*itch Session: Frustrated and Deflated From the Dermatologist
Last updated: October 2023
The whole point in seeing a dermatologist is so they can help you with your skin, right? That wasn’t the case for us.
Harry sees his dermatologist every 4 months. We have done everything he told us to do to help Harry’s skin.
What has Harry's dermatologist told us to do?
He told us that since Harry is highly allergic to dust mites we had to get rid of everything that has material on it - including teddies, curtains, fabric lounge, carpet etc - so, we did it. We replaced everything that had material on it (which was so expensive).
I also had to do a lot of cleaning. Wash car seats every 8 weeks, vacuum and mop twice a day, wash every bedding once a week etc. He gave me a piece of paper with a whole list of what to wash and how long for. I did everything it said.
What else could I do to help Harry's eczema?
The next time I saw him I asked him what else could I do to help his skin get better. His response was, “You’re doing everything you should be.” Um, what!? I paid all this money to see the dermatologist to just tell me that. I left so frustrated and deflated. Harry’s skin is getting worse; something should be able to help.
Was the following appointment any better?
Another four months later we went back as, surprise, Harry's skin was getting worse again (which I didn’t think it could, but it did). I asked about other medicines that he could try as creams and eliminating things and places aren't working. He said, “Keep up the cleaning, and get a new car since the seats are fabric.” Again, WHAT?! After this appointment I left crying. This is so hard to maintain. Constant cleaning and washing to get rid of dust mites, applying creams 5 times a day, applying wet dressings. It is so physically exhausting. I was so frustrated that he couldn’t do anything to help. But I did what he said. We traded in our car to get one with leather seats.
What other treatment options does Harry have?
I began researching about other treatment options. I read a lot about immunosuppressants. So, another four months later at the next appointment I asked him about methotrexate and dupilimab. He said since Harry was only 2.5 years old (this was in 2021), he was too young for it. At that time in Australia, you had to be at least 12 years old. I told him Harry’s bad; he needs more than creams or steroid creams. These suggestions aren’t working we need something else. He said “Give yourself a pat on the back. You’re doing a good job.”
Why does it feel like he isn't even helping?
I was so mad, upset and frustrated after this appointment. I was again in tears. He’s not listening to me. He just keeps on telling me to get rid of this, buy that, clean this and clean that. I don’t have the time or money to maintain all of this. I literally had to sell our caravan in order to keep up with these requirements.
Am I getting a different doctor for Harry?
I went to my GP to get a referral to see a different dermatologist. We saw her. I told her everything that has happened. She said, “Harry has been suffering severely for way too long. I’m in contact with an immunologist and will see if we can get him on compassionate grounds for an immunosuppressant.” YAYYYY! Someone is listening to me.
How did he find out?
What I then found out was the person who is the head of the skin department here in Sydney was Harry’s first dermatologist. Dang it. I thought since he’d find out we were looking for a new doctor when he sees Harry’s name on the list, the right thing for me to do was to go back and see him to let him know personally.
How did he respond?
I told him we were looking for new care, and his shoulders dropped, his voice lowered, and he was mad. He told me to pick one dermatologist and stick with one. I told him since she’s going to help with immunosuppressants which Harry needs, we’ll go to her. I left that appointment feeling so bad and guilty. I thought I was doing the right thing by even telling him. He was going to find out anyway. That will teach me for trying to be nice.
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