Establishing an Effective Homeopathic Treatment Protocol For PANDAS

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PANDAS Treatment

As the title states, the object of this trial is to establish an effective protocol that parents can use to treat their children’s PANDAS (Pediatric Autoimmune Neuropsychiatric Diagnosis Associated with Streptococcal Infections) symptoms.

The trial will last two months and at the end of this time, the results will be collated to discover if it has achieved it’s aim. If we are successful, I will publish the protocol on this site to help other health practitioners and parents. Hopefully people will add their experience of using it to the comments section to build our group knowledge.

What is PANDAS?

(this following explanation and symptom list is ‘borrowed’ from this excellent PANDAS site)

The hallmark trait for PANDAS is sudden acute and debilitating onset of intense anxiety and mood lability (‘something that is constantly changing) accompanied by Obsessive Compulsive-like issues and/or Tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be 4 to 6 months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep – Rheumatologists and Streptococcal Experts do.”

Symptom onset includes Primary ONSET of OCD* and/or Tics
along with at least two other following symptoms:

  • Tics or other abnormal movements
  • Severe separation anxiety, Generalized anxiety
  • Irritability, Emotional lability, Aggression, Personality Changes
  • ADHD, Inability to concentrate
  • Sensory sensitivities
  • Deterioration in learning abilities and school performance 
  • Developmental and age regression  (inc. Deterioration in handwriting)
  • Sleep and night time difficulties 
  • Urinary Frequency or Daytime or night-time secondary enuresis

*OCD may present as severe anxiety

 

How the trial will be structured

  • Recruitment Phase: I am aiming for at least 15 participants.
  • Initial Questionnaire and Skype interview (lasting 20 – 30 minutes) – This is to establish a base line for the person’s symptoms and the most appropriate remedy(s) for the trial.
  • Prescription Phase: Each participant will be given a prescription to order from a homeopathic pharmacy (full details on how to do this will be given).
  • Protocol Phase: Each participant will take the remedies as prescribed for 2 months.
  • Final Questionnaire: Each participant will be asked to fill in an online questionnaire to record their experiences of the trial.
  • Publishing Phase: The results and (hopefully) the effective protocol will be published.

 

All suggestions gratefully received! I really hope this trial is going to offer something really useful to the PANDAS community

Kind regards

Alan Freestone

Disclaimer: This is not a Clinical Trial

 

 

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66 Responses to Establishing an Effective Homeopathic Treatment Protocol For PANDAS

  1. Casey April 22, 2013 at 9:56 pm #

    Hi Alan,
    I have two PANDAS kids (ages 5 & 6) and am interested in participating.
    Thanks!
    Casey

    • Alan Freestone April 24, 2013 at 6:47 pm #

      Hi Casey, welcome to the trial 🙂

  2. Paisley April 22, 2013 at 10:16 pm #

    My dd10 has PANS. We live in Connecticut, USA. Could we participate?

    • Alan Freestone April 24, 2013 at 6:46 pm #

      Hi Paisley, anyone with access to Skype is welcome to participate 🙂

    • Lisa June 10, 2013 at 1:36 am #

      Hi Paisley, I also live in CT. My dd7 has PANDAS, and my ds11 has PANS. I am interested if you are a part of he study, and if so would love to connect with you to learn how it is going. I just found this page, and obviously missed the cut off date.

      • Alan Freestone June 10, 2013 at 6:13 pm #

        Hi Lisa,
        Thanks for getting in touch!
        I have sent you an email.
        Alan

  3. Michelle Stephens April 23, 2013 at 12:10 am #

    I am very happy to see this! My daughter has had incredible success with treating PANDAS with solely classical homeopathy. My background is in clinical psychology and am currently beginning homeopathy training. I would be more than happy to help you in any way needed with the development of your trial. I hope you don’t mind my saying that making sure your participants are clear cut PANDAS (ruling out co-infections, Lyme, autism etc…) will help your trial immensely. Also, you may want to leave room to continue the trial over the long term as many in the main stream will simply say that two months of progress could be within the waxing and waning of the symptoms. This could be as simple as the same questionnaire being given at 6 months and 1 year marks. Hope you don’t mind my off the cuff thoughts. Please feel free to email me anytime. Homeopathy saved my daughter and I feel the need to help others find this effective treatment option!

    • Alan Freestone April 24, 2013 at 6:45 pm #

      Hi Michelle, thank you for your advice & I may take you up on your offer of help 🙂

    • Karen September 4, 2013 at 1:50 pm #

      Hi Michelle,

      My daughter was diagnosed with PANDAS and I have been searching for a homeopathic regimen. If you wouldn’t mind sharing the products that your daughter found to be successful I would be most appreciative. The separation anxiety is our biggest issue and her fear of going to any kind of doctor.

      Thank you,
      Karen
      Karen

      • Michelle September 6, 2013 at 11:40 pm #

        Hi- we used classical homeopathy and worked with a homeopath. My daughters remedy was very specific to her disease presentation so it most likely would not be the right fit for your child. I recommend working with a homeopath that has success working with pandas. Homeopathy can heal pandas- we are proof of that! Best wishes to you and your family! Xo

  4. Kristy Streb April 23, 2013 at 2:09 am #

    So is this like a real trial where treatment is at no cost or will there be a cost for participants? Also what is the criteria for being a part of the study? Thanks!

    • Alan Freestone April 24, 2013 at 6:44 pm #

      Hi Kristy,
      All you will need to pay for is the remedies.
      Thank you for your interest 🙂

      • Kristy Streb April 24, 2013 at 10:48 pm #

        Oh than may we please be a part of it? My children are classic PANDAS, just with different symptoms (from each other) What can I do to sign up?

  5. Cathy witkos April 24, 2013 at 9:28 pm #

    I have a 13 year old daughter with pandas and am interested!

    • Alan Freestone April 25, 2013 at 6:16 am #

      Hi Cathy, welcome to the trial 🙂

  6. Brenda Zepf April 24, 2013 at 11:42 pm #

    I am interested in being contacted for my son.

    • Alan Freestone April 25, 2013 at 6:16 am #

      Hi Brenda, welcome to the trial. You will be contacted soon.
      Kind regards

      Alan

  7. Kristy Streb April 25, 2013 at 10:37 am #

    Please sign us up! How exciting!

  8. Michele April 28, 2013 at 2:14 am #

    Sign up my son age 11 pandas since 2003. Thank u! I am excited…

    • Alan Freestone April 28, 2013 at 1:25 pm #

      Hi Michele, welcome on board 🙂

  9. cathy April 28, 2013 at 1:18 pm #

    I have a 10 yr old boy and would love to participate

    • Alan Freestone April 28, 2013 at 1:25 pm #

      Hi Cathy, welcome on board 🙂

  10. Eliza Sienkiewicz April 30, 2013 at 8:56 am #

    Hi,
    My name is Eliza and I would love my 8 years old son with PANDAS enrolled in a study.

    • Alan Freestone April 30, 2013 at 7:03 pm #

      Hi Eliza,

      Welcome to the study. Please simply fill in the questionnaire & I’ll be in touch with you.

      Kind regards

      Alan

  11. Melissa May 5, 2013 at 9:16 pm #

    I have a 13 yr old with PANDAS, antibiotics have unfortunately not made him better. My 10 year old has not been diagnosed but highly suspected PANDAS. I would be interested in learning more and having at least my oldest participate.

  12. Jill May 6, 2013 at 12:44 am #

    Thanks so much for including my 6 year old PANDAS son in your study. I have 2 kids with PANDAS, but did the questionnaire on my most severely affected child because I figured there was limited space in the study. Are you interested in sibling cases? Their symptoms are very different. If so, I’ll fill out a questionaire for my 8 year old as well. Thanks! 🙂

    • Alan Freestone May 6, 2013 at 7:53 am #

      Hi Jill,
      Please fill out a questionnaire for your 8-year old too 🙂

  13. Kim May 7, 2013 at 2:48 am #

    My son has PANS, is this only for PANDAS cases?

    • Alan Freestone May 7, 2013 at 8:24 pm #

      Hello Kim, PANS & PANDAS seem to be synonymous. Please submit a questionnaire for your son if you would like to participate in the trial 🙂
      Kind regards
      Alan

  14. Donna Konuch May 9, 2013 at 12:49 am #

    Hello Alan-
    If you still have room in the study, I would love my son to participate. He is classic PANDAS after a scarlet fever infection. Should I go ahead and fill out the questionnaire or wait for your instructions?

    Thank you,
    Donna K.

    • Alan Freestone May 9, 2013 at 6:30 pm #

      Hi Donna

      Lovely to hear from you. Of course your son can participate.
      Please fill in the questionnaire & then I will be in touch to arrange the Skype consultation.

      Kind regards

      Alan

  15. Lydia June 10, 2013 at 1:15 pm #

    Hi, just wondering if theres anyway to get my 8 yr old daughter into the study. If not maybe we could chat about what I could do to help her. She’s very sick with pandas right now. Tks!

    • Alan Freestone June 10, 2013 at 6:13 pm #

      Hi Lydia,
      Thanks for getting in touch!
      I have sent you an email.
      Alan

  16. Sarah June 13, 2013 at 11:22 am #

    Hi Alan I found your web site while searching for anyone in the UK with experience of PANDAS. My daughter is 8 and I would really like to rule out or in the PANDAS element to the OCD compulsions she has developed in the last 6 months. I have OCD mildly myself so it could be it is a genetic issue rather than PANDAS but at the same time I wonder for myself too as suffered from awful tonsilitis as a child and always feel more OCD if I have throat infections and the persistent cough. I just feel I want to check this out. Do you know of anyone in the UK who can do the necessary throat swabs etc and who is open to this diagnosis?

    • Alan Freestone June 13, 2013 at 11:40 am #

      Hi Sarah
      It sounds like PANDAS to me (though you’d have to get a doctor to make the diagnosis). I’d suggest someone like Doctor Goyal (http://www.sincerehealth.co.uk/), there are also a few on this list: http://www.savingsammy.net/providers.php

      However…IF you get the diagnosis, that doesn’t cure or take away the symptoms. So what would your next step be? It’s often the case that a mum’s bowel problems (proliferation of bad gut bacteria resulting in a lowered immune system) are transferred to the child…especially if the cause of her problems is heavy-metal toxicity. What I’m trying to say is, the PANDAS is an effect, not a cause.

      Kind regards

      Alan

      • Sarah June 13, 2013 at 11:54 am #

        Alan thank you for your swift reply. I have a terrible heavy metal problem which was diagnosed first Antony Haynes the ION nutrition practitioner and Dr Charles Forsyth here in Reigate who is a doctor/homeopath. Do you think there could be a relationship? I have often wondered if my daughter would have got a heavy dose of metals when she breast fed but we havent investigated that until now. I will follow those links up and also now look where you are based!

  17. Alan Freestone June 13, 2013 at 12:06 pm #

    Yes, I guessed that you had that problem Sarah. There is almost certainly a relationship between the PANDAS-type symptoms & the metals. The metals cause an ongoing imbalance in the bacterial flora, that’s why the Strep bacteria is able to proliferate.

    Your daughter will have been exposed to the metals in-utero, then she will have received the wrong balance of bacteria passing through the birth canal. Finally during breast feeding, she will probably have been exposed to lower levels of metals, but unfortunately you will have been giving her imbalanced bacteria in your milk (as your system is compromised). This all has the effect of setting her up for gut dysbiosis.

    First off, make sure she’s on a good probiotic daily. Secondly don’t worry , this stuff can all be fixed 🙂
    If you would like, drop me a line and we can chat more over FaceTime or Skype. I’m based in London, but treat people from all over the world.

    Kind regards

    Alan

    • Sarah June 13, 2013 at 12:38 pm #

      Thank you. I have contacted Sincere Health for an appointment and will be in touch with yourself. Do you work with Dr Goyal or is it an either/or situation?

      • Alan Freestone June 13, 2013 at 4:28 pm #

        Hi Sarah,
        I wasn’t necessarily recommending Dr Goyal, I just know he is aware of PANDAS & can make a diagnosis.
        Some of my patients also see Dr Goyal, some don’t….TBH I’d prefer you weren’t on his medications while seeing me, I like to be able to see what is doing what…otherwise it can become a bit muddled.
        Kind regards
        Alan

  18. Sarah June 14, 2013 at 10:05 am #

    Dr Goyal is fully booked until the end of September! In terms of treatment I know there are other options as your proposed treatment programme but I was keen to get a diagnosis if possible. September is so long to wait. Do you use homeopathy and nutrition or just homeopathy?

    • Alan Freestone June 14, 2013 at 10:58 am #

      I understand that you want the diagnosis…perhaps one of the US doctors could do that for you over Skype?

      I will recommend supplements if appropriate, but I am not a nutritionist so obviously I wouldn’t have their level of expertise with that side of things.

      If you want to chat with me on Skype about these things, just ping me an email.

      Kind regards

      Alan

  19. Michelle Vincent June 21, 2013 at 2:34 am #

    My son has PANDAS (well, PANS actually). His flares are becoming pretty intense. He’s 6…rage-like and becoming violent/aggressive. He doesn’t take antibiotics and can’t because the candida takes over and is just as bad as the flare. Our former naturopath said he had lyme too. We did 9 months of lyme herbs that were pretty expensive, but I am still sure we all still have lyme. I have pieced together a lot of different things that help us through a flare (acupuncture and Chinese herbs), but they are only helpers…not healing…My daughter probably also has PANS (9) and is starting to really show up cognitively and behaviorally/emotionally. Anyway, are you still working on your trial and need another child?

    • Alan Freestone June 21, 2013 at 7:52 am #

      Hi Michelle,

      I have sent you an email.

      Kind regards

      Alan

  20. pamela July 2, 2013 at 5:39 am #

    Hi Alan,
    My nine year old daughter has eight of the listed symptoms and I suspect PANDAS. I just found out about your work~ It looks like I missed your trial. Any possibility of getting in? Will you be doing another one?
    Thank you so much in advance for your reply.

    • Alan Freestone July 3, 2013 at 6:06 pm #

      Hi Pamela,

      Lovely to hear from you. I have no plans to start another trial at present. However I’d be very happy to treat your daughter.
      If you would like to have a chat on Skype about my methods, please drop me a line.
      Kind regards
      Alan

  21. hasmig July 9, 2013 at 5:16 pm #

    Hi- I have a 9 year old son who has autism and pandas. he was diagnosed with pandas 2 years ago. I would like more info please

    • Alan Freestone July 9, 2013 at 7:41 pm #

      Hi Hasmig

      Lovely to hear from you. The best thing would be for you to send me an email & we can have a free chat over Skype or FaceTime.
      I have time later this week, let me know your timezone & the best times for you.

      Kind regards

      Alan

  22. Jean McLean July 16, 2013 at 11:35 pm #

    Hi Alan,

    I have just discovered your blog. Although too late for your PANDAS trial, I am hoping you could advise me what treatments you use for PANDAS. My son is 5 yrs old and has had several strep throat infections. His first PANDAS episode happened when he was 3. He had a few illnesses one after the other then took chicken pox. After that he had the flare up with OCD and tourette symptoms. Also anxiety. since then he has had 3 further flare ups. He was in contact with kids who had scarlet fever and the last one he had strep throat. His swabs have came back negative for strep even though it could be clearly seen in his mouth. Also titer blood tests were done at onset and then 3 weeks later and both came back satisfactory (13)
    The GP and CAMHS clinic are accepting that although the tests have not came back with raised titer level, that it is in fact PANDAS. I have tried to find a pedeatrician close to Scotland who has a special interest in.PANDAS but cannot find any closer than Plymouth. We are hitting a brick wall at every turn and are afraid of what the constant antibiotics (he has had about 10 courses since jan this yr) are doing to his body. We are also worried about any lasting affects of the anxiety he has with this. Can you supply a remedy for us to try as it seems the medical route is lacking in expertise on this condition?

    Yours Hopefully

    Jean

    • Alan Freestone July 17, 2013 at 7:53 am #

      Hi Jean,

      Lovely to hear from you & I’m sorry to hear what you’ve been going through with your son. The easiest thing to do would be for us to have a short chat on Skype or Facetime so that I can learn more about your son’s case, and you can learn more about my methods. Just drop me a line on alan.homeopath@gmail.com, I have some time this afternoon & after 7pm tomorrow.

      It wouldn’t be possible to simply find you a remedy that would fix all your son’s problems. It has taken time for his health to get to this state, so it will take some time & a process to get him out of it.

      Kind regards

      Alan

  23. Lisa July 20, 2013 at 5:10 pm #

    Hi,
    I have a 13 year old with PANDAS. I am interesting in the trial and treating with homeopathy.
    Please be in touch. I look forward to hearing from you.
    Thanks,
    Lisa

    • Alan Freestone July 22, 2013 at 9:30 pm #

      Hi Lisa

      Lovely to hear from. Unfortunately the trial is closed now, however I’d be happy to treat your 13-year-old.
      If you like, we can have a free chat on Skype where I can explain my methods to you. I have some slots available this Wednesday 24th & Thursday 25th. Please let me know what timezone you are in.

      Kind regards

      Alan

  24. Beverly Montgomery July 30, 2013 at 1:24 pm #

    Hi Alan,
    I have a nine year old daughter who has been dianosed with tourettes > I am sure it is PANDAS. Will there be any further trials regarding homeopathy or can I please put myslef on a mailing list for the results of the trial when they are available?
    Many Thanks,

    Beverly

    • Alan Freestone July 30, 2013 at 10:32 pm #

      Hi Beverly,

      Lovely to hear from you. The results of the trial will be posted here once they’ve all been collated.
      In the meantime, if you’d like a free chat on Skype about my methods, please just drop me a line.

      Kind regards

      Alan

  25. A. harrison August 23, 2013 at 12:40 am #

    I’m desparate to participate. In retrospect, my 10 year old son has likely suffered since he was 5. I’m having difficulty getting my pediatrician on board. My son is an honor roll student, funny and very mature – unless he is in a flare. Then it’s a total regression and a nightmare of mild OCD, oppositional defiance poor school performance, poor handwriting, rages followed by self-loathing.
    please help us. We have been trying homeopathic strategies on our own.

    • Alan Freestone August 30, 2013 at 11:55 am #

      Hello,
      I have sent you an email.
      Kind regards
      Alan

  26. Larissa November 27, 2013 at 3:57 pm #

    Hi! My 6 year old son suffers from PANDAS. I just came across your trial and was wondering if there’s an update on how it went. I’m exhausted from battling with antibiotics and then yeast. Looking for an alternative. Thanks!

    • Alan Freestone November 27, 2013 at 4:08 pm #

      Hi Larissa,
      The trial went really well. Here is the results blog post: http://alanfreestone.com/pandas-trial-results/

      If you would like to know more about my methods, drop me a line & we can have a chat on Skype. I have some time tomorrow 28th Nov in the morning.
      Kind regards
      Alan

  27. Louise Clarke February 12, 2014 at 12:00 pm #

    Dear Alan

    I have stumbled on your site whilst desperately trying to fin info on PANDAS

    I guess your trial is well under way if not complete but would be very grateful to talk to you about my 5 year old recently diagnosed …,sudden onset OCD & strep infection. Have seen a homeopath but she is not familiar with the illness.

    Many thanks

    • Alan Freestone February 17, 2014 at 9:55 am #

      Hello Louise
      Lovely to hear from you. The trial has finished (here’s the results:http://alanfreestone.com/pandas-trial-results/), but I am very happy to help your 5 year old. Let me know what timezone you are in & we can arrange a chat over Skype.
      Kind regards
      Alan

  28. Marie February 28, 2014 at 11:14 am #

    Hi Allan
    I hope you can understand my English (writing from Sweden and uses the Google translation)

    I also stumbled into your site desperate to find help for my 6 year old son who had recently been diagnosed with PANDAS and he has just started his first treatment with penicillin. But I do not like to give him that. His severe problems began just over 2.5 years ago and it has taken almost one year to find a doctor who took my suspicions about pandas seriously. I understand that the trial is finished so I want to know how to get help through you and the cost for consulting you.
    Kind regards
    Marie

    Kind regards
    Marie

    • Alan Freestone February 28, 2014 at 12:09 pm #

      Hello Marie
      Lovely to hear from you. I have sent you an email.
      Kind regards
      Alan

  29. Alison March 21, 2014 at 6:32 am #

    Hi Allan
    My 5 year son has autism/aspergers but we suspect PANS/PANDAS from the UK. Could you advise more about your treatments and prices.

  30. Alan Freestone April 7, 2014 at 3:57 pm #

    Hi Alison,

    I have just replied to your mother.
    Kind regards

    Alan

  31. lori February 26, 2015 at 1:15 pm #

    What protocol do you take for PANDAS? Timeline for an ASO of 459 (3 mths ago was the onset and test just completed last week) and cost for your services?

    Neurotypical kid who developed this from his brother w Bacterial pneumonia and strep, who received that from the Vax shedding of a DTaP that I said no to. (long story(0 but that is the strain we were dealt.

    • Alan Freestone February 26, 2015 at 2:21 pm #

      Hello Lori

      Thank you for contacting me. I have sent you a reply via email 🙂

      Kind regards

      Alan

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