My family is perfectly imperfect and not a day goes by without humour, tears or tantrums. Blogging is the modern version of keeping a diary so feel free to read along while I share the good the bad and the ugly aspects of being me!

Monday, 27 August 2012

A Bunch Of Zebras



As the mother of four boys whom all have different medical needs I have dealt with my fair share of doctors over the years.
Some are personable while others are more reserved, some have delivered good news while others have given not so great news.
We have been given hugs and reassurance from doctors and on more then one occasion we have had a doctor run from the room in tears but never in my life have I ever..... ever had a doctor that has infuriated me the way that the doctor did today.
Today was Maxwell's check up with the GI clinic about his stomach troubles, we have been seeing Dr B on an outpatient basis since Christmas when we met during Max's hospital stay.
Dr B was the doctor that sent us to see the allergist who discovered Max's heart condition.
After asking how Max was doing I told him that the stomach issues were getting worse, Max was still dealing with daily bouts of vomiting, he gets frequent stomach aches, his bowel movements are still lime green and recently on occasion its been foamy.... as if he had eaten soap and pooped it out.
Hmm..... he replied, his blood work tested negative for celiac but its been known to be wrong, it sounds a lot like celiac disease and we've been thinking that for a long time.
Yes! I said - my mom radar has been blaring in my head for months now regarding the celiac possibility.
Moments later we are talking about massive doses of antibiotics and scheduling a scope for a biopsy, this doctor has apparently forgotten that he already did one.
When I let him know that one had been done already he quickly said "oh well then it cant possibly be celiac" and dismissed the concept completely. When I asked about whether it was worth maybe trying a gluten elimination diet to see if it helped at all he said "well you're the mother......" - ugh asshat! I explained that I had read that many people can be gluten sensitive and have severe reactions but not actually have celiac disease and he simply said "thats unlikely"
We discussed that he had done "every test" and aside from the lactase deficiency and "twistier than most" intestines everything appeared fine.
Now I am frustrated and promptly pulled up a picture from my iphone displaying an up close and personal image of the contents of a Walmart toilet and asked if THAT looked normal to him.
My kid is sick.... any idiot can see that, he's not my first, he's my fourth and I know that being in pain and evacuating your insides from both ends all the time is NOT normal.... no matter what the tests say.
He then decides to listen to Maxwell's heart and informs me that he cant hear the murmur . By this point my smart mouth has surfaced and I say "and yet theres a big hole in it".
He talks about how good it is that Max has gained one pound as if its a problem solved and seemed annoyed when I said no doubt from the 5 cans of pediasure a day.
At this point he said "clearly you need some reassurance from a fresh set of eyes because I've done all the tests and everything is alright. You're obviously not convinced and I'm out of ideas so we'll make the referral to Sick Kids since you'll already be there for cardiology but dont expect to hear from them soon because I've tested for everything".
His attitude made me feel like some first time neurotic mother who is suffering from munchausen syndrome and I am not impressed. The last time that I checked GOD was not spelled d-o-c-t-o-r
I am not a doctor but I know when something is not right..... they didnt listen when I was pregnant and I almost died, they didnt listen when I knew something was wrong with Nick and he almost died, now I am being dismissed again and I have had it, being a mother doesnt make you nuts, the majority of us want our kids to be healthy and we dont like spending ages in the hospital or millions on ridiculous parking fees - there is clearly something that he is missing. I think that claiming that he tested for "everything" is stretching it - he tested for the obvious things - if history has taught me anything its that with me and my kids check for the random and there will lie the answer.
As they say.... sometimes when you hear hoof steps dont check for horses look for zebras.

3 comments:

  1. Ugh. I'm so sorry, Cassandra. I have a special needs child as well and I just wanted to lend you support and love. I'll read the rest of the posts, If this is ok with you, I'll share it with some of my peeps at Bloorview.

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  2. Take the referral and get the heck out of dodge! This guy ain't worth your trouble. You've certainly found a handful of amazing doctors who have been able to help along the way. Surely there has to be another one who can help with this GI nonsense. Don't ever doubt yourself, you've rarely if ever been wrong. Good Luck.

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  3. Honestly, if you feel in your gut that eliminating gluten from his diet might help, it's definitely worth a try.
    As much as I do respect doctors, I find the best...the very best are downtown Toronto and will take the time to get to the root of the problem. While I'm sure there are some craptacular doctors downtown as well - there is a bigger opportunity to get someone great...and that is what you guys deserve.

    Always always follow your gut.

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