We don't exactly have any answers. We saw the neurologist today and basically are back where we started. Waiting for an EEG. The neurologist did not feel like his behavior was definitely seizure activity but also did not feel like it necessarily wasn't. So what that boils down to is us trying another EEG to see if we can catch the activity. This time we will do it without sleep deprivation, during a feeding time(since that is mainly when we see it), and for a longer time period. This will closely simulate the scenario that we most often see it.
Sadly, the first EEG they have is May 13. We will try to get in sooner from a cancellation( that worked well the last time :)) and I plan on talking to my pediatrician tomorrow about some other options.
I am frustrated simply because we really don't know much more at all then before we even got the process started and for now still have to wait a while to get any further answers. We REALLY need him to have the behaviors we're seeing during this next EEG so we can determine if they are seizures or not. It feels a little bit like stabbing in the dark to try to catch it.
The doctor did mention one possible thing that it could be other than seizures that involves his reflux and odd posturing and muscle tensing to try to control it. I don't have a very good understanding of it yet to feel like it's a high probability but we certainly would love it if all that was required was more aggressive reflux treatment. We have recently been feeling like we could probably wean him off his meds for that because we felt like it has gotten better so it doesn't make a lot of sense to us to be that but maybe it is.
So... back to the waiting period. I am SOOO not good at it but I'm trying. And to be honest, I'm really disappointed and discouraged right now. As frustrating as is, I know that this is still God's plan for us and for Cohen. While it doesn't make sense to me, I know He sees the big picture. I know He's in control. I'm trusting that His timing is always perfect. He makes no mistakes.
Thanks so much for praying for us. Hopefully, I'll be posting soon about a new EEG date from a cancellation!!!
Finishing 2011
13 years ago
8 comments:
2 Corinthians 4:8-9 (NIV)
We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.
Hebrews 10:35-36 (NIV)
So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised.
Philippians 4:6-8 (NIV)
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
Philippians 1:6 (NIV)
being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.
Praying for your family and for answers...
Still praying for you. It is so hard to wait. I am praying for each of you and for a cancellation sooner! :-)
You claim those scriptrues every day, when you get worried or Satan starts to attack your mind...you quote them at him...you are a child of God Almighty...He is going to take care of you....He is in control in all things....
Know that lots of prayers are going up on your behalf...
On another blog I, read her daughter had seizure like episodes while eating. She put a video up on her blog. It ended up being severe reflux. It might be worth watching to see if it's the same thing Cohen is doing.
Praying you will get your answers!
http://audreysplayground.blogspot.com/search/label/GI%20issues
We are praying for Cohen and your family, Emily. It just seems too weird that it mainly happens while he is eating...to me that seems more like something other than seizures- seizures usually happen at any random time, don't they? Not that I'm an expert or anything, just a thought.
God is working, that is apparent. We will pray for peace for you and your hubby as you wait. Waiting is SO HARD TO DO!!
Torticollis what they are talking about, I assume. We went through many EEG's with my Peanut, and that was what she ended up diagnosed with. Thank goodness, because it's definately less scary than seizures!!
at 7 months our son started having what i thought must be seizures. he was already on reflux meds and had had many other health problems (and corrective surgery) but the seizures were something new. and like you say-it wasn't obvious seizure behavior but not normal at all either. LONG story short-EEG's caught nothing. Behavior continued (but never after we entered the 'magic doors' of the hospital-that would have been too easy) ;) Our neuro decided before recommending an ambulance transport to a more specialized hosp 3 hours away that he would like to change his reflux meds to something much stronger. He said one other time in his career that he had a patient whose reflux developed into something so severe it triggered seizure type behavior. And that was it...days later PRESTO...new meds=no more weird movements AT ALL. All that to say-your story has sounded so familiar...just wanted to mention that your docs hunch may be right...it was for our son (who btw has outgrown the reflux and is 8 now) :)
Emily,
We continue to pray for you all!
When Grady was younger he had those reflux seizures and the first time it happened we were in the hospital and were so scared. It does look exactly like a seizure and is so scary. It's like their airway gets closed off and that is how they react. It eventually went away. We still pray that the doctors can figure out what is exactly wrong so you can move towards a solution.
Alise
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