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TinyTreasures

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  1. Like
    TinyTreasures got a reaction from lmi1973 in Can Vitamins really be helping my son this much!? Incredible.   
    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. Like
    TinyTreasures got a reaction from MomWithOCDSon in Can Vitamins really be helping my son this much!? Incredible.   
    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.


  3. Like
    TinyTreasures got a reaction from lovemylittleguy in 5 Year Old put on Zoloft, things got WORSE!   
    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.




  4. Like
    TinyTreasures reacted to qannie47 in I feel like we won the Lottery.   
    The lumbar puncture results are in....It is autoimmune.....which means.....our doctor is writing a letter to our insurance company supporting an autoimmune diagnosis.......and they have to reimburse us 9K or 70% of it anyway because the FDA approved treatment for this is.....what do you know....IVIG.
     
    All future IVIG will be covered.
     
    MY DS STILL DOING WELL. IN FACT GREAT. RECEIEVED AN EMAIL FROM TEACHER REPORTING HIS BEST DAY YET. 100% SHE IS AMAZED. PRINCIPAL AS WELL NOTES THE REMARKABLE DIFFERENCE IN HIM OVER THE PAST TWO WEEKS SINCE HE HAS MOVED OUT OF HIS RECENT, HORRBILE, THREE WEEK EPISODE.
     
    YEA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
  5. Like
    TinyTreasures got a reaction from EAMom in Close to being diagnosed Bipolar   
    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 methlcobalamin tomorrow. His vitamin B12 level was 1439 when the normal range is 243-894 (just building up in his system but not being used). His vitamin D is 15 when the normal range is 30-100 (will the vitamins she prescribed help this as well? I can't remember what she said about that).
     
    Going to test for mycoplasma, coxsackie, West Nile, HHV6, and Lyme in September while he is under anesthesia having a lipoma removed, and currently waiting on our Cunningham Panel results (did that while he was under anesthesia having a cavity filled).
     
    But thank you so much, and to anyone facing a bipolar diagnosis keep searching and trying things and don't give up!
  6. Like
    TinyTreasures got a reaction from lfran in Close to being diagnosed Bipolar   
    ps - my precious little boy was off the walls happy last night until right before he fell asleep, he started calling himself "Stupid" again. This morning he was in his bad mood again but trying to get out of it. He wanted me to do something funny that he always cracks up about in the past and I was doing it, and he was getting so frustrated because he couldn't laugh about it and even said "It won't let me laugh". Fortunately a little later on he became much happier again. He has had a lot of mornings the past 19 days that are really bad, and then by lunchtime he is back to happy again and even continues to have excellent days. Can that be because the Augmentin I give him at 9/10am kicks in?
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