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.
 

But what a nightmare!
 

This is probably something that can work itself out provided that the people involved remain calm and logical, and that your other doctors stand behind you. I just think it'd be a good idea to have a lawyer aware of the situation in case you need to call one in on short notice (if (and I really hope not) the hospital decides to start making trouble; calling protective services or such...)

good luck, and please keep us informed!

Me

Sometimes just the threat of a lawyer suddenly gets the entire hospital staff treating you better. I would definitely see a lawyer. Personally I just found out that I was the victim of malpractice (an anesthesiologist was reusing needles on patients and may have on me, though fortunately I don't have hepatitis C like others ended up with) This dramatically changed the way I view medicine. I'm far more untrusting than before. Definitely see a lawyer... besides hospitals all have malpractice insurance so if he did think suing was an option, it rarely actually affects the finances of your hospital other than increasing their malpractice premiums in the future.

AJ

 

Oh, and congrats on 419.

--Pop
 

Good luck.
 

I suggest you contact a lawyer immediately. You don't want to play catchup later on. However, it is a very good sign that child protective services has not been called. The nurse may not have a very good idea of what Munchausen's is, but once she reported it, the hospital is required to document that they have looked into it. The department head would certainly be called into it in any case and she would certainly get in touch with your pediatrician right away. Once the nurse turned in her accusation, there was nothing else they COULD do. Keep in mind that if these doctors come to the conclusion that child abuse MAY have occurred, they must report it immediately. Since they have not done so already, there is a good chance that they are already leaning away from that suspicion. Otherwise you would have been reported already.
 

[sorry-didn't realize that's what makes the page do like that.]

[This message has been edited by Toretha (edited January 07, 2003).]
 

Thank you.

[This message has been edited by Papa Moose (edited January 07, 2003).]
 

I found very similar treatment during my father's illness. I discovered the best thing to do was to keep up with everything myself. Each test that was to be done and what it was expected to reveal, so that I could remember and ask later because they would order tons of tests and never even look at the results not even a glance until I asked about them. I would also remind the doctors of what had been discovered before which they had forgotten. After all, they have lots of patients and they can't be expected to remember everything. And they only have about 2 minutes a day to spend thinking about any one case. Then after three weeks in the ICU when we were right in the middle of trying to understand what was going on, the doctor rotated off duty, and he got an entirely new doctor.

I was appalled at that. Construction projects that get a whole new project engineer in the middle are a total mess and nightmare from then on out. I still just can't believe they simply swap them all out regularly and think there's any chance that the new person can be as effective without that intimate knowledge of the history.

I came to the conclusion that health care in this country is extremely poor and that most doctors are not terribly intelligent. Many are downright dangerous. If only we all could be cared for by Claudia Therese!
 

But it does get ridiculous. I know a GI doctor who, whenever consulted, orders the same huge slew of labwork to be done ASAP. He never, ever looks at the chart to see what's already been done. On two separate occasions he didn't order a single test that I hadn't already ordered during the same week! Grr.
 

I'd definitely consult with an attorney over this one.

I've been been typing and editing my reply for 45 minutes. I can't seem to find the right words to say. (Then my post failed to post.. )

I'm so sorry! Keep the faith and keep searching for answers.

(((DSH & family)))
 

It looks more and more like the MBPS accuasion will likely be dropped. But the chance is not yet 100%. (and it could always surface again in the future if Aidan's medical problems get screwy)

Even if the accusation is ultimately dropped we may still have a tough time in the future. The nurse who made the accusation apparently has an incredible capacity for gossip. After all the time spent in the hospital, my wife knows many of the nurses and technicians and has talked with some of them in the past few days and they all are aware of the accusation! These are people pretty far removed from the GI department!

Getting a formal accusation dropped may be easy but we may never be out from under the cloud of suspecion in people's minds.

The reason the doctor wouldn't check for the bowel obstruction was becasue of this allegation. I still think kicking the crap out of someone is the way to go. (this is coming from someone who has never kicked the crap out of ANYTHING. But you don't mess with my kids and get off scott free!)

I've resigned myself to the fact that a lawyer is necessary. I still hate to do it though. I feel like I'm contributing to an enormous problem that has long been out of control.

We have the name of two law firms now. One, we have been told, has made millions for themselves from this childrens hospital. They're our second choice.

The other I'm not familiar with but was recomended as a good plaintiff's firm.

Ophelia - Moving to Ohio has been discussed many times. As soon as I find someone willing to hire an engineering tech at a decent salary, we're there!

 

I do think that you need the advice of a medical lawyer. This is not perpetuating abuse of the system. Trust me. The activities of institutionalized power ought to be transparent, open to scrutiny, critiquable. Those in power ought to be held accountable. If there is no accountability, then abuses of power continue to replicate themselves.

You aren't doing this because you set out to get something that you don't deserve. Rather, you are trying to right a wrong and ward off future harms for your child and family. That is doing good work, that is fighting the good fight. Don't falter now.

The key, I think, is in knowing how your other physician made the diagnosis of gastroparesis, whether the sequelae of that disorder would explain everything that happened, and having a strong advocate at your side.

(I don't know you well, DSH, and for all I know the charges could have weight. But I highly suspect not, and I think justice can only be served by you having the strongest assistance possible. You are up against a system which defines patients who ask for copies of their own records as "problem patients" -- yes, the records which you have a legal right to, the records which you are supposed to have control over. Ask for them, and you will get labelled behind closed doors. That's just wrong.)

In the workup of gastroparesis, there has usually been an upper GI barium x-ray which shows grossly how the stomach functions, and this is usually normal. Be prepared for that. Also, the upper endoscopy is often normal.

More specific and sensitive tests include a gastric or stomach emptying test, which shows the functioning of the stomach by following a radioactive tracer over a much longer period of time. This is usually how the diagnosis is made. Alternatively, some places do an electrogastrogram (EGG), which measures the electrical activity of the stomach contractions, just as an EKG does for the heart.

A medically-oriented lawyer can help you make sense of your records and figure out why some tests were normal, despite the diagnosis. This is good information to have. Plus, if you had a positive EEG or gastric emptying test, the diagnosis is clinched. So long as the GI doc will attest that this explains the course of his illness, there should be no problem.

However, overprepared is good. Careful is good. And a lawyer present might well tweak some consciences, or at least keep you from getting thoroughly BS'ed.

Please email me if there is anything I can do. But do talk to a lawyer -- it's worth it. Good luck.
 

They also have darn good health insurance and good hospitals. If you wanted lower costs of living though you could always live in Southern IL. Either way it is a heck of a lot closer to Ohio. We go to Dayton frequently and it is doable in a bit over a half day.

If you want to e-mail me privately do so at BannaOj@yahoo.com. I need to change my hatrack email because it is badly spammed but I can't do it from work which is where I'm almost always on hatrack since their server blocks yahoo!

AJ

Idot website: http://www.dot.state.il.us/techapp/employment.html

[This message has been edited by BannaOj (edited January 09, 2003).]
 

Aidan has had at least 1 barium enema and 2 or 3 barium swallow tests. The gastroparesis was confirmed with a stomach emptying test in Kansas City and then the scope of the problem was tested for in Columbus by placing a probe into the stomach and bowel with sensors all along it's length to measure gastric activity. (this test used water pressure, not electricity to obtain measurements)

Upper and lower endoscopes have been done and biopsy's (sp?) have been taken to test for other problems.

I've personally sat with Aidan through 1 CT scan, 2 procedures/tests done under a flouroscope and maybe a dozen x-rays. He has been x-rayed/CT scanned/flouroscoped more than 100 times. (I'm probably sterile by now. Poor Aidan never even had a chance!) (well, I did wear a lead apron each time)

We were allowed to take his x-ray file with us to Columbus for the testing we did there and I'm not kidding you, the file weighed at least 10 pounds! (I know, I had to lug it around the hospital for a week)

Test-wise, I think our bases are covered.

The Patient Advocate called yesterday to say that she had our meeting w/ the doctors all set up. Except that she forgot to contact our pediatrician and the doctor in Ohio. We told her to please reschedule the meeting to include the doctors who are on our side too.

BannaOJ - Thanks for the link. I'll check the website tonight when my employer isn't looking over my shoulder!
 

As for the situation with the hospital, we finally had our meeting the second week of January. It was just my wife and I and the hospital administrator and "patient advocate" (who sat beside the hospital admin and backed him up through the whole meeting). They refused to involve any of the doctors associated with the care of Aidan.

In the end they admitted that "things were handled badly" with regard to the MBPS. They also admitted that the GI doctors at the hospital don't believe that gastroparesis is a very serious disease. (so if they don't take it very seriously, neither should we)

They concluded the meeting by telling us that we are not welcome to seek help or treatment from their GI doctors or clinic ever again.
 

AJ
 

quote:

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They concluded the meeting by telling us that we are not welcome to seek help or treatment from their GI doctors or clinic ever again.

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I really, really hope this all works out for you eventually. I wish you and your family strength and health, emotional as well as physical.
 

I've been looking for work in Ohio and Indiana. Indiana has a lower cost of living (outside of Indianapolis) so that has been the focus of my job search. It's been a month though and I'm starting to get desperate.