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Posts posted by Mayzoo

  1. Hello,

    My son now 19 has had Pandas since he was 15. His ASO titers have been in the normal range for more that 2 years but still very OCD and a very fearfull of bugs. Is anyone dealing with the same issue and how are you taking care of it?



    My daughter's titers are VERY low (DNASE-95 and ASO-6 during an actual strep infection).


    For OCD, most folks on here recommend treatment with the proper antibiotics to get the underlying issue in control and ERP (Exposure-Response prevention). A google search on this is very informative: My link,


    In a nut shell, it is slowly and methodically exposing a person to what they fear in a manner they learn they can handle and overcome the fear/anxiety associated. It is very empowering when successful. Read up on it. There are many ways to this wrong and the negatives of doing this wrong are not good, BUT if you read up on it, it can be successfully done at home by a well-read parent.


    I am also giving my daughter lemon balm capsules for separation anxiety at the moment, until we get a good handle on the ERP and a bit deeper into the program.

  2. Bactrim is a SULFA drug. Sulfa drugs are more appropriately labeled sulfonamides and are derivatives of para-amino benzoic acid.


    Sulfur is an element of the earth. This element is essential to life, and is the eighth most prevalent element in the human body. They are not the same, thus issues with one does not preclude taking the other in any way.


    A sulfanomide does contain sulfur, but the sulfur atoms are imbedded in a complex molecule. The sulfur atom is not the allergenic agent and being allergic to sulfa drugs does not imply having a propensity to allergy to other sulfur compounds.



  3. Thank you SO MUCH for posting this. My daughter is constipated constantly and nothing really seems to work very well. I will order right now. Thank you again.




    You are welcome. Since it is a fiber, start slow and increase to how much works. As with all fiber supplments, if you start high dose, then you may have too much gas and bloating. The recommended dose for adults is four caps a day. I am giving two caps with her probiotic mid day.


    At least for me, every little battle we can solve makes the big ones easier to cope with. I think solving this has aided in my kiddos fear of potties too. Either that or the lemon balm is helping with that.....either way, two small issues solved for now :D:lol::D:D !!

  4. I tried inulin, but found it caused too much gas/bloating. It certainly was easy to hide in food/drink as it doesn't thicken, but we ended up using psyllium husk instead. Isn't it great when you find something that works? Perhaps inulin may work more efficiently now that DD11 has been taking probiotics for a while. Thanks for posting.


    Yeah, it is great to solve as many small issues as possible--almost makes the big issues less daunting. I give kiddo the inulin at the same time as her probiotic. No serious gas issues yet......crosses fingers.

  5. Here we are again with my dd3 (not diagnosed w PANDAS but suspect) having her 4th positive rapid strep in 8 weeks. Broke the bank and took my other 3 kids in as well. All positive. They all got a bicullin shot.

    We just came back from a PANDAS doc in north Texas with my dd11 who does have PANDAS. We all have Lyme, too, and I am taking her to a Lyme doc in early April.

    I think I'm just feeling overwhelmed with the expense of it all. It seems like we have really deficient immune systems, and I cannot imagine the expense of treating us all. Right now we are just treating our raging, confirmed kiddo for PANDAS and Lyme. I'm afraid I'm going to send my already overwhelmed husband over the edge.



    Oh, I am sooo sorry to hear this. With what we pay to treat just kiddo and my attempts to boost my immune system so I do not get her sick, I cannot imagine paying to treat six. I hope you have good insurance, but I know much of this stuff is not covered or is out of network.



    Are they retesting the 3 yr old after treatment or just waiting for symptoms to reappear? I know my kiddos doc did not want to retest her after the first treatment, but when I pushed the issue hard, they retested her and she was still positive and continued to be positive for almost 60 straight days. Now they test her every time I take her in, and I have rapid strep tests I keep at home (bought on Amazon) in case I suspect she is positive.

  6. This is the list recommended for my 3 children. I have located some. But the are mostly pills or tablets. I was curious if anyone knows if they come in a liquid or powder and how they taste. Thanks!!



    Riboflavin 50mg

    Vitamin E 200IU

    Folic Acid .50mg

    CoQ10 100mg

    Creatine Powder 2.5 grams

    Levocarnitine (Carnitor) 165mg


    It says to take 3 times a day. Do you/can you combine doses?


    Capsules, gelcaps and softgels can all be opened on put into food or drinks. Not sure about the flavors, but here is what I found:


    Thiamin 50mg capsules


    Folic Acid 500mcg (.5mg) drops


    Vitamin E is in a gel cap and can be opened and squeezed out onto any food.


    CO Q 10 softgels 100mg (open and squeeze out)


    Creatin powder (measure to needs)


    Levocarnitine Liquid


    You can combine all of these together as one dose in say one drink, unless the flavors are too hard to mask (as far as I am aware), but you need space each "dose" out by 6-8 hours if at all possible.


    All these links are to Amazon, but there are many internet sources for supplements. Iherb, Vitacoast, etc. You can google "where can I buy vitamin supplements" and get a whole list of suppliers for price comparisons.


    Good luck.

  7. We use miralax powder for bouts of constipation, it is clear and flavorless so if you needed to sneak it in to avoid the fight you could. I am hoping by adding the inulin fiber pre-biotics the constipation bouts will be less frequent.


    Is he drinking a lot of water? He needs to be drinking a lot of water with IVIG anyway.


    My kiddo is afraid of potties in general right now, so I sympathize.

  8. Hi Mayzoo! Thank you for your quick reply.


    My DD still has her tonsils. I have not yet discussed this with Dr. T, but my ped says she doesn't need them out unless she has had strep 3x in a year for 3 years in a row or if she is getting sick enough to be out of school a lot. She is just shy of the first criteria and not close to the second. Her tonsils don't look bad either. They are not chronically red or swollen. Strep is definitely an issue for her vis-a-vis OCD symptoms, but it doesn't seem to be such a problem that it warrants getting her tonsils out at this point.


    At the least, I should first try weaning her off the Azith while doing Motrin/Arnica first, as you suggest, which I did not try last time. I just kind of went cold turkey on her because she was doing so well. She went from 200 mg 2x a day to 200 mg 2x a week.


    Btw, our ped is what I would consider a conservative but thoughtful guy. He was open to the pandas diagnosis and, as he says, believes in anything that works. He told me to try her off the antibiotics but definitely go back on if things got worse.


    Mayzoo, what was your criteria for taking out tonsils? What made you decide to do it?


    If anyone else has suggestions, please post and many thanks in advance!!


    Kiddo was very healthy (or as I suspect now ill without symptoms) until 9-2011. A small part of her history looks like this:


    01/05/12 Pedi

    SX Went in for blood work, throat was red

    DX Strep + rapid culture

    TX Amox 500 bid x10d


    01/15/12 Pedi

    SX follow up retest strep

    DX + rapid strep test

    TX Augmenting 1050mg bid x10d


    01/24/12 Pedi

    SX Retest strep

    DX + rapid strep test, PANDAS

    TX Zithromax 250mg x 6 days


    01/30/12 Pedi

    SX Retest strep

    DX + rapid strep test, PANDAS

    TX Zithromax 250 mg x30 days


    02/29/12 Pedi

    SX Retest strep—Major improvement in SX

    DX - rapid strep test

    TX Zithromax 250 mg x30 days


    07/05/13 Pedi

    SX Some SX returning, nightmares, hollering, whispering

    DX + rapid strep, PANDAS

    TX Chg zithromax to Mino 50mg BID




    She was strep +, but asymptomatic, for almost 60 straight days. This coupled with much of what I had read here made me feel in my gut that her Tonsils were harboring bacteria that began seeping out as soon as we stopped aggressive treatments. Every time we saw the pedi or the ENT they said her tonsils looked fine; however, upon removal, they told me the tonsils looked consistent with chronic infection. They were pitted and had "deep crypts full of debris and bacteria."

  9. Does she still have her tonsils? My kiddo had her tonsils out recently and we found they had been harboring bacteria. Every time she was doing well on treatment dose, when we started to wean off, she declined. Now we are going to treat to clear what infection is left, and I have instituted natural abx (Olive Leaf Ext, Propolis caps, and Coconut oil) to help cover her when we begin the wean process again.


    It would be difficult to discern which angle the azith is treating. Last time you tried to wean, were you using Advil or the arnica? If not, when you wean this time try with the Advil and arnica and see what happens. That may add a piece to the puzzle.

  10. Here are a few articles I found so far:




    http://www.nature.com/mp/journal/v7/n3/full/4001007a.html (associates MS with hormones)


    http://ucsdnews.ucsd.edu/newsrel/health/05-12BrainInflammation.asp "discovered a steroid hormone that inhibits inflammation in the brain."


    http://www.medicalnewstoday.com/releases/225195.php "Estrogen Receptors Play Anti-Inflammatory Role In The Brain"



    I have not read all these articles yet, but will when I get a chance. Just a quick google search to see what I found.

  11. According to this book, our hormones begin going down after age 28. Had my son when I was 37. Wondering if child's hormones are permanently affected by mothers reduction in them?


    Mayzoo-I wonder if there is a blood test to test hormones? Sounds like a possible connection with your daughter. Ummmm...will try to do some research today. Will look at pubmed site and see if any clinical studies on it. (If possible).


    No reason it cannot correlate. They have recently stated that the older the father is increases the likely hood of autism. I was 34 and hubby was 39 when kiddo was born.


    There is a blood test to check women for hormones levels.

  12. I have no idea, we have not been there yet and my kiddo is young enough I can force pills/liquids if I have to. If he has any rational thought process left, can you explain that if he refuses pills, he will likely have to be given shots once a week or once a month (Bicillin or Rocephin). Maybe ask the nurse or your doc to put in a firm stance tomorrow during the IVIG?

  13. We had to use Zithromax for 45 days straight to finally clear my daughter. Here is is her short history during the time she was positive for 60 days:



    SX Went in for blood work, throat was red

    DX Strep + rapid culture

    TX Amox 500 bid x10d



    SX follow up retest strep

    DX + rapid strep test

    TX Augmenting 1050mg bid x10d



    SX Retest strep

    DX + rapid strep test, PANDAS

    TX Zithromax 250mg x 6 days



    SX Retest strep

    DX + rapid strep test, PANDAS

    TX Zithromax 250 mg x30 days



    SX Retest strep—Major improvement in SX

    DX - rapid strep test

    TX Zithromax 250 mg x30 days

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