Some days I wish I could jump inside my son’s body…just for five minutes so I can feel what he feels so I can help him and help us as a family. you see PANDAS/PANS is a family disease, it doesn’t just affect the person who is fighting it, it affects everyone in the family. We all suffer sadly as a family, if he is too sick to stay at the zoo, we all leave and go home and deal with the flare, it’s like living with a constant time bomb… you truly new know when things are going to explode! While we are so much better than last summer, and I know some tricks to deal with his flares and die-off reactions while we are treating his Lyme, I still don’t have a magic wand that I can wave to make them stop.
You see PANDAS/PANS is a family disease, it doesn’t just affect the person who is fighting it, it affects everyone in the family. We all suffer sadly as a family, if he is too sick to stay at the zoo, we all leave and go home and deal with the flare, it’s like living with a constant time bomb… you truly never know when things are going to explode! While we are so much better than last summer, and I know some tricks to deal with his flares and die-off reactions while we are treating his Lyme, I still don’t have a magic wand that I can wave to make these flares stop and that is a horrible feeling as a mother.
I am still amazed at how he can be good all day and like a switch it changes and no matter what I give him for medicine I just can’t help him sometimes… he cries he can’t help it and he doesn’t know what’s wrong to explain it to me and I know deep down he truly can’t express in words what he is feeling. He is still so young and has no idea what his body and brain are doing and how to deal with disease and that makes it even harder. The other hard thing to watch as a mother is to see your child in a flare and everyone to think that you are making excuses for bad behavior or that you can’t control your child who is “just acting like a brat”. You know the inflammation that his body is suddenly battling is causing his brain to have so much pressure that he truly can’t control what it is doing, the impulsive behavior, the anger, the silliness, it’s as if someone or something has taken over his body, but to everyone else he is just misbehaving.
I have battled an auto-immune illness most of my life and extreme brain fog is a wonderful side effect of that and I know how frustrating and debilitating that can be nevermind what he deals with on a daily basis. So the big question is will the flares always be a part of his life? Do they get better as you treat the infections? The answer is I don’t know what the future has in store, I am still learning daily about his condition and things I can do to help relieve his pain. I belong to some amazing support groups with amazing mom/dad warriors like myself who battle flares on a daily basis. I can also tell you the severity of the flares has cut down big time, and the length of them is not as bad, and you learn some triggers along the way to try and avoid. I have also heard from other mothers of my support groups that their child fully recovered and didn’t have flares anymore, while other parents have told me they battle them still from time to time even though treatment is complete.
One of the questions I get asked a lot in emails is what can I give my child for a PANDAS/PANS flare or Heximer Die-Off reaction to help your child and your family survive it. So I decided to make a list of some helpful supplements and tips/tricks to help any parents along the way that have worked for our family. This is basically a look inside MY BRAIN as a PANDAS/PANS mom and what steps I take to help my son out during the day, keep in mind every child is different!
PANDAS/PANS Flare…What is causing it?
A flare with PANDAS/PANS or really any auto-immune issue is your bodies response to sudden inflammation and swelling, so the big thing you have to ask yourself first and foremost is what is causing the inflammation?
- DIET/Food- Did your child wake up in a flare? Did the flare start after they had a meal or a snack? I find journaling is best because all of the tests in the world will not always help you with food intolerances vs.allergies. I find my son has trends with his flares or inflammation, he can be fine in the morning and eat breakfast and start having issues or sometimes it’s in the middle of the day. If you haven’t already I would suggest cutting out Dyes, Preservatives, Dairy, Gluten and even an elimination diet if you are just starting out on the journey with PANDAS/PANS because food can cause a lot of inflammation issues. No matter what find the pattern of your child’s flares, especially if they seem to be coming and going throughout the day.
- OUTSIDE/ENVIRONMENTAL/CHEMICAL Triggers- This one has still been a learning curve for us, but we notice when our son gets overheated, exhausted he always flares up. Chemicals like cleaners are all natural in our home, but at school and other people’s houses you can only control so much. Suntan lotion was causing flares last summer, so we switched to ones with no harsh chemicals or heavy metals, but things like chlorine in pools over the summer or bacteria in ponds can also trigger a flare. Vibration and noise are another big ones as well, just like in a histamine reaction!
- ILLNESS/INFECTION/OVERGROWTH- Is your child acting sick? complaining more than normal about something bothering them? Are you or anyone in your house sick….THIS IS A HUGE ONE IN MY HOUSE! We learned that with children who have PANDAS/PANS they can react from being around someone else who is sick. I noticed my son would only act up within minutes of being around me, but would be fine at daycare, fine with my husband, but then I added myself back in the figure who has Chronic Epstein Barr and CANDIDA and he would be horrific. Usually, within days I realize I myself am in a flare or my CEBV is reactivated and I start treating myself and he becomes calmer around me. Overgrowth, Yeast is a big one, and I feel we are constantly battling it, it’s really a vicious cycle and especially with the summer and camp snacks we are always treating it. He can flare from the overgrowth of the yeast as well as the Die-Off reaction from trying to treat it, so its a matter of figuring out if it’s just temporary because you are treating something or if it’s because you need to treat something!
- SUPPLEMENTS/MEDICINE CHANGES- Did you try something new with medicine or supplement routine? New Probiotics or even existing ones that they may have been on for a month and having no issue with all of a sudden start causing a flare. Always make sure you avoid probiotics with Strep Strains and D-Lactate forming strains as many PANDAS/PANS kids flare, again just journal and keep notes so it helps you determine if you see a pattern.
- TIME OF DAY/WITCHING HOUR/FULL MOON/WEATHER- This one I didn’t believe for the longest time, I thought it was a crazy theory in itself until I started journaling and noticing trends in my son’s behavior. Full Moon and New Moon like clockwork would flare him up for a couple days either before or after, so what’s the reason for this? Some parents say its parasites hatching and causing inflammation, so we treated parasites, and honestly I never saw any real improvement he still acts up around the full/new moon, so I have learned to just brace myself for it. Weather- Humidity and pressure in the air are another big one for my child, even in a house with A/C if it’s rainy or about to rain I can expect he is going to have pressure and inflammation and I need to help lower that in his body.
- DIE-OFF-(or Herxheimer reaction) occurs and metabolic by-products are released into the body faster than the body can get rid of them, this reaction is different for everyone. I have noticed sometimes my son can get very mean, aggressive and impulsive and other times be lethargic and have flu-like symptoms. This one is easier to determine if you know you are treating something like lyme, strep, yeast, etc. If you are treating something you can expect that you will see some die-off and it will be temporary and can be helped with some of the supplements I will list below.
So what do you do and what can you give?
STAY CALM-TRY NOT TO YELL OR GET FRUSTRATED- This is the hardest thing, you are burnt out, tired and while you know your child can’t help it your human…IT SUCKS! So try to get a break, if it means switching with dad so you can cry on the bathroom floor and reset, or go and work out so you can reset and have more patience because they will feed off of your negative energy.
Supplements for Flare/Inflammation
(I have included the links to the brands we have found work really well for us)
- Motrin- Dye-Free… Avoid Tylenol as it depletes Glutathione which your body needs to detox.
- Omega 3 Oils: These polyunsaturated fats have well documented anti-inflammatory activity
- Arnica– Great homeopathic natural anti-inflammatory
- Curcumin (Turmeric): Curcumin, an extract from Turmeric (a spice) is a potent anti-oxidant and anti-inflammatory. Using a bio-available and fast acting form, such as Curcumin Active (made by AOR) can help manage a PANDAS/PANS symptom flare by reducing inflammation in the brain.
- Anti-histamines- Benadryl – As well as Quercetin if you are looking for the most natural form of anti-histamines. During allergy season my son takes Zyrtec to help with histamine levels.
- Essential Oils- I find this works best on the bottom of the feet , just make sure they are pure essential oils and use a carrier oil as well. Peppermint, Ylang Ylang, Lavender, Roman Chamomile, Sweet Orange & Patchouli , Vetiver are just some that we use
Supplements for Die-Off
- Magnesium Citrate– The biggest thing I find is my son gets constipated during die-off and becomes miserable -Make sure bowel movements are regular
- Milk Thistle-This herb contains a compound that helps to repair damaged liver cells and protect them from the toxins released in Die-Off.
- Vitamin -C-Vitamin C (ascorbic acid) restores your adrenal function and helps to boost your immune system.
- Activated Charcoal– Great to trap toxins and pull them into the bowel to be removed, must be taken 2 hours away from any supplements/medicine and can make a child constipated so make sure not to give long term.
- Burbur Detox is a supplement produced by Nutramedix available only in tincture form. It contains an extract from a plant in Peru called Desmodium Molliculum and helps the liver detox
- Bentonite Clay Baths– We do these daily when we are treating his Lyme or yeast to help with his toxin overload
- Molybdenum-Molybdenum converts acetaldehyde (the major toxin released during Die-Off) into acetic acid. This can then be excreted from the body like any other toxin.
This is just some of the things I have found to work for my son during both flares and die-off, we are still learning even though it has been a year and again what might work for my son might not work for your child, it’s all about trial and error. We would love for you to share some supplements that you have found work for your child so we can share them with other families!