A close family friend sent this and I was hoping someone in this group
could offer some advice:
Last September Jane became ill. It lasted about 24 hours. She vomited off and on, was lethargic,
pale, weak and just looked miseable. It occured to me that this was the fourth time in a row that
this had occured. The episodes were spaced every 1 1/2 to 2 weeks. Because her Father's allergies
caused him to have similar symptoms we assumed that Jane 's episodes were a result of allergies. We
treated her with antihistamines which seemed to ease her symptoms to a degree. A week and a half
later she had another eposide that seemed more intense so we took her to a clinic. The doctor didn't
really know what to make of it but he did increase the dose of antihistamines that we were using.
Jane was fine for two months. She had days of occasional fussiness but nothing to cause concern.
Then in January she had an episode then was fine for another few weeks. Then on Monday the 9th she
became ill again. She was not completely herself the next couple of days but had moments of seeming
as though she were fine. Then after dinner Thursday she began to squirm in her chair. She fussed and
showed no further interest in food. Then from 7pm to 12 am she vomitted 8 times. In between she
would lay down and be completely limp like a rag doll. When she needed to vomit she would grab her
stomach and squirm for a few moments then she would try to stick her hand down her throat. She
finally began to scream in frustration. That coupled with the fact that she looked as though she
were dying and we were scared nearly witless we decided it was time for an ER visit.
In the ER the doctor did an EKG because her heart rhythym was irregular. He had no real answers for
us but suggested that we follow up with cardiac then GI at the University of Kansas Medical Center
Pediatric Division.
The pediatric cardiologist was curious about Jane's heart rhythym and extra beats so she did another
EKG. This time Jane was feeling quite well so instead of laying still sleeping like she did for the
ER doc this time it took three of us to hold her and she screamed and threw things and was in
general a perfect example of how parents do not want their child to behave. Ironically this stress
make Jane's heart behave in a relatively normal fashion. Anyway, the cardiologist wanted to put Jane
on a 24-hour heart monitor to see just how many extra beats she was having. Yesterday she called me
and explaned that the number she found was 38,000 extra beats. So she wants to put Jane on a beta
blocker called Propranolol. Since she is only 21 months it has to be in liquid form and was nowhere
to be found in this entire city. So we wait until Monday. In another week Jane will be seeing the
doctor again and have another 24-hour heart monitoring session. We will then be able to know if the
medication is helping any.
The doctor did think that it was possible that some of Janes's symptoms could be caused by her heart
condition. She said that some children display seizure-like symptoms also.
Janes's cardiologist told me that she has long QTs. The cardiologist was going to discuss the
implications of this with her colleagues and an electrophysiologist. The little bit of information
that I can get on this is that Long QT syndrome is a problem with the electrical system of the
heart. Ventricular fibrillation is a threat and could lead to cardiac arrest. My understanding is
that it can be controlled by medication. We will try this beta blocker then have Jane on another 24-
hour heart monitor to see if it has improved her rhythm.
As my understanding on her condition improves I will be able to update and inform others. Right now
I feel very ignorant about this condition and what its full implications are. Please pray for,
primarily, healing then wisdom for us and doctors, and for God to bring us the right people with the
right knowledge across our path.
We are not 100% sure that this heart problem has been causing Kathryn's symptoms. Its possible but
there is room for doubt. I just wanted to make sure that everyone had detailed information on Jane's
condition. If anyone recognizes something or is able to pass information to someone else who can I
wanted to provide as much detail as possible.
Her symptoms are as follows: Restlessness, grabbing at tummy, sticking hand in mouth then vomiting.
If it is the first few times the food is undigested or mostly so even if vomiting occurs 6 hours
after eating. After several times it is just clear mucus. This is followed by coolness, cold sweat,
very pale/white skin with dark circles under eyes. Then she is limp, weak, lethargic and just looks
like death warmed over. It is quite distressing and we have agonized over seeing her like this. She
has no fever and her stools resume the next day and are normal. Eventually, typically 24 to 48 hours
later, she returns to her usual, energetic, adorable, intelligent self.
Please forward this to anyone that you might think would be interested and have some recognition of
these symptoms.
Thank you all for your concern, prayers, and help.