANDAS exacerbation, many of his behaviors, sensitivities, etc. looked very, very much like an increasingly severe type of autism.
     
    Perhaps like your kiddo, he had previously (along about the age of 3) displayed some "processing differences" that a few doctors and caregivers likened to a functional level of Asperger's, but nothing like what the PANDAS "unearthed," is the best way I can describe it. As a preschooler and through grammar school, he had some of the Asperger traits: intense focus on things of his interest, lack of tolerance for things/subjects that didn't interest him at all, general disinterest in social interactions with peers but an exceptionally strong ability to articulate thoughts, ideas and even feelings with trusted adults, high physical sensitivity to clothing labels, sock seams, etc.
     
    With the PANDAS came an inability to look people in the eye when talking with them, a "kinetic" sort of need to move and talk at the same time -- if you asked him to sit or stand still, the words wouldn't come out, odd speech patterns in which he would repeat words or even full phrases over and over again, without being able to complete an articulate thought, lack of muscle tone to the extent that he couldn't sit up for long periods, was forever lounging and slumping, dramatic meltdowns over tasks or requests that, before, had been simply and confidently accomplished. My dad developed Alzheimer's about the same time, and at one point fairly well into his healing, my son told me that sometimes he "felt like Grandpa" because while he could remember a beloved vacation that we took two years ago, he couldn't remember what he'd had for breakfast that morning, or even if he'd brushed his teeth less than half an hour ago.
     
    Personally, I think ALL of this is brain assault . . . microbes, inflammation, neurotransmitters tilted off-balance by inflammation or microbes or both . . . But it DID all get better over time with PANDAS treatment, therapy, supplementation and some "psych" meds, as well.
     
    Within about 2 years' time, all of his caregivers/doctors had dropped any reference to "autism" in his diagnostic profiles, and he's a happy, successful, largely independent college sophomore today. That's not to say that he doesn't still have some "quirks" or some periodic episodes of anxiety and/or OCD, because he does. I think he's wired this way, honestly. But he is fully functional which, during the PANDAS, he couldn't have been further away from.
     
    All that's to say . . . don't give up! The answers don't come easily, nor do they always come quickly, but they WILL come!
  6. Like
    sss got a reaction from ibcdbwc in Igenex Negative for Lyme?   
    Here is my thought:
    Average Joe Blow off the street is not getting a blood draw shelling out a grand for Lyme and co-infection testing to Igenex.
    Igenex is getting blood
    from symptomatic folks who Dr.s have signed off a Igenex blood order test
    because there is a case for Lyme and co-infections.
  7. Like
    sss reacted to rowingmom in Stephanie Seneff on Vaccines   
    Yes, the video is a good one.
     
    I feel better about our choices to eat organically and exempt from vaccinations every time I see it.
  8. Like
    sss reacted to tj21 in Anyone know current status of Amy Smith from California?   
    Hi - We see her. I didn't realize she had her own website with a contact form. The main office site is: http://www.pacificfrontiermedical.com/
     
    When you call the office, leave a message at x.0 for Mike, her assistant. I don't know if she's still doing long-distance phone consults.
     
    Yes, she was on vacation during the above-mentioned dates, so I would imagine she's even more backed up now. Especially since there are so few knowledgeable practitioners here, and Stanford Hospital is even more backed up.
     
    Good luck!
  9. Like
    sss got a reaction from MomWithOCDSon in Weaning Off of Risperidal   
    Hmm. After 6 years since a PANDAS diagnosis,
    and being well read up on it, treating it,
    I still find it hard to believe at times.
    It does look like mental illness, autism, ADHD, et al.
    I think it is 'normal' for a parent to say
    you know what, maybe a psych pill that costs me $10
    can help. These insurance docs seem to think so- let's give it a go.
    Not to mention perhaps the child is violent or so ill a hospital ward is considered.
    My dd11 is on Risperadone.
    .50 in am, .50 afternoon. It is the lowest dose and w/ her weight very low,
    but it's there.
    Other psy meds only lasted 1 or 2 days with immediate negative results.
    So pick your poison
    Long term antibiotics, IVIG's of pooled donor blood,
    there is no right or wrong.
    My daughter had the best year of growth and happiness this last year,
    and it continues. I tried to remove an antibiotic,
    and loss of control came back. So she's back on it, and back at baseline.
    It is a LOT of work, special diet, special PANS Dr., supplements, pills.
    But when she is baseline/ stable, her mind and spirit grow. She banks learning, positive experience, self esteem, peace in her family.
  10. Like
    sss got a reaction from BeeRae22 in Flaring again...thought I was done here   
    And to all you 'old Moms'
    By being here,
    by responding,
    by reaching out with your experiences,
    is an amazing and beautiful service.
    Thank you---
     
    Nancy, I was thinking of you
    telling of removing Augmentin w/ your son,
    how you slowly tapered it down.
    I'll remember that when I try in 10 years! Ha ha :-/
    But much love to us all.
  11. Like
    sss got a reaction from BeeRae22 in Flaring again...thought I was done here   
    Yep, my PANS dd11 had a great year too, so removed Biaxin (taken daily with Augmentin)
    see 'stuff' slowly creeping in, I think 'yeast', play around there, but finally after 2 weeks,
    *I know* even tho I *still can't quite believe it, again!* that the bloody Biaxin calms this child and tamps it down to pretty darn good, with Augmentin.
    Back on Biaxin, about day 3 back on, and it's definitely better-
    the worry being- will it work again?
    Quality of life, not tormented, and self esteem from good actions, all a 1,000 times worth being on the antibiotics.
    And she's been on it a long time. And yes, we've treated and treated and treated Lyme, Bart, mold, etc. etc. etc.
    If it works, keep it!
  12. Like
    sss reacted to ibcdbwc in Flaring again...thought I was done here   
    I just wanted to say you are not alone. We have experienced joyous periods of remission but gut wrenching recurrences. The roller coaster is unreal.
  13. Like
    sss got a reaction from MomWithOCDSon in Flaring again...thought I was done here   
    And to all you 'old Moms'
    By being here,
    by responding,
    by reaching out with your experiences,
    is an amazing and beautiful service.
    Thank you---
     
    Nancy, I was thinking of you
    telling of removing Augmentin w/ your son,
    how you slowly tapered it down.
    I'll remember that when I try in 10 years! Ha ha :-/
    But much love to us all.
  14. Like
    sss reacted to MomWithOCDSon in Flaring again...thought I was done here   
    Yes, Beerae, it WILL be over, one day. It truly will. Never fast enough, or solidly enough for any of us, but it will. And then it'll take you a while to realize . . . to BELIEVE . . . that it actually is over at that point!
     
    I don't know if it's because our kids' bodies, minds and immune systems are still maturing, I don't know if it's because they're constantly subject to new assaults by various microbes, allergens, etc., or if hormones tied to impending or full-scale puberty are a factor, but I do believe your DD will come out the other side of this. Unfortunately, for us, ages 12 - 13 were particularly rough, and then, slowly but surely, each year thereafter got better and better with respect to DS's ability to weather the storms, bounce back after a fresh strep exposure, etc. By 16, he was pretty much 100% on the other (good) side, but even then, PTSD had us walking on eggshells at times.
     
    Hang in there, and hang onto the knowledge that you're doing all the right things, and you'll make it through. Our kids are more resilient than we give them credit for, sometimes . . . if only us more "mature" folks can hold on and share in some of that!
     
    Take care!
  15. Like
    sss reacted to MomWithOCDSon in Weaning Off of Risperidal   
    MarcyJ --
     
    I have great respect for your experiences and opinions, and it sounds as though you have an excellent team and supports in place for your child. Heartfelt congratulations, truly! This forum is for the purposes of support, so I don't intend to feed an argument. But while I'm not offended by anything you've shared or expressed, I do have concerns that it may be somewhat misleading and/or unhelpful to some others or potential newbies who may happen across this discussion. Having been through the PANDAS/PANs during some 12 years and now (knock on wood) having successfully made it through to the other, healthy-living shore, I feel compelled to share OUR experience and the benefits of our care team, research, etc.
     
    1) All "psych" drugs are not equal, so categorically drawing the line at all of them is not particularly helpful, IMHO. I think we're better off sharing our experiences on a one-by-one basis, particularly as every person's chemistry (PANDAS/PANS or non-PANDAS/PANS)is entirely singular, painting this item with such a broad brush may do some people a disservice.
     
    2) You state that all of the "top" docs in the field (PANDAS/PANS) are "100% against" any psych meds; this is not our experience. It IS our experience, however, that knowledgeable PANDAS/PANs docs believe in aggressive medical interventions for PANDAS/PANS and do not embrace any psych drugs as a primary line of treatment. Having visited, attended conferences at which they've spoken, and/or corresponded with many of the top practitioners in the PANDAS/PANs field, I know that a number of them support and even recommend -- albeit cautiously and judiciously -- some psychiatric med supports, for those individual situations for which they appear to be warranted, in addition to the medical interventions, therapy, etc.
     
    3) Sorry, but it is just not true that if your child responds positively to psych drugs, then he/she does not have PANDAS/PANS. On this forum alone, I can identify over a dozen families for whom BOTH PANDAs/PANs and some successful psych drug interventions have done wonders for our kids; we're one of those families, but there are many, many more.
     
    In the end, it may be that, for your DS and his physical and neurotransmitter make-up, most if not all, psych meds are ill-advised. And your point that simultaneous use of psych drugs and medical interventions for PANDAS/PANs "muddies the water" in terms of discerning improvements and/or the actor bringing about those improvements, is well-taken. Particularly in young kids with dramatic PANDAS behavioral presentations, I'm certain every specialist would prefer a "clean slate" for medical treatment, without the added complication of psych med impacts. And certainly, for younger children, I think all parents are well-served to pursue and at least rule out PANDAS/PANs and all available medical interventions before going the psych med route, partially for the diagnostic advantages and partially because, even if psych meds are eventually found to be beneficial in your individual situation, most of us would prefer to implement them as late in childhood, and as sparingly, as possible.
     
    We all benefit from sharing, particularly as our experiences extend time-wise and we see our kids go through all the growth, maturation, healing, etc. through this challenging PANDAS/PANs thing. Hopefully, we all learn some new things from one another and can therefore make the best possible decisions for our own loved ones.
     
    I know this forum has been unbelievably beneficial and inspirational to my family and has helped us see our DS from the brink of madness at age 12 to healthy college sophomore at age 19. Here's wishing you and yours, and everyone who stops by here, the best, smoothest, most expedient path to a healthy, happy, life!
  16. Like
    sss got a reaction from MomWithOCDSon in Hello old friends   
    Thanks LLM! We are having a good year :-). Dd10 is flourishing in her 5th grade class this year.
    Cleopatra, we certainly have had separation anxiety as part of our 5-6 year journey thru PANDAS/PANS.
    The line is faint at times for sure between helping and enabling/ PANS in control or helping to break patterns.
    My kids have all slept in their own beds/ rooms for years, we were always firm here for adequate sleep and, frankly, my marriage is important to me.
    That does not mean we haven't spent our own time in he!! w/ our PANS child w/ sleep issues in the beginning.
    But I do need a retreat where barging in assuming my time without asking isn't okay-
    and me walking out the door for 40 minute exercise is happening, etc.
    I guess I've learned me taking care of myself is a good thing to role model, but also the only way we're all going to get through.
  17. Like
    sss reacted to lnn in Hello old friends   
    Good to hear from you - I was just wondering about you the other day! Sounds like seeing Mick helped you move to a better place emotionally! Not on forum much any more but email me if you have time to catch up. For now, just so glad to hear you're taking care of YOU!
  18. Like
    sss got a reaction from rowingmom in Hello old friends   
    This is a very special (and sometimes very painful) forum to me.
    I stopped in to give prayers/ healing energy/ love to you families.
    We have been thru the too, and I am not here to post a
    recovery/ out of woods story, but I do want to give some hope.
    You must hang in there! Oh yes, I understand. I understand all of it.
    Every post written here, I understand.
    Moms/ Dads- take care of YOU. Get 'selfish'.
    But it's not selfish. It is the only way you'll make it.
    Start exercising. Eat better. Carve out your own time. Make your bedroom off limits to children if necessary, like I did.
    I've also learned that if I am primary caregiver to a child w/ OCD, mental illness,
    well guess what? I absolutely cannot tolerate being anybody else's dumping ground.
    If a family/ friend relationship is not serving you, stresses you out, then cut it out. I have. Screw the guilt!
    You cannot take care of everybody!
    This illness will take the caregiver down. Yes, we are financial blown out too.
    It doesn't take extra money to make this happen.
    Carve it out. Find an outlet. Do it.
    xxoo
  19. Like
    sss got a reaction from MomWithOCDSon in Hello old friends   
    This is a very special (and sometimes very painful) forum to me.
    I stopped in to give prayers/ healing energy/ love to you families.
    We have been thru the too, and I am not here to post a
    recovery/ out of woods story, but I do want to give some hope.
    You must hang in there! Oh yes, I understand. I understand all of it.
    Every post written here, I understand.
    Moms/ Dads- take care of YOU. Get 'selfish'.
    But it's not selfish. It is the only way you'll make it.
    Start exercising. Eat better. Carve out your own time. Make your bedroom off limits to children if necessary, like I did.
    I've also learned that if I am primary caregiver to a child w/ OCD, mental illness,
    well guess what? I absolutely cannot tolerate being anybody else's dumping ground.
    If a family/ friend relationship is not serving you, stresses you out, then cut it out. I have. Screw the guilt!
    You cannot take care of everybody!
    This illness will take the caregiver down. Yes, we are financial blown out too.
    It doesn't take extra money to make this happen.
    Carve it out. Find an outlet. Do it.
    xxoo
  20. Like
    sss got a reaction from dcmom in Hello old friends   
    This is a very special (and sometimes very painful) forum to me.
    I stopped in to give prayers/ healing energy/ love to you families.
    We have been thru the too, and I am not here to post a
    recovery/ out of woods story, but I do want to give some hope.
    You must hang in there! Oh yes, I understand. I understand all of it.
    Every post written here, I understand.
    Moms/ Dads- take care of YOU. Get 'selfish'.
    But it's not selfish. It is the only way you'll make it.
    Start exercising. Eat better. Carve out your own time. Make your bedroom off limits to children if necessary, like I did.
    I've also learned that if I am primary caregiver to a child w/ OCD, mental illness,
    well guess what? I absolutely cannot tolerate being anybody else's dumping ground.
    If a family/ friend relationship is not serving you, stresses you out, then cut it out. I have. Screw the guilt!
    You cannot take care of everybody!
    This illness will take the caregiver down. Yes, we are financial blown out too.
    It doesn't take extra money to make this happen.
    Carve it out. Find an outlet. Do it.
    xxoo
  21. Like
    sss got a reaction from emmalily in Update   
    You are amazing. Your insight and awareness upon yourself impresses me most. 3rd year of college, wow.
     
    Thank you for your honesty.
  22. Like
    sss reacted to MomWithOCDSon in Update   
    Emmalily --
     
    So glad to hear you're doing so well and that you're able to manage the flares! I'm sure you wish the flares didn't occur at all, but it's a major step toward full independence and a full, rewarding life, don't you think? Thanks for checking in and giving us all a bright beacon for our kids' futures!
     
    My DS is doing pretty well, himself, and will be entering college about an hour away from us in the fall. Thanks for your earlier guidance regarding accommodations in college; the disability office at the university has been awesome, accepting his senior year high school IEP as sufficient information for college accommodations (they only denied one feature which, frankly, DS hasn't utilized much in the last couple of years, anyway). And they've granted him a private dorm room, too, which will work well for him, at least for his freshman year, we think. We're cautiously optimistic about his future and opportunity there.
     
    Thanks again for the good news and solid advice in recent years! You go, girl!
  23. Like
    sss reacted to nicklemama in Pediatrician Won't Do Lab Work   
    If you have been pushing for a year with this doctor, you need to move on. If I had waited for my pediatrician to test my son 5.5 years ago, I'd still be here waiting. Find a doctor that understands and treats PANS. You don't have to jump to IVIG without testing. Test for lyme too.
  24. Like
    sss reacted to searching_for_help in Mandatory PANDAS/PANS lecture for docs in CT!   
    Oh, beerae22, I feel your frustration! As our dd rapidly lost more and more weight, and she had physical symptoms as well, I took her to several docs, telling them of her PANDAS, and all they would do is say, "It's probably just a virus", and ask if we wanted to try another psych drug. Down to an 11 BMI, she ended up in ACUTE eating disorder center in Denver. Strangely, after only being there a few days, (not enough to get any weight on), she started feeling better mentally and physically. We can't help but wonder if the plasma exchange or the IV abx for Lyme had finally kicked in, but something had quickly made a difference in her mental condition. She isn't 100%, but is making big improvements, and ERC was pretty angry with us for pulling her out. But they won't acknowledge the PANDAS, and being isolated in an eating disorder place was really taking a toll on her mentally.
     
    The WORST experience was the ED/psych unit in our state that we took her to initially. They decided in less than 24 hours to call an ethics meeting - to let us know they felt she was competent as an adult of 22 that she could make the decision to die, and they would NOT resuscitate! We were HORRIFIED. We told the whole group in the ethics meeting of her PANDAS diagnosis by 2 top docs. We also mentioned that someone with an 11 BMI could not make rational decisions (as her blood sugar had dropped and she was not herself at all.) I finally convinced dd to eat while there and I would bring her home, but then one of the staff members told her is she couldn't control her exercise on her own she could consider hospice, that it was a peaceful way to die. So dd decides she is to tired to go on, and decides to stop eating. That's when we pulled her out, Against Medical Advice. The whole thing was surreal.
     
    Fortunately, ACUTE in Denver knew someone at that BMI could not make a rational decision, and told us they would do everything possible to save our dd. Not that they believed/treated for PANDAS per se, but kept her eating and monitored her medically.
     
    I am on an eating disorder site called "Around the Dinner Table". It breaks my heart the parents that write in about their little kids and their "eating disorders". These are young kids who are fearful of vomiting and the like, and I just KNOW this is more of a PANDAS thing, and often they mention it will start after an illness. But when I suggest they go to the doc about PANDAS, they don't usually get anywhere, and one mother whose dd is surely PANDAS, was told by her doc that since her strep test was negative, her dd CAN'T have PANDAS. Sadly, this mom believes the doc. Thought it interesting that her other child is on the autism spectrum, which we see so often.
     
    Sorry, got a bit off topic, but I so understand your frustration. NO ONE should ever have to go through the we have all been through with the medical community. So glad some change is being made to educate the medical community.
  25. Like
    sss reacted to MaryAW in Conference at Brown University   
    FYI - my DD is PANS. I can't say for sure what was behind Dr. Swedo's comments. I know she is very concerned about strep prevention. However, Dr. Murphy, whom I respect deeply, says that abx have an immune modulating effect (calms it down). So, I'm not sure if it's strictly strep prevention or the effect on the entire immune system that she was concerned about. I know that if my DD goes without her azithromycin for more than 3-4 days her tic comes back. when we put her on the abx it goes away quickly.
     
    My non-professional opinion would be to monitor your child. If he stays at baseline then I wouldn't do the abx. If it looks like he is starting to revert back, I would think long term abx until one year symptom free would be wise.
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