No help again from GI doc

[CHRISTYDRAKE]

I am so mad!  When we were in Cleveland for my son, they diagnosed him with POTS and autonomic neuropathy.  They weren't able to get a gastric emptying test done while we were there.  So, the doctor said she would run it when we return in January or to have our St Louis GI doctor run it and forward results to her.

So I called our GI doctor in St Louis, gave a long explanation to the receptionist and faxed over the doctors notes from Cleveland.   The doctors notes gave the diagnoses, along with the loss of reflex on the right side of his abdomen, and listed the tests the doctor still needs to run.

His office called me back today, and said he won't run it because he doesn't think it will show anything wrong there!  This is also the doctor, who last spring, said he didn't think there were anymore tests he could run and handed me a card for a psychologist.  You would think they would at least want to rule things out.  

So I guess this post is more of a rant than anything else.

[AireScottie]

Glad you got some answers!  Have they talked with you about diet yet?  It really helps to cut out fat, spices, and fiber.  Of course you don't want your son to stop eating fruits and veggies, but you might cut back or cook and puree them for a while to see if it makes a difference.

[CHRISTYDRAKE]

My son's gastric emptying test came back positive.  He does have gastroparesis.  They are going to start him on medication to help with this.  The test was normal for the first two hours, but slowed down for hours 3 and 4.  So they are going to start him on medication to help with motility.

[halbashes]

Good luck with the testing.  Please let us know how everything goes on Thursday.

[CHRISTYDRAKE]

Thanks for the tip.  I will go above his head.  

My sons test is scheduled for Thursday.

[AireScottie]

So glad you're getting help!

If it turns out he has gastroparesis, don't write the letter to the former GI, write it to his boss or an ombudsman.  Letters to the doctor have a way of disappearing or just getting shoved in your file.  Better to get them in trouble with their bosses.

[Heiferly]

Excellent!  I'm glad the nuclear medicine department is accepting the orders directly from Cleveland.  I hope the test goes well.  If he takes anti-nausea medicine in the drug family of phenergan/benadryl, he needs to be off it for this test.  I'm not sure of the complete list of meds that affect GI motility, you may want to ask the Cleveland docs to double-check if there's anything he takes that should be stopped before the test to make sure it's accurate.  

[kelly1258]

Good luck!  The Meds made my daughter 80% percent better.

[CHRISTYDRAKE]

I called the nuclear medicine dept of the hospital directly and asked if they would accept orders from an out of state doctor.  They said they would, so the Cleveland doctor is sending an order over for the gastric emptying test.

When I called our GI doctor (now ex GI doctor) and told his nurse the findings in Cleveland and faxed over all of the doctors notes, you would think out of curtesy to another doctor they would run the test.  It wasn't his dime paying for it.  Anyway,  the notes also state that he has lost reflexes on the right side of his abdomen.  That to me tells me something is wrong with those nerves.  If it turns out that indeed he does have gastroparesis, this doctor is going to get a very, very, long, not nice letter.  

So, now I'm waiting to hear from the hospital so we can schedule the test.

[kelly1258]

Do you have a children's hospital there?  That is where I took my daughter whom had a nuclear gastric emptying test.  Did the doctors in cleveland tell you what they though he could have?  I went in to a DR and said the specialist suspected she may have Gastroparesis.  SO he went with what the autonomic DR suggested and did the test. Sure enough she was severely delayed.  They really only see this in children with diabetes and some of the better doctor in childrens hospitals have seen it in children with Dysautonommia. Most regular Children's G.I. doctors are not familar with it.  

[Heiferly]

Is it a possibility to call around the radiology or nuclear medicine departments of nearby hospitals and basically cold call until you find out which ones run gastric emptying studies on pediatrics?  Don't worry about an actual GI doctor, just find a hospital lab that runs the test.  Then have the doctor from Cleveland fax the order for the test to them directly from Cleveland?  Perhaps they can have any Dr. So-and-so sign off on it if they need a doc within their system to officially order the test, without that Dr. actually getting involved in the case.  I think there's a remote possibility you could get the test this way--no guarantee.  But it may be worth a shot.  It can't hurt to ask if they can accept test orders from outside their own hospital system, or cooperate with a doc from outside their system to get the test done there locally without dragging a local doctor completely in on the case unnecessarily--after all, you don't need another GI opinion, you just need the test itself.

In the long term, it would be nice to find a GI doc closer to home that can work with you, but this may be a solution to the short-term issue of getting the test done in a timely manner while you work toward the long-term goal of finding a GI doc that doesn't have his head attached to the wrong end of his gastrointestinal tract.  ;-)

[AireScottie]

Yeah, I'd say get a new doctor too.  You could have the doctor in Cleveland call and talk to this guy, but then he'll probably be resentful.  Any yahoo that thinks he can determine the outcome of a test without running it is a big baboon, especially when there are already indications something is wrong.  When a doctor pawns you off with depression, anxiety, or fibromyalgia without doing any tests, it basically means he's in over his head and doesn't want to be bothered any more, so please go away.

You might try calling back to Cleveland, explain the situation, and see if they'll move up his appointment or if they know another GI in your area who is decent.

[kelly1258]

Get a new GI.  AS you are aware my 12 year ld just got out of the hospital for Gastroparesis, which is common for kids with dysautonomia.