Tuesday, February 28, 2012

We have a plan:)

I kind of love this little guy. He told me he had a 12 pack the other day I was nice enough to point out that those weren't ab muscles they were ribs:) Got to keep the handsome guy a little humble...his teacher says that he is first pic for the ladies in his class:)

We finally received a call from "THE DR." yesterday. We got some good news and we now have a plan. I like plans you should know this about me. I am goal oriented and do well with lots of steps toward that goal. God knows this most of all because thats how he made me. That all being said this is exactly what "THE DR." gave us yesterday.

First off I should tell you that there doesn't appear to be any extending health problems with our boy. No apnea, no typical seizures, no heart problems. The sleep study led the "THE DR." to believe that Elliot is still extremely sleep deprived which was also the cause of these episodes beginning in the first place. Elliot's brain waves show he is in a certain type of his sleep cycle called Delta Sleep for 25% of the time he is sleeping typically kids his age are in that stage about 13% or less. The Dr. says this is actually significant. The amount of Delta Sleep Elliot is having leads to the likelihood of more and more sleep terrors its the kind of sleep we dream or have nightmares in. If we can get him caught up and experiencing more "good sleep" we should be able to reduce the amount of terrors significantly. "THE DR."suspects that we will still experience night terrors a handful of times a year....I quickly told him I can do a couple of times a year compared to every night:) In layman's terms Elliot's Brain is very confused about what type of sleep to have, how much and when. Sleep deprivation is a very serious situation and can lead to dozens of other problems. So Elliot dealing with this any longer than needed is not an option.

So here is the plan. Yay! We will wean Elliot off his Melatonin and slowly introduce a new medication called Clonidine( I struggled with sharing the name of the med as I am sure I will have people that feel the need to share all of the bad reactions and horror stories that come with any med), it is used for several different things in the medical world, very often for panic and anxiety in kids who are diagnosed with ADHD. It may take a few weeks to get the dose right. After a few months we will be back in touch with Sleep Clinic at Swedish and re-evaluate the situation. Basically our goal with this is to reset Elliots sleep rhythm and hopefully all will go back to our version of normal.

I know many of you have issue with medication. Yep me too:) I have many medical "issues" personally that I do not take meds for and will not until that is the last option, my Rheumatoid Arthritis for example has been completely handled with diet and exercise, and although I have been offered a pocketful of meds I don't believe that is a good option for me at this point. However some conditions require meds and I believe in those situations it is a great option. We have tried to deal with Elliot's sleep issues in every way possible at this point. I also believe everyone needs to make the best choices they can when they are in a situation. You can't judge especially in situations where people are making decisions for their children, if you have never had a child that deals with chronic issues you have no place to even dapple in judgement. Brian and I have prayed much, discussed much and toiled with the ideas of how to deal with all of this and I believe this is the best option for our little man at this point.

This may seem a bit defensive....as you may be able to tell I have had to deal with a lot of neighsayers and judgers in the last couple of months. I have not much more patience for this sort of "support" at this point. In this I should also say we have many hand holders and walk along siders and prayers. We can still use all of these people as we now head into the plan set before us. But neigh saying and judging can pretty much be left behind, we have had our fill and it would be gluttonous to partake in anymore of this:)

Thanks to all of you supporters....I can't tell you how many times I have felt the strength of others prayers, hugs and kind words in the last few months.

So here's to praying for sleep in the Jager home... I feel hope in this area:)


Ed / Julie said...

So, so thankful with you that you have a "diagnosis" a "reason" and a "plan" - that is HUGE! Praying that this works and that you all get that much-needed-for-sustenance SLEEP!

Andrea said...

I am glad you have an answer and a plan. How relieving!!
You are a strong lady and I know you are the best advocate for Elliot.
Hope you are all getting some sleep!!!