Saturday, January 03, 2009

Update - it's a long one.

I realize it's been almost a month since our last post, but not too much has changed. He seems to pick up something new every week which keep the seizures lingering. I always feel like a downer, so I've been avoiding posting, but we have a change coming that we feel hopeful about improving his quality of life.

We had a Dr.'s appointment on Wednesday. It was our first since the end of September. My one objective for the appointment was to convince the epileptologist to get Hewitt off of his current medicine and hopefully onto something else or nothing at all. When we changed Hewitt's diet and saw such a huge reduction in seizures, we also have seen progressively worse behavior from him. It has made life really difficult especially this last month and it's frustrating because with all the increase of seizure activity I just want to love on him, not be disciplining him all the time. (in love of course) But, the kind of behavior we're dealing with is beyond anything we've ever seen with him. The Dr. and I did not see eye to eye on the level of importance for our family and his behavior. She basically told me that I need to realize Hewitt has a difficult to treat type of epilepsy, there's not an easy fix and that I need to be willing to live with some side effects...I told her I don't think it's unreasonable for me to want to take my child off of a medication that changes who he is as a person. She was completely defensive, condescending about our situation and made me feel like we need to start looking for a Dr. that will be part of a team with our family and get their ego out of the way. It was so hard to keep my mouth shut through all of this. I was furious that she felt the need to tell me that Hewitt's condition is complicated and not easy to treat. GIVE ME A BREAK LADY! We've been doing this for 9 months, if there was an easy fix I think I would've found it and probably BEFORE YOU. I can't figure out what my problem is. Dr.'s don't respond well to my input on my child's condition. They can't seem to acknowledge or respect the fact that I know something, that I've spent some serious time researching and many times know more about a certain medication and efficacy of a treatment then they do. I'm sick of it. I don't come into appointments arrogant acting like I know it all. I do come in acting like I'm informed and have the ability to make decisions on Hewitt's behalf. My job as his advocate is not to make them happy, it's to make him well.

So, enough whining about the appointment. This is where we're at now: she only offered me one other med option and she knew it was one I won't use - she even said that as she offered it. Our next step is to start the Modified Atkins Diet. Hewitt will be on 10g of carbs a day! We haven't started yet, but we're hoping to start next week. She also switched his medicine to a tablet form and we had to reduce it by about a 1/4. The liquid solution has sugar in it so we need to switch to the tablet form for the diet. Since we've started this reduction Hewitt has been having massive amounts of seizures again. We're hoping it's just an adjustment, but it's been quite the throwback to see so many again. He's back in his helmet fulltime and we hope things will calm down within a few days. Please pray for his safety as he's already had some really brutal drops and his face his getting all bruised up again. He's resisting his helmet a lot more than he did before.

That is where we're at. I appreciate all of you that have been asking me how things are going and wondering why I haven't posted. Now you know!

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