6 year old with nausea, abdominal pain, heat intolerance, etc.

[GummiBear]

I am mom to a 6 year old girl who is a puzzle.  

She has a history of GERD but normal pH probe last Oct.  She also has asthma, chronic sinus and ear infections.  She has had PE tubes, tonsillectomy, adenoid revision, 2 sinus lavages and 2 bronchoscopy/lavages.  She has allergy symptoms but has tested negative 3 times with scratch testing.  She had an immune work-up and a CF test which were normal.  In 2005, she had a year-long bout with pseudomonas in her ears and sinuses, so the 2nd sinus lavage and irrigation.  She had a normal barium swallow with follow through in May, 2007 and a normal EGD in November, 2007.  Abdominal x-rays at one time showed moderate stool retention but the last one was normal. Recent first morning urine specimen ruled out diabetes insipidus.

Despite all of the above, she has ongoing symptoms which have not been explained including chronic abdominal pain, chronic daily nausea without vomiting, when she does vomit it lasts for days and requires Zofran to stop, heat intolerance, chronic headaches, easily fatigues, frequent leg pain, she does not appear to sweat but has a wet hairline in the heat, ocassional low grade fevers, and constantly drinking/craving water.  She is hungry all of the time, but fills up quickly most of the time.  No developmental or growth delay.
She has frequent "episodes" where she simply does not feel well (non-specific general malaise), becomes droopy and lethargic and lays down wherever she is.  I asked her ped to please talk to someone about her.  He spoke to an endo who asked if she craves salt (she does not) and thereafter suggested TSH and free T-4 blood work, which we are doing next week.  He also suggested that I have her run outside and get overheated before the blood draw so they can see her levels while she is overheated since this is when she seems to have the most trouble.   Any ideas?

[Deanna L Aftab Guy, MD]

Alot of stuff going on, this does not sound like everything is an endocrine problem, lets wait on the thyroid test and I never heard of running a patient around before testing the thyroid hormone level!!! Make sure that her medications are looked at carefully, if thyroid function is normal I would not pursue endocrine necessarily. If however height is affected which you say is not then this would warrant further endocrine workup. It is unlikely that this is adrenal insufficiency with good growth and weight gain but another area to consider.

[GummiBear]

Thank you for your reply.  Because of the chronic nausea and abdominal pain, we spent most of last year looking for GI causes and came up empty.  Our GI, whom we loved, moved out of state and we started with a new one.  When he refused to treat my son (who had a rare congenital defect that he didn't understand) our pulmo referred us to a new pedi GI.  The new GI was convinced, upon hearing my daughter's history, that ALL of her symptoms could be explained by GERD.  She was totally lethargic and non-participatory throughout that exam.  On the way home (4 hour drive) she became so lethargic and ill, I had to stop and rent a hotel room for the night.  We saw the ped the next day who felt it may be CVS. When the pH probe came up normal, the GI did an EGD, also normal.  He then said probably CVS, also, but offered no treatment. But the thing is, she does not vomit cyclically.  She is just nauseous ALL of the time.
Her heat intolerance, leg pain and constant water drinking caused her ped to order a first morning urine specimen to test for urine concentration.  It was also normal, ruling out DI, which is what he was thinking.  So, he spoke to the endo who said to do the thyroid study.  I was surprised by the directions to try to trigger her symtpoms by having her run around in the heat first, but figured they know what they are doing.
From my (non-medical) point of view, it seems to me that her electrolytes are somehow affected by heat and activity, thought this does not explain the nausea and abdominal pain.  It also does not explain the frequent infections or allergy symtpoms.  I have not found anything that explains all or even most of her symtpoms, but I keep looking.  I just can't stand that she feels so poorly so much of the time.