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bigmighty

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Posts posted by bigmighty

  1. DS 22 had his tonsils out in 2016 and had IVIG in June 2020 (prior IVIGs in 2011). He went off of antibiotics in October 2020 and had a speedy return of many PANDAS symptoms.  I wanted to share with you two things that have helped him the most - 

    1.  After reading the Frontiers in Microbiology study of Gut Microbiota in Children Affected by PANDAS (https://bit.ly/39pPmxP), we asked the internist about supplementing with l-tyrosine (https://amzn.to/36k62oH). She agreed that we should try it.

    2.  After reading the NIH study on Differential Bindings of Antibodies in PANDAS (https://bit.ly/3lmImnP), we asked the internist about supplementing with citicoline (https://amzn.to/39x2hON).  She agreed to this, as well.

    When he takes tyrosine and citicoline daily, he functions at about the 93% level. It was a fast and amazing positive change that seems to be holding nearly a month in.  Hoping this info is of some benefit to others.

  2. Are you doing anything anti-inflammatory?  Try ibuprofen 3x a day for a week and see if it helps.  Or try turmeric 2x a day.  If she does even slightly better while inflammation is reduced, it's helpful to know, as it suggests something autoimmune is involved.  Steroid tapers have helped my son several times.  If you can convince a doc to prescribe them for a couple of weeks, that may be something worth pursuing.

    So sorry you are going through this.  Sending virtual hugs.

     

  3. DS wants to to it.  DH is on board to spend our savings to make it happen.  I am the only one with reservations.  DS will see his internist this May to get 2nd opinion (she knows Swedo and is very up-to-date on latest studies/articles).  If internist agrees, we will have a call w/ Dr. K in Jan, then labs and another call w/Dr. K in March.  Hypothetically, then IVIG in May 2020.   Thanks.

  4. DS had his most significant flare from Dec 2010-April 2012 at ages 12-13.  He had IVIG 2x in 2011 as part of 2nd NIH clinical trial.  He seemed to have recovered very briefly after 2nd IVIG,  but got strep 3 wks later and we lost him again for another year.  Remission from that most significant exacerbation came about two months after a three-week steroid taper while on Augmentin 875 per Dr. B.  He had his tonsils removed during senior year in HS per Dr. K phone consult - said we could not send him to college without removing them first.  ENT found 33 different infections on tonsils during biopsy, and even though DS was on antibiotics, he got mycoplasmic pneumonia after having the tonsils removed and it lasted for seven months - was ill well into beginning of 1st year college - and it caused him neuro-psych symptoms.  Months of Bactrim with steroid taper finally kicked infection and OCD.

    DS is nearly 21 now a 3rd year engineering student on Bactrim during the school year.  He has had a few minor flares since beating the myco-p, but other than extreme textural and food sensitivities and difficulty staying on the weight chart, he basically manages to keep everything pretty much under control.

    Dr. K says DS must have one IVIG within the next two years and that this is his only chance to possible be fully cured (80% chance of complete recovery).  If DS waits, he will lose his window of opportunity and the treatment likely won't be effective.  So WWYD?  Keep bandaiding with various supplements and use antibiotics and steroids as needed for life during every flare (and pray that his internist who prescribes these things never retires)?  Or spend however much it costs for the IVIG (we would do it in one year - right after he graduates from college and starts his first real job), and hope it works?  

    We have heard that IVIG sometimes brings on a flare of symptoms that can be very difficult to eradicate.  Plus, DS is Jeckll & Hyde during IVIG - think Linda Blair in the Exorcist one minute and Steve Martin's wild and crazy guy the next.  When he had IVIG at age 12 he tried to destroy the hospital room and spit at and cussed out the nurse (so out of character for him).  We are afraid they would need to straight-jacket him for their own safety now that he is stronger and might do real damage.

    DS is at about 85% functionality right now and manages his own medications and symptoms well.  Do we risk losing a solid B in an attempt to make it an A for life?  

     

  5. What are you doing as far as anti-inflammatories go?  Is he taking ibuprofen or turmeric or prednisone?  The behaviors are based on the brain inflammation, so even though it doesn't solve the actual problem, reducing inflammation can help greatly with respect to controlling the symptoms

     

  6. My son ended up with a very long-term remission after a three week steroid taper (that was following two months on antibiotics).  My son remained on antibiotics for an additional full year during/after the taper so the benefits lasted.  It was sort of amazing.  About two months AFTER he finished the steroid taper, the light switch simply turned back off.  Went from full-blown OCD/anxiety to zero of either.  

  7. When we attempted to get an appointment with Dr. Latimer, the assistant booked us an appointment 100 days out then instructed us to send a nonrefundable check for $1,000 to lock in the appointment.  No idea if that's still the protocol.

     

  8. A long time ago, my son used ibuprofen 3x daily for about six months, but he was 12 years old at the time, not seven.  We eventually discovered turmeric.  He now takes a 600 mg capsule 2x daily and says it feels the same to him as 15 mg of prednisone in terms of the benefit.  I am not sure how you administer that to a seven yr old, who may not be able to swallow pills.  Am guessing you could open the capsule and mix the contents with applesauce or jelly (but not sure what that would taste like).  Anyway, I definitely would try ibuprofen 3x a day for a month while figuring out what to do next and not worry too much about the down-side.  

  9. My DS only responds to bactrim to treat mycoplasma infections.  He also needs 3 week steroid taper to eliminate the accompanying neuropsych symptoms, but I understand that you might be afraid to consider steroids right now.  My son always takes a 600 mg turmeric capsule 2x daily to reduce brain inflammation.  Is your son at least taking ibuprofen around the clock (like 3 pills every six awake hours)?  Anything you can do to reduce the inflammation potentially could reduce the symptoms while you are figuring this out. 

    Honestly, I would find any doc who is familiar with PANDAS and see how quickly you can get in to see that  person.  Ask if they can switch up the antibiotic and possibly do a closely-monitored steroid trial.  I am so sorry.  

         

  10. For DS the food aversion and difficulty swallowing is directly related to brain inflammation.  Years ago, we found that if he took ibuprofen 3x a day for a few days, he had much less trouble. Now he takes turmeric capsules twice daily which seems to make things much easier on the food front.  Once in a while, he still gets an occasional challenge with eating.  When that happens he takes 5 mg prednisone for a few days along with daily antibiotics and gets things right back in line.  He still self-restricts and has a limited diet, but is doing much better than before he added the turmeric.

  11. My son takes 300 mg turmeric twice daily.  He is a young adult and weighs 140 pounds.  https://www.amazon.com/Solaray-Guaranteed-Potency-Turmeric-VCapsules/dp/B004OU177M/ref=sr_1_1_a_it?ie=UTF8&qid=1512402634&sr=8-1&keywords=turmeric%2Bsolaray&th=1

     

    I suspect a very small amount either from your spice bottle or taken from a capsule and stirred into applesauce or used as seasoning on cooked food would be sufficient for a four year old child.    DS did take ibuprofen 3x daily for a month, at one point, but he was 13 at the time.  Now that you have gotten the inflammation down, it is very important to keep it down for a while so any research you can do on natural antiinflammatories would be helpful.

  12. My son is compound heterozygous.  If you have mthfr gene mutations your body is less able to turn B12 and Folic acid into methyl-b12 and methylfolate (the form needed by the body).  So one's B levels can be quite high in untreated mthfr gene mutations.  The body has plenty of B vitamins, it just can't effectively convert and use them.   Is your child now supplementing with methylb12 and methylfolate?   My son supplements with the drops.  You have to start very slowly and build up to a higher dose gradually. 

     

    http://www.empirical-labs.com/vitamins-supplements/liposomal-b12-methylfolate/

     

  13. I am so sorry.  DS's long-lasting remission came from a 3-week steroid taper coupled with augmentin 875 2x daily.  At first, he got a bit worse, then remission came two months after the taper ended.  He remains on antibiotics and turmeric.    Would he be willing to try steroids?  Clearly needs to reduce brain inflammation.  Again, terribly sorry.

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