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TinyTreasures

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TinyTreasures last won the day on July 25 2015

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About TinyTreasures

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  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?
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