Since I'll never reach 1000 posts at the rate I'm going, I'm celebrating #419.
Actually, I need some advice (and a chance to vent).
Oh, and this will be long, please be patient.
[first, some history]
My fourth child, Aidan, was born July 2001. Right from the start he began having problems. He would hardly eat. Ever. He didn’t shake his newborn jaundice for a month and a half even with the portable billy light (sp?) he wore for 18+ hours a day. He began having screaming fits that would last for an hour or more at a time, 3-4 times a day. He wouldn’t gain weight, and sometimes would lose weight between trips to the doctor.
We suspected he might be suffering from GERD (reflux disease). His older sister had similar symptoms and had surgery when she was 4 months old to correct GERD. We spent a lot of time at the pediatricians office and at the local children’s hospital trying to figure out what was wrong. A doctor at the children’s hospital finally confirmed a reflux problem. We opted for the same surgery his sister had (a fundoplication) only this time it would be done with a laparoscope. Recovery would be a snap. Except that it wasn’t. Immediately after the surgery he stopped eating and it took a week to get him to start again. Our 2 month old lost almost 1 pound in the process; quite a bit for a kid who only weighed about 10 pounds going into surgery.
To our dismay, the surgery didn’t solve any of his problems. We still had a tough time getting him to eat and gain weight. He still had screaming fits, which were an obvious reaction to pain (we have three older kids, we knew the difference between “colic” and “something worse than colic”). And now he began having fevers in the 104° to 105° range every 6-8 days. This resulted in several late night trips to the urgent care center (in addition to many day time trips to see his doctor) in an effort to find a cause. However, nobody could ever find anything. No infections, no viruses, no parasites, no nothing.
I came home from work one night in late January 2002 to find my 6 month old screaming and feverish. We took him to the urgent care center to have him checked for an ear infection (my wife was sure it was nothing more than that). Instead, at 2 am he underwent emergency surgery to repair a diaphragmatic hernia. His projected week of recovery time turned into two weeks when he suddenly stopped eating again after the surgery.
Less than a month later, he was hospitalized again after getting RSV, Rotavirus and the chicken pox at the same time. The real problem, however, was not the illnesses, but the fact that he stopped eating! He went 16 straight days refusing to eat solid (or liquid) food. This time he lost 2 pounds.
After regaining his appetite and coming home, he began to do remarkably well. His fevers tapered off to about once a month. The screaming fits fell to about one a week and he was really starting to put on weight.
Right before his first birthday, he had a recurrence of the diaphragmatic hernia that required another emergence surgery to fix. This was followed by (you guessed it!) 12 straight days in which our 1 yr old refused to eat anything.
[bear with me, it’ll get better]
During all of this, we saw about 10 different doctors, including specialists, 50+ residents and probably twice that many nurses. None of these people were ever very concerned with his problems (except for the hernias). They seemed indifferent to the screaming (which only one doctor ever witnessed). His frequent fevers were dismissed as soon as all the tests came back negative, and his refusal to eat was simply treated with IV fluids until he started eating again.
Shortly after the second hernia, a test revealed that he was suffering from gastroparesis (a paralyzed stomach). This is frequently a complication of diabetes in adults. Diabetes had been ruled out on more that one occasion in my son’s case, and based on his history, the doctor concluded that he had been born with this problem.
So this is what was happening: my son would eat, filling his stomach. The food would then sit in his stomach, unprocessed and undigested for days until it slowly worked its way down into the small intestines. As soon as he got hungry, the process would start over again. This is the reason for the high fevers and low appetite. The surgeries aggravated his condition and caused the complete loss of appetite, which made him refuse to eat on those occasions. The first surgery (the fundoplication for GERD) was probably unnecessary because the reflux was merely a symptom of the gastroparesis. The two hernias were complications of the original surgery. The RSV, Rotavirus and chicken pox were just buzzard luck.
After coming up with the gastroparesis diagnosis, the doctors freely admitted that they had no experience treating kids with this problem (of which there are only a handful in the US). My wife did some research and found a doctor in Columbus, Ohio currently treating two or three kids with this problem. She contacted the parents of one of these kids and spoke at length about the condition and about the doctor.
We decided to seek advice from the doctor in Columbus. Pleased with what we found, we then had a battery of tests performed (in Columbus) to determine the scope of the problem (which we now know includes part of his small intestines, too). Finally, Aidan had a gastronomy-jejunostomy tube implanted to allow for enteral feeding as well as to provide a way to drain his stomach after he takes food by mouth.
[now it gets better]
Prior to the gastroparesis diagnosis, we were, admittedly, a pain in the butt at the children’s hospital. We spent a year trying to convince the doctors that something was wrong with our son. They tried their best to shrug us off, but we persisted. Good thing, too. They weren’t even looking for gastroparesis when they found it.
We are now trying to coordinate care with the doctor in Ohio and with the hospital and doctors here in Kansas City. Getting the doctors here in town to cooperate has been as difficult as getting a diagnosis from them. They know we’ve been seeing the doctor in Columbus, and initially they said, “Great, we’ll be happy to work with your other doctor.”
However, lately they have been increasingly uncooperative. They keep insisting that the doctor in Ohio won’t contact them or return their calls. (funny, the doctor in Ohio keeps saying the same thing about the doctors in KC)
A few weeks ago Aidan’s stomach troubles flared up. The doctor in Ohio suggested that we see our local doctors and ask for a specific test (I forget what it was) to check for a bowel obstruction. My wife dutifully called the GI clinic at the hospital here in town and explained what the doctor in Ohio was concerned about and what test needed to be performed. The clinic told her to go to the ER for that. She didn’t get into the ER until late in the afternoon and then they made her wait for over 4 hours. Finally, they admitted Aidan to the hospital with the promise that they would check for the bowel obstruction in the morning. Morning came and went and sometime in the afternoon, the GI doctor from the clinic showed up and sent him home without ever checking for a bowel obstruction. (his exact words were “We don’t want to do it.”) We couldn’t believe it! My wife was so furious she and my mom packed a few things and drove the 11 hours to Ohio to see the doctor there.
In five minutes they were able to discover that the internal balloon that keeps Aidan's feeding tube from coming out was over-inflated. Five minutes after that they had the problem fixed.
After returning to Kansas City, my wife made some calls to the hospital’s Patient Advocate office to complain about the way we had been treated and finally found out that she (my wife, Aidan’s mom) has been accused by one of the GI staff of having Munchausen by Proxy syndrome.
This is a mental disorder that usually afflicts a mother and manifests itself when the mother either fabricates a medical problem for her child, or (most often) actually inflicts her child with a medical problem in order to gain attention for herself. In essence, this person likes to be seen in hospitals caring for her sick child, and so she uses her child to create a need to be in the hospital.
It’s also considered a serious form of child abuse.
Our accuser is a surgical nurse in the GI department at the children’s hospital. She has never been directly involved in the care of my son (except, perhaps, during one of his surgeries). She has managed to convince the head of the department that this might be the case and he has called and spoken at length with our kids pediatrician. No calls have yet been made to child protective services. If that ever happens, we will immediately lose our kids while an “investigation” takes place.
My wife is worried sick and scared to death that our kids will be taken from us.
She is also pissed off to the Nth degree. Since finding out about this accusation, we have researched the condition in depth and cannot find one solid link between our situation and MBPS. Nothing fits. And that is not the subjective opinion of someone too close to the situation to see clearly. I mean NOTHING fits! None of his problems have been fabricated. None of his problems have been inflicted upon him by another person because it’s not possible to inflict these things on someone. All the time we’ve spent in the doctor’s office and hospital begging them to take another look has actually led to a real medical diagnosis. The only thing we’re guilty of is being a pain in their collective a$$.
We have a family friend who works at this hospital who suggested that they might be trying to cover up a problem or mistake by diverting our attention with this accusation. We are seriously considering contacting a lawyer but I hate to contribute to the medical malpractice problem in this country and I dislike lawyers in general anyway. However, there doesn’t seem to be a better alternative at the moment.
While we're thinking over the lawyer option, we have requested a meeting with the head of the hospital, the accusing nurse, the GI doctor who called our pediatrician about the MBPS, the hospital’s Patient Advocate, our pediatrician, and the doctor in Ohio [by phone]. This is tentatively scheduled for early next week.
Should we be doing something else?
Is this the kind of treatment people usually get when their kids have mysterious illnesses?
Would I be justified in taking these people out back and kicking the crap out of them?
The most difficult part of this is that we need to maintain a good relationship with the hospital because we will be relying on them for Aidan’s long-term care. This is another reason I hate to bring a lawyer into the mix.
Are there any Hatrackers out there with any sage advice? I sure could use some right now.