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Forum: Children with Special Needs


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June 17th, 2011, 03:39 PM
Mega Super Mommy
Join Date: Jun 2007
Location: Knoxville,Tennessee
Posts: 3,593
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Why is it that every doctor that can't do anything about Danny's major issues understands that something is wrong and the ones that are supposed to be treating it sit back and act like I am crazy?!?!? Danny's GI wasn't concerned about the pound he lost (which seems to have been a faulty measurement because today he was only down to 31.2 pounds from 31.4 rather than 30.4.) She just wasn't told we were going out of town and wanted to see Danny before we left for 3 weeks. We went in today and she was oozing the "I know more than you" mentality. She wasn't rude, she just made excuses for all of my concerns. A. He is still slowly losing weight. He started out at their office at 31.6 pounds. His second visit he was 31.4, and his fourth was 31.2. Her response...ounces aren't that important. That can be the clothes he is wearing, how much he has eaten, how much he has pee'd or poo'd, etc. Basically anything to excuse a consistent small loss. She said "He has gained 300 grams since his last visit." (my sarcasm)>>> "So he gained a pound in 2 days while refusing almost all food?" (Yes I said it out loud.) Her response... "Apparently." She was completely non-chalant about it like it 100% made sense! She maintains that he is "holding his weight" and that there isn't a major concern right now. So if he loses ounces at a time down to 30.4 pounds then will she be concerned? I have no idea. I was on the verge of angry frustrated tears and couldn't ask her anything else without crying...one of my phobias is crying in front of doctors....I don't know why. Anywho...she is scheduling an EGD w/biopsy and PH probe to check things out a little more. Guess what day that has to be on... That's right...the day before his birthday. Oh did I mention he has to stay overnight to make sure that the probe doesn't come out? GRRRRR!!!!!!!

So I called hematology for one last try at them before giving up and asking someone else to do their job for them... I talked to the receptionist to ask about a few dates and get a few facts straight. Like the fact that he was not sick within a month either direction of his 1.0 or 1.3 ANC's. Those happened all on their own. Did the receptionist care? Oh yah, did the nurse care? Oh yah, did the doctor care? NO! Same with the bleeding and bruising. He had bruises everywhere, joint bruising, and a papercut sized cut that took me 10 minutes to get it to stop bleeding. Did the nurse and receptionist care? OH YAH. Did the doctor care? NOOOO!!!! I HATE DOCTORS! He told the nurse to tell me that Dr. C had seen no reason to continue care and based on the small number of records that they had they could see no reason to disagree with her findings. The will not monitor CBC's and will not schedule to see him unless I want to have him seen...per the nurses suggestion to get us in somehow...to evaluate for a bleeding disorder. He doesn't have a flipping bleeding disorder and even if he does the symptoms come and go and the last ones went last Tuesday! The day AFTER they refused to do a CBC...

However, while all this is going on his allergist is quite concerned about GI and hemat issues and his ped is also quite concerned about his GI and hemat issues... How does it make sense that the two doctors that need to be concerned with finding anwers to the problems and are able and obligated to do so refuse and the doctors that are powerless to do more than order a few tests are the ones that know something is wrong? This is SOOO WRONG! His ALLERGIST is ordering CBC's and monitoring infections and such and his ped is the one that gave him the rx for periactin... Why are they the ones that care so much and want to help so much and hem/onc and GI aren't doing near enough? I am SOOOOOOOOO over this. I broke down and cried for the entire hour drive home. I cannot wait for Cinci... If they say that he is fine I just might crumble into a pile of dust....

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June 18th, 2011, 04:33 PM
Ditzzy's Avatar Stupid Lamb;)
Join Date: Sep 2007
Location: OH-IO
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First of all - (((Hugs))) I've never heard of such lax drs before! WTH?! Cinci is sooooo much different. If there's even a chance for a major health concern, they do what needs to be done! If they don't see an issue, I will be shocked.

Just move to Cincinnati and Ava will share her hospital with Danny!

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June 19th, 2011, 11:46 AM
Mega Super Mommy
Join Date: Jun 2007
Location: Knoxville,Tennessee
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:') I have been soooo tempted and we may once I finish school. I really need family and the sitters that I have here. Finding new people to help with Danny will be a nightmare. I am just praying that he doesn't get sick. His throat has been really red. They said it was a virus but it isn't any better and that was the friday before last. I will take him in tomorrow morning and we will see what happens... If Cinci doesn't take this seriously or at least admit that something is off I will just crumble into a pile of weeping dust...

Thanks .:Shortcake:. for my GREAT siggy.

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June 19th, 2011, 11:04 PM
C&K'sMama's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,150
our docs are very lax too, but at least in our situation none of it over laps. This souds so frustrating. I"m so sorry

"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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