Hi again concernedmomma,
Oh, your little four year old son. This must be so tough on your son and on yourself and your husband. Heart operations and now this. I'm going to detail a whole lot of stuff I do. It makes for boring reading but I figure at 4 years of age your son will not have fully worked out how he gets to feel most comfortable. And I know that at four kids are better at experiencing stuff than explaining the stuff they are experiencing. If something hurts, it just hurts.
I can't believe I didn't mention my fans when I responded to your posts. I'm glad you came across that information. My fans rate highly, up there with my best friends. I have a non buffering fan (a Dyson) it's not really as strong as I'd like it but it has a smooth flow -- no buffering -- which doesn't irritate me and I can direct it onto the hottest parts of my body easily. They are very expensive for a fan though, around 300 dollars here in Australia and they aren't really strong as they should be, certainly not for the price, but it can be effective on many days. They have no blades and I imagine that they would be relatively safe for kids as long as they don't mess with the electicals, etc. My younger grandkids are fascinated by the fact there are no blades yet the air blows through .I'm actually more relaxed when my little grandaughter is around to have this fan on as it is fairly stable and there are no blades she can get at. I also have the usual type of fan with blades, that gives out stronger air flow, and helps me too and s much, much cheaper. It depends on the sort of burning sensation that I experiencing which one I will choose to put on. I don't have central air. Although it's a goal of mine to get it. I've learned to have two fans in the house at all times because one will inevitably break down, as I'm using them for a long time.
I do have a portable air conditioning unit that cools the room and empties all hot air through a tube in a window, outside. You don't have to cut the window or anything. The window is open a bit and a metal piece fits into it which has a hole for the tube. I am careful when my grandchildren visit because we live two floors up and I do worry they could push the metal piece out and fall out. So I turn it off if I'm alone with them and just use my fan. I take the metal piece and tubing out and close the window. Just in case I have to leave the room. For years I had a sort of airconditioner that I had to put water in (to cool the air) and that didn't have an outlet to the outside, and this was effective, but the one I have now is just as effective without adding water. However the one I have now is really noisy and it cranks up and down to maintain an even temperature and will wake me at times. It's made by a company called DeLonghi. You could probably find a quieter one if you wanted to look into this option. I'm sticking with the one I have until I get central air conditioning. I've noticed that when in a hospital environment or large medical centre a lot of my pain and flaring often goes away. I attribute it to the good airconditioning they have. Also, although I'm not able to shop at the moment the temperatures maintained by big shopping malls is often great. A very mild evening or late afternoon is the best time for me to get outdoors as if I can cool down in the very late afternoon or early evening I will usually feel better for longer. I'm lucky that I live across the road from the harbour so I can go to the park in the late afternoon or early evening and often experience the cool air coming off the harbour.
A number of members of the forum use chillows to rest their feet and other hot body parts on. I didn't know about them until I joined the forum in April. I haven't bought any yet but will when the current winter in Australia comes to a close and it starts to warm up. You can buy chillows over the net.
Has your son indicated a preference for certain clothes or even no clothes at all?. I'm not alone in that I am often getting around the house dressed in very soft t-shirts of a particular brand and my underpants. Other members find they need to dress in a similar fashion. I buy the same style every time and only in the white because the white seems to be a different, softer cotton than the other colours. Crazy sounding I know. When I need to buy clothing I always do a 'face test' before purchasing it. If it's soft enough on my cheeks then there's a good chance it will be soft enough for my most hot and painful times. I'm a bit like the story of the princess and the pea. Your son may not experience this, not everyone does, but I'm mentioning it to you because he may not have realized that it is a problem for him yet. Or he might not know exactly what is the problem.
I rarely wear shoes. And when I do I find loosely fitting all leather sandals -- with no synthetics -- are best for me. This winter things have changed for me. I used to always be barefoot but now I find that on some cold days I need to put on light socks or my feet will get very cold and painful -- they can often feel like they are icy but burning at the same time. The light socks prevent this for me. Most days, usually between 5 and 7pm, I start to feel warmer than I have all day and if I've had socks on my feet start to get a bit warm too and I take them off and it always feels like such a relief.
I'll often be stripped down to underpants and t-shirt and hubby will be sitting next to me on the couch in sweat pants, sweaters, thick socks etc. Sometimes, the seams of clothing can irritate and hurt. On those days, when around the house, I wear things inside out. I often do it too when I'm going out - wear my t-shirt turned inside out. If it's not hot I will wear old clothes made of silk as the silk will be cooling and very smooth. Most comforting. When it's hot weather the silk just does not breathe well enough for me and gets too hot, then cotton is best for me.
Sheets and pillow cases have to be very soft high grade cotton and it's better for me when they have the sateen type finish. For cold nights, when I need to cover most of my body, or parts of my body with a blanket I have the softest acyrilic one I could find. After 4 years I'm wearing it out and it's time to get a new one. Cotton blankets can be a bit rough and I can't wear wool or have woollen blankets anywhere near my skin. Some people find they can't have coverings on them at all and when they sleep they have to use a cage that the covers go over so that they stay warm but not hot and their skin doesn't hurt from the feel/weight of the clothes. I'm sure they will come along and see your post and explain exactly how they manage this. All this might be unneccessary for your son, and I don't want to overwhelm you, but I'm just trying to run through the things that help me and things I can remember that help others.
I do want to say that there are days that I can wear very normal looking clothing. Days when my skin is not as sensitised and flaring. Sometimes I can wear slip on shoes but they are made from soft suede with leather soles etc. I just find synthetic shoes make my feet burn within minutes. It depends on the day what I'll choose to wear but if I'm staying home I always go for the really soft t-shirts and pj pants. I usually turn my pyjama pants inside out because often the material is softer on the outside of the pj pants for some ungodly reason.
Hot drinks can set off a flare. I tend to drink cool water or warm drinks, never hot. Depends on the weather temperature. I have a problem with many foods. I went on a very restrictive diet not long after the EM flared badly the first time. It helped me a lot to begin with but I've found that I'm now flaring even when on the restrictive diet. I sort of stuck on this restrictive diet because going back to a more normal way of eating makes it all worse. I wish I'd left well enough alone in this regard and never started the diet. Having said that chocolate is a flare certainty for me (and still, very very occasionally I'll get an urge to eat some and then curse myself for doing so when the flare kicks in). Some people say sugar is a problem for them. In my case I'm fine with sugar. At my last visit to my EM and POTS specialist, the doctor who diagnosed me with these conditions nearly 9 years ago -- I've been thinking it was 8 years for so long I forgot to think of time passing -- anyway my specialist mentioned avoiding foods high in salicylates. He mentioned fruit specifically. Plus he said to stay away from spices. I was already doing this, so in the past 9 years he has actually caught up with the possible food trigger aspect of EM. You can find lists of high salicylate foods on the net. Just make sure it's a reputable source. But I do caution anyone going down this route that you may find yourself in a worse mess eventually. Avoiding certain foods can help. But a few people, I'm one of them, become more reactive to them by avoiding them. And it can mess with the nutritional aspect of your diet. It has certainly messed with mine. I'm actually hestitant to mention diet but feel you should know of all the possible ways of getting relief for your little son. Just be cautious about messing with his diet and seek the help of a dietician that understands high salicylate restrictive diets. This science is not proven. It's all pretty much subjective science and has been criticised for there being no objective studies done on this. I'm critical of it, whether it does more harm than good, in the end.
I don't think it's universal when it comes to EM that all people are comfortable with cool water. I'm sure someone else will come along and tell you that they find cool water to have the opposite effect it has for me. We are all different in so many ways, and the same in others. I have found everyone on this forum to be really kind and I have come across people whose descriptions of pain and heat are almost exactly like mine. I should have thought more about this before I mentioned the beach being beneficial. I have learned this winter that cold air temperatures can cause me to flare. Sometimes I can get very cold and then flare up red and hot. Up until this current winter I used to love winter but something has changed in my body.
My fan is my best thing when my skin is hot and burning. It will cool me down. I like the cool water, as i said, so a cool shower followed by sitting in front of a fan and keeping my feet elevated really helps. Some people have to elevate their feet and legs up against the wall to gain relief.'''
I'm sure I'll think of more stuff. And so will other people. I hope I haven't overwhelmed you. And please try to comfort yourself with the thought that EM does resolve in many people. And that even now they are trialling a new med for it. New things come up all the time.
blue
