A Rambling Incoherent Update Is Better Than No Update At All

28 Jul

* We did take Lennon to the neurologist today to ask our questions about CP and seizures. He watched the video that wetook and said that it was possible that it is seizures, but that he is 70% sure that it is not. We will have an EEG to follow up and he said to keep bringing her in if she has more than a few in one day.

I am semi-satisfied with that answer…but I *really* wish I could have gotten better video. I tried to explain that the tantruming has NOTHINGto do with the “seizure”…that she just HAPPENED to be tantruming when she did it and I caught it on video. She will do this while playing, after waking, etc with no crying or fussing or mouth hitting involved at all. She was only fussing in the video because she was done eating and wanted out of her chair -that’s all. lol

It was a particularly bad example because she already had her eyes closed when she did it as well. Usually she will be playing and then all of a sudden her eyes will roll back, then her head will drop back while her eye lids flutter for a few seconds…and then she’ll go right back to what she was doing before (sometimes she will rub her eyes after). I cannot stress enough that usually there is NO fussing, no crying, no yelling, no hitting…nothing…she will be fine one second and then…No crying after either. Nothing. This video was NOT a typical example, it was just the only one that happened while I had my camera rolling.

I am convinced that they are either absence seizures or that it is Sandifer’s Syndrome. The Sandifer’s Syndrome diagnosis makes less sense to me though since although she does have reflux, it has been much MUCH  better the past few months. Why would she start this new behavior when the reflux has been improving?

Either way, I’m not getting any answers so I guess I’ll just have to sit tight.

I did put her back on her reflux meds as well…just in case. She was actually on them during the video I took.

Oh, and someone  asked about her ears…they have been checked many times because she hits/pulls on them a lot. They have never found anything wrong with them. No fluid, etc. My guess is that that’s just how she expresses frustration (AKA “Mommy stop taping me and let me out of this chair, there are toys that need to be played with!”).

As for the CP, the doctor said she has good muscle tone and that they cannot diagnose mild forms until after age 2. Totally poop, I know only because I work in the field, but whatever. I’m getting too tired to continue to fight these doctors on every little thing. We’ll just have to wait and see how she walks, etc. ::sigh:: It wasn’t something I was really concerned about any way since she is hitting all of her milestones, but it would be nice to have the diagnosis if it’s there just in case she DOES end up having issues walking, etc…that way I wouldn’t have to fight for intervention at that point, it would already be in place.

* Work. Yes, I got a 10% pay cut and we lost our 401k. That’s all for now, which is not to say that it won’t get worse later on, but it was better than I was expecting and so that’s a great thing.

* Nolan. So far so good. This pregnancy is SOOO easy compared to the girls (knock on wood). My gut says that he does not have Down’s…but the not knowing is really starting to get to me. I am thinking about scheduling the amnio at my appointment next week (not having it DONE next week, just making the appointment for a later date). I know a lot of people feel very strongly that I should not have one done…and if I were not in my shoes at this exact moment I would very likely agree…but I just can’t stand it. I have too many other things swirling around in my head right now…I need to KNOW. I may not even tell anyone if/when/etc. We’ll see.

*What that enough random rambling? I wish I had time to write a better post, but I need to get some more work done before I can go home and it’s already 6:15. I promise to be a better blogger one of these days.

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9 Responses to “A Rambling Incoherent Update Is Better Than No Update At All”

  1. Michell July 28, 2009 at 6:28 pm #

    I hope that somewhere soon you start getting some answers soon. You have so much unknown happening in your life that I can’t imagine the stress you’re in.
    I’m sorry about the pay cut. That sucks. Question though. You lost your 401K? The part that you contributed? How does that work?
    Whatever you decide about the amnio will be the right choice for you. I for one wouldn’t do good with not knowing. Even if there was nothing I could do about it or nothing I would do about it I would still want to know. Good luck. Hugs to you.

  2. Sweet Georgia July 29, 2009 at 5:26 am #

    It’s so frustrating dealing with dr.’s and not getting straight answers. Keep fighting the good fight! Hope you get some good answers soo regarding Lennon’s health. About the amnio, I think I’d want to do it as well – just so that I’d be better prepared for what the future holds.

  3. Kate July 29, 2009 at 5:33 am #

    I am so sorry they couldn’t give you more answers. I hope you get them soon!

  4. Aunt Becky July 29, 2009 at 7:43 am #

    I’m frustrated on your behalf, love. Hang in there as best as you can. This will all pass. Eventually.

  5. S July 29, 2009 at 10:50 am #

    I’m glad you talked to the doc about Lennon. I’m thrilled to know that he believes it is not seizures. You know her best so go with your gut. I know you will. Hopefully after the surgery is over that little peanut will get all settled down and you can relax.

    Amnio….hmmmm. I was always from the school of thought that if you didn’t HAVE to have one that you should NEVER have an amnio. That held true til it happened to me! I’ve shared before so I won’t go into the whole story again but the amnio was much less of a procedure than I had aniticipated. I struggled with the decision but knew that I would never relax until I knew. You will make the right decision for you. I’m going to look for a website I referenced and send you the link.

    Hugs!

  6. noswimmers July 30, 2009 at 5:42 am #

    Thinking about you, your sweet girls, and your darling little boy. So sorry you have to go through all of this crap…and fight the docs on top of it. Ugh.

    xoxo

  7. Megan July 31, 2009 at 9:37 am #

    I hope you get some better answers soon, and that in the future you don’t have to fight the docs too much. About the amnio, do what YOU need to do, not what anyone else wants you to do. I would have it done if it were me. If anyone doesn’t support that decision that is their problem, if they are ever in that situation well then they can decide what they want without judgment just like you should be able to.

  8. twondra August 3, 2009 at 4:31 am #

    I’m so frustrated for you sweetie! Wow. I wish you could get some answers. Definitely keep us posted. The not knowing I’m sure is the toughest.

  9. Ms. J August 3, 2009 at 7:02 am #

    When is her EEG? Did you have that yet?

    I know how overwhelmed and exhausted you are (esp. emotionally), but have you considered a second opinion on the seizures issue?

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