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!

21 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.

      • Laura says:

        Hi mummaduck,

        I am an Australian living in Sydney. My son came down with PANS/PANDAS 7 weeks ago. I recommend you seek out the direction of Dr Russell Dale at Westmead Children’s Hospital – I think he’s the only one in the country who knows anything about it. We happened to strike it lucky and see him at the hospital the day we took our son to emergency. Hasn’t been able to miraculously “cure” our son but his guidance and understanding of the condition has been invaluable.

        If you contact me at livecre8iveatgmaildotcom we can talk more.

        I understand your heartache…

        Laura

        • Vicky says:

          How is your son going with his PANDAS treatment?

        • vicki says:

          Hi Laura,

          I am an Australian living in Adelaide, South Australia. I would like to get my son checked for PANDAS, however been to a couple of Doctors who have never heard of it. I am quite desperate to seek help, I have tried getting in contact with Dr Russell Dale in Sydney, however had no reply to phone or email. I was hoping Dr Dale might steer me in the right direction in Adelaide. Any advice.

          Vicki

          • Laura says:

            Hi Vicki,

            Thanks for reaching out. Yes, Dr Dale has been our treating doctor. He ran many tests on our son to rule out other conditions and once they were clear we started pushing for PANDAS/PANS treatment. There was a lot of waiting and “debating” and in the end we had to be pretty pushy. We got our son onto a month of Augmentin about 4 months after acute on-set. Whilst we definitely saw an improvement on this med we still didn’t have our son back and he only improved to a point.

            Although there isn’t any literature supporting the use of steroids with PANDAS/PANS, I know that many of the leading US docs have successfully used this treatment modality with their patients. This is what we pushed for and eventually we got Dr Dale to agree to this. I understand his hesitance to go down this path as the peer-reviewed evidence is lacking evidence but the anecdotal evidence is there.

            We did a 2-month taper and it worked a treat and fast. We saw improvements in mood, temperament, OCD-like symptoms and behaviours within days. The tics lessened in type and severity but did not disappear and still waxed and waned somewhat. Our son finished the steroids about 8 weeks ago and his tics have lessened week by week so that they are now almost gone.

            Dr Dale will not respond to emails from people that are not existing patients. My suggestion would be to try calling his rooms. The other Westmead doctor with an interest in PANS/PANDAS who may be able to help is psychiatrist Dr Kenneth Nunn. He is a lovely doctor.

            I hope this is of some help. Don’t give up. Be brave and keep fighting for the treatment your child needs.

            Sending you strength,
            Laura x

          • Vicki says:

            Hi Laura,

            Thank you so much for firstly getting back to me so quickly and also sharing your successful story, it gives me great hope. What a wonderful outcome for your family.
            Just to let you know that I have heard from Dr Dale’s rooms and I have organised a referral, so just need to make appointment and fly over and see him. Fingers crossed that he can help us as well.
            Hope you all have a wonderful Christmas x

          • Laura says:

            That is wonderful news, Vicki. The trip to Sydney will be well worth it. Make sure you’re up-to-date on where the Americans are at and have familiarised yourself with all the latest info and YouTube presentations on the pandasnetwork.org before you’re appointment.

            Dr Dale’s a “believer” but doesn’t see things as black-and-white as the Americans. Saying that, I think the success we had with the steroids and our son may have changed his opinion somewhat…

            I’m happy to keep in touch. There are a few other things I’ve done with our son with supplementation since coming off the steroids to help bring him to a full recovery and I’d be happy to share our experience with you when the time’s right for you… (We saw a small up-tick in symptoms when he came off the steroids…Dr Kenneth Nunn had told us that this may happen so were prepared).

            All the best and I hope to hear from you again with an positive update.

            Laura

          • Mummaduck says:

            Hi Laura
            we have tried various antibiotics, non steroid anti-inflammatories and nutritional supplementation – all have helped to a degree, but have not completely cleared things. Am very interested in details of your steroidal treatment. More info would help me convince our Dr to liaise with Dr Dale and try for our son, and for me to assess risks.
            Can help please? – If so, how do I let you know my email address privately?
            Cheers
            Mummaduck

      • Kris says:

        To mummaduck,
        I have a 9 year old girl, unconfirmed pandas!!!
        I have been busy getting myself a google degree in medicine for the past 6 months.
        We also live in Western Australia,
        Maybe we could chat & possibly work together?
        Nothing to lose!!!
        And if there are any other family’s in Australia or Western Australia, let us know your out there??? We seem to be hard to find……..

        • Vicky says:

          Dr Underwood is the paediatrician that diagnosed my twin boys with PANDAS. He is an unbelievable doctor and I am sure he can help your child too. Give me your email address and I can we can liase.

  5. Kris says:

    Hi Vicky,
    My email is Liebecreole@hotmail.com
    Thank you for your response:)

  6. Kate says:

    Australian ladies….I would like to see if we can get some information happening here about this disorder. I am the mother of a child who had Pandas. We were living in the US at the time but are now living in North Qld.
    Please feel free to read my story and get in touch…go to my blog above and navigate to October 2013 and click on the post called ‘a very different and personal blog post’

    I would really like to start a new pandas Australia Facebook page I know there is one already but it has been very quiet for a while. I have messaged them again today to ask if they are still current. It is very hard to get information here in Australia and can understand why it gets put on the back burner. Anyone interested in trying to get this started?
    Regards Kate
    PS sorry for hijacking the comments here Joshua’s missing peace… And thank you for your story.
    Best wishes to all.

    • Kristine says:

      Hi Kate,
      I would love the opportunity to correspond with you, and be Involved.
      I have a 9 year old girl, undiagnosed PANDAS, sick since February this year.
      Had it not been for the Availability of Information coming out of the USA, and the Blogs of other families experiences with PANDAS, I would have made no progress at all thus far.

      My daughter & I have only just come home from the Hospital today, after having tonsils removed.
      After being broken open, they were found to be full of Infection!!! Now awaiting biopsy results.

      In Australia, we seem to suffer in Silence, as there is limited Awareness to this condition.
      I would love to hear from other Australian families suffering with PANS/PANDAS.
      How many are there???? Sharing Information is valuable & can save many months/Years,
      As I have found out…….

      Kristine – Email: Liebecreole@hotmail.com
      Perth, Australia.

    • mummaduck says:

      Hi – I’m a Perth, Western Australia, mum – my 11y/o son has had PANS/PANDAS since Christmas night 2011. We are soooo tired from not only battling the condition, but battling to find medical acknowledgement, know-how and support in Australia. We now have a paediatrician, neurologist and rhuematologist onboard treating our son for PANS. The rheumatologist says he has 5 other patients in Perth with PANS too. Not sure how I can help (I’m a complete technophobe) but let me know.
      MD

      • Kristine says:

        Hi mummaduck,

        Would you be able to make contact, & assist in recommending any Perth Specialist Doctors who you know are slightly more open minded when it comes to PANS/PANDAS.
        We have been going around on a Merry Go Round for the past 6 months with our 9 year old girl.
        Need to find someone who doesn’t have the Band Aid approach of Parkinsons Meds etc.
        I would be most grateful for any recommendation you may be able to make.
        I am also very interested in your story, if you would be willing to share.
        My email is Liebecreole@hotmail.com

        Regards Kristine.

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