Thursday, December 5, 2013

Merry Christmas to all!

I am struggling to write my Christmas letter... this year sucked for us, to put it lightly. I don't want to write a Christmas letter that is a downer, as they are supposed to happy, cheerful notes to read. I wrote a lot and will paste it here, but will probably shorten it for the final letter to send out.

Honestly, this year has been the toughest year of our lives. Not to make our Christmas letter revolve around one sole thing – Keegan’s skin – but this has consumed our entire year... this is what most of our time and energy has been focused on, this is what I thought about every minute of every day this year. We discovered in March that Keegan has what is called Topical Steroid Induced Eczema. Basically, he was over-prescribed topical steroid cream, and it wreaked havoc on not only his skin, but most of his internal organs as well. Google brought me to a blog about a mom and her son who happens to be the same exact age as Keegan. On the main page of her blog is a picture of the back of her son’s knees... which could have been Keegan’s. I contacted this mom, and she led me to the organization called International Topical Steroid Addiction Network (ITSAN) and added me to the support group through Facebook. I started talking with the hundreds of other people out there suffering from the same thing. Every symptom aligned perfectly and it was my answer... but what’s the cure? Time and symptom management through the withdrawal period. Simple as that. But go through a hellish withdrawal while you wait to be cured. This year, we have dealt with adrenal fatigue, poor digestion, bloating, leaky gut, boils, nerve/muscle/joint pain, increasing “allergies”, burning/raw/oozing/swollen/flakey skin. We only went swimming 2 times this summer, and we didn’t play outside as often as we would have liked. The chlorine made Keegan scream, and the heat tossed him into a scratchy, oozy nightmare. I had to carry him up and down the stairs often, as he complained of pains in his feet, and couldn’t bend his knees because the backs were so tender and swollen. We spent a lot of time this year crying, laying around watching TV, scratching skin flakes off, doing lots and lots of laundry, experimenting with different creams/bathing techniques, experimenting with diet and supplements, and talking with my support group to keep me sane. My support group has helped me immensely, as I kept referring to healed pictures and stories to hold me back from caving into the steroid cream again. Time for healing varies, and I estimate Keegan’s time will be 1 year; he’s almost 10 months in. He’s looking so good! Throughout this process, I’ve learned more about GMOs and their connection to eczema and leaky gut. Hence our family’s switch to an organic and non-GMO diet that consists of no dairy and no gluten for 3 of us (Matt hasn’t jumped on that wagon yet!)

Keegan's skin is looking great!! My 2 biggest struggles right now.... BOILS and BLOATING!
Now, to a healing picture of feet!

Monday, August 26, 2013

25 weeks in.

Pictures of healing, WITHOUT medicine, WITHOUT topical steroids, WITHOUT drugs. Just time! :)

Friday, July 12, 2013

We are taking it day by day, week by week...

We got a short break last week with Keegan's skin. This week has been another major itchy/oozy/red week. I know that it'll be touch and go until he's completely healed, but it still gets me sad... We went to a playdate yesterday with all of Keegan's close friends, and he was whining and crying and scratching the whole time. NEVER had he begged to go home from a playdate, but yesterday he did. It broke my heart. :( This was the day that made me realize that we'll have to do more indoor activities this summer, and only venture outside in the early morning and evening. I am still determined to create happy childhood memories for him during this itchy insane time in him life. :(

Sunday, July 7, 2013

What do topical steroids do to your body?

There is a long list of negative things that topical steroids (hydrocortisone, triamcinolone, desonide, etc) can do to a person's body.
I'll list the side effects that have happened with Keegan

* After repeated use of topical steroids, the capillaries in the skin don't constrict as well. This means that higher doses of the steroids, more frequently, are needed to have the same effect. This can happen after just 4 days of use. Keegan was prescribed a low dose of TS at first, then higher doses as time went on.

* Topical Steroids change the way the immune system functions. This also means that it affects the skin's ability to fight off infections. Keegan has had multiple "boils" that have become infected, and other skin infections underneath his fingernails.

* Adrenal Gland Suppression: Adrenal glands produce natural corticosteroids, and a large use of topical steroids can suppress this production.

Below are symptoms of Topical Steroid Withdrawal, and common things many people that are withdrawing experience, many of which I have read and nodded in agreement:

* Red, burning skin. This typically appears within a week after stopping topical steroids. It may cover a large area from the start or it may start as a small area, eventually spreading. One classic sign is red skin that stops at the wrist. This leaves the palm unaffected but arms and tops of hands red. YEP
P.S. Typical eczema doesn't burn, it only itches. Skin suffering from TSA BURNS!!!

Unbelievable extremely intense itching. Most experience the itch throughout the entire process, not just during flares. The itch feels like it originates under the skin and is difficult to sooth. YEP

* Shedding or flaking skin. Many people find that they shed a lot of skin. You may need to change bed linens and vacuum daily to keep up with the amount of skin flaking off. YEP

* Swollen skin; swollen body parts containing fluid. Only sometimes (backs of knees, feet and fingers).

* Oozing skin. Ooze may seep out of skin or form in small blisters. You may find a hard crust over your skin – this is ooze that has dried. YEP, Keegan has "oozed" from his feet and back of knees for about a week total so far during this whole process.

* Raw, painful skin. It may feel like a bad sunburn and may be sensitive to even the lightest touch. YEP

* Eczema-like rashes spread from area of skin that was originally affected by eczema. You may experience hives, very dry skin, itchy skin, deep cracks, or tiny cuts in the skin even in areas where topical steroids were never used. The skin is one organ so when one area is medicated, it can affect all of your skin. YEP, the "eczema" spread very quickly over his entire body within a couple weeks of stopping the steroid cream.

* Difficulty regulating body temperature. You may experience freezing hands, feet, or body and often get the chills. YEP, Keegan gets cold very easily.

* Nerve, muscle and joint pain. YEP. Keegan often says his whole body hurts. In the first month or two, he had a hard time walking, and kept complaining of his heel/leg/hip hurting.

* Thinning of skin. YEP. Keegan's skin get's "wounded" so easily. 

* Elephant skin. YEP. Keegan's knees often resemble that of an elephant. Thick, not much elasticity, rough and scaly.

* Constipation. YEP!! I just found out this common symptom. I had no clue... I thought Keegan's bowel movements were messed up due to the GAPS diet. But, TSA could do it too. 

* The stomach, pancreas and liver function is compromised. These organs are supposed to make digestive enzymes to help break down food, as well as help the body absorb foods. YEP! Keegan was diagnosed with a leaky gut, which also means that his body is not properly doing what it needs to do with the food it is given. It's important to take digestive enzymes and probiotics during this process.
Something someone posted on my support group put it like this: "When your liver, kidneys, gut and glands start working for themselves again, your skin won't have to overcompensate and take on their roles to try so hard to detoxify the body. whilst on steroids, the normal functions of organs that help filter toxins are attacked by the steroids as they are too strong and harmful for our organs to cope with or filter out, when we stop using them our organs and glands that normally remove toxins have to re-awaken and start doing their jobs, it may take a long time for this process of healing but with the right foods and support we can all get through this  have faith that your body will heal as our bodies are amazing!!!"

Also, if you get allergy testing done during topical steroid withdrawal, it is inaccurate because your system is hypervigilant and reacts more than it normally would. I can't wait to see what food possibilities are waiting for Keegan after all of this. He will still have to be careful with sugar due to the candida in his gut (once it's under control, I don't want it to come back!), but I'm hoping more food avenues will open up for him.

Bottom line.... Topical Steroid use MESSES YOU UP!!!

But, my boy is a WARRIOR and a FIGHTER. I love him soooo much!!!

Tuesday, July 2, 2013

Entering month 5 for TSW

Keegan's skin has improved, and it seems as though some of his candida issues are exiting. He is still having trouble pooping every day, and they are not "normal" log poops when he does go.
Another mom I've been talking with recommended colonic hydrotherapy treatments, as it helped her son empty toxic waste in the colon, train the colon to fully empty. She said it also helped her son's skin. It's a special machine that lets water flow into your GI tract through a tube, and you poop when you have the urge. This lasts for 20-30 minutes, and it empties the whole colon. So, the 1st one we did was on June 17th, and we had the 2nd one done July 1st (yesterday). The 1st one seemed to help the itch, and the 2nd one seemed to help the back of his knees! This morning, the back of his knees looks the best they've looked since we started this whole process. No dry skin, no scales, no weeping skin, just baby smooth skin! Below is a picture of 11 weeks in, and today (16 weeks in).

Wednesday, June 26, 2013

Eczema, Topical Steroids, and Allergies: Oh My!

Keegan had eczema. It started showing up around 10 months old, shortly after we had started him on solid foods.  Breastfeeding protects a child, and it is recommended by the World Health Organization to keep breastfeeding up to age 2. Am I going to "wean" my daughter? Hell no. I'm scared to death!

So... eczema. You go to the doctor. How do we fix this, doc? Well... this is what I was told: Many kids just happen to have "atopic dermatitis". It can be caused by a number of things, but there is no cure. You can only treat it, then maintain it. Treat it by clearing it up with topical steroids (Hydrocortisone, Triamcinolone, Desonide, etc). Maintain it by doing daily baths and slathering with an emollient moisturizer every single day. Even twice a day if time allows. If it comes back, do another round of topical steroids. If the topical steroids seem to not help anymore, up the dosage and try different kinds. This is what we did. For 3 years.

I was convinced from early on that eczema is cause by an allergy to something. So.... we've been to the allergist. National Jewish is one of the top allergists in the country, so we took him there. Tests were run and it came back that he was allergic to soy, peanuts, tree nuts, eggs, dogs, cats, mold. So, I avoided all these foods, and this STILL did not clear his eczema. Back to topical steroids when it got really bad, and his skin kept getting worse once we stopped the steroids. It was a vicious cycle...

April 2009: Keegan born

Feb 2010 - 10 months old: Small patches of eczema showing up
Also, anaphylactic response to formula around Feb 2010 (hives all around mouth, swelling up, raspy shortness of breath). Switched formula - still milk based - and he seemed fine.
I'm not sure when exactly we started steroid cream, but some time between 1 year and 2 years old.

Feb 2011 - 22 months old: We brought him for allergy testing through a scratch test. Cats, dogs, peanuts, eggs, soy, hazelnuts. We avoided all these foods.

Sept 2011 - 2 years, 5 months old: Scratch test again. Egg, Peanut, Soy, Almond, Hazelnut, Cashew, Coconut

Winter 2012: boils, which look like huge infected looking pimples, started forming on random parts of his body. They got very big and painful, so we had the pediatrician drain them several times. They'd appear on his feet, legs, butt, arm, and eventually one on his face. I kept asking the doc if these could be forming because of the triamcimalone (a steroid cream) because they started forming after we started using this kind of stronger steroid. He said nope, that Keegan's skin is just compromised and more prone to infections, etc.

Feb 2012 - Almost 3 years old: Scratch test yet again. Kidney bean, Soy, negative to all grains and meats. Tore out carpet and replaced with hardwood floors. Got an air purifier for his bedroom.

March 2012 - Almost 3 years old: A facebook friend messaged me to ask if Keegan had eczema (she could tell from my posted pictures). She recommended I take dairy completely out of Keegan's diet, and she told me that dairy and gluten are the 2 main causes of eczema. She works for an "alternative" doctor practice. So.... why oh why haven't my doctor or allergist recommended this to me?? Even though it didn't show up on any allergy tests, I thought it was worth a shot. She told me to give it 2 months to get out of his system.
Within 6 weeks, his skin was CLEAR. That only lasted for about another 6 weeks, then BAM, back came the eczema in full swing.

December 2012 - 3 years, 8 months old: I decided to reach out to "alternative" doctors, and I met Dr. Caitlin O'Connor, a naturopath. I was hoping for some miracle supplements to cure Keegan of his eczema, since avoidance of his allergens was not working. She ordered an allergy test that tests the IgG antibodies' response to foods (rather than the scratch tests we had done which test the IgE antibodies' response). She also prescribed a high dose of zinc supplement, vitamin C, Fish Oil and probiotics.

Jan 2013: IgG test results came back. All forms of gluten and wheat were on there, plus rye, spelt, garlic and oats. I was told to have him avoid all those foods, in addition to what we were already avoiding. Add Vitamin D, and another supplement to support his GI tract health. These results also tell us that Keegan has a leaky gut, and will keep reacting to foods if we don't fix it.
We also found temporary homes for the dogs and a permanent home for the cat, and deep cleaned the house.

March 2013 - almost 4 year old: No improvement in skin, so Dr. Caitlin advised us to go on the GAPS diet, which eliminates a LOT of foods, focusing on probiotics and bone broth to "heal the gut".
I found a nutritionist who specializes in the GAPS diet, Robin Hutchinson, so we met with her to get on track with our new diet. We decided to quit putting any sort of steroid cream on him, because we wanted to see what part of his regime would be helping him.
All grains were removed from his diet. In the beginning, he drank bone broth and pureed soups from broth and veggies. We slowly added in boiled veggies and meats, then some fruits.
The first month or so of GAPS was not pretty. He was lethargic, emotional, constipated. He also had joint pain in his foot/leg/hip. His gut became distended. His eczema got WORSE! At first Robin and I contributed his worsening eczema to die-off. Toxins escaping through his largest organ-the skin. But... we ruled this out because it wasn't letting up.
Oh! And we got our doggie back - getting rid of the dogs didn't do one thing. Our other dog still lives with my in-laws because she loves it there. :)

April 2013 - 4 years old: I found Loren and Kline. Loren is a mom to 4 year old Kline, who is going through topical steroid withdrawal. Forever changed my life as I finally understand what is happening to my son. I joined a support group on Facebook, and talk to sufferers daily. It helps, but this still SUCKS!

May 2013: Keegan tummy is still distended, and though he poops everyday, it seems little and that there's still stuff that's not fully coming out. We had a stool test done and it showed candida yeast overgrowth, an over abundance of bad bacteria and not enough good bacteria, and an inflamed colon. We were prescribed a series of herbs to fight the candida, and told to eat a maximum of 2 servings of fruit a day.

June 2013: Keegan had a colonic hydrotherapy treatment done to clear out his colon. We saw some candida come out, meaning our cleansing is working.

Today and onward: We are managing the pain and itch that Keegan is going through the best we can. We only really moisturize with vaseline. Everything else burns him. I'm continuing giving him a high dose of probiotics, fish oil, candida fighting herbs, and I'm going to start a daily multivitamin (JuicePlus).

Thursday, June 13, 2013

We are in the 4th month of TSW

I guess it's time to update!
We started this whole nasty journey not knowing what to expect. It's hell, basically, and I pray doctors stop prescribing steroids foolishly... It's diminished my son's health, and now we have a long road ahead of us because of it.

Let me start from the beginning, the very beginning. I got pregnant. My whole pregnancy I craved ice cream, sweets, etc, and didn't take care in what I ate for the most part. I knew nothing about "gut health", good/bad bacterias, genetically modified foods, etc. I ate what I want because I thought I could (good metabolism!). I took the test to test for group B strep. I was positive, which meant I "needed" to get antibiotics while in labor to prevent the infection from spreading to Keegan during delivery. No one told me to take probiotics during pregnancy to build up the "good" bacteria to overpower the "bad". I was giving the antibiotics while in labor, and Keegan was also given antibiotic eye drops directly after birth because that's just "what you do". These antibiotics prevent an eye infection that could be passed to baby from mom if she has any STD's. Really??? Well, "just in case". Yeah, thanks people.

So, why am I going on about probiotics and antibiotics?
Eczema is caused partly because of disrupted gut flora in children. Our gut flora plays a huge role in our immune system. We want our gut to be populated mainly by good bacterias, not bad bacterias. The population can be disrupted by poor diet and large antibiotic use (both of which I didn't take care about while pregnant with Keegan). He also had random doses of antibiotics here and there in his first couple of years, for things that "may have developed into an infection" or "just in case it's an infection". Each dose of antibiotics was compromising the balance of bacterias in his gut, compromising his immune system.

I know for a fact that the bacterias are out of balance in his gut, we had a stool test performed on him at the beginning of May. It showed that the bad bacterias are a bigger population than the good bacterias, which it should be the opposite. It also showed a candida (yeast) overgrowth in his colon. It showed his colon is inflamed. Do you know what helps cause all these things to happen? Excessive use of topical steroids, excessive rounds of antibiotics, not replenishing the body with good bacteria (by using probiotics), etc.

I'll continue more on my next post.

Oozing started today, June 13, 2013.

These pictures were taken on June 11. Very very itchy, and knees and feet are the worst spots.

Thursday, May 23, 2013

11 weeks into Topical Steroid Withdrawal (TSW)

Well... I know it's supposed to get worse before it gets better. It has definitely gotten worse. Keegan is such a trooper, or as these sufferers are called in my support group, he's a warrior. I can NOT imagine what it must feel like to itch all over, ALL the time, on every inch of your body. I'm noticing the "thinning of the skin" that steroid use is known to do. Keegan has scratched a couple spots on his ankle where you can see how thin his skin is.
I'm hopeful, but only because of support I am receiving through my ITSAN group (international topical steroid addiction network). I am talking with sufferers themselves, and also other moms with kids suffering. Some are still healing, others are healed. It seems that a lot of people have said that the first 4-6 months are the worst, then it should start to turn around. We are ALMOST in month 3. I would love to see his skin start turning around by the time next school year starts. The sun this summer should be very beneficial in healing as well.
I have to keep holding on to hope, that this WILL get better. Staying strong, avoiding steroid creams AGAINST doctor's orders. The doctors need to get more educated on this topic, do more research, and see success stories. The people that have already seen success, some of them have talked to their docs who prescribed the steroids, and the docs seemed to be uninterested, saying they didn't need/want to see any pictures of proof. I will talk to Keegan's doc about this... eventually. I would like him to heal first, then I'll have proof to show!
Here are some pics of 11 weeks into this hell.

Friday, May 10, 2013

We have a diagnosis! - Topical Steroid Addiction

A self-diagnosis but one nonetheless... Topical Steroid Addiction. Over the past 3 years, Keegan was prescribed steroid after steroid. Hydrocortisone, Triamcinolone, Desonide, as well as Protopic, which is a very potent drug with sickening side effects. Keegan is going through withdrawal... poor kid. Thanks to a blog I found (Loren & her son Kline), I have my answer.

And, here's the website for the topical steroid addiction network:

Poor kid may take over a year to heal from this, but the cure: time.
These are pictures 8 weeks into topical steroid withdrawal (from May 1, 2013).

We also are doing the GAPS diet, and are on stage 4. The goal is to heal his gut so it's not leaky anymore, and he can eventually tolerate more foods. Keegan is currently eating:
- bone broth
- boiled/roasted/sauteed veggies
- ground turkey, ground beef, lamb, salmon, lox
- avocado
- sunflower seed butter made into pancakes with squash and flax seeds
- juices made from apples, cucumber, zucchini, and spinach