10/11: PICU Day 3
Today was a fairly uneventful day medically speaking. Leo had the usual regimen of antibiotics, antacid, decadron (which was 5 hours late once), anti-fungals, and the "Go Lightly" stuff that's supposed to clear-out his digestive tract. It gives him serious cramps/gas/pain, so he winds-up getting a pain killer or a mild sedative. On the other hand, he may have another infection, so a culture was drawn to see what grows.
The 12pm meeting among the doctors happened at 2pm. Unfortunately the specialists that needed to be there weren't. Drs. Kroin and Battle, a palliative care nurse, a care coordinator, and Clint from Clinical Ethics were present. We weren't sure exactly why Clint was there, but he left after 10 minutes anyway because he had to be somewhere else. In a nutshell, we realized that Leo really needs an oncologist to follow him. I told the doctors that we don't need an oncologist's treatment (i.e. chemo and radiation) or his personal opinions. But we do need his experience and knowledge, especially to anticipate problems and take measure to avoid them. We will be more than happy to discuss Leo's tumor treatment, but as long as that discussion centers on the facts of antineoplastons. Dr. Battle said she'd try to get someone for us as soon as possible and we believe she'll come through. She and Dr. Kroin have been there all along, continue to do so, and we can't thank them enough for at least trying to help and watch Leo.
Finally, Joe the PICU resident, explained last night why an endocrinologist isn't what we need. He said that endocrinologists are experts in the glands and systems that produce hormones, not the other systems that may be affected. So from that perspective, Leo is not in an adrenal crisis, which is why the endocrinologist has little to add. I wish someone had explained this to me early on so that I didn't have to waste so much time thinking, bitching, and complaining about this. Leo is now on 6mg of decadron, which will probably stay until he's back to being as normal as possible under the circumstances.
The 12pm meeting among the doctors happened at 2pm. Unfortunately the specialists that needed to be there weren't. Drs. Kroin and Battle, a palliative care nurse, a care coordinator, and Clint from Clinical Ethics were present. We weren't sure exactly why Clint was there, but he left after 10 minutes anyway because he had to be somewhere else. In a nutshell, we realized that Leo really needs an oncologist to follow him. I told the doctors that we don't need an oncologist's treatment (i.e. chemo and radiation) or his personal opinions. But we do need his experience and knowledge, especially to anticipate problems and take measure to avoid them. We will be more than happy to discuss Leo's tumor treatment, but as long as that discussion centers on the facts of antineoplastons. Dr. Battle said she'd try to get someone for us as soon as possible and we believe she'll come through. She and Dr. Kroin have been there all along, continue to do so, and we can't thank them enough for at least trying to help and watch Leo.
Finally, Joe the PICU resident, explained last night why an endocrinologist isn't what we need. He said that endocrinologists are experts in the glands and systems that produce hormones, not the other systems that may be affected. So from that perspective, Leo is not in an adrenal crisis, which is why the endocrinologist has little to add. I wish someone had explained this to me early on so that I didn't have to waste so much time thinking, bitching, and complaining about this. Leo is now on 6mg of decadron, which will probably stay until he's back to being as normal as possible under the circumstances.
posted by Yury at 9:26 PM
1 Comments:
My Mum who was experiencing weight gain, hair loss and acne, bouts of chest and abdominal pain and several months of unrelenting headaches that no medicine could relieve, In fact, it got worse. saw various doctors they decided that the lab levels indicated nothing much at all, until we met a Doc. who did CT scan, and she was diagnosed with adrenocortical carcinoma. So after one year, A surgeon advice was to remove her tumor, along with her left kidney. she needed to see someone with extensive experience in treating adrenal gland tumors for the next phase of her treatment. Knowing she needed to get an answer once and for all, we looked up on the internet and saw someone who testified about Aryan herbal medicine which she took and she had no more symptoms since then. You can also contact him if interested at
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