Where we started in our treatment of PANDAS

This is the post I wrote when we were beginning our PANDAS journey.  Please read “Trial and Error and what worked best” post for what we feel is the most important now.  Read this to know where we came from to get there….ugh.  There’s good stuff here, but oh, I thank God with all my heart that we’re past it now!!!

Phase 1:  3 Weeks of Cefdinir antibiotics for Haley’s full blown strep throat infection.  Then the prescribed course is prophylactic antibiotics daily until they are 18 or 21.  The entire family was put on a weeks dose of Cefdinir in case we might be carriers.  We also took the dog to the vet and had him tested for strep.  (Some dogs are carriers, and give strep to the family again and again.)  The first mistake we made was having the entire family on a broad spectrum antibiotic, for strep none of us had.  We were in fight or flight mode and panicked.  As a result, I ended up with crazy diarrhea for a week and a half, in the ER with an IV of antibiotics for what we thought was a case of C. Diff, from the antibiotics, and on another dose of antibiotics to combat my C. Diff.  Eventually I got better, but it wasn’t C. Diff, I was just wiped out from antibiotics.  Haley, on the other hand, responded very well to them.  She got a little better every day for the first week, but then she seemed to get “stuck” on her progress.  This was disappointing for us.  We wanted a magic pill that would make it go away as quickly as it had appeared.  This wasn’t the case.  However, we were very thankful for the progress she had made.

In between bouts of debilitating diarrhea, literally, sometimes 20-30 times a day.  I was researching, and researching, and researching.  I found some good reports of treating PANDAS with Homeopathy.  The doctor with the best reviews had been treating PANDAS and Autistic kids for years, (amazing how many kids seem to have both) and was in New York, but did skype appointments online.  However, he was very expensive and had a waiting list 3 months out, but, as it turned out (God IS with us!!) he has a cancellation and had an opening the next week, 3 days before her 3 week course of antibiotics was complete.  Pierre Fontaine.

Our skype appointment was interesting, to say the least.  But he was confident he could help us, and that our little girl is going to be fine.  He encouraged us to stop the antibiotics and stick with the homeopathy.  We were very thankful to find an alternative to antibiotics for the next 12 years, but still nervous about getting off of antibiotics.  After all, the NIMH and everyone who knows anything about PANDAS says antibiotics is the only way to go, that it is their best guesstimate for preventing further strep infections and further damage.  Going against that advice was, and still is, scary.

Pierre sent us our remedy, which we have been giving Haley since then.  We also saw a Naturopath in Sapulpa, OK.  He did something with a little vial (I’m guessing it was strep strains?), holding it up to Haley’s heart for a minute.  After this, he said, she would never again react in an overactive autoimmune response to strep.  He also tested each of us with various strength tests, and said we were all overgrown with Candida Yeast, and that was the main source of our problems.  Once we could get that under control, we would be on the path to recovery.  Haley was terrified and in panic during her portion of the appointment, so it wasn’t exactly conducive to questions and answers.  He sent us home with a list of foods not to eat, and a bunch of supplements for the girls and I for candida.

Candida Yeast Treatment (All from MVP Vitality Labs  http://www.mvpontheweb.com/)

Undecyn

Healthy Flora (Lactobaccilus Acidophilus) Lactobacillus Acidophilus (Guasanteed live and active organisms of 4 billion per gram)

Pau D’Arco

We took these for a few days, then Haley got very sick.  Throwing up, sore throat, lethargic, anxiety, and she stopped eating.  The anorexic behaviors seemed to flare as well as the PANDAS.  She also got an external yeast infection and complained constantly of her stomach hurting, and seemed very constipated.  Strangely, I got one at the same time, and I haven’t had one in years.  I was also very constipated as well.  Pierre changed Haley’s remedy.  My husband, ever the voice of reason, said we needed to stop doing the yeast killing, since it seemed to be affecting her digestion for the worse and causing backsliding in our PANDAS progress.  We stopped all the candida supplements, and our symptoms and sickness went away.  Unfortunately, it took Haley longer to get well, and her “list” of acceptable foods was even more limited.  Basically, she would only eat Raw Meal Vanilla shakes (by Garden of Life).  She made them herself, with raw milk, gelatin (protein), vanilla, cinnamon, and Raw Meal.  This was her breakfast, lunch, dinner, and snacks.

After this, I hit the researching again.  Turns out, our “Healthy Flora” aka L. Acidophilus, may not be such a good choice for kids with compromised digestion…

“L-Lactate, which is usually predominant in the body, is easily metabolized. For most people D-Lactate is not a problem, either, but in large amounts it may be difficult for those with impaired digestion to break down. This is especially true for those who have difficulty digesting carbohydrates.

Certain probiotics – especially L. acidophilus – are sometimes taken in huge quantities because they’re considered “safe in any amount.” However, L. acidophilus mainly produces D-lactic acid, and for those who cannot easily break this could create unintended consequences….”

“Unless they’re taking megadoses, it appears that most people with good digestion will be able to clear excess D-lactate. Unfortunately, the individuals most likely to experience side effects from D-lactate are those who are taking probiotics therapeutically for conditions such as: autism, ADD, chronic fatigue syndrome, leaky gut syndrome, compromised immune system,

“…invasive infection from probiotic strains is rare but possible, though some actual infection rates may be under-reported due to misdiagnosis as “die-off.” In this study set, a little girl who had been given acidophilus from 4 months to 18 months began exhibiting “nervous shuddering, ticks, and OCD tendencies with greatly increased amounts of flatulence.” Lab tests indicated an overgrowth of L. acidophilus”

Read More at http://www.mommypotamus.com/popular-probiotic-strain-may-induce-neurotoxicity/ © Mommypotamus

Well.  Now I know, best to research before giving it to my child.  Especially when a doctor says, “Well, I don’t know about PANDAS specifically, but it’s autoimmune, so we’ll just treat it like any other autoimmune disease.”  PANDAS isn’t like every other autoimmune disease.  You don’t want to mess up their digestive systems any more than they already are, creating more problems than they originally had.

On the other hand, it was, in her case, probably a combination of not being able to digest the L. Acidophilus, and having serious “Die Off” symptoms from the yeast dying off and releasing their toxins into her already overloaded little body, causing the sickness we dealt with all week.

So….here’s the low down on Candida “Die Off”, or, exactly what we dealt with in our poor little girl.  Would have been nice to know this before we started the supplements…

“When yeast cells are rapidly killed, a die-off (or Herxheimer reaction) occurs and metabolic by-products are released into the body. The Candida yeast cells actually release 79 different toxins when they die, including ethanol and acetaldehyde.

Acetaldehyde in particular has a whole host of detrimental effects on your health and wellbeing. It can impair your brain function and even kill brain cells. Your endocrine, immune and respiratory systems can all be affected, and it also damages the membranes of your red blood cells, reducing their ability to carry oxygen round the body. Again this directly affects your brain, so you can see how acetaldehyde is linked to Candida symptoms like brain fog and fatigue. These by-products also cause allergic reactions and inflammation that lead to an array of undesirable symptoms.

Candida Die-Off symptoms will vary from person to person, as each will have different degrees of infestation. If you are having severe Die-Off symptoms, slow down your treatment and reduce your dosage of probiotics and antifungals. The liver is your main pathway for eliminating toxins, and the Die-Off symptoms mean that it is being overwhelmed.

Die-Off Symptoms
Here is a list of some of the symptoms you might experience during a die-off (otherwise known as a Herxheimer reaction).

Nausea
Headache, fatigue, dizziness
Swollen glands
Bloating, gas, constipation or diarrhea
Increased joint or muscle pain
Elevated heart rate
Chills, cold feeling in your extremities
Body itchiness, hives or rashes
Sweating
Fever
Skin breakouts
Recurring vaginal, prostate and sinus infections
The Die-Off, or Herxheimer reaction, has been documented in research on antifungals. One 1980 study (see here) of the commercial antifungal Nystatin found the following:

“One phenomenon deserving emphasis is seen occasionally when therapy is initiated. It suggests the Herxheimer reaction … The reaction is usually limited to a flu-like syndrome of mild generalized aching and lowgrade fever, but may also encompass an exacerbation of the patient’s allergic manifestations.”

from http://www.thecandidadiet.com/candida-die-off.htm

So, what now?  We know she has Candida, since the die off was so severe.  But I’m not doing that to her again.  In fact, it’s like she knows those little pills are what made her sick, and refuses to let me near her with them now.  I’m thankful that we didn’t stumble into BioKult probiotics, (recommended by the author of GAPS).  It turns out, BioKult probiotics actually have a Streptococcus (Strep), strain in them!  For kids with PANDAS, just taking this probiotic has sent them backwards down the PANDAS rabbit hole.

Enter, Gut Pro.

“GutPro’s™ unique custom probiotic formula is based on extensive research gathered from communities with a vested interest in improving gut health.

GAPS Diet (Gut and Psychology Syndrome)
Body Ecology Diet
Gluten Free / Casein Free / Soy Free (GFCFSF)
Autism / PDD-NOS
PANDAS, PANS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections)”

Unlike other probotics, GutPro™ is free of unwanted additives

No allergens (e.g. dairy, corn, soy, gluten. GutPro™ probiotic is produced on a non-dairy, non-soy vegetarian culture)
No fillers or excipients (e.g. inulin, cellulose, maltodextrin, FOS)
No strains that are reported to cause reactions (e.g. streptococcus thermophilus, etc)!!!!!!!!!!!
No strains that contribute to d-lactic acidosis (e.g. l-acidophilus, etc)
No unnecessary ingredients (e.g. magnesium stearate, silica, titanium dioxide)”

from http://organic3.com/gutpro/

AND you can buy an ice pack, and a little set of graduated teaspoons, to slowly increase your dosage and not overwhelm little bodies with die off reactions.  I ordered mine yesterday.  And I’m cancelling my next appointment with the doctor that prescribed the dose that sent my little girl backwards, so much so that we’re still trying to pick up the pieces, two weeks later.

In the meantime, we have cut out gluten from our diets, and cut out white sugar.  We’re still doing some honey and maple syrup.  We’ve also added Green Pastures Fermented Cod Liver / Butter Oil.  This stuff is nasty.  And I won’t lie, it was a BATTLE.  Screaming, fit throwing, big ol’ battle.  But she took it.  And she got a yogurt covered raisin (as close to candy as we get around here.)  The next time, no big deal.  I even showed her the chapter about Fermented Cod Liver oil in the GAPS book.  And you know what, that day, she was better.  And the next day, she was better.  It’s hard to say if it’s the cod liver oil, or the diet changes, or the homeopathy, but the days after we started the oil, she showed definite improvement with the PANDAS symptoms.  That’s all I’m saying.  It’s worth the battle and the price and the yogurt raisin if it helps.

“Fermented Cod liver oil is ONE of the MOST nutrient-dense foods on the planet! FCLO is rich in eicosapentaenoic acid (EPA) and docasahexaenoic acid (DHA). EPA & DHA are essential fatty acids found in Omega 3 fat. EPA & DHA are vital nutrients that maintain the health of the brain & eyes, regulate cell activity & healthy cardiovascular function, and play and extremely important role during fetal brain development! EPA & DHA have also been known to help with Alzheimer’s Disease, Dementia, Depression, Autism, ADHA, Aspergers & Multiple Sclerosis. FCLO also contains extremely high amounts of Vitamins A & D. One teaspoon of FCLO contains 9500 IU of Vitamin A and 1950 IU of Vitamin D! FCLO has also been known to be a fertility boosting superfood and inflammation buster!

FCLO, along with a healthy REAL FOOD diet is THE ONLY SUPPLEMENT you need!”

http://www.weedemandreap.com/the-only-supplement-your-body-needs-is/

Oh, yeah, and did I mention the RAW MILK?  We were doing raw cows milk, and loving it.  I love the cream on the top.  Love making our homemade curds and whey…but this week we’re picking up some cow colostrum (super immunity, baby!  You can also buy it in capsule form if you don’t have a friendly farmer with a new calf on hand) and today we had our first taste of RAW GOATS MILK!!!  I was bracing myself for nasty, truly, I was….but this was yummy!  I’m not lying.  It was like ice cream.  Apparently, it’s all about what they eat, and how fast it gets cooled down, and cleanliness, of course.  Lest you think I’m crazy, a lot of PANDAS and Autistic moms actually use camels milk for their kids, but a study in Germany showed promise with raw goats milk (in healing the gut and helping with inflammation.)  Next on my list, a Kinder Goat or two, so we can milk our own…but that’s another post.

For more info on why you need raw milk… http://www.weedemandreap.com/drinking-raw-milk/

Oh, and we’re doing Epsom Salt detox baths, and Bentonite Clay detox baths, and I’m switching our soaps to natural goats milk soaps.  And we’re trying to eat all REAL FOODS, like the Nourished Kitchen, or From Scratch, or Nourishing Traditions books will tell you. That’s it.  For now.  I’m tired.

Oh, and did I mention we’re so blessed, so so blessed?  God is putting the right people in our path, each way we turn.  And when we hit a bump in the road, we still get some new knowledge to take away from it and move forward.  Thank you Lord!!!

——————————————

This blog is written by an anonymous mom. PANDAS disease is ugly. It’s practically unheard of, but it’s not rare. 1 in 200 kids has it. That’s right up there with childhood diabetes…but my pediatrician had never heard of it. This leads me to the question, how many kids out there are misdiagnosed, drugged for “behavioral issues”, OCD, schizophrenia, ADD, Autism, ADHD, Anorexic, or taken from their “bad” parents by well meaning doctors, teachers, and lawyers who don’t know about PANDAS. How many parents are searching for answers every night, in silent agony over losing their child, and have no one to talk to, no one who understands. This blog is for those parents. Those doctors. Those teachers. But mostly, it’s for those children. The ones with the fear in their eyes and the haunted look. The chapped and bloodied hands from washing incessantly. The lost childhood.

Lord, multiply this, share it with those who need it most. I don’t have time, or resources, or knowledge to get it into their hands. If it will bless them, let this reach them. In Jesus Name I pray for each hurting child. Amen.

Disclaimer:
This blog exists for informational purposes only. Posts should NOT be regarded as medical advice.
No author or commentator shall be liable for advice given.

It is every parent’s responsibility to determine whether camel milk, donkey milk, specific supplements, the ACC protocol or other biomedical interventions are appropriate for their child.
Furthermore, dosing for vitamins and supplements needs to be tailored to an individual’s needs with the help of a professional.

Thank you for reading the blog, please share it with those in need of hope!

 

 

 

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8 responses to “Where we started in our treatment of PANDAS

  1. HI, I am getting a lot of info from your blog! Thanks for sharing your story! I was wondering if you still use the GutPro probiotic you talk about in this post? I was thinking about ordering it but wanted to make sure you’re still happy with it. Thanks for your help!

    • Hi Pamm, thanks so much for your encouraging words! I hope it helps you and your little one. I still like it, but honestly, I forget to use it half the time! With our diet change and the donkey milk / camel milk, I think we’re getting a lot of good gut benefits there too. Still, we just went to see another iridologist, and she said we still need to do the probiotic. Stinking candida! I’m going to add it back into our routine. If you do get it, start slow, and get the measuring spoons that go with it. You don’t want to get into serious die off…miserable!

      • Thanks for your quick reply! I’m not even sure if my son has PANDAS but he definitely has adhd and lots of the other symptoms. Just trying to use the correct supplements just in case and I just learned about the probiotics having the strep bacteria in them that could trigger an episode. I did not know which ones did NOT contain them until now so I’ll start with the one you use. Thanks again!!

  2. You’re welcome! Are you a member of the facebook group Recovering Kids / Biomedical Healing? They have so many amazing moms all sharing a wealth of knowledge. Highly recommend it! And good for you, keep researching and looking for answers beyond just medicating the symptoms. You are his best advocate and biggest fan! 🙂

    • I’m definitely going to join the Recovering Kids facebook group! Oh, by the way, from one of the links on one of your pages I found a Holistic doctor in my area that I had not been able to find before, even after checking other “alternative” doctor sites. Thanks again!

  3. I am an adult who thinks as a child I suffered from PANDAS and didn’t even know it. I had terrible OCD and recurring strep infections. I am so much better but still suffer with Candida. So I am going to try gut pro and see how that works. Your little girl will get through this. It’s a hard road but the Lord is with you. I wish I had known what I had when I was younger….

    • Thank you so much!!! How hard that must have been for you and for your parents, not knowing what you were going through. On the candida, one thing I’ve learned since this post is that you should rotate your probiotics so you don’t get too much of one strain, and some are saying avoid probiotics all together. I really prefer to get our probiotics from fermented foods, kombucha, saurkraut, donkey milk, etc. Search for RegardingCaroline.com and her post on avoiding probiotics. I need to update this post with more info. God Bless!

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