Sunday, May 11, 2014

Results from Endoscopy and Colonoscopy

Doc said everything from the colonoscopy scope looked normal and biopsies came back normal. However, biopsies from the endoscopy showed elevated eosinophils, which are cells that only become present during certain times - the ones in line with Keegan are allergies, adrenal suppression, eczema, and hay fever. Basically, Keegan esophagus is inflamed and irritated. 

The doctor told us that the eosinophils could be present either due to acid reflux, or an allergy issue. More likely it's an allergy issue, but the only way to know for sure is to take acid reflux meds for 2 months and re-scope. We are on the fence about both meds and re-scoping, but the doc told us if we leave it untreated, the chronic inflammation it could cause scarring of the esophagus which could lead to narrowing of the tube and even cancer. 

Our thoughts are this:
Of course Keegan has a presence of eosinophils, he's an inflamed mess right now. He feels he has a need to inhale his food - never takes the time to chew properly or eat slowly - so with his esophagus being a bit narrower due to the inflammation, he is swallowing a TON of air. This is what is causing his belly to be bloated a lot of the time, particularly toward the end of the day. 
Once his body has more time to heal, he becomes less inflamed, and his adrenals start working as they should again, his esophagus will calm down as well. 
So..... we are really on the fence about medicated for acid reflux when we REALLY don't think that's his issue. 

WE SAW A SMALL GLIMPSE OF WHAT THE FUTURE HOLDS!
Our family traveled to California on vacation in April - we currently live in Colorado. On day 4 of our 10 day vacation, we started to see MAJOR improvement in Keegan's skin. His skin was the best we had seen it since being on our topical steroid withdrawal journey. It was AMAZING! Super soft, smooth, barely flakey. He could actually walk normally without favoring his sore knees and ankles. He didn't scratch the WHOLE DAY during our 80 degree day at Disney. He didn't even complain it was hot! He swam and swam and swam in the pool / hot tub at the hotel. He played in the sand! He did not whine and complain most of the week. A different child for sure... within 2 days of being back home in Colorado, his skin reverted right back to being super itchy, cracked, sore, oozy, flakey and uncomfortable. We are connecting it to a few factors... Colorado is super dry, not humid, high elevation with less oxygen, different pollens, and we have a dog. 
A couple weeks after being home, we realized we have GOT to make a change... we saw hope in our son that we have not seen for a long time, and we feel like we are in a rut here in Colorado. We can't make a move to California right now, but are hoping in the next few years we can make it happen. My family is from Chicago - which is sea level and more humid - so we decided this would be the next logical step for us. We are moving to the Chicago area, and are also finding a new home for our dog. 
While we are sad to leave my hubby's family and our friends in Colorado, we are excited for what the future holds for us and for Keegan's health. 

As for the acid reflux meds... we decided to start them for now, but try to find a supportive doctor in the Chicago area to see what to do from here. Ideally, we'd love to find a pediatrician who is on board with TSW, who can guide us to what to do about the esophagus issue. 

Please feel free to leave comments if you have any suggestions for us! xoxo

Sunday, March 16, 2014

It gets worse before it gets better?

I've been holding off taking pictures of Keegan at 1 year off topical steroids, because his skin looks really bad right now... I do need to document though, I keep telling myself. I WILL take those pictures.

We've been struggling with a bloated tummy, which basically started a year ago, when we drastically changed up Keegan's diet, and took him off topical steroids. First we tried the GAPS diet, then we tried an anti-candida diet, low fodmaps, no sugar, paleo, no cruciferous veggies, no grains, parasite cleansing, herbs, enzymes, probiotics, magnesium drinks, hydrotherapy, enemas, caster oil packs, tummy massage, it's been crazy what we've tried. He "goes" to the bathroom on a daily, regular basis, so he's not backed up either.... Nothing has worked to ease his belly from being hard and distended.

So, we've decided to take this issue back to the doctor... we took Keegan to a pediatric GI specialist last week, and long story short, doc wants to do a colonoscopy and endoscopy on him.

A couple things that bugged me about this doctor (although doctors only "know" as much as they were trained...)
1. He basically said we wasted our $ on IGG blood allergy testing - according to him it doesn't mean anything since IGG antibodies react to ALL foods.
2. He said the stool test we had done was useless because a "4" on a scale from 1-4 on candida overgrowth doesn't mean anything either. Everyone has candida to different levels, and he doesn't understand why these "natural" doctors want to blame candida overgrowth on a lot of issues people have.
3. He doesn't believe in topical steroid addiction - he says that they don't absorb enough into the skin to create problems internally. (I guess he doesn't know that steroids on the face have a 7% absorption rate, eyelids 30%, armpits 4%, genitals 30%, most everywhere else 1%). Over time of application, the amount these drugs get absorbed is crazy... Also, if bacteria can enter the bloodstream through a cut or sore and create chaos in your body, then why wouldn't a potent drug be able to do the same??

We will go through with the procedures, because we want to make sure there isn't anything we are missing. And if they do find something, it could help us work that much harder toward Keegan's end goal of complete health.
Doc said that it could be a few things... bacteria overgrown on the digestive tract, an "allergic" digestive tract (like people have allergy of the lungs or allergy of the skin - he could have allergy of the gut), or it could be a  malabsorption disorder or some sort. Doc also mention SIBO (small intestinal bacteria overgrowth), which he said there's a test for (breath test) but Keegan is too young to do the test on as we wouldn't get accurate results. Antibiotics would be the treatment for that, so we'd just have to assume he has it and treat for it. We are not going that route yet...

Doc wants to test for celiac disease while he's in there, and he can only test if Keegan has gluten in his system - at least a cracker every day for 2 weeks. He hasn't eaten gluten in over a year. 4 days in a row of eating gluten, and his eczema is as bad as it was back in May - 2 months off topical steroids. Not good. So... we decided to screw testing for celiac. We want to focus on healing Keegan NOW. If he ever wants to eat gluten in the future with HEALTHY skin, we will deal with it at that point.

We recently saw an article for the 5 foods to avoid for eczema. Gluten, Dairy, Eggs, Corn, and Nightshades.
We already do 100% no dairy and eggs, and gluten except for those 4 days. We just recently have been feeding him corn and some nightshades (tomatoes, bell peppers and white potatoes). Well since seeing this article, we are going to be strict again. We have GOT to get his skin back under control... bye bye french fries, tater tots, corn chips, and tomato sauce! Until next time. ;)

Friday, February 28, 2014

Topical Steroid Withdrawal can cause internal infections!


It's been a busy couple of months from when I posted last... mid January, Keegan started complaining of pain in his left heel and favored it greatly when walking. The same thing happened back in April (during the worst his skin had gotten), and we got xrays and blood work back then, which basically showed nothing except a slight elevation in inflammation markers and white blood cell count (which could have also been elevated due to his bad eczema). 

Over the course of a week, it went from slightly complaining about it, to not being able to function unless he had ibuprofen. He started waking up in the middle of the night screaming from the pain. We took him to his pediatrician, who referred us to the ER for immediate xrays and bloodwork. Bloodwork showed the same inflammation markers that were slightly elevated and elevated white blood cell count. Xray showed a dark spot that basically meant missing bone, where some sort of growth was taking over. 

From there, we were referred to an orthopedist at Children's Hospital. They ordered an MRI (which has to be sedated with children). I had to stress to the doctors NO STEROIDS. Apparently it is routine to administer steroids during most surgical procedures to help breathing.

MRI showed a fluid filled section of most of his heal bone, and that his whole heal bone was completely irritated. Doctor said most likely it's not anything scary (like cancer), it is either an infection or a bone cyst. So.... off to surgery to biopsy it and figure out course of treatment.

Surgery determined it was an infection - they flushed out the area and we had to stay 2 nights in the hospital while he got antibiotics through an IV, and they determined the bacteria was a strain of staph. After released from the hospital, he needs 6 weeks of oral antibiotics and weekly blood draws to make sure the inflammation markers are going down, and that the meds are messing with his organs in a bad way.

He was in a cast for 2 weeks and in a boot for 4 weeks after that... it will take at least 8 weeks for the heel bone to grow back in. We are at the 4 week mark post-op right now.

I am even more pissed at the doctors who over prescribed topical steroids to my son. They robbed him of a "normal" childhood for the past 3 years. There is no doubt in my mind that this bone infection was caused from topical steroid addiction / withdrawal. Staph is a common bacteria on the skin, and from all the scratching and making his skin open and raw from withdrawing, this caused the bacteria to enter his bloodstream and then get into the bone. I'm so over it.

Oh yeah, and since being on antibiotics, he has not has ONE boil!!! And the ones he did have cleared up. This is a far cry from getting at least 2 ones each day and have as many as 15 at any given time, spread over his entire body. We are kicking this infection in the arse! 

Keegan's 1 year journey is tomorrow - I will update then with new pictures of his new and improved skin. :)



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!!!