Home » Antibiotic with PANS/PANDAS

Antibiotic with PANS/PANDAS

Ok, so Joshua has been on a prophylactic dose of Augmentin for a year and on Sunday, we took him off. We were told that Augmentin has a protective effect and this is why it seems to alleviate symptoms so well. Augmentin is a common antibiotic for PANDAS. Unfortunately, in the past, when we took him off symptoms would return. We tried at Christmas and he made it a couple of weeks but became moody and I didn’t want to screw up his school year so we put him back on the low dose. Besides, we were in the middle of strep season…what was I thinking.

We are 5 days out…so far so good..a little moody but he is managing. For those of you as wrapped up in PANDAS as we are, Augmentin is a glutamate modulator. I think there is a huugge key in here. Glutamate is an excitatory neurotransmitter in the brain. There is a small study that shows excess glutamate in the cerebrospinal fluid of PANDAS children. Seems that when these whacked out antibodies head to the brain…they create excess glutamate….not good. Remember, excitatory,ie excess movements such as tics, ADHD, obsessive behavior. Im wondering if removing the Augmentin removes the glutamate modulator that keeps the excess glutamate at bay. This, in turn, decreases symptoms. Interesting that Namenda, which is an Alzheimers med that removes excess glutamate, is successfully being used to treat a subset of children with ADHD (would be interested to see immune panels on that subset!) I am all for trying a very low dose as the side effect profile is minimal. So far, I cant find a Dr. that will try it. Ok, well I guess there are only a few around here that believe in PANDAS anyway.

In June, we are headed to an immunologist, who is also identified as a neuroimmunologist (wish I had one of those a long time ago). He will test Joshua for underlying allergies and vitamin deficiencies. Should be interesting. I am also reading about the MTHFR (not an obscenity) gene mutation that about 30% of the population has that really can complicate matters for PANDAS kids if not addressed though the treatment doesnt seem to be any more than a special form of folic acid.

I will keep you all posted. I feel as if I should be able to put all of this towards some form of degree…but I guess I will chalk it up to motherhood…good enough!

7 Responses to “Antibiotic with PANS/PANDAS”

  1. PANDAS Mom says:

    Just wanted to let you know that I finished the book and it was so helpful for me. I hope that things continue to go well for Joshua. My daughter has dealt with PANDAs for 5 years and lost most of her childhood. Having her tonsils and adenoids removed stopped all symptoms for 9 months, but then she became infected with Lyme. Antibiotics help some, but not enough. She is now scheduled for IVIG and I am so hopeful that it will help. I also appreciate your faith that flowed throughout the book. I too know that God has been with us each step of the way. Thank you for writing it and making it available on Kindle. I will recommend it to many!

  2. admin-JMP says:

    Thank you so much. It just makes me sick there are so many families dealing with this disorder and there is so little medical help and support. My son’s comment about losing a year of his life is what drives me. No 7 year old should feel that way
    I will also say that faith means something different to me now. I realized how very little control I have in life. Makes you learn to depend on the One who is in control!

  3. Michelle Wisniewski says:

    Hi Lori, Where did you find information showing Augmentin is a glutamate modulator? Please direct me to any websites

    • admin-JMP says:

      Hey! We have been camping in south Carolina and will be home after the 4th..all my info is there. I found a great article to start relating clauvulonic acid (which is the part of augmentin that affects glutamate) to help with seizure disorders in trials…interesting stuff. If you google clauvulonic acid and glutamate, you will find quite a bit.

  4. twinsmum says:

    Thanks to all of Lori’s emails my 14 yr old twin boys are upto their 3rd ivig treatment in 2 months. They ended up in a debilitating condition and we think that one twin has had PANDAS for 10 yrs and the other for 6 years. It took a long time to get a diagnosis in Australia but thanks to Lori and Dr Kovacevic in Chicago and their paediatrian in Sydney that have been able to get the treatment they desperately need. The IVIG is make a great impact and every day we see our old boys coming back. Thank god for the internet which is such a valuable way of getting information

    • mummaduck says:

      We are desperate to find PANS literate Drs in Australia (preferably Western Australia) -can any body help with details? Our 10yr old boy has been living with this for 18 months now, has missed 6 months of school, has lost all social contact and has seen a million “experts” all of whom know nothing about PANS. PLEASE HELP US!

      • Twins mum says:

        Have you done blood tests to see if your son has elevated strep levels? Dr Kovacevic in Chicago who you can google search him and then email him will be able to help you to confirm his diagnosis so you can get the right treatment for your son. Unfortunately there is very little knowledge in Australia and my paediatrician who is in Sydney and helped us no longer practices and has moved to America.

Leave a Reply

Your email address will not be published. Required fields are marked *


+ 3 = four

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>