More On Mainstream Medicine....
My response to Jeanne's comment on my previous post re: Charlie's endo pics became quite long. So I decided to turn the response into an actual post.
I wish there was a way to get our collective experiences more *out there*. It's one thing to share within *our community*, it resonates there, as so many of us have had the same experience.
But I really want to be able to reach the new moms out there who may be struggling with a 'high maintenance' baby. To those moms I want to say: "Don't buy this "Well, some babies just have colic for a while, or they are a bit more intense. They'll grow out of it" crap. Fire the doc that told you this, and find one that WILL pay attention to you and your child. I listened to the condescending *Well, I'm the MD, you're just a silly mommy* crap for waaay too long.
And guess who's paying the price??? Yup, Salamander is.. And I carry an enormous amount of guilt over that... And I will never forgive Salamander's first pedi as well as all the specialists at TWO well regarded children's hospitals for missing what they missed.
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It's really the unwillingness on the docs part to actually LISTEN to what the mom has to say that so pisses me off. Yes, a lot of us are sleep deprived and maybe a tad panicky.
But really wouldn't you be if your child did not sleep more than a few hours a nite for many, many years like Salamander did? And wouldn't you be if your child projectile vomited 4 times a day while barely eating a darn thing like Salamander did? And wouldn't you be if his vomit and diarrhea smelled like an animal died in his stomach and was rotting away?And wouldn't you be incredibly PISSED OFF if all of the above symptoms got so much better after making changes to your child's diet? Changes you were told bordered on *child abuse* as your child was barely eating to begin with (and really, WHY do you think the child was barely eating? Because it HURT to eat.. that's why!!!).
Sorry to be like this, but there are times I simply need to put to the ugly truth out there.
Docs, for Goodness Sake, PAY ATTENTION. Endless *toddler diarrhea* (if that's even a legit diagnosis) is NOT OK. Projectile vomiting is not *a behavior the child uses to express how upset he is over the fact that mom has a full time job*. Waking up in the nite screaming after having been asleep for only an hour several times a nite is not *just a phase that the child needs to grow out of, just let him/her scream it out*. These are all symptoms of a seriously messed up GI system!!!
Docs, please admit it when you don't know what is going on. We can handle you saying "We don't know, but let's think about what else we can look at." At least then you acknowledge that our concerns are legit. It's the condescending crap we can not and will not take. Just because you went to medical school for X years does NOT make you an expert on my child. Neither does a 5 - 10 minute, very rushed, doctor's visit.
While the boys current practitioners and I frequently disagree (and sometimes quite intensely) about the best treatment path for the boys, any disagreements originate from a great amount of care. And a lot of mutual respect. And an admittance on behalf of these practitioners that -I- AM the expert when it comes to my boys. PERIOD.
And as they say: "The proof is in the pudding." My entire neighborhood was wiped out this past winter with flu (despite vaccinations), serious respiratory infections, GI virusses that just went on for weeks, etc. Everybody was groaning and moaning about so much school time missed, work time missed, having to be couped up in the house....
And guess whose kids were hardly ill at all (except for a day here and there of the sniffles, and maybe one of two days of the pukeys)?
Yup, mine.
I have families in my neighborhood who's kids are at the doctor's for *mystery illnesses* once or twice a week!!! That used to be me. Now the boys see their pediatrician once a year, for school paperwork and just a general physical. They see their DAN doc once or twice a year. I have not had to take them to the ER in almost 2 years. I used to be in the ER once a month, if not more frequent than that.
Voodoo treatments? I think not. Common sense? I think yes...
4 Comments:
And the crowd roars!!!
I am going to post this on my site, if you don't mind!
Go for it!!! The more *circulation*, the larger the chance that it ends up with somebody who is struggling with what I was struggling with. And hopefully a 'light bulb' will go off and hopefully the affected child will get help at an earlier age than Salamander did.
And you know the really scary bit? Potatey was going down the exact same path. Different set of *outward* symptoms though (especially his neurological symptoms were so extremely subtle - mainly mood swing and slurred speech related.. and which 2 or 3 year old does NOT have mood swings or slurs his speech every once and a while..), so it took me a little to *catch on* (and I was only just learning about the extent of Salamander's problems).
If it wasn't for me taking charge of Salamander's treatment, if I had continued to believe that *doc knows best*, Potatey would have been in serious trouble too.
Just a few events: Potatey started developing asthma when he was about 6 months old (he was completely dairy free at that point, as he goes anaphylactic on dairy; but he WAS getting soy - which turned out to be just as bad for him). Docs recommendation? Let's put him on steriods (he was 6!!!! months old!!!!). Removal of soy wasn't even mentioned (I did that on my own; in fact, I switched Potatey to a hypo allergenic formula - and lo and behold, no more asthma).
Potatey had a spectacular adverse reaction to the Varicella vaccine which started approx 72 hours after getting the vaccine. Docs opinion? Not related, he just had a virus. A virus that made him act like he was becoming autistic? I think not.
Potatey was heading down the Ulcerative Colitis path by the time he was 3 (although he was mostly gluten free, he was still getting some. And he was consuming large quantities of corn based products). Docs opinion? What are you going to feed him if you completely eliminate gluten and pull corn as well. Funny thing, Potatey's growth was starting to get stunted. As soon as I made more dietary changes for him, he started growing like a weed.
Of course all of the above are just the 'delusions of a hysterical mom' and 'shear coincidence'.
Genetic component for my two boys? Absolutely. No doubt about it. But genetic susceptibility does NOT serious illness make. Triggers need to be activated BEFORE genetic susceptibilty becomes illness. This is well known in several diseases that have an autoimmune component. Why is this still such a 'farfetched' idea for some of the *autism* cases?
Getting off my soapbox now. My blood pressure is hitting dangerous levels.
I love it when you get on your soapbox.
P.S. MIL is coming to town today... will probably be offline for a few days until I get into a routine with her.
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