Trent’s Skin

Tough Dudes Cry

After yesterdays F%#k Allergies post, I have received MANY emails requesting I keep everyone up to date with Trent’s skin as it seems a lot people are dealing with issues like this and I am not the only one who feels completely lost and helpless. I am tagging these posts Trent’s Skin so they are easily searchable.

Also, from my post being re pinned/tweeted/liked I was able to gather a TON of information and I also discovered I have another family member across the United States who has the same problems with her son. So, really, thank you so much to everyone who helped get the word out and gave me suggestions and encouragement. I chose to live a very isolated lifestyle and sometimes I forget there are people out there who actually do care, even if they have never met us before.

So, on to Trent’s appointment yesterday.  His doctor did decide to do a skin lesion biopsy because something is clearly wrong. I was very adamant about Trent not being put on steroids because now we have a 3 yr medical history of what they don’t do for him. I am refusing being told this will just “go away” because it won’t. Thankfully, my doctor is absolutely ready to give us whatever we need. Trent was prescribed an antibiotic and while we had planned a biopsy, it was decided to send us to a dermatologist for a second opinion. I was irritated at this because I am impatient, but a second opinion is needed to decide what type of biopsy will be most beneficial. They don’t want to put Trent through the pain and not get it right the first time.

As one can imagine, Trent is scared shitless. He tries so hard to be brave but you can just see him melt. The more and more we talked about what a biopsy is and why we need to do it his skin got red and he started scratching and he just shut down.

Trent: “Today, when I am scared I decided to just be quiet and it will go away.”

Me: “You can scream. You can cry. You can do whatever you want.”

Trent: “I just wish this wasn’t me.”

My heart breaks and I start crying. Playing it off that crying is cool and totally not embarrassing. I tell him how once I cried when I got a tattoo. His eyes get all wide. The thing with Trent is that he cries all the time. It is when he doesn’t cry that we have a problem. When he is too afraid to cry because he feels completely out of control and this, his tears, he can control. So I nudge him to just let loose and we watch our faces in the mirror across the room. We both sit there crying and a nurse knocks on the door. She looks in, feels awkward, and just sort of leaves.

Me: “Dude! Did you see that? Our toughness was so tough it scared the nurse away!”

My son just giggled and smooshed me. I promised him Legos after this shitty doctor visit.

The car ride home was quiet, he collected his thoughts and when we got to Walmart to pick up his medicine and new Lego set, he had a breakdown in the toy isle and cried about whether he liked BatMan or Dinosaurs more. THIS was a relief. He needed to get it out and if he felt more comfortable crying about toy loyalties than trying to wrap his head around everything, by all means, go on and cry your face off little boy.

And then he was fine. And he picked Batman.

We have a dermatologist appointment in a couple of weeks. During this time waiting I am going to be experimenting with different skin relief formulas for Trent since nothing topical was prescribed. I need more information on what does and doesn’t help him. One big thing I learned at our visit was that it is immensly beneficial if you can have a conversation and not just answer questions. I knew why the doctor was looking in between Trent’s fingers and why he asked he what he sleeps in. I was even slapped on the knee and told how impressive it was that I had educated myself on so many possibilities, from fleas to copper allergies to shitty luck.

I will keep everyone posted on what we are concocting and trying. Our prime directive is to stop the weeping and oozing of the new skin eruptions while keeping the dried out scabs and eczema from itching. Because such large areas of his body (like the entire thing…) are being inflicted, I am making “natural” a priority. Especially since if and when we do find something that works, it has to be considered there will be long term usage.

Today I am asking, what has and has not worked for suffers of anything from sunburns to extreme dry skin to healing wounds? Our skin system is giant and no amount of googling can answer all of my questions and right now I am looking for ideas.

Much love to everyone and seriously, thank you so much for all of your kind words.
Yours, Kylee Lane
 

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F%#k Allergies

To say my son has problematic skin is an understatement.

Trent's Skin 3/6/2012

3/6/12 This is what his entire body looks like.

Since he was a bitty baby his skin has always broken out in bleeding sores that itch and burn him. There never was a time he wouldn’t wake up with blood on the bars of his crib or scream in pain because his socks were stuck to his sores on his feet. He always itches, he always hurts. That is just how it has always been.

We started taking him to Doctors when he was around six months old specifically to find out what was wrong with his skin.

Dr: “Eczema. Here. Use this cream.”

Me: “But, um, it has steroids in it? Should I be covering my baby in this?”

Dr: “It will go away and you won’t have to use it again.”

Me: “WHY is this happening? I need to treat the problem, not the side effect of.”

Dr: “There is nothing else you can do.”

Now repeat this conversation for the next seven years of my sons life…steroidal creams, safe to say, they don’t do a damn thing.

Early 2009, we met a very open minded doctor. For the first time ever, it had been suggested that Trent might have severe allergy issues. (You can revisit that here.)

Trent and Ocelot

"Can I please just hug him one last time?"

So. We have a little boy who is allergic to dust mites, cats and mold with allergy induced asthma. We are told to buy a house with no carpet and no forced air heating or cooling systems. Get rid of our cats and buy a HEPA bagged vacuum and clean daily. No vertical blinds and everything in the home has to be able to be removable and washable.

Jump from 2009 to now. We spend all of our savings/money/everything to buy a house, a much older brick building with no carpet and no forced air. This house has a steam heat system. This is perfect for his mite allergy…however, now his skin is multitudes worse. We are told steam heat and no forced-air is perfect for soothing Eczema and not blowing allergens all over the place. However, my guess, not so perfect for mold.

There is no visible mold growth anywhere at all. Most houses in Iowa have mold. It is very humid here in the summer, reaching 90% humidity some days. Buying a cheaper wooden home would have a far higher mold potential verses a brick house built by one of the wealthiest people in our region, though both choices are about 100 years old. Buying a newer home has such a high rate of chemical uses just being built that Trent’s asthma can’t handle it. He has extreme chemical sensitivities (Yes, this is why I make soap and things. So he can breathe and so I am not packing more chemicals onto his open sores.)

Trent Reading

"Mom! Technology! I can read anything, anywhere?!"

Honestly, a new house would have been the best choice, but we couldn’t afford having a brand new home built with a steam heat system. I am, for the first time ever, realizing the amount of guilt this causes me.

Today I sit here with a colossal mortgage, a giant brick house and I should have a healthy son. I don’t and I am doubting every decision I have made in the last three years. I feel massively overwhelmed because my son can’t even go to school today because he is covered in open sores. He has never had a appetite and he is smaller than everyone else. I feel like this is all my fault because I didn’t pick the right house for him. I can’t fix him. His skin, for the first time ever, was perfect while we lived in a roach infested apartment in Las Vegas. We should have just staid there.

Oh the joys of parenthood.

Has anyone else ever dealt with this type of skin condition? Anything. Often my son asks, “When will this not hurt and just go away?” and I have nothing to say to him. We go to another specialist today and I am requesting a skin lesion biopsy. Skin cancer runs in my family and I honestly just don’t know what else to do. What I do know is that if another doctor prescribes Trent steroids and tells us it will just go away, my next post is going to be about how a spent the night in jail for assaulting a physician.

Yours, Kylee Lane

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Allergen Specialist

Today we took Trent to an Allergen Specialist. He had to have the dreaded “scratch test’. Pretty much they stuck him with 32 needles in a matter of 10 seconds. He didn’t even cry. I had told him before the appointment what was gonna go down so that he knew. I am not one for painful surprises when it comes to my kids. If something is going to hurt, I tell them. I feel that is one of the first steps to the vital parent/child trust system.

The results were not what we wanted, but in all honesty, what we needed. Trent is severely allergic to dust mites, cats and mold. Here is a enpicture of his test results:

It’s pretty simple, they poke you with needles that have allergens on them, if an area swells, it shows what you are allergic to. A bad allergy swells to the size of about the tip of a Q-tip. So as you can see, we have a pretty serious issue. (A good home has to be found for our cats, as this is stressing my husband out tremendously…) On the plus side, he has no food allergies…

If you know my little boy, you know that he has been covered in horrible itchy, swollen, bloody reds spots the majority of his life, with no doctor being able to tell me what was wrong. Well, Trent starts school this Fall and there is no way I would ever send my child to school covered in open wounds. Do you know the kind of germs they are packing in public schools?! Gross.

In a nut shell, the allergens (dust mites, cats, mold spores) cause a reaction which has been causing the swelling, which causes the itching & breathing problems. Add to all of that, a nasty and life long case of severe eczema and now asthma and it equals one very uncomfortable little boy. As if it couldn’t be any worse, the sores on his legs are infected. Multiply that by no insurance and you have two very concerned parents… All of our savings have now gone into treating our son. Guess that’s what we were saving for, right? I am just happy we had money set aside so we could do something for him. He is going to be on five medications by next week and we are crossing our fingers for improvements within a month or two.

Living in the humid Midwest, in a house over a hundred years old, and you see the giant amount of work ahead of us in regards to making this house livable for Trent. Moving is no longer an option, financially. Knowing that our home is what has caused our son so much pain and suffering his entire life, is a horrible thing to deal with as a parent.

I know this post is somewhat of a downer, but my main point is, I am grateful that there is something I can do to help my child. No matter how bad a situation seems, no matter how stressful or financially draining, I have the power to help my son. I can not even put into words how grateful I am for that. ♥

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