Doctor frustration: collaborative vs. secretive

C

chica25

New member
Recently my young daughter had prolonged severe abdominal pain, but without fever, etc. We went to three pediatricians in the practice and a pediatric gastroenterologist who all were very dismissive, hinting at school avoidance and secondary gains, until we saw a fifth specialist who sat down with me, explained what was happening (functional abdominal pain), what tests we should do (CT primarily), how long the pain would continue (6-8 weeks), and what we should do (laxatives, hydration, etc.). The CT confirmed mesenteric adenitis and an enlarged portion of her bowel, which was good enough for me to believe her.

Anyhow, I changed pediatricians and just received her medical records. Starting with the abdominal pain, it is filled with all kinds of judgmental references, suggesting faking, suggesting school avoidance, suggesting that I'm stressed and facilitating ... yet I was very open with all of these doctors asking "is this real" and "what should I believe" and "what is the right decision about school".

So I ask: why do doctors sit there and write all of this "secret" stuff in the files? Who is the audience? Why not be honest? Why not be collaborative? Again, to whom are they addressing these notes and how does it help our case if I don't know what they are writing? If they told me these thoughts I could respond, have a conversation. Is this just pompous arrogant doctor stuff? Is it legal malpractice protection stuff? Who is the audience if not the patient (or parent)?
 
you do what is best for YOUR DAUGHTER!! keep pushing and keeping going someone will help you! i wish i could help fix her but do not give up!
 
Hi ,

I think this is more of a parenting issue than a doctor issue, and it is not easy to be a parent!!! I commend you on the steps you have been taking.

I can understand your concern about what was written, but really the documents seem to be just a record of what the doctor heard from you. The doc has to start at square one, and that begins with how you the parent percieves the situation. He has no other evidence that anything is wrong, with no fever or tangible proof. Now there is a record of the child possibly wanting to avoid school, so that other doctors (plus this doctor) will know that this has already been considered. Actually in this case it does seem like a reasonable starting point. What was written does not mean nothing else is wrong; it is only a starting point. Whether you take it further is up to your perception, and in this case you did choose to investigate further.

A parent knows the child the best, and if we express any doubt that there is a serious problem, the doctor should and will take that as a probability of fact and write it in the report. If we act like we are taking a symptom very seriously, the doctor also will write that down and be more likely to order tests. Really, whether to send the child to school is up to the parent's perception. The child may need some treatment, but kids go to school with constipation, discomfort, casts, arms in slings, etc. Whether to send to school has to do with if the child can function and if the situation would be contaminating others. A fever suggests infection so that would be a good reason to keep the child home to recover.

A doctor, esp. one just beginning to take information on a medical case, only can take cues from phsyical evidence, and if there is none, they only can go by what we say. Most of medicine is wait and see. Most discomfort or illness is self-exhaustive and the body mostly does it's job of healing and rebalancing itself. We have to discern which it is, and that is not easy to do when we are not the one experiencing it. It's certainly not easy being a parent!
 
Your daughter may need probiotics to rebalance the beneficial flora that moves waste along in the intestines/bowel. Probiotics or acidolphilis can be gotten in a good yogurt or can be sprinkled on cold cereal from an opened capsule. You can get this info at a health food store.


I found this info through WebMD ~

http://emedicine.medscape.com/article/411043-overview

It indicates that fever is a normal symptom of mesenteric adenitis, and I thought you would want to be aware of this since your daughter had no fever. It says that the finding of lymph node enlargement as an isolated finding is nonspecific which means the diagnosis is not definite, so that and the finding of enlarged bowel is likely why it is being treated as constipation (for now at least).

It also says that nodes exceeding the normal size threshold are observed in children who have no disease, just so that you know the CT is not real proof of the problem. It may be the bowel is distended by constipation. Hopefully there is no disease and the treatment stops the pain and suffering. Please let us know how she is doing on treatment.
 
Thank you to all three responses (for some reason I don't get notifications of responses so I had assumed none, so thank you).

I have a hard time knowing what to respond.

On the one hand, I feel like there was a lot of information in her records that was being addressed to "no one!". You (doctor x) are making recommendations to no one ... why?

I don't know if I mentioned in the original post that one of the five doctors was kind and compassionate. I told him "I don't care if the answer is extremely low tech, but do you know what this is?" and he said "I think it's just functional abdominal pain, but in 1/1000 cases, we do a CT and find a surprise, so let's do it!

Recently at a neighborhood holiday party, a prominent local doctor heard about this and eventually told me to look at abdominal migraine (yes, unfortunately, I have chronic migraine and maternal migraine is an indicator).

But why say nothing to me and then write these crazy things in the file. My "best doctors in my life" choose not to do this - they choose to share information at every step. Is there really an argument for the secrecy? Maybe in some cases it gets too complicated but for me it's always (always) been helpful ...
 
... I'm sorry, I'm so worked up. It might very well be functional constipation which has distended her bowels (this apparently causes a lot of pain). I can accept this very "low tech" diagnosis. I just can't accept the "we can't find anything so there is nothing".

Let's start with the basis that there is something wrong. Then, if the answer is "low tech" that's OK, or if the diagnosis if "high tech" ... (cancer, etc.) ugh, that's obviously terrible. But let's find out what is wrong, because *something* is going on. There might be a stress influence, but ... that does not diminish the issue. (Since when does stress or psychology negate a medical case ... !!!).

Let's trust the child and parent and start with the basis "something is wrong - what?". [sorry, very upset here, very high strung at this point]
 
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