This girl!

This girl!

Thursday, July 23, 2015

Are two medicines going to be enough?

A few weeks ago, I wrote about Sophia's epilepsy and how she maxed the medicine she has been on for about 4 years. Every year we needed to go up a bit until we can not give her anymore and had to add a new medicine because she started having small absent seizures. The neurologist had a list of medication we could try and out of two of her favorite to try, we decided to start with topiramate (topamax) because the other one tends to lower the platelet count and it turns out Sophia's is already on the low side. The topiramate could affect the kidneys but we checked with our nephrologist and she gave us the ok. The plan was to start with a low dose and increase every week, but after the very first day on it Sophia seemed to be seizure free. I talked to the doctor and we agreed on stopping at one pill a day. I was so happy that things had worked out fine, it was easy and fast. Well, not for long, After 4 weeks of being on one low dose Sophia started having absent seizures again, we called the doctor and we went up to one pill in the morning and one at night which worked for a week. Then we had to increase the dose to one pill in the morning and two at night because she had a full blown seizure. Eric and I started to check the clock and by 3.5 minutes I was thinking about getting the emergency medicine ready (which I am so grateful we have never used) when the seizure stopped. It's amazing how 4 minutes seem like 4 years when you see your child struggling. What kept me calm during the whole thing (calm enough to take a video so I can show the doctor) is the fact that this time Sophia was breathing the whole time. 5 years ago when she was diagnosed and she had that horrible seizure, one of the scariest things I have ever witnessed! Sophia was turning blue and she was drooling uncontrollably. One horrible night for sure!
Now we are up to 4 pills a day! two in the am and two in the pm. Last Sunday Sophia had 3 short seizures in a short period of time, and these are full blown seizures with her eyes going back a little bit and twitching  her leg and arm. They lasted about 2 minutes each but thankfully she was breathing the whole time. So I called the doctor, again, and she asked me to increase the dose once more. Last week Sophia had a 48 hour EEG test and she didn't have any episodes during the length of the test, (it figures) but I hope they are able to see what's going in that brain of hers.

There's one more thing going on right now: Sophia is having tremors. They started about the same time she started the seizures again, she shakes, leans to the right and can't keep her balance and she has fallen several times when sitting and also when standing. We even have to hold her sometimes when we are feeding her because she can't keep her head up. Some days these tremors are very mild but other days they are really bad. I have reported this to the doctor every time I talked to her and she keeps increasing the dosage, she hasn't said that this is a secondary effect. I am not so sure about that anymore, I'm not sure if maybe I haven't explained well what the tremors looks like so I took a video of a seizure and another of the tremors in hopes that the doctor can see and be sure that we are doing the right thing by increasing the medicine so fast.
I want to get the seizures under control of course, but if these tremors are a consequence of the medicine we are using it'd be too bad to see my baby girl not being able to practice walking and standing on her own because she can't keep her balance. It's so hard to not know what the right thing to do is.
So this is where we are right now, I hope the doctor watches the videos soon and tells me what the next step is. Fortunately this neurologist is very understanding and listens to my concerns, she seems to have Sophia's well being as a priority and with that in mind I'm hopeful that we are going to find a solution soon.

I hate to see my baby girl going through this, but the falls from losing her balance and the exhaustion she seems to feel after a seizure haven't stopped the smile she always has on her face, like her teacher said: "nothing gets this girl down!" True that!



10 comments:

  1. If the tremors are a side effect of the seizure medicine, hopefully another medicine will work for her. You are so smart to take videos to show the doctor! Sophia's 48 hour EEG test was kind of like taking your car to the mechanic because it's making a funny noise, and OF COURSE, it doesn't do it for the mechanic!
    Hang in there, Natalia! You and Eric are doing great with Sophia.

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    1. Oh, and I see that Sophia has lost her front teeth! Makes her smile even cuter!

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    2. Ha ha ha. Yup, just like the car thing!
      Thank you so much for your words Dyanne! And yes, Sophia's smile is cuter toothless!

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  2. Hopefully you find something for Sophia. In the meantime, keep your spirits up so they don't crash and burn.

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    1. You are right! Seeing her smile makes things a little easier.

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  3. Hope you see her get control soon! Wish I had something positive to say here but I'm so sorry things can be complicated, seeing a lot of that lately with AEDs. I have never thought our child's medical situation is complex until recently. Specialists could handle things well before but we have moved outside the comfort zone for some of them - wish they were all as great as kiddo's neurosurgeon. He handles uncertainly with grace, an open mind, and a sometimes can pressure on other docs to get their act together.

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    1. Thank you so much! To just know that we are not alone helps a lot!

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  4. UH to the balancing of medicines and side effects! She does look so cute with her missing teeth! My son is still waiting for that to happen. I so hope you find the perfect blend of meds for her. Hugs and love to you!

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    1. Kristi, the loosing her teeth it's only thing that's happening right on time, funny huh? Thank you so much for the hugs and love!

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  5. Amiga:

    Que difícil momento, pero sé que así como han logrado avanzar y tener fe, este solo será un impase que con la ayuda de los médicos sabrán salir adelante.

    Espero de todo corazón que nuestra hermosa princesa a mejore y que nada en el mundo pueda robar esa hermosa sonrisa que nos hace tan felices.

    Un abrazo rompe huesos te quiero y te admiro mucho

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