Update on difficult child's EKG - UGH

[TeDo]

Had our appointment with psychiatrist this morning. She won't start clonidine for sleep until we see a Pediatric Cardiologist. His bloodwork all came back well within normal limits. difficult child was getting antsy because he wanted to go to football practice (his first one ever). psychiatrist told him that the current EKG is a stopper for that. Not a good thing for a psychiatrist to tell an Autism Spectrum Disorders (ASD) difficult child.

Had our appointment with our pediatrician this afternoon. He explained that difficult child's "QT is a little long but nothing to worry about unless it gets to 500 or more" (whatever that means). Right now it's at 440. He also said that certain antihistamines can cause a longer QT but those have all been pulled off the shelves. I mentioned to him that difficult child was taking Loratadine (an antihistamine) for poison ivy when they did the EKG. He said that is NOT one of those and shouldn't have had anything to do with it. Then he said that difficult child is good to go for football and the clonidine won't do anything to the QT. I informed him that the psychiatrist won't start it until we see a pediatrician Cardio. He was VERY surprised. There is one that comes to a clinic 45 minutes away once a month so it might be a wait. This poor kid is not sleeping well at all and now we are in this "disagreement" of opinions. Guess we will make the appointment with the pediatrician Cardio and HOPE and PRAY that there is an opening soon.

 

[InsaneCdn]

See if the pediatrician cardio has a "short notice" list.
It means jacking around your schedule at the last minute (usually 24 hrs notice) - but we've had good success getting in to various specialists this way.
They will want to know why - its considered a priority booking, and they reserve these for people with "reasons"... but you have good reasons... an Autism Spectrum Disorders (ASD) kid doesn't handle well having this kind of unknown hanging over his head!

 

[Liahona]

Also won't handle not sleeping very well. I hate it when the experts disagree; especially in front of the difficult children.

 

[hamlet]

During my son's cancer treatment I learned a lot about doctors, policies, hospitals, and the rights of children when it comes to tests and specialists. Your son does not have a voice in this process other than you speaking on his behalf. The issue of football practice is next to NOTHING in the psychiatrist's estimation, and she's not putting herself in your son's place to see how important it is to him.

psychiatrist is covering her own malpractice issues.

If the psychiatrist is so concerned, she might be able to advocate for you to get into see the peds cardio faster or get insurance to approve one that can see you sooner. I'm betting that they find no long qt, but certainly the most conservative approach is to see the specialist and get a definitive opinion. You don't want to mess around with that stuff.

I know of a blog written by a woman whose son died of long qt and she shares a lot of the most recent medical research on the subject. If you're interested I can post it for you, (but I don't want to freak you out any more!)

 

[TeDo]

Thanks for the replies. Hamlet, feel free to PM me with the site. My pediatrician is awesome at explaining things to us. He explained that it can be fatal but difficult child's aren't anywhere near the "dangerous" level. They are only slightly longer than they "should" be.