How we are addressing Tsw flares
Flaring seems to be an inevitable part of going through TSW. From reading stories and doing research it seems that the flares should calm down or lessen in intensity and amount the further along in your healing journey you are. For Liam, a flare means flushing and redness, extreme itchiness, stinging/burning open wounds, and a general feeling of weakness and malaise. That is not at all what happened when he just had eczema. When I tell this to health professionals I am just told to start an oral steroid with him, and am still just trying to wrap my mind around how that makes sense. I can see it potentially being helpful to ease discomfort and reduce inflammation WHILE addressing the “root cause”, but that is not their plan and there is no timeline for how long he would be on the medication. I just can’t bring myself to put him on another medication. I am unsure where we are in our healing journey since I believe we have been going through this for a while and we are currently working on tapering the steroid. Some ways we are addressing the inflammation are through diet and healing supplements. Whatever reason they were on steroids in the first place is still there. So if that was eczema, they still have eczema, they just also have TSW, which is far far worse. We are working on decreasing his inflammation, which for us means chiropractic work, supplements, castor oil packs, removing and adding certain foods ect. which takes time but I hope will help us get through TSW and help heal the eczema that was there in the first place.
I would like to go more in depth of the different ways of supporting those going through TSW, as well as eventually writing about how to support the caregivers (!!!) because it can be an exhausting, sleepless, relentless job. I have an article here, were I explain some practical things we do to take care of him. I also have an article here, explaining a bit about what we do for emotional and spiritual support. For now, I will go into the ways in which we are supporting his body to decrease inflammation since it is under tremendous stress right now.
Topical steroid withdrawal is extremely hard on the adrenals. The way I’ve heard it explained on The TSW Podcast is that steroid creams supply the body with a synthetic from of cortisol which is the stress hormone produced by our adrenal glands. When you are giving it to your body for an extended period of time it essentially tells the adrenal glands that they just don’t have to do that work anymore and so they stop producing it. Then, when we decide to stop the steroid, the body is in panic mode because the adrenal glands have not been doing this part of the job in a long time and have to quickly wake up. Some common symptoms in TSW is fatigue and insomnia. Ways in which we are supporting his adrenals are making sure he is getting minerals first thing in the morning, vitamin c, quercetin, high quality salt, potassium*, magnesium and plenty of rest when he can. We try and stick to a certain bedtime with no screens and the routine and lack of stimulation beforehand helps him get to sleep. There may be much better ways to go about this, but this is what we have found to be helpful for his energy levels so far.
*cream of tartar is a great inexpensive source of potassium. We add it to our smoothies along with a pinch of high quality salt
TSW seems to exacerbate his prior health struggles and in our case this is digestion and allergies. He is very sensitive to foods right now and often complains of his stomach hurting. Some things that have been very helpful is a good digestive enzyme, a DAO supplement if eating a higher histamine meal or any leftovers, and tweaking his diet a bit during this time.
Along with helping him digest his food better, we have removed all dairy, gluten, soy, oats, eggs, and nuts while we work on heal his gut. We worked with our chiropractor to help us identify which foods would be best taken out, but while working through TSW- removing gluten, dairy and processed sugars could be a great help lower their overall inflammation.
Because TSW makes you so itchy we are doing a low histamine diet right now. We know he has a histamine sensitivity and any other time he seems to handle it better but right now the body needs any extra support it can get. You can Google a list of high histamine foods to learn more about them, but the one food we saw an immediate improvement when we took it out was bananas. Bananas used to be his snack after dinner and we never correlated it with how itchy he was after. While he still gets itchy it seems to be way less and I think its because we are more aware of the histamine triggers before bedtime. We are just now removing almonds and most pork products to see if that helps reduce the itch as well. We are starting D-Hist Jr. with him which gives him the vitamin c and quercetin, along with other herbs like stinging nettle that help decrease the histamine in his body. A big part of this journey is getting creative and trying to remain positive. Instead of focusing on the foods he cant have right now, we just keep talking about all the wonderful foods that he still can consume.
To strengthen his gut barrier we are supplementing a dairy free colostrum. I have seen so much improvement after giving this to my daughter to help with her skin. We just started this a bit ago and are working our way up in the amount we give him.
This is not all we have done or are doing, and one of the hardest things that comes with going through this is that it always seems like we could be doing more, or the feeling of if we just try this new supplement maybe it will all go away! I don’t want that to be the case when reading this blog, my hope is that this list will spark ideas and maybe add a missing puzzle piece to your healing journey. This is by no means telling anyone what to do, because everyone going through this is so unique, but I owe so much to reading other peoples healing journeys and then applying what resonated with me and trying it out with our son.