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Everything posted by TinyTreasures

  1. My nearly 4-year-old has had dark red circles under his eyes that past two days...I distinctly remember this a over year ago when this PANS nightmare began and a few times since when he's been in a flare. He is in the middle of a pretty bad flare for about a week+ (worse the past few days) but I don't know why - he hasn't been sick with anything in over a month. Any idea what causes the dark circles? Vitamin deficiency, allergies, or any specific infections? Thank you!
  2. Thank you again! I will wait to see what the sulfite strips say before adding any additional CBS supplements. Hopefully they are low so I can slowly start the MTHFR treatment! Also going to see if my son's Neurologist can prescribe any of those tests what will check amino acids, metals, etc and maybe our insurance will cover it...
  3. Okay so crap...the Molybdenum I purchased says "Molybdenum (a diluted solution of Ammonium Molybdate)". Does that mean it has ammonia in it? Exactly what I am trying to avoid?
  4. Thanks so much for starting this thread and for all your helpful information! As I posted on the last thread, my almost 4-year-old's mutations are: Homozygous: VDR Taq MAO-A R297R CBS A360A Heterozygous: COMT V158M COMT H62H ACAT1-02 MTR A2756G MTRR A66G MTRR A664A BHMT-02 BHMT-04 BHMT-08 MTHFR C677T MTHFR 03 P39P MTHFR A1298C I've been reading heartfixer and Amy Yasko's site and most of the time my head is spinning with all of the different mutations and their interactions with each other and all the treatments, and on top of it - my boy is only 3 years old! How do I know if everything
  5. Thank you, just ordered our moly drops, Methylfolate, and Methylcobalamin. I will start low and slow and see how it goes!
  6. One last question...what do you think about this supplement? It seems to have both Methylfolate and Methylcobalamin in it and gets great reviews... I would just need to slice off a small bit of the pill for my nearly-4-year-old to take: Active B12 Lozenge With L-5-MTHF | Sublingal Active B12 | 1000 mcg of Pure Non-racemc L-methylfolate | 800 mcg of Methylcobalamin and Adenosylcobalamin Vitamin B12 | 60 Sublingual Tablets | Physician Formulated | Seeking Health http://www.amazon.com/gp/product/B00822JNTC/ref=ox_sc_act_title_1?ie=UTF8&psc=1&smid=A2TW2XLT5W4EN7
  7. LLM, I just want to thank you SOOOO much for all this extremely helpful information! I read it right away but have not had time to really research everything and figure out an exact plan...I want to approach everything the right way and not make things worse. I have no idea why our Neurologist prescribed 7.5 mg - looking it up you are right - that seems so high! I am so glad you responded. Thank you SO much for even posting links to where we can get everything. I greatly appreciate this! Our little guy was doing well but since starting school things have resurfaced including the raging mel
  8. Thank you both! We will be testing for mycoplasma and hopefully bartonella also in early September. I appreciate your posts and also the one in my other thread....sorry for the delay, I've just been waiting till I had a few hours to process everything to respond. Thank you!!!
  9. LLM - thank you SO much for such a helpful explanation! That really makes sense as to why things get so bad when he is sick. His Neurologist did not give us any advice for the Vitamin D...should we start him on Vitamin D supplements since that level is so low? I just posted his genetic genie results hoping I'll get some advice on how to treat his other issues so the methylfolate and methylB12 can work efficiently. http://www.latitudes.org/forums/index.php?showtopic=21249 Also, she prescribed one 500 mg methylcobalamin lozenge per day, and one 7.5 mg methylfolate capsule every other day. Ar
  10. Okay so I have the information for my 3.5 year old from 23andme...but I am so overwhelmed about where to go from here! Only the MTHFR is something his Neurologist feels comfortable addressing, but from what I am reading it looks like other things need to be addressed before the vitamins she prescribed will take effect, and they could even have bad negative side effects if I don't address the other things first. Looking for some advice from people who have been there! He is "compound heterozygous" for both MTHFR mutations, so she prescribed one 500 mg methylcobalamin lozenge per day, and one
  11. Very interesting, thank you for posting! My son is 3.5 and is type GG for the SNP rs1800629, however I don't believe his trigger is strep. He has never come back positive for strep - throat swaps and bloodwork. Awaiting Cunningham Panel results.
  12. oh and also, yes, he has had 3 or 4 strep throat cultures - all negative, and 2 strep titers blood draws - both negative. Strep may or may not have been the original cause, but his trigger now is anything - a cold, flu, etc. His stuttering lasted about 4 weeks and as quickly as it started, it disappeared. Seems he moves on from one thing to the next. Right now it is a "hitting compulsion" - to hit himself, us, his brother, objects, and his tics 2 weeks ago were so horrible my husband wanted to take him to the ER. Head banging, screaming, grunting, sniffing, stomping, jumping, hitting himself a
  13. Hello! I just wanted to say THANK YOU to everyone who replied to my post. I have so much more hope now than I did back when I posted the original message. Augmentin has been huge in helping our son, although it isn't the full answer - we are still on the journey to find out exactly what is causing this and exactly what we need to do. But thanks to you guys I did end up getting him tested for MTHFR (did the 23andme saliva test). He is compound heterozygous for both MTHFR gene mutations. This could be huge for him! We finally got to see Dr A just yesterday and will be starting methylfolate and m
  14. Hi! Thanks so much! Do you know what the "normal" cut off number for the CamK is? Is your son doing better now than he was 3 years ago even though his numbers now are higher? My son was doing much better yesterday, today he is doing great. They mailed our Cunningham Panel today but I think we'll wait till the next flare...although fingers crossed there will never be another one ( =
  15. Thank you! Do you mind posting the numbers you got from all 3 times?
  16. Hi! Oops - my bad - I totally meant to write that it causes Tourettes-like and OCD-like symptoms...sorry! If my little guy wasn't diagnoses with PANS he would have definitely been diagnoses Tourette's - he has multiple complex motor & vocal tics going on a year. They got way better but just started up again with a vengeance from a cold. My heart goes out to everyone suffering from this!
  17. Hi! I am peeking in on this forum from the PANS/PANDAS forum where I usually am & getting lots of helpful diet & herbal ideas for my 3.5 year old. I have a question...have you ruled out PANS/PANDAS as a diagnosis? It causes Tourette's, OCD, & other symptoms but is completely due to Strep or another virus or bacteria. Your son being so young & also improving during his recent illness makes me wonder....my sons tics nearly go away during an illness but get way worse after.
  18. My 3.5 year old was doing great for about 30 days on Augmentin. Then he got a cold and after it had subsided, many of his symptoms came back including horrible tics - gasping, sniffing, grunting, stomping his feet, hitting his hand against things including his teeth, jumping. He had rages, crying outbursts over the smallest things, bad language returned, calling us names, peeing his pants, wet the bed, and I think that is it. It's been a few days and things are definitely starting to get better. His mood is much improved and tics are a bit better but definitely there. We are supposed to be get
  19. He has only had 1 fever since this all started and yes - he was WAY better with tics, rages, etc...he basically just laid there and slept or watched TV or let me hold him in my arms. As soon as he started to feel better he was ticcing 45 times a minute and trying to physically hurt me and even saying bad words in his SLEEP. I am starting to think of it as the calm before the storm. Anyone else get the same reaction to a cold? When he does great I always think we've beat it, but near the end or as soon as he is better it all starts again. We are in the midst of a bad flare from him having a col
  20. Thanks everyone for your responses! So we have decided to order the Cunningham Panel for our 3.5 year old son. He was doing amazing on the Augmentin (after 50+ days of Keflex and Zithromax not working) but got a cold around day 30 and after it was over everything started coming back. Rages, fears (he can't walk under our smoke detectors by himself right now), aggression, tics way worse.... I can't believe it but my husband STILL can't see that something is very wrong...he does not believe this is PANS, he believes it is a behavioral thing and possibly Tourettes. He always forgets how our s
  21. My little guy 3.5 years old seems to get BETTER during a cold or fever, and then as soon as he is well from it all his symptoms start to come back. He just finished 90 days of antibiotics and did AMAZING on the last 30 days once we switched to Augmentin. He got a minor cold while he was still on the antibiotics and did great through it, in fact most of his tics were gone. I thought finally his immune system had healed after all these antibiotics. But sure enough he got a bloody nose two days in a row (this seems to happen most times he has a relapse) and then started with arm jerking tics he h
  22. Thx everyone! From what I was reading on the Internet 59 sounded very high...maybe not? I will call the Neurologist & see if the number was lower on his last test. He was tested for Mycoplasma & MTHFR but the lab messed those up & we are going to redo Mycolasma & rely on the 23andme I just ordered for the MTHFR result. I don't think she tested for any other infections but I'm going to request Lyme...anything else to look for?
  23. My son was diagnosed with PANS over 3 months ago and we are 90+ days on antibiotics. Only the last 30+ have been working (Augmentin) - before that Zithromax & Keflex didn't work at all. He is only 3.5 years old but PANS has affected him badly. Thank God this past month he has had so many 95% back to normal days. He got his first cold since starting antibiotics about a week ago and things started resurfacing a bit, but for the most part he got through it great...his first illness without things becoming horrible again. Right now he is about 85% himself but I think his body is still fighting
  24. Thx all! I just remembered someone told me in a post I wrote a while back that they had a spreadsheet they could email me for symptoms tracking - rowingmom was that you? I would love to do that. I have a lab order for the MTHFR and Mycoplasma tests that the lab messed up the first time, but if I have to go back again I would also like them to test for Lyme so I would need a new order My 3.5 year old was pretty traumatized even though we used Emla...the 3rd time they took 1.5 hrs to get us in and the EMLA wore off and they had to poke him twice...just a really difficult experience, so I wan
  25. Mayzoo - I called the lab last week to request the insurance codes. Here is what he told me: 83520 - 4 times 88230 - 1 time 86352 - 1 time My insurance is BCBS and they only (maybe, depending on what reason the lab gives for it) will cover the 88230 code, but we will still submit it with our fingers crossed.
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