From age twelve months until about eighteen months, my Little had a terrible rash on his bum. This was no ordinary diaper rash — his bum was covered with an angry red rash that routinely bled when we wiped it, as gentle was we tried to be.    Over the course of his treatment, Little was variously diagnosed with anal strep; penicillin allergy; fungal infection; staph infection; and diaper dermatitis.  He was prescribed Azithromycin, Cefprozil, Nystatin, Vuzion, Fluconazole, Keflex, and Cavilon.  We tried Desitin, Vaseline, Culturelle, Neosporin, soaking in baking soda, hosing off his bum instead of wiping it, making our own wipes out of baby oil and baby shampoo, and letting him run around diaper-free as much as possible — no improvement. 

During this time, I asked over and over if maybe the problem was due to the food he was eating.  He had had no skin problems for his first year of life.  When he turned one, Little saw an allergist and was tested for nuts, milk and eggs because his big brother has a severe peanut allergy.  Little’s tests were all negative, so my concerns about his diet were dismissed without discussion.  Although we had of course given him solid food before twelve months, we definitely lifted the restrictions and gave him a normal diet after that. I suggested that perhaps it was not a true allergy, but maybe just an intolerance to the expanded diet or even just his skin reacting badly when it came into contact with the urine or feces, but again, I felt dismissed.

The first time we saw a local pediatric dermatologist, she took one look and said, “He has very sensitive skin.  Keep doing what you are doing.”  Oh, you mean the stuff that’s NOT WORKING?!  Her only advice was to potty train him early.  I now know that in France, they apparently start potty training at nine months, but in my house, I thought seventeen months was pretty early. 

(By the way, in case any of you have never had to take your child to see a pediatric dermatologist, please know that bookings are often made several months out due to volume.  Even with a sibling who was already a patient of this dermatologist and the fact that my son’s bum had been bleeding for months, I still had to wait over a month for the first visit.  The second visit was scheduled more quickly once I mentioned getting a second opinion at Yale.)

At the second visit, the dermatologist (already not my favorite person) had the gall to say several times that she’d seen much worse. In a nice way (it was nice in my head but in retrospect, I’m not sure how nicely it came out), I responded that I’m sure that she’d seen the worst cases but that WE HAVE NOT, and he’s our son. “As I told you before, he just has very sensitive skin.” Really? Then how come he didn’t have this problem until he starting eating solid foods? Could it be related to what he’s eating? Why isn’t anyone talking about that? Why doesn’t his skin react when I use soap or lotion or anything?  Once again, she said there was  nothing to be done except what we were already doing (which hadn’t worked for months) — keep him naked as much as possible; don’t wipe his bum, rinse it off; don’t use wipes, use wet washcloths; potty train him. Right, lady, why don’t you come to my house and do all this stuff day in and day out? Plan on never leaving the house, either. 

The pediatric dermatologist at Yale didn’t have anything new to offer except that we should try a new product called Cavilon.  You can probably guess that this didn’t work, either.  In fact, the Cavilon made Little’s bum so much worse the first time we applied it, we stopped immediately.  His entire bottom half turned bright red and got hot.  He couldn’t sit, he couldn’t walk, he didn’t even want me to hold him because I usually support him under his bottom.  All that day, I tried to get him to lie down or I carried him around sideways or in a sling, trying not to touch his bum.  My mister called Yale and spoke with the doctor, who agreed that we should stop the Cavilon (no shit, Sherlock) and advised us to go back to what we were doing before.  If one more person said this, I thought I was going to scream.

At Little’s regular eighteen month checkup, I was pretty blunt with our pediatrician about my frustration over the diaper rash that had lasted for six months. She said that Yale is #1 in the world for pediatric dermatology; they “wrote the book.” She was very effusive about them and said that if they were not concerned and were not suggesting more aggressive treatment, then she wasn’t concerned, either. She did seem to be more receptive to our concerns about his diet causing the problem, though, and agreed that we might want to try eliminating citrus and other acidic foods from his diet to see if it helps. At least someone was taking us seriously this time! I’d been asking about food all along and the other doctors had been blowing me off.  Again, it’s not that I think that he has a true food allergy. It’s logical, though, that acidic foods would wreak havoc on his super-sensitive skin. It’s the only explanation that makes sense, in fact, since this problem started after his first birthday, when we basically opened his diet wide open. Nothing else had helped, so the pediatrician figured it couldn’t hurt.

Little eats a TON of fruit and his favorites are strawberries and oranges, so we cut those out along with pineapple and anything else that seemed particularly acidic.  EUREKA!  It has now been three months and, although he’s had a few small flareups when we messed up his diet, Little’s bum has finally healed.  My little baby was in pain for a third of his young life and I am absolutely ecstatic that he’s been cured.  I know that this will continue to be a struggle until he’s potty trained, so we’ve been going gung ho on that lately.  The amazing thing is that my Little remained a happy, fun, great little boy, despite all this.  He’s such a doll.

Here’s the thing, though:  the medical establishment not only let me down, they disregarded the opinion of the one person who knows Little best, his mother.  Five doctors let this horrible condition go on for six months without suggesting this simple solution, or even entertaining the notion when I brought it up.  During this saga, I always felt on the defensive.  I prepared for each doctor appointment like I was going on a job interview:  I researched the doctors and the medicines.  I obtained copies of Little’s medical records, scanned them into my computer, and put them on my smartphone so I’d have them handy in case I needed to refer to them.  I took photos in between appointments and made sure these were incorporated into Little’s files on my phone so I could show them at the appointments.  I made a timeline of all his symptoms, visits, diagnoses and prescriptions just so I could keep them all straight.  In the end, all that mattered was my Mama Intuition.  To me, it wasn’t even intuition, but just plain logic. 

What do you think?  What are your expectations of the medical establishment?  Have you ever felt empowered to question your child’s doctor?  Do you have a handy way to keep track of your child’s medical records in case you have an emergency or need to visit numerous doctors or a specialist?  Do you ever feel disregarded by your pediatrician about your own child?

 

 

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