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
 

This entry was posted in All Entries, Colorful.Kylee, The Lanes and tagged , . Bookmark the permalink.

4 Responses to Tough Dudes Cry

  1. Vanessa says:

    First understand, I did not begin to learn the benefits of natural until recently. So while I was fighting the worst of this with my son, it was mostly over the counter stuff. Banana Boat has an after sun treatment, its a yellow lotion not the gel. It is made for sun burns that blister, so it doesn’t burn! This was the most often used treatment that seemed to sooth him enough that he could actually sleep. I wished I had know more about natural stuff, but this did help a ton.
    We did meet… years ago! It was 1993 and I was in Vegas for my dad’s funeral. My mom and I stopped by Joe’s to eat and relax before we made the drive home. I played with you and Beau, and I remember one more that was in a play pen at the time. I randomly remember meeting cousins on my mom’s side a few times before that also, but no idea who it was.

  2. Katie says:

    I would suggest looking at the LUSH website for ideas and maybe even talking to them.
    They a have a million different lotions and creams for everything and they use all natural ingredients. It’s expensive to buy their stuff, but I’m really suggesting it because they have a list of the ingredients they put in every one of their products. Each product is linkable to an ingredient page where you can read about the benefits of the ingredient, where it comes from, etc. And I’m sure a lot of the stuff they use in their products is stuff YOU would be able to find online easy enough.
    I also suggest it because there’s a lot of comments on products where people discuss any special uses for the products and how they help. At the very least, poking around could give you some ideas.
    Personally, I use their Ultrabalm (http://www.lushusa.com/Ultrabalm/03078,en_US,pd.html?start=14&cgid=body-lotions) because I have really weird dry spots of skin that itch like CRAZY and using this when I get them clears them up in 1 or 2 days. Actually, I use it on everything. I put it on hangnails, small cuts, burns, whatever. I think it’s just magic potion.
    I also use their Fresh Farmacy soap (http://www.lushusa.com/Fresh-Farmacy/00077,en_US,pd.html?start=8&cgid=cleansers) sometimes for stuff like sunburn or irritated skin and it really helps a lot.

  3. Laura Botos says:

    That is so sad. My daughter was recently diagnosed with eczema and i am kind of wondering what we are going to be in for with that, though i have not seen many cases as bad as this. This might be a total long shot, as im sure you have run the gamut on trying stuff, but have you tried a hazelwood necklace? This was recently recommended to me by a friend who uses them for two of her children, one for eczema and one for acid reflux. I hope you find something that works for him.

  4. psal says:

    When you have a frustrating medical situation, at some point it may make sense to ante up the $$ and go to your regional academic medical center of excellence. You want the one that has the doctor(s) who actually research whatever is that seems to be wrong and who teach other specialists about it. The doctor who teaches the other specialists about precisely what your kid has is The One.

    We all like to think all doctors are basically equivalent, and for basic things that assumption works out pretty well. I don’t think there is much advantage to going to serious academic medical centers for ordinary things. Among other things, they usually favor more testing and more intervention, which sometimes is counterproductive. When you have something weird/difficult/unusual that MUST be addressed somehow though, that mindset works in your favor; they will usually be willing to try things that other docs won’t try and haven’t thought to try. It doesn’t mean regular docs are bad, they’re just regular. A special situation calls for special help.

    The goal then is to figure out who the research honcho is regionally for pediatric allergic/autoimmune skin conditions–not sure whether you would be better off in dermatology or allergy but probably start pediatric derm and see where it leads. Honcho-doctor-professor will have seen unusual conditions more often, they will usually have more appointment time to do a full assessment, and they will approach it as someone who is academically curious about the problem rather than as a busy practitioner who wants to give you the Usual Standard Thing and then move along with the day. This is not to say you won’t sometimes be disappointed, but if the first one is a dud try again; odds are in your favor if you try 2-3 you’ll find one with some ideas who can work with you effectively. If whomever you see doesn’t know, ask if they know someone else who might have some experience with the issue.

    If you haven’t done the academic med center thing before, the way it goes is typically you would be seen first by the medical student/resident/whatever but then you get to see the prof. Just observing the difference between the two is interesting. When I went, student doc said what the usual physicians said (they didn’t really know, the things it resembled didn’t make sense, hmmm, puzzled). Prof however knew what it was, precisely, and that was worth the price of the visit. In my case it turned out to be non-dangerous and indeed it did go away on its own (18 months later, sigh) but it was a relief to hear someone who actually knew what it was and knew that it was non-dangerous. I’ve seen versions of this play out with family members; it’s amazing how different one doctor can be from another.

    So…where to start? One option is to start with your nearest most highly rated medical school hospital. Perhaps you will have a good experience there. Regardless, when you ask them who the other national experts are (pander to ego a bit; it helps!) who do research on this subject, they will tend to know; professors know who the others in their subfields are. Or, pick the doctor you’ve liked best out of your regular medical center visits and ask who they would recommend for an expert second opinion; state willingness to travel out of state (not because you want to, because you might need to).

    People often go to a lot of doctors before they ante up and head off in the car/bus/plane to the big ol’ academic hospital…don’t know how well insurance is going to cover it, the travel and stay (if they need multiple days of testing) is a pain. For my money though, it’s much more efficient to spend triple and see someone who knows than to see 5 people who don’t, because that wears you out too and at the end you still don’t know what you need to know. Maybe make a family vacation out of it (Boston…Chicago…?)

    Having a sick child you can’t figure out how to help has to be one of the most frustrating and helpless experiences of motherhood. Whatever this is, it is not your fault! No one understands why the rates of eczema/allergies/etc. are increasing, just like they don’t know why autism rates are skyrocketing; perhaps something in our cultural environment is amiss but darned if we know what it is. Many options have been posited and discarded thus far, or they’re only true 15% of the time, etc. It’s a problem for the entire western world and it’s much, much bigger than you are. You are doing the best you can. If someone were to tell you “this is for sure what it is and this is for sure what you have to do,” I’m sure you’d do it. No one can ask for more. Your child is experiencing your persistence and your care and is learning from that too.

Leave a Reply

UA-23027196-3