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Med Free

So the parade of horribles going through my head of what Sassy would be like without her meds was much worse than reality.  I was really surprised at how well she was.  We did have to add a sleeping med.  The melatonin alone wasn’t cutting it for bedtime now.  I was also afraid of how she would get if we got back into a cycle of not sleeping.  Her behavior issues would worsen.  So on meds, on a scale of 1 to 10 with 10 being the worst, she was a 3 to 4 on a regular basis.  Off the meds, she is like a 5 to 6.  I think she has learned a lot while being on the medicine. Plus she is about 2 years older.  She has now been off of the medication for over a week now.

Sassy with the necklace attire she wears daily right now.

There are three main differences I see with her off the meds. She is now talking about violent things like, “mommy I want to pull your hair out of your head”.  However, at least she is only saying it and not doing it.  She is also more impulsive, which is getting her in trouble at school almost everyday.  She is touching other kids papers, touching books on the shelf during story time at the library, can’t stop talking, etc.  The other problem is she is now harder to motivate.  About the only thing I can do right now as a consequence is tell her I will take away her necklaces.  She likes to wear this big pile of necklaces everyday.

My hubby and I went to get our own EKG to see if a hereditary issue was adding to the prolonged QT.  Both of our hearts were fabulous, so good news there.  The cardiologist did give us some options for meds.  We can do a small dose of an ADHD med along with a beta blocker.  However, they want to get another EKG on Sassy while she is off the meds, to see if it helped shorten the QT.  This will help with the medicine decision.  We are also going to meet with a psychiatrist to talk about med options.

We did finally hear back from the neurologist on the EEG.  Surprise, surprise, the test was abnormal.  The test says she may have an underlying seizure disorder.  The Doc said it’s a 50/50 chance that when she collapsed in January that a seizure is what occurred.  However, the heart may have also been the cause.  So, he said no seizure meds for now.  The heart issue takes precedence over the brain.  We should do the meds that the cardiologist wants to do.  He is interested in the next EKG test as well. We hope to get that EKG done soon.

We have an appointment coming up with the endocrinologist.  We really want to hear what input she has on the whole thing.  I will update after that visit.

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2 comments to Med Free

  • I found your blog from a link at your food blog. My heart aches for you. I so know how you feel though; my daughter is dx with SPD, ADHD, OCD, and anxiety disorder.

    I recently started a blog to journal my thoughts about what we are going through. Right now it is by invite only (you are more than welcome to join if you want).

    Praying for your daughter and the rest of you and your family. (((HUGS)))

  • Melissa

    Hey Laura, nice to meet you. Yes, my kids all have Long QT. If you want, catch up with me on Facebook and I can introduce you to many people and resources. There is a huge community out there for LQT and heart defects in general. I would be happy to chat with you any time.

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