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Everything posted by TinyTreasures

  1. My son started with severe PANS symptoms at age 2.5. To make it very short, for about 3 years life was close to h***. He simply was not the same child anymore. Antibiotics (Augmentin) was his miracle drug. We had to start it immediately with every illness - even a 1/2 a day of a cough and runny nose, and things still were sometimes unpredictable. For instance, every time he would get hungry it would like his PANS symptoms came back full blown, and once he would eat he would be back to himself. About 3 months ago we even tried Zoloft with DIRE consequences. His symptoms were near their worst o
  2. Thank you SO MUCH for your replies! I ended up taking my son completely off Zoloft about a week ago. Within the last couple days he is finally nearly back to himself. He went from swear words hundreds of times a day to 1 bad word and a few not-so-great words today. This morning he went on and on for 10 minutes about how much he loves me!!??!! Last week he was literally pointing toy guns at me saying they were real and he was going to kill me, and talking about how my red shirt was because he hurt me and I had blood all over. Complete 100% incredible turnaround, a totally different child. I bel
  3. Hello, I was wondering if anyone had any knowledge or experience with having their child on Zoloft. After a year of his play therapist and psychiatrist recommending Zoloft we finally got to the point where we were desperate enough to try it. My son is 5 and has had PANS since he was 2.5. He was put on a mere 12.5 MG one time a day. The first couple days things were great - he seemed happier, less anxious. But by day three he was MANIC. Asking 10+ questions a minute, talking literally nonstop, energy to burn, OCD was worse - he woke up in the morning NEEDING to go on an adventure to look fo
  4. My son (now 5) was hit hard with PANS when he was 2.5. Complete personality change & tics overnight. He is doing okay, not great, but life is now bearable by starting antibiotics at the first sign of an illness. His little brother just turned 2 last month. He has been an angel baby, so happy go lucky, perfect eater (my 5 year old has severe food anxiety), the sweetest and most loving cuddly little guy. Never had any of the sensory issues my oldest had. We have all been sick on and off over the past month and out of the blue my 2 year old stopped eating...like he eats less than half of
  5. Just wanted to say thank you and yes I would love more details - will PM you Mayzoo ( =
  6. We did the Cunningham Panel recently in August. It took exactly 8 weeks on the dot to get our results back. They came back just below the middle range for "Likely". At the time he was tested, his mood and behavior were wonderful, NO WHERE NEAR their worst, but his tics were very bad. All other levels were either right at the bottom of normal or BELOW normal which was also helpful to know. He was taking antibiotics at the time. I am VERY glad we decided to do it, because up until then we had been second guessing everything constantly. Finally we had an answer and it is a relief to be able to te
  7. Thank you all very much, VERY helpful! We are going to pursue vitamin therapy either with Mensah or someone else. Still looking into it. He was only tested for Lyme...we are in AZ and he's never been anywhere besides AZ and CA so I think Lyme was a slim chance and his Neurologist didn't even want to test for it, but we pushed for it. I was also tested for it and it came back negative. I know it can be really tough to find though... Mensah seems very knowledgeable on methylation, but they do look at a lot of things including metals and organic acids. I think at first they focus on the B and
  8. Looking for someone knowledgeable in PANDAS as our only PANDAS Neurologist is out for who knows long due to medical reasons. Have any of you used or heard anything about Dr. Seshagiri Rao in Texas? Thank you! http://www.allergyandasthmatreatmentcenter.com/Allergy_Testing_Plano_TX.html
  9. Have any of you tried vitamins as treatment for PANDAS/PANS? None of my son's blood tests for infections have come back positive (Mycoplasma, Strep, Coxsackie, Lyme, Influenza, etc) but he was positive on the Cunningham Panel, is compound heterozygous for the MTHFR gene mutation, is vitamin B12 and B6 deficient, vitamin D is low, copper levels on a hair test came back off the chart high, zinc low, lithium low... We met with Mensah Medical this week - they do biomedical treatment with vitamins and are really knowledgeable about the methylation cycle. After seeing a post on here about it, I
  10. Our Neurologist in AZ has been out of the office due to medical reasons with no returning date scheduled... I see the provider list on the pandas network site but am wondering if anyone has any personal recommendations from experience? Thank you!
  11. Its been quite a while since I posted - I had been asking questions about the Molybdenum containing ammonia and possibly causing the circles under my (now) 4 year old's eyes and increased irritability. Well I decided I needed to know what was happening inside his body before trying any more supplements, including the ones for the MTHFR his Neurologist prescribed. (Below are his mutations again). I did the metals hair analysis test from http://pyroluriatesting.com/ - it was $85.00. I also asked his Dr. to test his ammonia levels when they took his last round of bloodwork. His ammonia level
  12. Thank you for trying to post! I finally got the fax from his pediatrician and there clearly is the Integrated Result which shows the combined result of the 5 tests. Not sure how she missed it... Despite all first 4 tests being very much in the green (not likely for PANS), the CaM KII result of 141 put his overall result at Likely - about 1/3 of the way into the yellow zone. This test was done during a flare (bad tics and some other things) but he was no where near as bad as he was at the beginning. I am guessing it would have been in the red back then. It is a relief to finally have a defin
  13. Thank you! T. Anna...so on the sliding scale were your CamK results at the exact same spot as the overall results, or was the overall result lower since the other 4 tests were normal?
  14. YES thank you!!! Just an hour ago. I posted a new topic here with his results: http://www.latitudes.org/forums/index.php?showtopic=21466
  15. Finally got my 3.5 year old's results back - his pediatrician read me the numbers over the phone (Neurologist hasn't gotten to see them yet). D1: 1000 (normal 500-2000, normal mean 1056) D2: 1000 (normal 2000-8000, normal mean 6000) Lysoganglioside: 80 (normal 80-320, normal mean 147) Tubulin: 250 (normal 250-1000, normal mean 609) CamK: 141 (normal 53-130, normal mean 95) There is a sliding scale with colors showing green for NOT likely Pandas/PANS, yellow for likely Pandas/PANS, and red for HIGHLY likely Pandas/PANS. My son's only result in the yellow for Likely Pandas (middle of the ye
  16. So his pediatrician isn't in today so I won't hear back until tomorrow. Soooo anxious to hear the results.
  17. JUST NOW GOT THE NEWS - the results are in!!! Going to call our Dr now to see what they say. So excited and nervous.
  18. Today marks 8 weeks since Moleculera Labs received the Cunningham Panel test for our son. Their website says 6-8 weeks and when I called last week she said it should be soon since we were approaching the 8 week mark, but couldn't provide any more specifics. I am SO anxious to know the result! There is so much waiting with PANS - waiting 3 months to meet with the Neurologist, waiting to see if antibiotics will work, waiting to have tests done, waiting for test results to come back, waiting to see what the next trigger will be, waiting for 23andme results, waiting to start MTHFR treatment until
  19. Thank you all! I would keep him on the antibiotics, but my husband does not believe in PANDAS even though he has never researched It, he just thinks this is a behavioral thing. He lives very much "in the moment" - I can't understand it at all but it is almost like he can't remember how our son was a week before, even if he acted like a completely different child! He has said though before that he just doesn't want to believe anything is happening, but he knows something is going on. We get our Cunningham Panel results back hopefully next week. I wasn't aware we should taper Augmentin if we
  20. Thanks so much for all that information! I am learning so much through you all! I think that is a good idea - I am stopping the Molybdenum until my son is more back to himself, then I think I will try it again and see if it has the same effect. I know he was already in the middle of a flare when I gave it, just not as bad as the days he was on it but that could have been completely coincidental since he improved at the same time I stopped the Moly and started antibiotics. I just ordered a urine test for Kryptopyrrole. Someone on this board mentioned it months ago and I was going to ge
  21. My son is nearly 4 years old and diagnosed with PANS about 6 months ago. His Neurologist tried Keflex and Zithromax with no change, but Augmentin seems to be our miracle drug. He has been started on Augmentin 4 times in the past 9 months and every single time, within 3-5 days he is 90-95% back to himself. One time he had a relapse after a cold after being on Augmentin for 30+ days so we stopped the Augmentin and he got really bad - HORRIBLE tics. We started it back up after a few weeks and once again he was WAY better within 5 days. My question is this - what possible infection could Augme
  22. Thank you all! Maybe a reaction to the Molybdenum we started a couple days before the dark circles appeared (although he was already in a flare before that, just not nearly as bad). Hard to tell since we started Augmentin and stopped the Molybdenum at the same time and by the next day he was markedly better.
  23. We got the test strips today and I had to test, even though it was bedtime. They are hard to read but I think he is in the 800 range? He is such a picky eater...only has about 20 things he will eat so this is going to be tricky. I feel like I need to find some supplements to help lower sulfur since there are only a few things on the sulfur list he even eats. Question - we started giving him Molybdenum, and within 2 days he had very dark circles under his eyes and his mood was absolutely horrible - everything bad from months ago resurfacing with a vengeance. After giving it I realized the b
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