Dear PANDAS, You Lose

PANDAS cardDear PANDAS/PANS,

I hate you. I do.

I hate the years you made B struggle. I hate what you are doing to my friend’s child. I hate what you are doing to Jilly’s good friend. I hate that you are burdening their families.

You need to stop now.

I hate that you leave financial debt and lost friendships in your wake. I hate that you create blindness in society rather than understanding.

I hate that you’ve caused a few family members to decide that their friendship is contingent on my silence.

I hate that you caused a friend who had written a note thanking me for being one of the “kindest, most sincere people she knows” to drop our friendship within a year when B got sick because I felt the need to advocate for him.

I hate you for creating the view society has of me. I hate you for looking like other disorders so that it is hard for children to get treated. I hate the time I spent worrying, being angry, feeling bitter, feeling anxious, fearing the future . . . because of you.

PANDAS/PANS, I loathe you. I do.

However, unfortunately for you, you did not destroy me, my child, or our family.

Because of you, PANDAS/PANS, I’ve learned the importance of forgiveness. I’ve learned that it is necessary that I practice it every day. It’s hard . . . HARD, but necessary.

I’ve learned that I have to be an advocate. No more people pleasing. I am a wimp by nature. You taught me that I need to be courageous. I found a voice I didn’t know I could possess. You taught me to stand up for our family, for other families, and for my child.

I’ve learned to take the health of our family into our own hands. I’ve learned how to build health with food. I’ve learned to question every medication and supplement. I’ve learned to ask the right questions of our physicians.

I’ve learned to cherish people. I’ve learned empathy for paths I may not understand. I’ve learned to set aside my bias and listen. I’ve learned that ‘comfortable’ doesn’t mean ‘right.’ I’ve truly learned to love in situations where I might not have before.

I’ve learned what it is like to lean on my Heavenly Father. I’ve learned that the joy of the Lord truly is my strength. Now I know what that old Sunday school song means. I’ve learned that when I cry out to Him, He really is listening. I’ve learned to listen to His voice. I learned to follow when He guides us to roads less traveled. I’ve learned that He is always with us. We were never alone. He held B in his hands.

You, PANDAS/PANS, lose.

~ Honeybee

Honeybee and her husband of twelve years have two children.  Now that her son is nearly recovered from PANDAS/PANS, Honeybee’s passion is walking other parents through the diagnosis, so their children will have the same opportunity to heal that her son had.

 

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26 Responses to Dear PANDAS, You Lose

  1. Vicen says:

    What did you do to detox???

  2. LindaS says:

    Thank you, April Bowen, for all your work in finding answers for your son – and then sharing with everyone!
    My son has had so many symptoms of PANS/PANDAS over the years, including the sudden onset, sudden severe depression and then OCD, followed by psychosis.
    For months now, he has been listening on his head phones to Heavy Metal music practically 24/7; became destructive over the summer; always had a knife on him; and for years has been fascinated with the macabre, (watching videos of a serial-killer or writing in his journal about the devil and all kinds of death and destruction). His brother’s “ADHD” also started, literally, overnight and he is also color blind. Their father had osteomyelitis as a baby.
    I can see how strep could be involved in all of this and, from what I understand, it’s people who already have the syphilis miasm who can get strep.
    I’ll definitely be buying some homeopathic Franciscea. I don’t know what potency though. I’m SO afraid of an aggravation. Maybe I’ll just stick with a 30c for now.
    Thank you again, April. Bless you for helping people like this!

    • April Bowen says:

      Hi Linda,
      I just lost a lengthy reply to you, and I’m too tired to repeat it right now. But, it certainly sounds like your son might need Franciscea. You can contact me directly if you’d like, and I can help guide you as to the best potency for your son. You always want to match the intensity of the symptoms, with the intensity of the potency. My email is: [email protected]
      I’d very much like to hear how your son does with it!
      Warmly,
      April Bowen

      • LindaS says:

        My son’s case is rather confusing. He has the symptoms of Franciscea but also symptoms of Tarantula Hisp. I’ll send you a private message with more details.
        Thank you, April!

      • April Bowen says:

        That’s interesting, LindaS, as besides my son’s symptoms looking so similar to the other Solanaceae remedies, Belladonna, Stramonium and Hyoscyamus, the other most similar remedy was Tarentula. When I read about it for the first time, I was convinced he needed it, but it did nothing for him. I have found it to be a differential remedy with Franciscea–they can look very close, as the Solanaceae remedies can look much like an animal remedy. There are subtle differences in presentation that take some skill in discerning.

  3. mana says:

    Hi honeybee,i came about these commentsbanf post by surprise, I have 3 kids with this 24,22,18 how do unfettered a hold of the biomed I am in Sydney Australia I have had all blood works done now have Qeeg done then starting them on a intense vitamin supplements that I’m having compounded the results I found in the blood works shocked me to some extext . I am now revisiting what I tried 14 yrs ago any help or advice would be greatly appreciated. I believe I’m dealing with leaky gut amongst other things as well

  4. christy amabile says:

    I am in same situation, I am a LCSW , child and family psychotherapist and my young son was diagnosed with PANDAS this year, after much research, advocating and fighting for him solely on my own. I want to reach out now to assist other children and families experiencing similar disorder. What steps did you take to make yourself most useful in this manner?

    • Tamara says:

      Hi Christy, my 9 year old son was diagnosed with PANDAS. Any advice for methods and treatments you found helpful would be extremely appreciated. I am feeling more hopeful with every new piece of information I am given that brings me closer to healing my son. My email is [email protected] . Thank you!

      • Steve Tullius says:

        Hello everyone. My son was diagnosed with PANDAS two years ago after going undiagnosed for 2 years prior to that. We’ve done a ton of different things to help him heal and he is now about 90% better. My wife moderates a Facebook Group called Saving Our Pandas and there is a ton of great info and support in there for anyone interested. All my best to all of you and may your children experience tremendous growth, healing and peace.

        Here’s a link to the Facebook group for anyone interested
        https://www.facebook.com/groups/447796052052527/

  5. Thank you for sharing your story and for standing up as a voice of reason in solving this puzzle for so many families.

    We are about 4 months in to finally understanding what was happening to our son and addressing it mostly through diet and some supplementation at this point. He’s been doing much better since adhering to a strict SCD diet however he is in a deep flare I think from lack of fish oils for two days and/or swimming in the pool for three days.

    I also feel that toxicities are playing a role at this point. Do you know if Dr. Buttar does over the phone consults and what type of therapy was involved? Can it be done from home or would be need to take our son directly to him?

    Thanks!

  6. Jennifer says:

    MANY families are finding that Lyme and coinfections are underlying the PANDAS/PANS, you guys. Strep is just another common coinfection. Just treating it with abx is not the answer either. It’s way more complicated. There are many things that need to be treated when it gets to that point, one of them being detox/getting rid of toxins. Glad you’ve seen healing with your son, though! 🙂

  7. April Bowen says:

    I can still vividly remember the exact day, 21 years ago, when my son dramatically changed overnight, after a very high fever. For nine years I struggled to find an answer for all the bizarre and troubling behaviors, always seeking an holistic treatment. (I’m not even sure PANDAS had been identified yet, and I also had no access to the internet. I didn’t know anyone who had the bizarre symptoms my son had–or at least, anyone who would talk openly about it.)

    My son’s problems were exacerbated by multiple Traumatic Head Injuries, and I turned to homeopathy for help. After consulting 4 different Homeopaths, one who actually “wrote the book” on children with behavioral issues, and spending thousands of dollars to no avail, I finally decided to go to homeopathic school myself, so I could figure out the best remedy for him. By the end of my first year, I discovered a remedy that had never even been made up into a higher potency, as no one had ever used it. Studying a new method of applying botanical similarities, I came to the idea that this remedy could help him. I had it made up to a 200C potency and gave him one dose.

    Within less than an hour, my son, who had not been sick with so much as a cold during the last 9 years, was suddenly sick in bed with what looked like the flu (which no one else in our family ever got). When I offered to get him something, he just waved me off and literally told me he was “revisiting old symptoms” – a term we use in homeopathy but not one I ever remember using around him. When he arose on the third day, he was like a different boy, a total transformation! Gone was the constant, bitter anger that he used to wake with. He was happy, animated and delightful again. The most significant change was that his severe and bizarre Tourette’s symptoms, which had occurred 100’s of times/day, for years, were completely gone, POOF, just like that! I never imagined it could happen that way-I was just hoping for a little improvement here or there, but he was nearly unrecognizable by others as he went through such a transformation. I am still amazed by it all!

    I find it interesting that long term antibiotics are being used for PANDAS, given their known effect of destroying the gut’s biome. My son had his nose broken at age 11, and needed surgery to repair his septum. Three weeks later he developed a MRSA infection that went to his bones in the form of osteomyelitis. Incredibly painful!! Docs said he would’ve been dead if I’d brought him in even 1 hour later.
    They put him on high doses of antibiotics through the IV for two weeks, followed by oral antibiotics. These seemed to only weaken his body and more so, his mind–he became quite dull and regressed in his schoolwork. If anything, rather than the antibiotics helping, they made everything much worse, including his PANDAS.

    I gave him the first homeopathic remedy that worked, right before entering high school at 14. He was very popular and had a 4.0 until halfway thru his senior year, when he suffered a severe TBI that damaged or destroyed 75% of his frontal lobe. Again, homeopathy came to the rescue. His injury manifested in looking like paranoid schizophrenia, among other physical problems. This time he needed a different homeopathic remedy, but it had similar miraculous results. He would come out of the psychotic state within 2 minutes of giving the remedy. Slowly, he began healing. I found it interesting when we did a few sessions of neurofeedback that after one intense session, all of his Tourette’s symptoms came back on the drive home. His younger siblings who weren’t old enough to remember them, were totally freaked out!

    If he was exposed to any kind of excito toxin like a sip of coffee, a bite of very dark chocolate, a sugary dessert, a sip of alcohol, etc, he would go right back into that psychotic state and tics would start again. His PANDAS symptoms would return if he was exposed to strep again. In each of these cases, one dose of the proper remedy and he’d be back to normal in a few minutes.

    Now, at 26 years old, he is about 98% recovered, with only a few minor deficits with his cognitive skills. He has become a successful artist. For many years I thought there was no way he could ever live independently, and now he is proving me wrong!

    • Niyang says:

      April are you “Honeybee”?

    • Honeybee says:

      April, that is awesome! You went above and beyond for your child. Good work Mama!

    • Jacqui says:

      Hi April,
      I love your story. You have done so well with your son. These cases are crying out for homoeopathic treatment. It have seen it bring truly miraculous results. The homoeopath fails at times but never Homoeopathy. I really love the fact that you realised this and persevered.
      Being a homoeopath myself I am of course curious as to which medicine you discovered during your studies, potentised yourself and which did your son so much good?

      • ProfessorTMR says:

        Me, too. 🙂 My daughter’s PANDAS responded well to homeopathy as well.

      • April Bowen says:

        Hi Jacqui,
        I had tried so many other things, with only minimal improvement, and I also wanted something that would ultimately cure him, and not require difficult or expensive protocols to which we’d have to adhere to for life. From what I’d read, homeopathy seemed to be my best bet. As you say, homeopaths may fail, but homeopathy never does. My son was given nearly 30 remedies by four homeopaths and myself, before I found the right one for him. Believe it or not, there was good reasoning behind each one, but all but one had zero effect on him. He used to say, “I don’t know why you keep giving me all these remedies, because they never do a thing!” and he was exactly right.

        The one that did have some effect, Mercurius 200C, actually made him worse, as it created a huge aggravation that lasted 6 weeks before it wore off. (I now know how to tame an aggravation, but didn’t at that time.) He’d come home from school and lay on the bed for an hour or two, ticcing so hard, it almost seemed like convulsions. His head would twist nearly 360 degrees and with the sounds that came out of him, it was like something from the Exorcist! I refused to give that one again, but it did confirm my suspicion that he was in the syphilitic miasm (a homeopathic classification–not meaning he had syphilis .). Mercurius is our #1 anti-syphilitic remedy. I’ve since found that people will often have a strong aggravation when the remedy is a close match, possibly the same miasm or maybe in the same botanical family or the same row of the periodical table. I was studying Rajan Sankaran’s Sensation Method, where understanding miasm is so important. This really helped me find the right remedy later on. Actually, ours was the first school in the US to be studying it in depth, and my class was the first to study it from year one. Many of my most challenging cases have been solved by using this method.

        At this time, my son received another head injury, being knocked unconscious at a ball field by a foul ball that flew over the fence. He became very morose and depressed and I strongly suspected was suicidal at the age of 14, as he wanted to just give away his prize skateboard and surfboard, things he’d worked hard to get and loved. He refused to go out with friends, but just sat in his room listening to dark, heavy metal music and drawing disturbing pictures. I gave him Natrum sulph, which is strongly indicated in depression after a head injury, but it did nothing. I became desperate to help him, fearing I would soon find him dead one day. One night, I was poring over Rajan’s book, “An Insight Into Plants”, trying to understand the differences between the sensations of the various plant families.
        I turned to the back of the book and read, “In Solanaceae, the main words and themes are “KILL, DEATH, FIRE, DARK, BLACK and SUNLIGHT”. As I read these words, my hair literally stood on end…for seven years my son would repeat, hundreds of times each day, what I called his ‘nonsense phrases’, as they had nothing to do with anything, but they were part of his main vocal tic, always accompanied by a grimace or contorted face and bizarre body movements. The reason I had this reaction was, his most favorite nonsense phrases were: “Kill, Death, Fire!” (even the same order as in the book!) and, “He was killed in a fiery death crash! (always followed by maniacal laughter). Beyond that, since the day he first had the fever when he was 5 years old, he would only wear black. He had a perfectly awful, black sweatshirt and sweat pants, handed down from his cousins, that he would try to wear 24/7. He called them his “blacks”. It was nearly impossible to get him to wear anything else. Though not unusual at age 14, when black clothing almost seemed like a uniform for teenagers, he had only worn black for years, with only a little white, red or yellow thrown in occasionally on t-shirts. He was also severely color blind. There are 12 tests they do for color blindness and most people see some colors, but they said he only saw black and white. He only drew in black and white, too. For years, he had been telling me his exact sensation, yet it had never made any sense to me until now. I had prayed to God for a sign, for him to just give me some sign and clarification of what my son needed, and here it was..in black and white!

        Anyway, when I read this passage, I became quite certain that he needed a remedy from this family. It was interesting, too, as one of the first remedies he was ever given was Belladonna, also part of the Solanaceae plant family. When I had repertorized all of his symptoms, Belladonna, Stramonium and Hyoscyamus-all Solanaceae-came up in the top 5 remedies. Tabacum, another one, had been tried before, too, because of the intense type of motion sickness he would get, which Tabacum is known for. So clearly, the other homeopaths had recognized the symptoms and sensations, but simply had the wrong miasm. Rajan has come up with a beautiful way of classifying plants by families and miasm, basically cross-referencing them. So, I looked at the syphilitic miasm remedy in the Solanaceae family and saw Franciscea uniflora listed. I had never heard of it before, and there were only a few sentences written on it, “Franciscea uniflora is a Brazilian remedy of great local repute as an anti-syphilitic and anti-rheumatic. It is called “vegetable mercury.” (which I also found interesting!) None of the other few symptoms really applied to him, but having seen that Rajan’s classifications had been accurate before, I went to order the next day. The pharmacy (Hahnemann Labs) only had it in a 3C potency, as no one had ever ordered it before, so I had to pay to have it run up to a 200C. The rest is history! Since then, I’ve used this remedy almost as much as Belladonna,Stramonium and Hyoscyamus, especially in PANDAS, ADHD, Autism and psychiatric cases. It’s a good remedy to have on your radar.

    • Leslie says:

      That is so amazing April, thank you so much for sharing your story!

  8. Niyang says:

    Thank you so much Honeybee for your post! I really needed to read this today. I recently learned (the HARD way) just how much I need to lean on Our Heavenly Father to help our son who has been fighting so hard to beat this P.A.N.S. disease. I regret the decisions I have made in desperation, always pushing against the waves instead of trusting where God wanted me to go. I couldn’t hear what He wanted me to do if I didn’t give Him any part of myself….and now I am learning to do that.
    As the other mom’s have posted earlier, would it be possible to share what you did to help recover your child? Once again, I thank you for your post and for reminding us that we are never alone. God bless you.

    • Honeybee says:

      God bless you, Niyang. I’m glad God has used our experience to touch your heart.

      We tried biomed for 3 years. Initially, it was a good fit and I do believe healing took place. However, our son began to experience flares again and they were getting harder to get under control. Two years ago, we found Dr. Buttar at the Center for Advanced Medicine and Clinical Research. Addressing toxicity seemed to be the missing piece for our son. He began to lose symptoms and his flares became less frequent and less intense. He is no longer having flares in response to illness. In fact, he is now able to mount a fever response and recover without any PANDAS/PANS symptoms following the illness. It feels like he got another shot at this life. Dr. Buttar also addresses metabolic and GI health.

      I pray your son finds relief soon.

  9. Jodi says:

    What a great read! Our 19 year old son, who has “severe” autism as he is nonverbal, also has PANDAS. He was diagnosed at age 16. I was the one who did the research to figure out what the heck was going on with his out of control OCD, I presented what i learned to his pediatrician who then sent us to a specialist who completely understood what i was talking about. Thank goodness! My question, though, is how have you nearly recovered your son from this? What have you tried? Thanks!

    • Honeybee says:

      I’m so glad you found a specialist who understands PANDAS/PANS! It’s like finding a needle in a haystack. 🙂 Addressing toxicity was the key to our son’s healing. It was the missing piece of his puzzle. He is now having appropriate immune response to illness. Dr. Buttar at the Advanced Center for Medicine was able to turn things around for him. Prayers for you and your child.

  10. Erica says:

    hi Honeybee, can you please help us? Our 7 year old daughter has struggled for 2 1/2 years with PANS or PANDAS, and we do things the natural route, and am just looking for your advice on how you have healed your son. We focus on food and gut health and have a wonderful doctor who supports all of our efforts. We have not confirmed strep anywhere in the body, but know that it can hide in the biofilm, so it’s no surprise….have thoughts from my functional medicine doctor to treat with Interphase to beak up the biofilm, but am unsure of how to go about that in the right way to fully support adequate detox. Thank you in advance for you help, and I love the encouragement that your article has brought me. I am a fighter mom, am a non-conventional treater, and am not sure how people can use antibiotics for these diseases, when the gut needs to be healed and intact, in order to heal the brain. Thank you!

    • Honeybee says:

      Hi Erica,
      I’m so sorry your daughter is struggling. PANDAS/PANS is rough. We utilized biomed initially. Our son got better to a point, but then started flaring again and the usual treatments were not calming his body down. It was then we took him to see Dr. Buttar at the Center for Advanced Medicine. We haven’t looked back. He began to make great strides and is mostly symptom free without any flares now. For our son, his detoxification therapies were key to his healing. Also addressed were his metabolic and GI health.

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