what do we do from here

[howiesgirl]

my daughter who is almost 14 (less then 3 weeks away) has had fainting spells since she was about 4yrs old. Always the same episodes dizziness, severe stomach pain, passing out always the same thing. we went from doc to doc. we were told some children just pass out, we were told to increase fluids remove caffeine we did all of this. Not much change but there has never been any rhyme or reason to these occourances.As she got older it was almost as if she had learn to control the episodes (she could feel one coming on and usually lay down to avoid fainting). However in Dec. 09 she had an episode at school falling out of her desk and hitting a concrete floor, ended up in the hospital overnight suffering a concussion. We have again been told to increase fluids remove caffeine we have done this she has had 2 episodes since the one in Dec. We were sent to a pediatric gastro who did loads of blood test and sent us away with no answers. She has recently started to experience heart palpations I called the pediatric cardiologist I was told he could not see us for three months and that it was probably just because she had seen him in March. My daughter is 5foot three, very thin, very pale and extremely tired all the time. She is intalligent A-B average and does not like to bring attention to herself ever. I have a hard time believing this is for attention since she has had the exact same episodes/symptoms (for lack of a better word) for almost ten years. She also complains of stomach pain almost every time she eats. Please tell me if there is anything else we should be doing or if there are any specific test we should ask for. Thank you in advance for your assistance        

[howiesgirl]

She has been cleared of any digestive diseas but autoimmune has not been ruled out. We do live in the US and are fortunate to have good health care coverage.Thank you for your advice. I plan to ask for additional testing when me see the doc again.  .

[LukeL]

There is also the chance of Crohn's or some other digestive disease could be it, autoimmune could also be a chance.  I would still push for a complete heart and neuro work up which would be imaging of both the heart and brain along with eeg (electrodes on the head) ekg (electrodes on the chest) and a 30 day event monitor (holter but you wear it for 30 to up to 60 days) there are also implantable recorders which can be worn for 1-2 years and when an event happens you press a button on an external device it records a couple minutes before and after the event.

I would also push to see an endocrinologist and/or an immunologist who would test for autoimmune conditions. Do you live in the US or a nation with nationalized healthcare?

[howiesgirl]

She has not had a holter monitor. When I asked about that I was told there was no need since she may go months without an episode. I have asked repeadly for a neuro referral and was again told no need. She did see a neurologist when she was about 4 he did an ekg? (electrodes on the head) at the time we were told the results were fine however there now seems to be no record of that test. She was tested for Celiac disease this test was negative as well. we have also had glucose testing she was unable to complete this test. No further testing ordered. All foods cause stomach pain even if she only eats a little she wants a rolaid after. We have cut out greasy foods, fatty foods, bread, carbs, all at diffrent times.      

[LukeL]

Has she had a holter monitor on during one of these episodes? How about an echo?  Has she seen a neurologist? Had an eeg?  How about a test for celiac disease?  Have her keep a food log to see what foods cause stomach pain. R

[Marie M Gleason, M.D.]

Dear howiesgirl:  Most young people who experience passing out spells over a course of many years have vagally mediated syncope.  The initial course of treatment is to increase fluid and salt in the diet, and avoid caffeine as you have been told.  There are medications that can be used to help young people with vagally mediated syncope, when increasing fluid and salt in the diet is not successful alone.  It is very common for these youngsters to be tired a lot, and they often get pale.It is also very important for them to get a good nights sleep, preferably 8-10 hours if possible.

In some teens, abdominal pain is a stimulus to their nervous system that causes them to pass out.  It is important to make sure that there is not a secondary cause of the abdominal pain, so it is important that the gastroenterologist do a thorough evaluation.  Did her blood work evaluate her for inflammatory bowel disease or celiac disease?  If she is very thin, has pain after eating and doesn’t gain weight well, that would be important information.  

It sounds like she has seen a pediatric cardiologist.  It is important to speak directly to the cardiologist by telephone and explain the current episode. That would be better than waiting for an appointment in 3 months time.  For your information, falling out of the desk at school is actually a common scenario in teenagers with vagally mediated syncope.  Please inform your pediatric cardiologist about the palpitations.  Many times, the patient just perceives their own heart rate speeding up as a natural mechanism to keep the blood pressure stable.  Also ask them about treatment with medications such as Florinef and Midodrine.