This girl!

This girl!

Thursday, May 21, 2015

One medicine is not enough.

One of the conditions that Sophia has is epilepsy. We don't know whether it is related to her chromosomal disorder or not since there's no documentation of any other person with the same exact syndrome. But she does have it nevertheless. Sophia was diagnosed about 5 years ago and you can read here about it. She has been on the same medicine since that trip to the ER and it has worked well but we do need to increase the dose every year when she gets a little older and her body needs a little more of the med to control the seizures. I usually start noticing it's time to go up a bit when Sophia starts twitching or having partial seizures when she has no control of her saliva and although she is still there, I can see it in her eyes that something is wrong. This lasts only a few seconds at a time and then it goes away, but it makes me very nervous because I wonder how many times it happens when I am not looking and that's a very scary thing to think about. So, then we contact her neurologist and he increases the dosage and we go another year seizure free.
Last year Sophia got to the highest dosage that she can get from that medicine and she is taking it three times a day. When we saw the doctor a few months ago and she said that if Sophia had new symptoms we would need to add a new medicine on top of the one she is taking right now. Well, that moment is here. For two weeks now, Sophia has been twitching a bit which is the first sign that she needs a medicine adjustment, but there is a new symptom. Sophia is having a lot of tremors, lots! She shakes when she is sitting and tends to lean to the left and it seems as if she has no control of it. Sometimes it's so bad that I have to hold her hand when I'm feeding her so she doesn't fall of the chair. She has tipped over a few times when she is sitting and other few she has been able to catch herself. Sometimes she looks like she is spacing out but is able to come back as soon as I call her name. I called to move up the appointment we had for November with the neurologist, but after seeing the symptoms more frequent I called again and talked and asked to talk to the doctor and she agreed she needed to see Sophia a lot sooner. She asked me to take videos and Sophia had a couple of these episodes in the doctor's office so the doctor could see what we are dealing with. Her conclusion? Sophia has been having partial seizures and her medicine is preventing her from having full blown ones. She said that we could do a 48 hour EEG if we wanted to make sure but it's very likely that this is what it is, or we could go ahead and start a second medicine. I decided not to do the test. Sophia has had two EEGs and the results are always the same, she has a lot of abnormal activity in her brain, we know that. Sophia has epilepsy, we know that. What I want is to stop any type of seizure and if we need a second medicine to do that, then be it.
We will work our way up to the right dose of the new medication for Sophia, I will watch for any side effects and will address any problem that may appear, but most of all I will try my best to avoid a big seizure like the one that sent us to the ER 5 years ago. I don't want to repeat that experience ever again.
My warrior.


  1. Look how nice and tall she is standing in that picture! I can't get over how big she is getting! I think you are right in giving her the extra medicine to control her seizures. If it keeps her from suffering them, then it's a good thing. There's so much medical research going on in so many different fields, that maybe there's a new medicine on the horizon that will help her even more.

    1. I really hope so Dyanne! And yes, she is getting so big!