Total Freakin’ Crapshoot

What She Wore: Khaki shorts; khaki tee with a scoop neck and blue, yellow, and green stripes; blue flip-flops.

What She Ate: So far today, almost two giant cinnamon rolls.

Last night I had this major realization. An “oh sh__” moment, if you will.

We discovered that Charlie had a pretty severe seizure disorder sometime around December. After I cried my eyes out, I paid a visit to his neurologist. Have I mention that I’m crazy about our neurologist? Now, I’m even more crazy about her. Hell, I need to go buy her a present or something. The doctor suspected that Charlie had a pretty rare form of seizure disorder. It can be hard to detect in children with a previous brain injury because often times the EEG is inconclusive. What is clear is if the disorder isn’t treated post-haste, then the child will lose ground developmentally and will probably not progress as far as they could.

So, right after I found out what was going on with Charlie, well, first I cried a lot. Then, I did a ton of research and talked to his neurologist about our course of treatment. His neurologist is the kind of doctor that is very good, but is hard for some parents. She’s brutally honest. She told me herself that she had to ask another neurologist what to do about Charlie’s case. You see, when a kid is already behind developmentally, it’s a toss-up as to whether or not you should try the most aggressive treatment. Basically, the doctors have to ask themselves if it’s worth it to put the whole family out for months when the kid has already got some issues. If seizures are their only problem, then the answer is clear: do whatever you can for this child. For children with a host of issues, things are a little blurrier. The doctor told me, “I had to ask my colleague if I was getting too invested.” At the time, I didn’t understand what she meant by that. Last night, it was as if a light bulb went off.

As part of this whole “my child has cerebral palsy” thing I read the blogs of other people who have kids with CP. Reading the blog of another parent, I saw that their child had seizures. I also read that their neurologist felt that there were too many issues associated with anti-epileptics. The decision was made not to treat the disorder.

Whether or not this is the right decision I really can’t say. It’s not my child and every child’s brain is different and every child’s development is different. Some children have horrific side-effects as a result of anti-epileptics. Charlie responds fabulously with little or no side-effects. I do know this: I am so grateful that our neurologist thought Charlie was worth the fight. I’m glad she’s invested. I want to give Charlie the best shot he can have and it scares me to think that some doctors might try to sell him short. It’s just such a crapshoot what kind of doctor you’re going to get. I’m so happy that the odds were in our favor on this one.

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  1. Anonymous says:

    It’s a great feeling to have someone who is personally invested in your well-being taking care of you. I have had nurses like this and I know it is something to be treasured.

    I am glad you have this in your life.
    Take care of yourself and Charlie,
    PS thanks for coming by and saying hello.

  2. Elizabeth says:

    “I am so grateful that our neurologist thought Charlie was worth the fight. I’m glad she’s invested.”

    That makes for a kick ass doctor. And certainly she felt that Charlie could stand up to the challenge. That little darling inspires me and puts a smile on my face.

  3. desperate housewife says:

    Having a doctor really in your corner can make all the difference. I feel like I’m always in search of “the” OB-GYN, pediatrician, dentist, etc.

  4. That is so good to hear! Keep fighting for Charlie! He is doing so well!

  5. Nadine Hightower says:

    Is that gramps???

    I am so glad you have found a great doctor!! Team Charlie needs to be the best!!

  6. I’m so glad that Charlie is surrounded by people who seem to truly care about him and want to do all that they can – not just families but all the therapists and doctors, they all sound so great. Yay for Charlie!!

  7. Charlie does not have the time to be around people that do not want to be vested in his future. He’s too busy succeeding…

  8. Yay for a good doctor!