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So, this is more of a ventind post! The children's hospital (which I will not name-but easy to figure out) is not being so helpful. Cole has been getting up in the middle of the for 6 months...having cluster seizures, shaky, eye's glossed over. I asked the dr if we could do an over night EEG...because I couldn't do it anymore. Having to get up in the middle of the night for practially 2 years stright is not what I had in mind.

You would NOT believe it...but she told me they didn't want to do one. I've heard other mom's say they had to fight to get an overnight EEG or 3/day. And when they meant fight...I didn't know they meant F-I-G-H-T!

She asked me why I wanted it...and I told her as I was bawling...that in the 1 1/2 years that Cole has had seizures, he's only had an MRI & two 20 min EEG (the resent one he wasn't even a sleep). She told me no again, and I told her I have to fight for my son and I wasn't going to sit back anymore and not doing anything. She kept saying "but we have a plan with the medication"...and I was like "what does the medication have anything to do with an EEG". She kept resisting and I asked her if there was a reason she didn't want to do it...she said she could do it...but didnt want to and wouldn't give me a reason. I told her that "I have good insurance and if the insurance covers it why we couldn't do it!?", and her answer was "because it may not show anything". I told her I was aware of that...but logically, if my insurance will pay for it and he's only had 20 mins EEG's then it would be logical to one. And I know it may not show anything (probably because they don't even know how to read an EEG- TRUE!)...but if it did, then would would go from there!

I couldn't believe that I had to have this conversation with a dr while my child has had seizures for 1 1/2 years and few tests!

But don't worry...we are trying to get into the Cleveland Clinic in Ohio soon!!! with the best drs (THAT ACTUALLY WANT TO HELP!) and as "C" called it...the "Disneyland" of hospitals w/ Day Spas & fine dinning etc!

oh, and the nerve of the dr to ask me if I could even get off of work for 3 days for it!!! WHAT KIND OF MOTHER DOES SHE THINK I AM??? DOES SHE NOT GET THAT I PUT MY CHILD FIRST???


  1. what a rough road sarah. tons of hugs and prayers being sent for you. LOVE YOU!

  2. EWWW I feel my blood pressure rising for you! So what happened? I would have said "well if you say you can, then that's what we're going to do. Let's do it". The question that needs to be asked to her is "What if it "DOES" show something? Seriously, I am so sorry this has to be such a fight for you day in and day out!

  3. Sounds like you held your grounds pretty well & if it was me I would have smacked her. I'm sure you felt like doing it! :) Sorry to hear your fight is continuing, not ONLY with Cole's seizures but for help to get them better controlled. Yay for no more Keto diet! Freedom! Not that live is much easier when off it. Sorry to inform you. I will be praying that you guys are able to get the tests that he NEEDS done quickly so that he can start getting the HELP he deserves! Have you gone thru ALL the Children's Dr's? Just a thought. I have changed Dr's for Manoah SO MANY times. They hate it, but I have gotten so much accomplished by doing so. Let me explain: When Dr's don't see result's quickly, they become idiots & stop trying to help. My experience is when I change to a new Dr they are gung-ho to help me out! After a while they poop out too or hit a wall (as I call it) & they throw their hands up & just don't help anymore. (True story of 3 of Manoah's PAST Dr's) I will be praying that you guys have strength & guidance for all that is require in your journey. Love ya Sarah! Stay strong!

    P.s. I will be contacting you soon about doing Manoah's B-Day Party Stuff! :) I'm excited!

  4. I'm shocked!!! I can't believe she said that to you!!!
    Have you heard back from Cleveland yet?
    Or gotten the results back on the SCN1A testing?
    Hugs to you, Adam & Cole!