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6yo female w/tachy & pounding episodes

My 6yo daughter has an increase in her tachy episodes in addition to new symptoms of heart pounding & chest pressure (someone pushing on her back).  She has been diagnosed with Ig deficiencies, vaso-vascular disorder, and mastocytosis which her doctors suspect has been systemic.  The new doctor she saw suspects she may have mast cells on her heart degranulating which are causing the tachy episodes.  Her cardiologist had her wear a Holter moniter for 24 hours during which did reflect episodes of an increased heart rate, but none which met the threshold of tachycardia of 180 (her highest rate was 177).  She had a normal sinus rhythm the entire time.  She also has episodes where she will suddenly faint as though someone pulled the plug.  She is rarely unconscious for more than 15 seconds, but is very tired after the episode.  The first indicator we had she was suffering from health problems occurred when she was 1 month old and began to experience longer periods of cyanosis lasting from 1 to 10 minutes.  She wore a heart rate/apnea monitor which revealed several tachycardia episodes (the alarm would go off & was confirmed on the data recording).  Further evaluation revealed a PFO which I was told occurred due to her being a month premature.  Her PFO closed spontaneously around 1 year of age.  Continued monitoring and chest x-rays showed a shift in her medial stynum wall on 2 occassions around 9 months of age.  An increase in severity of symptoms (dizziness, cyanosis, tingling finger & toes, back pressure, sudden fatigue, nausea, rapid heart rate independent of activity) and lack of answers is frustrating.  So many variables seem to make an answer beyond difficult to find especially with her cardiologist's recent attitude that since she is exhibiting a normal sinus rhythm there are no concern.  While a normal sinus rhythm is very reassuring we are still left with the unanswered question of what is causing her symptoms.  
1 Responses
773637 tn?1327450515
Dear Surbiton,

I would actually like to address a couple of things here.  First of all, your daughter’s patent foramen ovale (PFO) had nothing to do with her prematurity.  All babies have a PFO in utero—it’s supposed to be there.  That is closed by age 1 year is also normal.  It typically has no other effects on the heart.

More importantly, though, is your daughter’s symptoms.  I don’t have all the information about her tachycardia in front of me, so I don’t know if she is having sinus tachycardia or supraventricular tachycardia, the latter of which is an abnormal fast heart beat.  I’m not sure what vaso-vascular disorder is; are you sure it’s not vasovagal, which would be a form of syncope, or passing out?  I can’t say for sure, but her mastocytosis certainly could be the cause of her symptoms.  The chemicals in the granules in the mastocytes can cause the blood pressure to drop, which then causes the heart rate to go up and can cause many of the symptoms that you are describing.  Typically, besides using antihistamines to block some of the systemic reactions from the degranulation, your doctor may need to consider other medications to block the response, such as beta blockers.  You should speak with your doctor further about what is happening in mastocytosis and what medical interventions can be performed to control the symptoms.
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