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turning medical procedures down

Forum: Children with Special Needs


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November 9th, 2011, 04:53 PM
Ditzzy's Avatar Stupid Lamb;)
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Can you say "No" to the doctor? Have you? What have you turned down?

Thank you, tasha_mae, for my siggy!
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November 10th, 2011, 11:44 AM
C&K'sMama's Avatar Platinum Supermommy
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Yes I can and I have. These are 3 that spring to mind.

endoscope - I said no because it was to find a cause of her chronic constipation. They said that even if we found a cause, there was a good chance that we could either not cure it or we it would be surgical. I was not willing to do surgery on my baby for a problem that was fixed by miralax. it's a very invasive test for us to have it and not get usable answers.

baruim swallow study- I said no because it was to look for signs of heart burn. They had put her on heartburn meds shortly before and she had begun doing very well so I didn't feel that we needed to do anything more.

leg muscle biopsy - I said no because they were looking for a very specific problem that couldn't be fixed or treated. I was not willing to let them stick a large needle into my baby and remove muscle tissue just so they could say "ahh, this is the problem".

"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
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November 10th, 2011, 12:06 PM
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I haven't. I would if it came up but so far we haven't had any rediculous or un-needed suggestions. One doctor suggested growth hormone studies but said that was up to me. We opted out mostly because it was crazy expensive, insurance wouldn't cover it and it is HIGHLY unlikely and only addressed a small portion of Danny's issues...as in 1 issue that we weren't even worried about.

I have pushed doctors (and often switched doctors) when they say no and something is obviously not right.
The first GI we went to did a ph probe, checked its placement by having Danny drink apple juice (DUMB!!!!) and said it was 100% normal. He vomitted 15 times (that I saw) in the 24 hours it was in.
The 2nd GI, said the ph probe was 100% abnormal (same one) and did some things to confirm what the issue was. Treated the reflux symptoms and sent us for allergy testing. He did really well until Danny started losing weight, and kept losing weight. He was getting 3000 calories per day, losing weight, had 6 diarrhea diapers per day (about 18 months old) and the doc said don't change anything, come back in 2 months for a check up.
3rd GI-Did wonderful. Found the enzyme deficiencies and started Danny on enzymes. Danny grew well for a while then flat-lined again. He did really well until this past March. Danny literally went from eating 2500-3000 calories per day until Saturday night, woke up Sunday and refused to eat anything...all day. Monday, same thing. Tues-Friday, 3-5 bites all day. Saturday-1 month later, he was getting between 500-800 calories and losing weight. He was just sitting around, lethargic, no energy, sometimes he wouldn't even walk around. He is usually a ball of energy that you can't control. I asked the GI point blank after several discussions if he would do anything if it got to the point that Danny couldn't even play. If he had no energy at all and just layed around all day (literally) would he put an NG tube in at least to get him energy and hopefully spark him to eat again. His reply? "I won't do anything as long as he is still on the growth charts." So as long as he is above the 3% (he was at the 5% but had stabilized there with the little he did eat) he wouldn't do anything. He wouldn't find out why he stopped eating, he wouldn't find out why he said his tummy hurt, NOTHING!
So...4th GI-She ordered a scope, stool tests, blood work, etc. (The 3rd Gi had done scopes before and they had been normal so he refused to do another one...he had just had one in December but obviously something had changed.) This scope showed ulcers, bile reflux, gastritis, esophagitis, and mild-moderate reflux. We did allergy testing again to see if we could find any new triggers to eliminate and we found 3. We eliminated those and he did well for a while. Then the severe belly pain was back. We schedule a scope, he gets sick,we reschedule, we see the nutritionist and his GI is leaving the state. Her last day is Dec 15th. So now we have to find a new GI who has a LOT to live up to. This one has been amazing. :/ It really stinks when you find one and then they leave...

Thanks .:Shortcake:. for my GREAT siggy.

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November 11th, 2011, 01:22 PM
mamma_anna's Avatar Mega Super Mommy
Join Date: Feb 2011
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We haven't said no to any proceedures yet but we've turned down a couple of medications. One was an appetite stimulant and the other was a sleeping aid. I don't remember the names of them.

We have delayed some proceedures. The botox treatment was one. We could have done it a year ago but I put it off. We also delayed getting her back into speech therapy until recently because she was doing CBT last year and it just wasn't possible for us to manage going to 4 different therapists multiple times a week.

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November 11th, 2011, 02:28 PM
Ditzzy's Avatar Stupid Lamb;)
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As of right now I'm turning down all invasive testing. I said no to the liver biopsy and a few other big invasive testing procedures.

Thank you, tasha_mae, for my siggy!
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