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Posts posted by Kayanne

  1. The key thing to keep in mind, is that anything ordered by a doctor that results in additonal costs is deductible as a medical expense. So, if you are trying a GFCF diet without a doctor's recommendations, it doesn't qualify.


    Another general example would be if your children's allergist said to get dustmite allergy covers for their bedding, those covers are deductible.


    If your children's allergist said you need to replace carpeting with hardwood floors save your reciepts and talk to a CPA (or better yet, talk to your CPA before you make that decision). Larger expenses that may affect the value of your home are treated differently than a current year tax expense.



  2. My daughter's Cunningham Panel was also done about 4 months from recovery, and her results were normal. Her PANDAS doc took a look at them and asked if it was taken when she was not having symptoms. From that, I would assume that if you're not in a flare, the results will probably be normal.

  3. Steroids are tapered if you use them longer than approximately 7 days--your body stops making it's own cortisol and relies on the medication. You have to slowly drop the dose to coax your adrenal glands into producing it again. A sudden stop after 7 days at a full dose may cause severe steroid withdrawl. That is the real difference between a burst and a taper.


    My daughter has always had month-long tapers that brought her back to us with sustained results. We never saw any improvement until close to end of the month. At least for her, it seems the autoimmune reaction needed something longer than a burst.


    I will say - I haven't looked at your link yet - but his onset DID look identical to autism. Had we had another doctor - I'm certain he would've been "labeled" and that would be that. What struck our doctor as odd in his presentation was the verbal regression - he was very advanced for his age - well over 50 words at his 15 month appointment and speaking in full, grammatically correct sentences by his 18 month check up. Within a few weeks of the strep infection - he lost almost all verbal ability. Had the regression been less drastic - if he had been on par with his peers verbally and then regressed - autism would've fit.



    I am so grateful that my daughter's PANDAS happened at the end of a very successful year in kindergarten. If it had happened just 3 years prior, she would have gotten an autism diagnosis. She regressed in a matter of weeks--high functioning verbal and congnitive skills gone! You probably remember my daughter's story, I know I remember when you started posting. I hope your children are now symptom free! I pray that for all of our children!


    I appreciate the additional info, but in my son's case there is absolutely no connection to his onset and vaccines. Furthermore, we have a genetic history of the HLA B27 genetic mutation, which makes our family predisposed to autoimmune and inflammatory conditions genetically, I had chronic strep as a child and our family also has a family history of Rhuematic Fever and strep complications. Two different PANDAS experts have said unequivocally that I had it as a child, and one look at my medical history would leave no one in doubt - my chart reads like a textbook for PANDAS until I was in my early 20's (which is when they theorize that "classic" PANDAS kids may "outgrow" the immune response).


    To date, there has been no research connecting HLA B27 to PANDAS directly, but there has been research linking it to chronic strep and RF.


    I also know that vaccines play no part in my daughter's PANDAS. My sister has AS and has tested positive for the HLA B27 gene. She swears by the CVS brand of Curcurmin and getting her anemia under control by taking iron has made a huge difference for her. I also have family history of RF and complications to strep.


    Ariel, is there a lot of ADHD (inattentive type) in your family? There is a lot in mine...Just curious.



  5. Hi Ken,


    I'm sorry that you've been suffering. When my DD was diagnosed with PANDAS in 2009, I remember being very concerned that it seemed so casual - without any real tests to back it up. A very knowledgable PANDAS mom asked me one question; "Is your daughter a completely different child than she was 2 months ago?" The answer was "yes".


    At a minimum, if your doctor didn't do this when you first developed OCD, I would suggest a basic panel of health markers such as a CBC/thyroid panel and others (your doc will know). That's usually a jumping ground to see if anything else needs to be followed up.

    This is a clinical diagnosis -- just like any psychiatric disorder -- it is symptoms and their context. For PANS/PANDAS it is a whole host of neuropsychiatric symptoms in the context of infections, that remits when infections are addressed and/or immune modulation treatments are given. It's a very similar treatment protocol to a psychiatric disorder -- pick a treatment based on symptoms/history and see if the patient responds.


    Other infections that may trigger this (mycoplasma, lyme, EBV, flu) should be kept in mind, if you're not responding to treatment for strep.


    Dr. Cunningham has developed a panel of tests that look for neuronal autoantibodies that may be the culprits in this disorder. However, it's not a definitive test to rule PANS/PANDAS in or out. It's more a snapshot of what may be happening; if the antibodies are elevated, it is just one more piece of the puzzle. Her website is: http://www.moleculera.com. Antibiotics do not interfere with her tests, but steroids, IVIG and Plasmapheresis do. If you pursue lyme testing, I think you need to stop antibiotics, but I do not have any experience with Lyme.


    I think a call to Dr. Tanya Murphy's office would be helpful. Just ask if she only sees children...but I think the term "Pediatric" refers to upwards of 18 years old. Ask for a recommendation of another doctor if she can't see you--but you seem to have a good psychiatrist right now.


    Good Luck.

  6. I was researching other CBD sources and came across one that says it is made in the USA, BUT it states it is legal in all 50 states. Is this possible?


    1. Hemp is not legal in any of the 50 states, so far as I know.


    2. Cannabis/Cannatonic are only fully legal in a few states, and medically legal in a dozen or so more.


    3. My state allows no form of Cannabis/Cannatonic period.


    This CBD oil must be made from Cannabis/Cannatonic for it to be legal in some states, since hemp is illegal in all states. Since Cannabis products are completely illegal in my state, how can this be legal in my state? More asking out loud than anything. I would ask the company this directly, but it would not surprise me if they lied to me to promote their product :(. That I cannot afford.


    I sent a question in to them asking which of the three products they make the CBD oil from. I guess I will go from there. I cannot afford to do anything remotely illegal.


    ETA: Is growing hemp in the USA illegal? I had always heard it was, but now as I research this, I am unclear...... If I find a clear answer, I will post back. Research never ends......................

    This site has a lot of links about Hemp. I'm sorry I don't have time to go through them to see what is there but there may be some information that is helpful. I've been using bronner's soap, and I love it.




    I'm also so glad everyone is seeing results. Please keep us posted. We're about ready to try an SSRI for the underlying anxiety, but I might consider this first.

  7. I am wondering if our kits are just picking up the normal strep bacteria found on the teeth responsible for decay and plaque, streptococcous mutans, rather than true strep A. I guess I will have to read my kit again to see what it is sensitive too.



    I have no background in biology, so I can't attest to the accuracy of these wikipedia entries. But, I'm pretty sure rapid strep tests are only testing for Group A Beta-Hemolytic Strep (GABS). The bacteria that causes strep throat (RF & SC) is strep pygoenes and falls under this category.


    The strep mutans that causes cavities is in the Group A category of viridans. So if your at-home test is positive, it's probably positive for GABS. Here are the wikipedia entries:


    Streptococcus - http://en.wikipedia.org/wiki/Streptococcus


    Rapid strep test - http://en.wikipedia.org/wiki/Rapid_strep_test


    My children's ped always swabs just the back of the throat, I'm going to let him know to try the inside of the cheeks and teeth.

  8. Couple other questions - not much experience here with steroids. I just read during a search on the site that you shouldn't use motrin/advil during a taper? My daughter is experiencing daily headaches and joint pain, most likely due to an elevated ana at 1:640. (also has lyme and bart). Immuno is concerned she is going through another lupus-like flair. Happened two years ago. She is scheduled to receive IVIG in ten days - she would then to need to take Motrin/Benadryl for the side effects of the infusion. What do they do then? thx

    I was told by my daughter's gastro doc that if I give her motrin or prednisone, to automatically give acid suppression (zantac or prilosec) because of the greater chance of damage to the stomach. But I want to point out that our working diagnosis for her is acid reflux. I was also told the only reason for not combining them is the risks to the stomach get worse, and it's not because taking both medications at the same time give a bad reaction. So, if you daugter really needs pain relief, in this situation consult her doctor. I personally would never combine them unless a doctor told me it was ok, but it doesn't hurt to ask - throwing in some zantac may be an option too.


    Motrin, in blocking the prostaglandins, causes the amount of mucosal lining in the stomach and intestines to be decreased--that is why it can cause ulceration.

  9. I use tyrosine a lot. However, I believe it needs to be balanced with Tryptophan or 5htp because when I forget to add that into the mix, then I get very impatient and I can't handle stress nearly as well...I begin to worry about things that normally don't bother me.


    Here is a site that claims that taking tyrosine will deplete your serotonin and taking 5htp will deplete your dopamine. I don't understand a lot about it, but I'm beginning to believe that a balanced amino acid supplement is probably the safest thing to do.



  10. Karen - so happy to hear your daughter is doing so well! How long after the onset of symptoms did you receive treatment?

    We knew something was wrong by mid-April, she started prednisone in the beginning of June. By July 4th week she was about 98% recovered with the majority of the recovery happening that last week. It took until Sept for her to shed some minor OCD, but it took about a year for her creativity to return.

  11. My DD's story is similar to your Son's. She was also diagnosed early and treated with a month of steriods by Dr. L. She didn't have noticable tics but she had a severe behavior and cognitive regression. We saw improvements with the steroids, but it wasn't until the very end of the month that she really dramatically improved. Hang in there. I am eternally grateful she was treated early because we have been able to manage this mostly by steroid tapers.


    This was about 5 years ago. Now she is going to be 11 yrs old and is doing so well! I won't say she's 100% because we believe she will always have a low level of anxiety, but she deals with it so well. She is the neatest kid, and I'm so grateful that I've been given the privilege to be her mother.

  12. I'm sorry your in such a rough spot. I've been reading about benzos and withdrawing because DD was taking clonzapam twice a day for a few weeks in the summer. If I'm reading this correctly, Clavulanate acid effects the brain at the GABA receptors like a benzo might, then you don't want to stop suddenly, a slow taper would be better.


    We took my daughter off of antibiotics, they weren't protecting her from strep, and they may have been contributing to her stomach issues.



  13. Hello. I'm sorry that you are here, but you've found a great place with many people who are willing to share. It's been a while since I've posted on a regular basis, recently I've been checking in a couple of times a day. However, I can relate to your story a lot because my daughter was excelling academiclly and socially when she changed suddenly at age 6.


    I don't think it's the younger children who do better with PANS/PANDAS. I think it may seem that way because early intervention is vital, and children who are diagnosed at earlier ages are getting treatment sooner.


    Three times since 2009, my daughter has fully responded to monthly tapers of prednisone, and we have really only used antibiotics as prophylaxis or to treat actual strep (or very strongly suspected strep). She was diagnosed and treated within 2 months of our first noticing that something was wrong.


    We are currently in an exercerbation and she is on her 4th treatment of prednisone. During her second exercerbation, I was told by her PANDAS doc that since she was diagnosed so early, we will probably be able to manage this with prednisone.


    I've come to believe that for us, PANDAS, is managable. I realize that for many on these forums, their journey has been much more difficult. However, there are many recovered children whose parents don't come on these boards much at all. Most PANS/PANDAS doctors will say that the long-term outcome is very good.


    As far as bloodwork is concerned, if you can confirm a triggering infection, then you will have a better chance at tailoring the correct treatment to eradicate that infection (if possible). How much testing and if you should get IVIG for your child are difficult decisions. They are also very individual and dependant on the uniqueness of your family situation.


    It's very very hard being in the trenches right now, especially if it's your first experience with this. Having your child change so dramatically is difficult, but so many of us have seen our children come back, more than once.


    Good Luck ((hugs))

  14. Try Blis K12. I take that instead of antibiotics to prevent strep. It got brilliant reviews on amazon and is documented in pubmed too.


    Thanks for this tip. I ordered 2 bottles. I'm sure the whole family will like it. I also used to have her swish with plain, unsweetend yougurt at night after she brushed her teeth when she would get dry lips in the summer or small cracks in the sides - I assumed it was yeast.


    We stopped antibiotics for my daughter in December because she was having stomach issues. I was considering getting some xylitol spray or gum but recently, I've had horrid stomach cramps from sugar alcohols and I guess I'm afraid she may react too because it's not an uncommon digestive irritant.

  15. lfran...i've been very suspious of hormones for a bit now...going crazy trying to understand the whole hypothalamus-pitutary-axis and it's role in autoimunity...I'm ready to give it up for my sanity (that's just my low mood today)...it's almost pointless without the labs to prove a hormone imbalance. Neuroendocrinology is a real field of research, but not of clinical treatment. Google gives me one doctor in NYC. Our family is in a stressful rut, but we're not yet ready to jump to a different doctor...getting close, though.


    My daughter's PANDAS has been managed with monthly prednisone tapers. They have brought her back to full remission three times. In March, she had strep with NO obvious symptoms. Two months later our house became ill with a gastrointestinal virus, and two weeks after that DDs PANDAS has come back. For various reasons we had to hold off treating, but we are starting her on15 days of pred tomorrow.


    Jag10, depending on who you talk to, those strep titers could really not be that significant. A school-aged child could be expected to have elevated titers all the time because of the constant exposure. I'm pretty sure it's been documented that some people's titers drop very slowly, and that is one of the reasons why more than one test is recommended to see the trend of the titer.


    Also, I wanted to mention a book that I'm reading:

    "Safe Uses of Cortisol" by William McK.Jefferies. It's written by an endocrinologist who was treating patients with cortisol for adrenal issues when steroids first were being used in medicine. He used "physiologic doses" (the amount your body produces naturally) in his patients for years-without the side effects that were being seen in treatment doses. He reports anecdotally of his patient's cases thst also saw remission in other heath issues: RF, asthma, severe food allergies and ovarian disfunction on this dose of cortisol, with none of the steroid side effects.


    Anyway, it's a moot point until a doctor would actually be willing to try it...or until a double blind placebo controlled study can show (and be replicated) that physiological doses of cortisol work safely for autoimmunity. I'm not holding my breath, I bet there's more profit in IVIG.

  16. I'm not complaining here. I know many of your children are suffering and you are working day n night to get them to where my girls are now. Some of my old mom-pal's forum names were Tenacity, NeverGiveUp....that is you all now.


    My girls have had a tome of blood work since 2009. There have been some things here and there, but for dd13, one persistent nemesis- elevated strep titers. That's it.


    Is it persistent strep infection or autoimmune response (which is that the same as faulty t-cell memory?) My 13yo always has elevated titers, always. She's had 10 IVIGs and her titers have never gone below the upper limit, hovered there on IVIG, but never below. My 10yo is also pandas, less severe, caught years earlier (thank you big sis) well controlled, never needed ivig and her titers do frequently return to the normal range. Just got lab work back in prep for our yearly face to face appt w/Dr. O and older girl's titers are ASO 287 DNAse B 495 and hasn't had strep since last year. Her symptoms are well controlled also (she's at sleepaway camp right now!), but I will say she is completely neurotypical on steroids; no social issues, confident, easy conversation, ORGANIZED. I'm guessing all we have done has helped her BBB heal, so she is better protected, but I feel like as long as those titers continue to be elevated, this won't be over, over. Her tonsils are out. In my gut, I don't believe there is any persistent infection. So...we're just waiting for t-cell memory to change because of age? Menses onset 9/2011. thoughts?

    When you say daughter is completely neurotypical on steroids, does she take them regularly? Can you elaborate on what her steroid treatment has been? Thank you.

  17. There is some information that vitamin D needs to be balanced by vitamins A and K:






    I also came across this, but didn't read it yet:


    New Evidence of Synergy Between Vitamins A and D: Protection Against Autoimmune Diseases:



  18. I have been reading up about the gut so much recently. All of those neurotransmitters are used by the nerves that control our digestion (enteric nervous system). It is so fascinitng and mind boggling to think that our digestive tract is as sophisticated as our brains, and that is why there is so much cross-over between stomach problems and "psychiatic" problems.

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