is this right

[CHELLETO6DOGS]

Dear Doctors
my now 7 year old son has had open heart surgery when he was 3 months old.. large VSD (patch) a PFO (stitched ) and a PDA Ligation.. since around 9 months of age we noticed his HR all over the place Finally 2 years ago he was cyanotic (he turns blue around his mouth lips and in  between his eyes on his forehead for no "apparent" reason. no signs of distress and yes in warm water he also turns blue.. he did not sure if he still had bi directional shunting... finally 2 year ago he was coming down a few steps blue and I took his sats they were in the high

will continue on next post

[Marie M Gleason, M.D.]

If your child has had a cardiac cath and an EP study, and has an implantable loop recorder, then it sounds like your cardiologist is thoroughly trying to evaluate the situation.  If there is a bundle branch block present after a VSD repair (as there usually is) then the ECG beats will appear wide and could be interpreted to be of ventricular origin when they actually are not.  That is likely why the cardiologist said that it was not an accurate read.  Pacemakers are usually only implanted if there are long pauses or excessively slow heart rate all the time, and it does not sound like that is the case here.  I would suggest that you work closely with your general pediatrician to get your child evaluated for other causes of chronic fatigue.  The list is long and the heart is only one possible culprit.  He should have laboratory testing (like blood count, thyroid, etc) if that has not already been done.  Perhaps an endocrinology consult or an evaluation in a diagnostic clinic for problem cases would be indicated here.

[CHELLETO6DOGS]

80's made him sit.. the next thing he said he was tired t  i  r  e  d and out he went I though he might of fallen a sleep still not sure but his HR was 48 when he woke up with what seemed to be a few minutes later hie HR was 180.. when his HR goes below 50 he is so tired we have to carry him.. last April (09) he had a ep and cath done only of what we were told of his upper right part of his heart). Normal... now he has a Implantable loop recorder.. the lowest they have caught his HR was 38  and the highest on 2 different occasions and him complaining of pain has been 263 BPM the ILR showed it was fast VT yet the doctor says no that it was normal compared to his base line... he said that his complete right bundle branch block is preventing the machine from telling what is really going on..
ok fine I by that (well no not really)  it is really this normal even if he isn't have any types of arrhythmias to go this high or that low when he is symptomatic  he get very exercise intolerance also.. I am worried and can't go else where.. I feel that if they can control how far of a span his HR goes like between 50 and 150, then he will not be so tired when exercising he also at the age of 7 has to take naps in the afternoon any where from 2-3 hours and is in bed no later then 7 and this is his doing.. when running he at times also grabs at his chest an complains of pain.. i have it on video.
What do i do..
no asthma or things like that..  all his cardiologist says is WELL THERE HAS TO BE ONE KID IN THE GROUP THAT DOESN'T HAVE THE STAMINA AND HE IS IT.. HE MAY OUT GROW IT OR HE MAY NOT...
nice attitude.. now if he were over weight the doctor would say diet.. can't anything be done... I know you can't diagnose over the internet... but I am so desperate and so afraid of loosing him... what do i do
Thank yo
Michelle