Tuesday, April 8, 2008


Today I was reading about misdiagnosis stories in the forums over at Childrenwithdiabetes.com. Now, believe me, I am fully aware that this happens ALOT just like our experience with Maddison. But Maddison was found very early on. Her ability to stay awake, eat or be "normal" hadn't yet been taken from her. So many kids were taken to the doctor numerous times. Did you know that 1 in 3 kids are life flighted to the ER because they are in such extreme ketoacidosis? Some of these kids were literally near death and the Pediatricians completely overlooked a group of symptoms, not on one occasion, but over many visits! Stories such as these make me want to scream. They make me physically ill inside. Serious re-education is needed for any Physician anywhere on this planet if you ask me. Here are some quotations from horror stories of other parents......

"I asked her pediatrician (nurse practitioner, Navy hospital) to compare her weight to her previous appointment back in August of '07. She said there was a ten pound loss, but not to worry. I mentioned checking for diabetes because she had been drinking tons of water and eating EVERYTHING in the house but was told "...I am 95% sure it's not diabetes..." by the ped after she asked a few more questions. Okay. I was fine with that. But not for long. I knew something was wrong. Kathleen continued drinking and peeing A LOT and then other stuff alarmed me. Her hair and skin was so dry, she was losing hair, she had pains in her legs and (a few days before dx) her stomach, and although I at first figured she was just being a teen, she was um...GROUCHIER (not the word I would've used ) than usual.She had another follow-up appointment on March 19 and during that I again mentioned a blood test for diabetes. I told the ped that I respected her medical knowledge, but she needed to respect me knowing my child, and something wasn't right. They took blood that afternoon and said they would call me. Next afternoon we got a call saying her BS level was 'elevated' and we needed to come in early the next morning for a 3-hour glucose test. We go into her office and are told that Kathleen's BS level is 395 and she is diabetic. The ped keeps apologizing over and over for not listening to me."

"3 weeks after our original appointment with the Pediatrician she started with the flu symptoms throwing up and drinking ALOT.. She went to bed the next morning at 5am on 1-19-07 she went from looking like an 8 year old to 90 year old women. Her entire face was sunken in, she looked horrible.. I put her in the car with her 3 year old brother and rushed her to Howard County which is a part of Johns Hopkins. She was DKA and BG of 950. She was then transported to JHU in the PICU and can I tell you those doctors about 7 of them surrounding her was LIVID that her Pediatrician did not do a urine sample on her or blood work three weeks ago. They immediately called her Pediatrician who was on vacation and left her a message of Brittney's diagnosis. When we returned from the hospital 5 days later her pediatrician called me on the phone to apologize.. APOLOGIZE I said my daughter almost DIED because the lack of a simple urine/blood test which they would have caught it sooner."

"Bella was dx'd at 22 months old. She had been sick for about a month before we FINALLY got a doctor to check her for D. It all started with a bad diaper rash.... we just couldn't get rid of it. So we brought her to her pedi's office. They gave us a prescript. and sent us on our way.... (I DID explain that B had been acting off lately, drinking a lot, waking up in the middle of the night...)after about 5 or 6 days of antibiotic cream, her rash still was not gone, so we went back to the pedi's office. They checked her again, mentioned D, but said that they didn't want to put a catheter in because that would be too invasive, so we should keep an eye on her, and keep using the cream and the rash would go away.... (OK - I'm not a doctor, so this sounds oK to me....)A Few MORE days go by and she's practically passing out after waking up from a 2.5 hour nap, drinking a TON, cranky, tired, clingy, looks horrible, etc....So we go BACK yet again (can you tell I'm not too thrilled with our pedi office?!) and I'm like "do whatever you need to do to find out what's wrong with my kid!" In comes the Dr, does a quick finger prick, puts cottonballs in her diaper, and says... "Her blood sugar is high (599) and she is diabetic. I want to check those cotton balls for ketones, and then we're going to send you to Children's hospital" Here I am freaking out, yes because my poor baby is sick, but more so thinking "HOW HARD WAS THAT?!?!?!" why could this have not been done WEEKS AGO?!?! They had mentioned it, but the nurse didn't want to do it!!!!!!"

"In mid December 2006 Zeb seemed cranky and just not himself. That continued and I thought it was a phase, 18 months old and cranky is really not unusual. Then just before Christmas I commented that he was getting so tall 'look how he's thinning out'. (he did grow out of all his long pants about the same time) Christmas day he didn't seem great but okay, but then a dinner he threw up every time he tried to eat, it was like anything solid made him gag. Took him to the doctor the next day where he was diagnosed with a double ear infection and put on antibiotics. It seemed like he felt a little better at first but then after being on medicine for 5 days he was still acting sickly so I took him back. Doctor said we needed to try a different antibiotic as this one wasn't doing the job. I mentioned how skinny Zeb looked, they weighed him and said he had failure to thrive. I knew this wasn't right, he had been growing and plump up till just a few weeks ago, but they didn't listen at all. He seemed a bit better for a few days and we thought maybe it really was just the ear infection, maybe he wasn't walking because he was dizzy from the inner ear issues...maybe. Took him back the first of January, ears were clear and yet he still was not walking and seemed to feel crummy. I took him back two more times over the next 2 weeks listing symptoms including peeing through diapers, no energy, eating tons one day and nothing the next, cranky, not walking at all, drinking all the time. I was put off again and again as an overly worried mom (not at all me really). I took Zeb back on January 16 because he seemed so sick and sleepy. Waited an hour to be seen for 5 minutes and told that he 'likely picked up a stomach bug from big brother/sister' and to 'go home, give him pedilyte and stop worrying'. I left that place in a rage and crying so hard I could hardly breath. I KNEW something was wrong with my child and this dumb@$$ doctor had sent me away like I was some hysterical fool. I came home and called doctors offices looking for anyone who would take us right away. I got an appointment with my niece's pedi for 6 pm. Zeb slept most of the day. As soon as she took us back she started talking to us and I think now she knew right away what was wrong. In 15 minutes she knew more about Zeb than the other doctor ever did. She left the room to talk with another doctor there and they came back together and told us they thought Zeb had diabetes. And I swear my first thought was 'that is the stupidest thing I have ever heard, of course he doesn't have diabetes'. They had just moved into their new office and couldn't find a meter anywhere but none the less called the hospital telling them to bring us straight to ER. Meanwhile the nurses checked Zeb's blood sugar which was 356 fasting and I remember asking what should it be, I had no idea. He was moved to the PICU and after trying both hands and arms ended up with an IV in his neck because he was so dehydrated. He was in PICU for 3 days and 2 more on the peds floor."

"DS's doctor didn't say either way what he thought it might be. He sent us home with a script to get a urinalysis but DS would not urinate into the little cup. We went back the next day for a fasting glucose test which showed BS 87 - normal. We got those results on a Saturday. Took DS back to dr on Monday. He said it's not diabetes but can't tell more unless we can get the urine to run tests. Also said to take DS to ER if any other symptoms presented. That night at dinner, he started shaking and he vomited. ER doc did CT scan, chest X-ray since the fasting BG test came back normal. When those were normal, he rechecked the blood and the BG was 957. An ambulance ride to the PICU at midnight, then 3 1/2 days in the hospital.

Believe it or not, this is happening every single day. Mis-diagnosis of a disease that has classic symptoms.

-new onset bed wetting
-yeast infections
-weight loss
-fruity smell of urine or breathe

What did these Physicians not see? Is it so hard to do a QUICK urine sample? A quick finger poke? Why do they think it is so uncommon? 1 in 300 are diagnosed by age 12. Yes, YOU CAN BE DIAGNOSED at age 1, 2 or 3. I am simply disgusted today in reading the suffering some of these children endured before a "trained" Licensed Pediatrician decided that MAYBE their symptoms pointed to Diabetes. Absolutely disgusted.

1 comment:

Anonymous said...

These stories scare me so much. Everytime Landon gets that sweet smell to him I get knots in my stomach. The Doctor says that it is just "normal" for him, well no it's not "normal" for anyone to have elevated ketones. So what am I supposed to just wait and see if one of these days he gets really sick??