I have an issue with majority of the doctors that Bodie sees. We’ve been through 5 allergists. I refuse to have a doctor yell at me or lecture me. Sometimes I wonder if it’s me?
Bodie was between 12 & 18 months. I was pregnant with Oskar and we had spent two hours sitting in a room waiting on a doctor. We had visited with two med students but not the doctor. The doctor finally comes in and does not ask a single question. He immediately tells me I’ve created a wheat allergy for my son because I eliminated it from his diet for 4 weeks. Did I eliminate it just for fun? No. I explained to him a previous doctor told us to eliminate it. He then bashed that doctor and laid into me again about creating an allergy. He talked down to me the entire appointment. I did not stay with this allergist. He wouldn’t let me explain things and he himself didn’t want to explain things. He was an A**hole. Side note: Oskar has gone weeks without egg or dairy because we don’t always serve it. He’s gone months without peanuts. Did this create an allergy? No. He grew out of a milk allergy by age 3 and hasn’t had any issues since.
Our next allergist got upset that our dermatologist ordered blood testing for an allergy panel. He called me to tell me she had no business doing this. He kept asking me why I listened to her? ‘She’s not an allergist?’ ‘Why did you do the bloodwork?’ He went on and on and I finally told him I don’t need to be concerned with his dislike for a dermatologist. We went for a skin condition that Bodie has and she ordered all kinds of blood work. He said he needs to treat the skin condition to which I asked ‘are you a dermatologist?’ He said no and then I said ‘we are done here.’ He was an A**hole. The skin condition Bodie has does not have anything to do with his food allergies.
Then we had the doctor that lectured me like I was an idiot every single time we saw her. We spent almost a year a half with her and I’m pretty sure the main reason we did was because I started to think the issue was me. We were already on our fourth allergist. This doctor demanded Bodie never go outside as soon as he starts a cold. He shouldn’t be in school the entire duration of a cold. And he should never ever run. At one point she yelled at Oskar who was all of 2 and told him, ‘don’t make your brother run, you need to stop making him run.’ I wish I was exaggerating. She accused me at every appointment of not following the asthma action plan. I told her every time that I was the parent who followed the rules. She didn’t believe me and at one appointment yelled at me. This was when we left her. She was an A**hole. Turns out she misdiagnosed Bodie. He didn’t have asthma.
It was at this time we found the most amazing allergist. He listened. He was empathetic. He was the nicest doctor I had ever met. There was zero ego in the room. Did I mention he listened? He answered the questions I had and respected the fact that I did my research and I knew a lot. He was not an A**hole. Not even a little bit. I see him myself and it’s my favorite doctor’s appointment. This doctor realized Bodie’s issue was GI and not asthma. It was then we ended up at Cardinal Glennon with a GI doc. She tried to work with this allergist but his office wasn’t good at communicating with her and things were not happening.
Currently, we are with an allergist that specializes in EoE. During our first appointment with him he bragged about how all our previous allergists trained under him. This made me a little nervous. Let me paint the picture of how our visit starts….
First we wait for at least 45-90 minutes. He finally comes in, grabs some hand sanitizer, barely rubs it in and says hi to Bodie and holds out his wet hand and asks for a high five. And it’s a dead fish high five. Not an enthusiastic, ‘HOW YA DOIN?’ kind of high five. Bodie hesitantly gives the high five and that is all the interaction between Bodie and the doctor. There is literally not a ‘how are you today?’ Bodie is 5 now. The doctor should be interacting with him. Am I wrong? Shouldn’t the doctor ask him the questions of how he’s feeling? If he’s throwing up? Give the child a chance to talk first before talking to the parent? I understand I’ve been doing most of the talking for him since this has all been going since he was a baby but why can’t the doc get to know Bodie? This doctor isn’t really into checking blood levels to see if Bodie could tolerate egg or dairy. I try to ask why and he just shuts it down. Again, we have an A**hole.
Between Bodie’s EoE and food allergies there is a good chance we will see doctors for years to come. This may be his life. Is it too much ask for doctors to engage with the kids? Get to know the family. Find out our lifestyle and realize we too are intelligent people. I am by no means an expert but is it so wrong if I politely challenge your directions? I’m never rude because I want to learn and understand more. I want to know more details of why they are making this decision and recommending this path.
Here’s the other thing. If I don’t advocate for my child then who will? I have an instinct that hasn’t failed me once on this journey. The allergist that said we should have never eliminated wheat…. I told him that I had seen a change in Bodie since taking it out. He was sleeping better, he was more active and less fussy. He insisted I was wrong and to give it to him. Turns out wheat was bothering him but not in the traditional food allergy way. Wheat is the major contributor for EoE. I asked the allergist that wrongly diagnosed asthma if there could be something else going on. Are we missing something? I asked this over and over. She told me it was nothing else and I needed to do a better job following the protocol. Once again, my instinct was right. All along it was EoE that was bothering him.
We’ve spent the last 5 years seeing almost every kind of doctor. His GI doctor is great. I ask her lots of questions and she’s never threatened. We saw a lung doctor last year and he too was great and SO enthusiastic when meeting Bodie for the fist time. So I know good doctors. Our pediatrician is AMAZING and has helped me battle this fight. But why do we have to battle it? I’m not asking for a friendship with a doc but I am asking that you get to know us. Especially if we have to see you every 3-6 months for years to come. Is it me? Or the doc?
Here’s my wish list for an allergist:
- Willing to answer questions in a patient manner
- Willing to try new things.
This doesn’t seem like a tall order when I type it all out. Bodie appreciates all the details and all the logic. He wants to know everything that’s going to happen to him and everything that the doctor is going to do. He’s more willing when the doctor explains it all. He’s also more willing to talk to a doctor when the doctor explains it all to him. I would imagine most kids are this way. It reminds me of what Mr. Roger’s did in his show. He explained the big things that were happening in the world in a way that children could comprehend. Would it be so hard for doctors to explain things to a child?