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TinyTreasures

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Posts 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 on Zoloft, and after a week I stopped even though his psychologist said to double it (yikes!). Never again.

    That is when I became very consistent with his vitamins - I had given them to him before but not consistently. So every single night for the past 3 months he gets a Flinstone Vitamin, Fish Oil Capsule, Probiotic, Dr Rob Keller's OGF (Original Glutathione Formula), Methylfolate and sometimes Methylcobalamin (due to MTHFR gene mutation), Zinc (due to off the charts Copper shown in a hair test), and I started adding Vitamin D (he was shown deficient on all his blood tests) and later Vitamin B6.

    The result was nothing short of incredible. Finally we saw "our son" for longer periods of time than ever, and he even went through 2 minor sicknesses without antibiotics for the first time in a year!!! His personality was back. He did not say a curse word in months (at his worst he said the F word literally thousands of times a day). The only thing still left were tics - not as bad as they had been in the past - but still not great. So two separate times I didn't give him his vitamins for 2-3 days to see if maybe I was giving him too much and it was causing his tics. Both times he regressed back into full PANS symptoms. Rages and irritibility, tantrums over everything, constant need to hurt us and others, OCD, obsessions with violent things, worse tics, major sensory issues, fears, etc. Both times he went back to himself within 2 days of restarting the Vitamins. Seems like way to much of a coincidence to be a coincidence!

    I feel like I HAVE to post this because it is truly incredible how a seemingly simple issue like Vitamin deficiencies can completely change your child's entire personality. And hopefully this will help someone else - it was actually someone who replied to my last post asking if I was giving Vitamin D which caused me to start, and I think that Vitamin has helped incredibly.

    So thank you and don't give up...your child is in there!!!

    Also one last thing - about a month ago I tried adding liquid Magnesium with Calcium and within a week his tics were horrible and his personality/behavior as well. After stopping it he returned to how he was before. I read somewhere that liquid Magnesium feeds Spirochetes. My son has never been diagnosed with any official reason for his PANS, just elevated HHV-6 levels (he did have Roseola 3 weeks after PANS started), so this is something I will bring up to his Dr on his next appt.

  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 believe he had serotonin toxicity and SSRI's are something we should absolutely avoid.

    He is currently on Augmentin, and before the Zoloft I did Omega-3 (but just a low dose, I think I will increase it), Probiotics, Zinc, Folate, and Dr Rob Keller Original Glutathione Formula. I had quit most of those things because I was worried about bad interactions with the Zoloft.

    I want to find a homeopathic Dr in AZ to start going to. His diet is absolutely horrible - he has food neophobia since 10 months old and is terrified of trying most foods. He does like fruit, but mostly lives on protein bars.



  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 for rattlesnakes to catch and sell and would not give that idea up for anything. Doing risky things like climbing up too high or running off in public, he stopped fearing consequences and thus stopped listening to anything we said. He became very aggressive and violent, constantly trying to hurt us and his little brother, even in PUBLIC which he has never done before. He started swearing hundreds of times a day calling us all stupid and f******.

     

    I lowered his dose to 1/4 a tablet - so not even 6 MG and put a call into his psychiatrist. She still wanted to raise his dose to 25MG a day, despite his symptoms, and give it a month to see what happened. I was scared to go even higher seeing how he was on half a tablet, so I stayed at 1/4 tablet and quit altogether today. His hyper manic mood disappeared when I went to 1/4 tablet, but everything else is horrible still. Things are SO bad, he is really out of control.

    I do need to mention he was sick soon before we started Zoloft, and then sick again during it for a few days with a high fever. That always sends him into a flare but antibiotics usually helps after a few days and doesn't seem to be helping now.

     

    Were we right to cut back and then stop the Zoloft because his symptoms were worse? Or should we have given it more time? I read up so much on Zoloft before finally trying it and nearly everything I read was that it helped immensely very quickly, I don't remember anything saying it made things unbearable. Thank you in advance.

  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 what he would before and calls things he LOVED yucky....won't even take 1 bite. He has become super clingy wanting to be held all the time & won't even go to daddy, it has to be me. He stared saying "stupid" and "you are stupid" all the time, has a hard time getting to sleep, and started pointing things out like pieces of trash on the ground and dirt or marks on things and asking "what's that?"

     

    So much of this reminds me of my older son, but no tics, although of my older sons first tics or compulsions was saying the f word hundreds of times a day and calling himself stupid.

     

    I am so scared...I can't lose 2 boys to this disorder! I have an ongoing prescription for antibiotics...once my older son is done with his round should I give them to my toddler? I can't mention this to my husband...it took 2 years for him to finally be convinced our older boy has PANS to begin with and he would think I am crazy all over again if I did say something. But I know if you can catch this early enough with antibiotics sometimes it will never come back again! Thank you for listening...

  5. 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 tell people and Doctors that he does indeed have an autoimmune disorder, not just that he was diagnosed but we aren't positive. Hope this helps!

  6. Just curious if you tested for the lyme coinfections - bartonella, babesia, ehrlichia - or just lyme?

     

    Wonderful that you have found help with someone who understands methylation. Please keep us updated on how your vitamin supplementation progresses. Does Mensah Medical address possible mineral deficiencies as well? Some of the MTHFR deletions increase the requirement for magnesium (to help methylation) and molybdenum.

     

    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 D vitamins, and specifically copper, zinc, and histamine results. Also Pyrrole which he tested negative for.

  7. 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 have been thinking for a while now that the Augmentin has been helping because it has anti-inflammatory properties (same reason Ibuprofen works), and when I asked them why the Augmentin was working they said the exact same thing! They think treating all his imbalances will have the same effect with the inflammation and we may be able to wean him off antibiotics once the vitamins start working. So I was curious as to if anyone else had tried vitamin therapy or even tried Mensah Medical?

    Also, has anyone tried Turmeric? Someone told me today it is great for relieving inflammation naturally. Thank you!

     

  8. 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 levels tested just above the normal range...not too much higher though. His hair analysis sulfur levels actually came back pretty normal - on the low end! Strange considering the urine test strips (which are super high to read) seem to show it being high.

     

    But most interesting, his copper level is OFF THE CHARTS high! Normal is 11-18 and his is 69! And his Zinc is low. Normal is 100-190 and his is 51. I have been reading a little about it and it seems this could be a huge finding for him! Check it out: http://www.drlwilson.com/articles/copper_toxicity_syndrome.htm

     

    "Dr. Paul Eck called copper the “emotional mineral”. We have seen improvement in 20 or 30 different mental and emotional conditions ranging from moderate to suicidal depression and anxiety to violence, obsessive-compulsive disorder, bipolar disorder, phobias, Tourette’s syndrome and schizophrenia. Others that respond amazingly well to balancing copper include epilepsy, ADD, ADHD, autism, delayed mental or emotional development and many others. Panic attacks, migraines, spaciness, brain fog, mind racing, insomnia, nervousness, irritability and others also often involve copper."

     

    My son has displayed pretty much every "emotional condition" listed above - anxiety, violence, OCD, bipolar, phobias, Tourettes, and schizophrenia (hearing voices).
    Since there are so many things he has that need to be addressed, I've decided to take him to a Dr. who can help me put it all together and get him on a vitamin treatment plan. I am thinking Mensah Medical. I also did the Kryptopyrrole test and am just waiting for the results.

     

    Also, his blood test results came back - he was tested for Strep, Lyme, Mycoplasma Pneumonia, EBV, Cocci, Coxsackie, West Nile, and HHV6. The only thing that came back high was HHV6 (Roseola) which is interesting because 2 weeks into this whole PANS nightmare when it all began 1.5 years ago, he had Roseola. Waiting to hear from his Dr to see if she wants to address it.

    Thanks all for your advice and to whoever said perhaps it was "copper dumping". It looks like you were right!

    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
  9. 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 definite answer, now awaiting test results for Mycoplasma, Lyme, etc.

  10. 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 yellow portion) is CamK.

    On Moleculera's website the "sample report" has an Integrated Results sliding scale which takes in account all 5 results and tells you the overall likelihood of this being Pandas. But on my son's report there is NO Integrated Results sliding scale, only the sliding scales for the 5 tests.

    Anyone know what this means? His pediatrician who isn't familiar with Pandas or the Cunningham Panel says it appears he does not have PANS since 4 of the 5 are in the green.

    Also, anyone know what being at the low normal or BELOW normal would mean? Is that just extra good?

    Thank you!

  11. 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 the CBS mutation is addressed...it is definitely true that this is a marathon and not a sprint. But this Cunningham Panel result is so important and will affect almost everything else. I hope I get the email today!
    Sorry just needed to vent a little...

  12. 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 stopped it! By tapering it, could it allow the bacteria to slowly be able to build up against the antibiotic until it doesn't work? That is just what I thought...I never read anything like that. The first time he was on Augmentin his pediatrician prescribed it for the standard 10 day course and it worked amazingly well! The next time we started it because his PANDAS expert Neurologist prescribed it, and we kept it up until he got a cold and a flare from the cold. Then my husband said it must not be working and wanted to stop it. We stopped for several weeks and our son's tics were SO extremely bad. We did another 10 day course. Then I just started back up a few days ago (against what my husband wanted) because I knew he was in a flare, and once again it seems to be working. Augmentin has never fully eliminated the tics though, but it has helped bring our son back personality-wise 90-95%.

     

    His symptoms in a flare are rages - absolute meltdowns over EVERYTHING, heightened sensory issues especially sound and food smells, sometimes ADHD behavior where he can't concentrate or focus on anything - you have to repeat yourself over and over and look right in his eyes for him to even hear you, speaking jibberish, stuttering, obsessions with everything bad and scary - monsters, ghosts, villains, killing, skeletons, zombies, etc., major irrational fears such as fears of the smoke detectors and outlets, major separation anxiety, difficulty falling asleep, being SO mean to his baby brother (when he is himself he is the sweetest brother ever), wetting the bed, hearing voices ("the head guy"), and horrible tics including hitting himself, hitting his head on things, stomping, grunting, jumping, arm jerks, restless behavior to where he can't sit still, grunting, sniffing, SCREAMING at the top of his lungs, blinking, and horrible language including the f word (usually not even when he is mad - often singing it in songs and just saying it to say it). We do not use bad language in our house, and when he is back to himself he NEVER says this word.

     

    Hopefully our Cunningham Panel results will be definite one way or another. Thank you so much for ALL of your advice...I won't be stopping cold turkey again.

     

    Oh also, what dosage (and age) are your children on? My nearly 4-year-old 30 pound son is on 250mg/3ml two times a day...does that seem too low?

  13. 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 get it but forgot, but I was talking to my mom yesterday and she said my nephew has Pyrrole disorder. The symptoms sound so much like my son's PANS in a lot of ways. I am also thinking about signing my son up for Mensah Medical - this would be a big expense but he is so young - not even 4 years old - and I feel like I need a Dr. who is much more knowledgeable than me to tell me what is safe for him and exactly what he needs. My nephew is their patient and he is doing so much better on their vitamin regimen...a year ago he was put into a mental institution and now he is doing great!

     

    But we have a couple things coming up first - our results for the Cunningham Panel should be back hopefully next week, and then bloodwork on September 15th to check for infections.

    So sick of Dr. appointments and feeding therapies and staying up till 2am researching these things...I want to go back to our calendar 2 years ago that was filled with playdates, park, library, and fun outings =(

  14. 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 Augmentin be fighting to have worked so well every single time? We have bloodwork testing for Mycoplasma, West Nile, Coxsackie, HHV6, and something else I can't read coming up on September 15th and I am wondering if there is anything else we should test for? Something that Augmentin works against?

     

    Thank you!

  15. 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.

  16. 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 box said "a diluted solution of Ammonium Molybdenum" - not sure if that means there is ammonia in it, but if there is that is exactly what we were trying to avoid! Could the Molybdenum have caused the dark circles maybe? He was already in a flare but not as bad as the days he was on the Molybdenum.

     

    I stopped the Molybdenum on 9/4 and the next day his eyes were definitely better.. However we also started back up on Augmentin on 9/3 (his miracle drug during bad flares) so it is hard to tell which thing did the trick. Today - 9/5 - he is nearly back to our sweet boy - COMPLETELY different than the past 2 weeks.

     

    Do you think I should try and purchase a Molybdenum where it is specifically listed that there is no ammonia?

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