Wednesday, April 28, 2010

More seizures

Unfortunately, our 12 day streak with no seizures came to an end this afternoon. Today Meredith had 4 seizures. All of them similar to her other recent seizures, about 2 minutes long each. The good thing is she was not at daycare, she was home with Greg who had taken a vacation day today. We are discouraged, but not too surprised. We emailed the Neuro and he'd like to increase her dose of Trileptal again. In the meantime, Greg and Meredith had an interesting appointment with the Geneticist today. Dr. Harris and Greg talked about the introduction of seizures and whether or not this points toward any new syndromes. The doctor came up with a list of 22 potential syndromes that fit her revised list of symptoms. Then they cross-referenced all of them with what she has already been tested for and came up with.... ZERO new syndromes to test for. She has already been tested and cleared for every single one of them. Our little girl is truly a medical mystery. In fact, the geneticist asked if we might be interested in having her take part in a medical study that the Chief Geneticist is conducting on Microcephaly (small head measurement). This doctor felt that the Microcephaly alone could explain a large part of what's happening. But as we are accustomed to now hearing, no one knows. Little is known about Microcephaly and its prognosis. Especially in Meredith's case, since it does not appear to be associated with another syndrome or illness, as it often is. Her head has continued to grow on it's own curve, but she is still extremely delayed. It's hard to accept that we may never get any answers. But I get the feeling that over time, finding that "answer" becomes less important. Having an answer really doesn't change anything about this situation. But the wondering is very difficult. It's hard to constantly wonder - why did this happen? Was it something I did when I was pregnant? Is it genetic? Was it a fluke? Were we just chosen to be Meredith's parents because she needs us? Would it happen again if we had another child? There is a lot of guilt and a lot of fear associated with not knowing. The list of what if's and why's is endless. But that is a challenge for Greg and I, not Meredith. Our parenting experience is absolutely nothing like we had imagined and it is truly unique. We will learn to adapt and over time stop wondering why, and learn to just accept and appreciate what is. Meredith is happy. She doesn't know she's different from other children. So while we still have no answers, we are feeling at peace with this whole genetic testing process. We feel obligated to go to extremes to find any scrap of information that may help her, but in the end, we are actually comforted by not having a label for her condition. As my dad so simply put, she is who she is : )

8 comments:

  1. She was so happy when I saw her this morning. Who would have thought she would have such a rough day. It's not fair!

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  2. I know it's hard, as I struggle with this also, but you can't feel guilty. I follow your blog, you do great with her! Cut yourself a break and love her....that is the most important thing. (((hugs)))

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  3. I'm so sorry you (and Meredith) had a very very rough day!!! I know the guilt feeling, and its hard to kick, but we truly are doing everything we can to enable our sweet girls. And, I also relate to the "unknowns" without a reason for the delays, etc., but I remind myself often that without a label, there's nothing to compare our girls to, and so the sky is the limit, right?! Thinking of you and that sweet girl!

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  4. I can completely relate to your feelings. We rec'd a call from the neuro today letting us know that the chromosome mapping is delayed (due to insurance). It didn't even bother me. She is happy and healthy and knows nothing about being different from other children her age. I wonder the same things: did I drink/eat something wrong, was I exposed to a chemical, etc., was I "specially" chosen to raise this sweet little soul?. Just wanted to let you know you are not alone.

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  5. I didn't want to read and not comment. I can so relate to what you just wrote. Our genetic testing came back normal also which was a HUGE relief, but doesn't answer any questions. I constantly wonder what I could have done differently during my pregnancy. I would do ANYTHING to help Bella, and I feel so helpless! I'm so tired of seeing geneticists/neurologists and hearing Bella is an interesting and puzzling case. I don't want her to be interesting...I would give anything for boring and average! Thinking of you and your beautiful girl...

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  6. I came across your blog while looking up microcephaly and had to comment. My daughter is 6.5 years old with diagnosis' of microcephaly, epilepsy, severe global developmental delay, and on and on. We have done genetic and metabolic testing for a thousand (or so it seems!) things and have yet to come up with an underlying diagnosis.

    As you said, the more that time goes by, the less that "answer" matters. She is a happy and incredible little girl! :)

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  7. I'm 31, almost 32 and have been having grand mal seizures since I was about 17. Let me tell you, it sucks. I can usually tell when one is about to come. I become foggy and unable to concentrate. My hands and feet become real cold but sweaty. My stomach hurts and I feel nauseous but can't throw up. I become extremely uncomfortable and fidgety. All of those feelings happen for about an hour or so before hand. It's not the best experience. Even if take more medication when I feel one coming I'll have one. ----- At some point I gain consciousness after I don't know how long with the worst headache and no memory whatsoever of what happened prior or minutes after an episode. Occasionally I'll bite my tongue or cheek. I've tried almost every kind of epileptic medication and I still have breakthroughs. My long term memory is slowly deteriorating. There is nothing I can do except to spread love, pay it forward, and enjoy life while I am still able to. I am content and have accepted my future. When you notice someone having a seizure or about to have a seizure, try to put something soft under their head and stand back. Don't hold them down. They will eventually snap out of it. that was how a friend ask me to email aishatheorginal for help , iam free now if you have lost hope now there is hope EMAIL. aishatheorginal@gmail.com or aishatheorginal@yahoo.com for your help or call +2348148345303 there is hope now friend

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