Sunday, June 10, 2012

Sam's Visit to Georgia Health Sciences University

On Thursday I got a call from the nurse at our new pediatrician's office saying they were able to request a special favor and had an appointment for us the very next day with a prominent dermatologist at the Georgia Health Sciences University in Augusta.  We figured this was our best chance at talking to a specialist without having to wait until September, so Adam kindly set aside all of the surprise plans he had for my 30th birthday, and instead of spending the day celebrating we left at 8 am and drove two hours to the health center.

Honestly, the visit was what I would have expected from any dermatologist here in town. Dr. Davis was not able to shed any light on why Sam's skin might be so red, she just said that she saw dozens of atopic kids in there every week that look just like Sam.  I stressed that I did not want to use any more steroids, and she honored that and did not prescribe any. She did prescribe Elidel, a "steroid sparing cream" but  it does not have much research behind it and is blackboxed for kids under 2, and has plenty of negative reviews already around the web for having side-effects very similar to steroids.  I will not be filling that prescription.

I was a little aggravated that this derm did not seem to want to give straight answers to my questions. At one point I guess I became impatient enough that Adam became uneasy and left the room. Well, I must have asked a particular question 8 times and she kept changing the subject, I was a little frustrated.  I was making the point that Sam's eczema started out with scattered red patches with lots of healthy skin in between, and that over time the patches had become more numerous and closer together, until the past couple of months his entire arms and legs were of total red pigment with no healthy skin in between. I told her how I was worried we had been over-prescribed the steroid creams and oral steroids, and expressed concern that perhaps they were the reason for the worsening rash and redness.  She said something like "Oh, I would never prescribe oral steroids, only as a last resort"   or "I would never prescribe Triamcinolone"  which is what we had used. So I pressed "And why wouldn't you? There must be a reason you wouldn't prescribe it. What side effects would you be worried about?" And that's when she kept changing the subject, never directly answering my question no matter how many ways I rephrased it.

She kept saying the redness was just the normal eczema.  Finally at the end, after Adam left, I got her to say that one of the side effects of topical steroid overuse and misuse would be adrenal suppression, a symptom of which can be red skin.  I told her I was worried about that and asked if we could have Sam tested for adrenal suppression. She said there is no point, if he is suffering from that I would know because he would be in great pain and misery, and he obviously was not, smiling and acting just fine in the room there with us.  I told her he'd only been off steroids completely less than a week and asked if it might take time for symptoms to show, she said she didn't think it was an issue.

When I asked about doing a skin culture to see what kind of bacteria or yeast might be colonizing the skin, she again said there was no point in doing that because the skin was not broken, and swabbing unbroken skin would turn up all kinds of bacteria that were just sitting on top and it would be anyone's guess as to which was causing infection. She also said that she wouldn't want to prescribe an antibiotic, but that if Sam does have an infection he might benefit from using an antibacterial soap like Cetaphil and also doing the dilute bleach baths.

At one point I told the doc of some of the efforts we were making at home to see improvement, I said something to the effect of "If we could just figure out the allergy or cause of Sam's eczema, I feel like we could eliminate it and..." she didn't even let me finish before laughing out loud! She said, there is no cause, that I would drive myself crazy pursuing that end and I needed to focus on making Sam as comfortable as I can until he grows out of it. I told her that was not so and that many moms had been successful finding a cause and eliminating their child's eczema. She said "Yes, that's only on the internet" ... whatever that means.

So, not the greatest visit but I'm glad we went because if we hadn't I would just be wondering if she could have helped in some significant way. Now I know, and I'm pretty convinced after all of my research and all the medical professionals I've talked to that they all feel pretty much the same way. I don't think we will find one who will tell us any different than this: Eczema and allergies are to be drugged and suppressed.

This is the regimen we were given:

1-  Bleach baths: once a week, 1/4 C bleach + half tub water
2- Cetaphil Antibacterial Soap daily
3 - Wet Wraps- as many nights a week as possible for moisture.  (this is wearing a pair of wet pjs under dry pjs)
4- Hydroxyzine (antihistamine) every 6 hours while flaring to help with itching.
5 - Doxepin 30 mins before bedtime to aid sleep.

I have already done 4 of the bleach baths since last week, which seems like a ton but next week will only be 3 and then twice a week, then once.  I hope we see improvement! So far, no difference in redness but I have noticed a huge difference in itchiness.  I can't say for sure its because of the bleach but this past week Sam has slept through the night every single night. Actually, that might also be thanks to his magic pajamas with the 'silver soothe' in them that is supposed to calm itching! I just remembered that. Gosh we love those pajamas and I wish they had a store in the USA!  Come to think of it, he has slept soundly every night he has had them on, except for one night when he wet through his diaper in the middle of the night. I had to remove the special mitted pjs because they were soaked, and put him in normal cotton top and pants, and the rest of that night he was whiny and itchy.  In fact I woke up 3 times to find him completely naked because he had pulled everything off his lower half to scratch.

I am still focusing a lot on the dust in our house. I am vacuuming like crazy, and keeping our linens and bedclothes washed in hot water at least weekly. I will probably wash Sam's sheets every few days.

I am not sure what more to do with detergents and soaps. Only because of the carpet, it is such a big obstacle in both dust reduction and switching to soaps.  Because if he is allergic to just dust or both dust and detergent, either way it is bound to have a huge stubborn amount of both that is constantly being picked up and spread to other areas of the house. We had our downstairs carpet replaced a few weeks ago, and Adam said that when they lifted the old carpet up there was at least 20 gallons of dust underneath. Ick. Our landlord was kind enough to replace our downstairs carpet but said he will not do the upstairs while we are living here. He did offer to have it cleaned for us, but I've already talked to the carpet cleaner he uses and they would only use harsh detergents, so I don't want to do that.  We cannot remove the upstairs carpet because there is no usable, livable flooring underneath. Just very raw wood with lots of tacks and staples.   I feel like placing any other carpet or floor covering on top of our old carpet would just trap the dust mites in a moist environment and cause more problems.

One day we will have an allergen-free home with all wood floors and leather furniture!! I dream of this!! And by that time, Sam really will have outgrown all his allergies. ;)

2 comments:

  1. That stinks when the best dermatolgist in town has nothing to offer. Sorry. We continue to pray for you guys and hope something will fall into place soon and you'll start seeing improvement. Jordan prays that Sammy will sleep well every night. :) Love ya!

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  2. My son had bloody eczema on his face and more that covered his stomach and back. No matter what we did (even removing egg from my diet and his - food allergy testing showed he was allergic), it did not clear up until we got out of our house. We had mold under our house (and probably in it), cat dander, dust, etc. We moved to a house with mostly wood/laminate flooring (got permission from the landlord to remove the carpet in his room). We got rid of the cats, all down products, our sofa (found a leather one on Craigslist), rugs, pillows, etc. We weren't at our new home for more than two months before he started showing significant healing. He still has some breakouts, but nothing compared to what it used to be. Good luck; it can be a hard road.

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