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SSS

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Posts posted by SSS


  1. 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. Congenital Lyme Disease.

    Lyme passed from mother to child via pregnancy/womb and/or breastfeeding.

    Maybe that sounds crazy to you,

    I know it did to me when suggested.

    But it's a scientific proven fact transmission is possible,

    I myself tested positive for Lyme (PCR culture)

    and passed it to my daughter,

    who (in retrospect) had symptoms from birth,

    and I'm sorry to say this,

    much like you're describing.


  3. 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!


  4. Uh, honestly, I wouldn't IV curcumin.

    But I'm not a Dr., I just play one in real life ;-)

    Seriously tho,

    I would try Enhansa capsules from Lee Silsby Pharmacy/ no script needed/

    website Our Kids ASD (I am not affiliated w/ them or product)

    but I DO take Enhansa every single day,

    altho my daughter DOES NOT because it literally flips her out

    (not die off)

    IMO, curcumin is either a yes or no, with no grey.

    So make sure you have a yes child, slowly, slowly,

    because it can hit you hard

    when I go up on higher doses,

    I can feel reactions.

    Guess I'm saying I would recommend trying to ramp up on a high dose oral product before doing an IV of it.


  5. 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.


  6. 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!


  7. Just wondering where i go to find a foctor who will treat with longterm antibiotics. Dr K says of no benefit beyond 28 days. But everytime we go off for more than a few days he starts sluding into manic and ivig is 20k which insurance wont cover. in iowa. thanks

    Honestly, if you see that response with antibiotics, switch your Dr.

    Top of this page has a list, or/ and this book:

    https://www.amazon.com/Childhood-Interrupted-Complete-Guide-PANDAS/dp/1492974862

    Or, a Lyme Literate Doctor (LLMD)

    Dr. K is *known* for going IVIG.


  8. Okay, maybe this will make my point more clear:

    I don't know why this combo works magic.

    I've been taking it apart and examining for 7 years.

    Sure, some great 'Ah-Ha's!' and revelations,

    but with a PANDAS kid,

    all bets are off.

    Sorry, but someone does need to say once in awhile

    beating down and kill kill kill

    doesn't bring all our kids back all the way,

    sometimes the tamping down to normal life is the best we get-

    managed recovery. Not, we missed something/ didn't treat enough different infections because we still have PANDAS/PANS behaviors off antibiotics.


  9. What symptoms are you hoping to treat by adding the Rifampin?

    You mentioned 'doing well, 100% -ish' while on the current 2 antibiotics (Aug./Biaxin)

    Doing all 3 at 1 time is a heavy load, as you are aware,

    but my point is more:

    Rocking the boat by adding/ taking away without a specific purpose (chasing a phantom infection) is something that is DICEY with a PANDAS/PANS kid,

    because when these kids tip over,

    getting them back can be and often is extremely difficult.

    My .02 cents.

    No symptoms, don't further treat.


  10. Oh boy. Interesting I rarely check in anymore and here is:

    Augmentin + Biaxin = your kids 100% for some time now

    Augmentin + Biaxin = my kid had a GREAT year, most normal ever all around (not 7 yrs. this antibx combo, but 7 years of trying to heal infections, autism, Lyme, PANDAS, etc.)

    Anyway, Augmentin pulled her out of OCD hel! trip of the decade, Biaxin calmed her ADD stuff, time passes, so I think, hmmmmm let's mix it up, let's take away,

    Don't do it!

    I say: keep your kid on the combo and enjoy every last drop of 'normal'

    I tried to pull the Biaxin out, and OCD ramped right up, and ADD type behavior with impulse/ body.

    (And Rifampin is tolerated by not too many). Now I am back to guessing, walking on egg shells, hating myself once again for getting my hopes up, even after months and months of 'pretty darn good/okay' (while on Augmentin/Biaxin, GF/DF diet)

    If you are in peace and calm with a PANDAS kid, KEEP IT.


  11. So you've just tried 1 antibiotic? Because your 6 yr. old seems to 'fall off a cliff' into flares, it absolutely sounds like PANDAS/PANS w/ the symptoms that match.

    I like the book and recommend

    'Childhood Interuppted' by Beth Maloney

    He is suffering, to bring relief, typically full dose Augmentin or Azithromycin/ Biaxin are tried-

    And if you start treatment, diet, probiotics, detox.

    Hope you can get to a good provider/ get a move on to quell this for him---


  12. 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.


  13. 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


  14. What infection testing has been done? Have you checked for Myco P?

     

    And I read your whole story, and kept thinking: Lyme Disease.

     

    Just a hunch, but PANDAS/PANS kids need an Igenex Western Blot test. Otherwise, underlying infections weaken the immune system, and relapse often occurs.

    My .02 cents, but you don't talk about actual infections... also viral titers should be done, too.

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