Hi. I feel for your son and all children having to cope with Icthyosis problems. I am now in my 60's and have had Icthyosis Vulgaris and Eczema since I was born. Only 4 years ago was I finally diagnosed with Dermatitis Herpetaformis (DH), which I also had from birth. This has caused all sorts of internal complications in my bones, muscles, joints, skin, and many organs.
My mother was a good AMA-trained nurse who believed the new formula was better than breast milk, so that affected me deeply via the Celiac Disease/DH. My mother also made me soak my deep palm line splits (in winter in Pa) in a 50/50 chlorine bleach/water solution. Oh my! Did that dry me out so much, my palms would split even more! Not cool being in high school wearing cotton gloves with coal tar cream smeared all over my bloody palms! Today, I am extra-sensitive to ALL forms of chlorine! I shudder to think of going into any chlorinated water; I would rather die than drink chlorinated water; and I gag and nearly faint when I fill up a container in the sink to feed my gravity-drip water filter.
A genetic scientist was my mentor for 15 years, who advised me to add VITAMIN C/Ascorbic Acid powder to my bath water to neutralize the chlorine and fluoride in the water. You only need 1/2-1 teaspoon per tub! You can also buy Vitamin C shower "filters" online (more like a water "conditioner"), which work FANTASTIC! My skin and hair are so soft and silky smooth when I neutralize the water with Vitamin C. Also, by soaking or showering in the Vitamin C water, you are actually doing "Transdermal Therapy" by getting Vitamin C into the skin, which is acidic AND vitamin C is needed for skin, collagen, and body nutrition. I can no longer take vitamin C orally. I even add vitamin C to creams and lotions (like Jojoba oil for tanning and no burning!), and the external VITAMIN C IS EXFOLIATING MY SKIN, very naturally. And as a bonus, it has also faded my "liver"/aging spots on my face and body! Forget the expensive anti-aging lotions—just add vitamin C to any cream or lotion. I got the idea by reading their ingredients and realizing Vitamin C was the main common, active ingredient. It works well and has many benefits. I HAVE BEEN USING VITAMIN C TO NEUTRALIZE MY BATH WATER FOR 20+ YEARS!!! ANY comments that it does not work and that it makes hydrochloric acid...are wrong and right—they say it doesn't work because they have never tied it; and yes, it does make a WEAK acid that our skin desperately needs to shed and be healthy. It really does work. You have to try it to believe it. Some vitamin stores sell it in bulk powder so it's cheaper, and already in a useable form (for baths, pools, hot tubs, etc).
SCIENCE PROJECT FOR KIDS AND CURIOUS ADULTS: have them fill a bowl or sink or tub with water, have them smell the chlorine in the water, then have them use a watch to clock the TIME it takes for the Vitamin C to neutralize the chlorine after you stir it into the water! Really, it will suddenly turn "sweet" smelling within 5-10 SECONDS! It's like MAGIC! Your son will WANT to take his bath!
The best my skin has ever been living in the cold is when I used a hot tub for 2 years in the cold winter. I de-chlorinated the water with vitamin C, then added COPPER IONS (from SPADEPOT.com) instead of chlorine to kill the bacteria (one reason why water pipes in homes used to be made of copper!)...it WORKS! My tight muscle cramps relaxed, and my skin was so soft and smooth and hardly scaly. I could stay in there for 45 minutes and not come out looking like a prune, OR itching! Unfortunately, the house had mold in the walls, so I had to move into an apartment, so no more hot tub.
Also, I have had significant change in my dryness and scaling when I consume SUNFLOWER LECITHIN! BIG difference! I typically do not assimilate fats, oils and lipids, so ingesting LECITHIN, which breaks fats into microscopic molecules and makes them water soluble, and also makes them better able to be absorbed. I would recommend NOT using SOY lecithin, so common, as there are many detriments to soy (Google: "problems with soy"), AND soy is a strong thyroid depressant that unbalances the endocrine system and depletes the immune system even more. Besides, the natural UNfermented enzymes in UNfermented soy bind the nutrients in the meal that is eaten. Raymond Peat, PhD has spent more than 20 years researching both soy and coconut oil. Fermented soy is the only "safe" soy to eat, in moderation. NEVER EVER substitute soy for the MAIN protein in a child's diet!!!
Another remedy I use is an Infra-Red Sauna—fabulous for producing sweat and moving those toxins out of the body! Other times, my thyroid tends to be low in the winter, and when I get into a pain syndrome like Fibromyalgia, I jump into the sauna in my clothes, and come out 20-30 minutes later with a "normal" body temp and a HUGE reduction in pain. I use a sauna on average 4-5 times/week. I bought a fold-up one on ebay for less than $250. Have used it now for 3 years. That makes more than 600 uses.
The UV in the sun IS HEALING to most skin conditions. I am moving to Florida in the next year, and I can hardly wait! EVERY time I live where the UV always shines (<30 degrees N Latitude), my skin is nearly perfect and I have virtually NO pain! The UV in the sun is stored in our adrenals and is the basis for our immune system. Anyone with any allergies, easily gets sick, colds, fatigued, etc, might investigate ADRENAL FATIGUE. In fact, that is the name for a fantastic reader-friendly self-diagnostic book by Datis Kharrazian. A great self-diagnosis book for the endocrine system is "feeling fat, fuzzy, or frazzled by Richard Shames, MD.
If you seek relief and still adhere to eating the Standard American Diet, you will most likely be greatly disappointed in the lack of relief you will find in using drugs alone. Diet DOES make a huge difference in managing pain and symptoms. Most people with such a devastating disorder will find that they have at least one other and usually many other immune system disorders, as well. When you read the Adrenal Fatigue book, you will then understand just how the organs work in concert to provide homeostasis, and when that is unbalanced, problems appear. I am just now discovering that I am very sensitive to ALL "Stearates" and Citric Acid (NOT Ascorbic Acid) that is stuffed into most vitamins and drugs and foods! To improve any skin symptoms, especially if they are severe and devastatingly itching, it would behoove you to take the time and energy to do a food journal, pulse tests, etc, and isolate the offending foods/vitamins. Celiacs beware that the CASEIN protein in all dairy acts just like gluten in a celiac's gut! Very few people know about that latest research—they are out there eating GF pizzas/food with dairy! How do you know that you ONLY have ONE skin disorder? Most doctors don't bother trying to find anything beyond the most obvious ones, like they mis-diagnosed my DH for 60+ years! If you are miserable, and you have reached a plateau with your doctors, then go down a different rabbit hole and start over! Read, read, research!!! Deeply! Dare to go where no others have gone before, and read real person comments, like on this forum.
BTW, to stop an allergic reaction within 15-30 minutes: drink ALKA SELTZER GOLD (ONLY GOLD). At is core, an allergic reaction is an acidic reaction—taught to me by MD specialists 35 years ago. I used to use it very successfully when I was in my 30's-40's, and occasionally since then. I get very few allergic reactions now, as I am constantly assessing and reassessing my foods, as our body chemistry DOES change!
I realize that I have a more common form of Icthyosis, and that I also have other skin and internal disorders that I have described remedies for-- I hope some of the readers can find a clue or two to help whatever they have. We are unique individuals, and some remedies can be successfully used in cross-categories. I firmly believe from life experience, that most people have more than one disorder, and that the newest research shows that 82% of the population in the US has "some form of Gluten Intolerance"!!! 82%!!! Celiac Disease has been positively correlated with: Diabetes, Downs Syndrome, ADD-ADHD, and some Schizophrenia. It becomes a "neurotoxin", for goodness sake! Astute medical professionals are realizing that gluten also causes MOST of the inflammation in people that eventually leads to a slew of degenerative diseases and drug complications, which would be better managed by eliminating gluten instead of taking dangerous drugs that produce side effects. Gluten is so hidden in so many food derivatives (like "Natural Flavoring", MSG, etc), it has taken me 5 years to ascertain 95% of the gluten in my diet, and I am still discovering the remaining 5% that is reeking havoc in my life. I love watching PBS Masterpiece Theater's Hercules Poirot, Sherlock Holmes, and other detective series, because they condition my thinking to ALWAYS be aware and looking for the clues that reveal the PATTERNS that affect me. Good Detecting to you!