Doc says "the pain is just in her mind"

Took my daughter (8 yrs old) to urgent care today because she has had pain for two days now.  Doctor reviewed tests, labs, and scans and told me it looks like IBS and (therefore) THE PAIN IN JUST IN HER MIND, furthermore I should redirect to a new activity if she complains of intestinal pain.  SERIOUSLY!   I was beside myself.  He offered absolutely no help on how to handle her pain.  I went to the pharmacy and spoke to the pharmacist...at least he suggested something that actually seemed to take the edge off.

Her GI doctor is on vacation for another week and a half.  Her pain started late yesterday and continued into this morning.  Yes, it would be nice if symptoms always presented M-F from 9-4...but this is real life!

Any suggestions on how to get through to Urgent care doc's...when you have to go as a last resort?

[TrudieC]

Has she had a colonoscopy?  Can her primary care physician help?  In the mean time you might want to try some abdominal massage and putting some heat on it.  Make sure she is drinking lots of water or tea.  Mint tea or Gas X can help with the gas.  Hope she gets some relief and some answers soon.

[avtmom]

Thanks for the response.  I sent her PCP a message over the weekend and expect a phone call today or tomorrow.  Lucky for us our PCP is the head of the pediatric unit and will take great interest in our experience.

Since the CT scan didn't reveal anything, I know further scopes and scans are in her future.

Late Sat and Sun her symptoms became more specific.  She had a fever and body aches...no more intestinal pain.  Treated the symptoms and she is feeling better today.

Thanks again.  Cheryl

[Ladyminers]

I am guessing you have already fixed it. And you probably wont answer me because im a 14 year old...Anyways...I have 2 things similar to this. I have ulcerative colitis and I have a thing where I feel the pain but the test come out negative..It got so bad it started causing constant seizues.. No worries though I had signs of nerve damage and low blood circulation for probably 6 months before they found anything. Ulcerative colitis is bad..And I kind of understand where you are coming from. My gastroenterologist tested me for ulcerative colitis and it came back positive 4 times. All he did was tell me what it is, he didnt do a colonscopy, a GI or even put me on medication to help..I have had this for about 6 years and they just found it. My mom also had this (it can be hereditery) If you think it could be that have the gastroenterologist run the IBD Cerology test. Symptoms are bloody stools, mucas in stools, adominal (abdominal) pain, vommiting, naseau, etc. I hope I helped!

[TrudieC]

I can't believe your doctor did not put you on any meds.  This is a serious disease.  You need to get to a different gastro doctor and be treated.  

[avtmom]

Yes, as you are well aware, the painful "flares" come and go...so, my daughter is feeling better now.  It was nice to hear your point of view both as a young person and also a person who suffers from UC.

I did talk to our PC doc and let her know I was not pleased with the care we received at urgent care.  She was very helpful with suggestions for the future.  Our GI doc will be back from vacation this week, but now we are on vacation...so, we will meet with her after we return.

After going through this with my eldest son, I know how long and difficult the process is to determine "what" is causing the pain and which IBD disease we are actually looking at (My son, who is 10, has Crohn/s).  We are in the phase where her symptoms have been presenting on-and-off four about a year, but all of her blood and stool labs have either been negative or inconclusive.  I'm not sure if we are headed to the endoscopy and colonoscopy or to a pill-cam study, but we are going to keep reporting symptoms and doing tests until we have an answer...because the one thing I know for sure, is that the pain she is feeling is NOT in her head.

Again, thanks for responding!  Good luck with your treatment.  I'd love to hear how it is going for you.

[Ladyminers]

I am glad she is feeling better! If her brother has crohn's she should be able to just be put on a pill because its hereditery.. Does anyone else in your family have it?

And thanks for aking how I am doing! I am doing ok I guess...This has been the worst week with UC though... And I have already lost 8 pounds.. I cant gain weight with UC its horrible.. Other than that I am doing pretty good...I wish my gastro would call back.. I definetely dont like my gastro...I think im switching to a different one...The bad thing is we have to travel out of state just to see a gastro that is pediatric. They did a colonscopy on my Mom and found a lot irritation.. But they wont do one on me, it could be totally different in me..They are seeing signs of Colon Cancer but he still wont do anything so my mom just let me use her pills. That her gastro prescribed since we were both diagnosed with UC. Im glad that the pain is in my head although UC is not, because they accidently ran that test out of the tests in the world! Thanks!
Sincerely,
Kacey

[avtmom]

Dear Kacey,

No one else in our family has Crohn's...so, this was a quite a shock for the entire family (for generations).

I have a few thoughts for you.

First ~ My son did a pill-cam study.  The doc had him ingest a camera the size of a pill (very Magic School Bus).  It was an easy procedure and seemed to go well.  In fact, it was because of the pill-cam that we finally found the problem area and he had it removed.  Now, four months later, he is feeling like a new person.  It is the first time in about six years he has really felt "good".  The pill-cam was much easier on him than all of the scans and scopes (endoscopy and colonscopy) were...and besides the "usual" tests never gave us any real answers.

Second ~ Have you tried drinking Ensure or Boost or some similar nutritional supplement drink?  My son has added that to his routine and the extra calories and nutrition seem to be making a huge difference.  He has gained five pounds in four months.  This is significant since he has hovered at about 47 pounds for the past five years.

Third ~ I bet if you were to inform your gastro that you are taking your mom's meds BECAUSE they can't (or won't) do anything for you, you will see your doc leap into action.  Physicians don't like it when patients take matters into their own hands...it tends to be a really good wake-up call for them.  Still, BE CAREFUL.  It is always dangerous to take Rx meds while the doctor is unaware that you are doing so...especially meds prescribed for someone else (even your mom, even for the same condition).

Fourth ~ You and your mom may want to discuss the cancer concern with your primary care physician.  Since you are concerned about the possibility of colon cancer, your primary can either authorize the scope or refer you to an oncologist who will do it.  Whatever you and your family decide, don't let it go unchecked.

Take care.
Cheryl