You may or may not remember (it was quite a while ago) that we had to take Sophia to the pediatric neurologist due to a strange leg stiffening behavior that we noticed was getting a bit worse. And on August 1, we had to have an 8 hour long EEG done on her....it was a super long day.
Well, it was even longer waiting on the results. When the appointment concluded, they told me that it could be as long as 14 business days before the results were read and interpreted. I am not a super patient person when it comes on waiting to find out any type of results...but I did understand that to watch 8 hours of video and compare it with 8 hours of brain waves would take some time. Plus we were getting ready to be super busy with family coming into town, moving my brother and moving ourselves. I figured the time would fly by.
It sure did. Before I knew it, it had been three whole weeks since the study had taken place. On the one hand, I figured that if something was wrong, they would probably call me immediately. But I decided that I would call the office just to see what the status was (and possibly remind them we were anxiously awaiting results). The lady I spoke with said that the report was in, but it just had to be interpreted. She said that I should expect a call by the end of the week. And that was it. So I waited.
When the week passed and I still hadn't heard anything, I somewhat started to get annoyed. But, in the back of my mind, I was thinking surely they would contact me first thing if there was something to worry about. I placed another call to the office, left a message, and waited again.
By the end of that day, the same woman from the office that I previously spoke with called me back. I will point out that Michael was out of town this week in San Diego for a work trip....he had been gone exactly one day out of a four day trip. The woman told me that I needed to come in, that the doctor wanted to explain the results in person. Um, what??? Last week, she didn't say anything about me having to come in to hear the results. I was totally thinking the worst. I let her know that originally they had scheduled a follow up appointment for us that was to happen the following week...but she said that I needed to come in in the next few days and made the appointment for the first time that the doctor was available. As soon as I hung up with her, I called Michael. He wasn't going to be back in town yet to go with me. And he was sort of thinking the same thing, that it probably wasn't just nothing if they needed to tell us in person. Thankfully, my Mom offered to come with me.
At the appointment, the waiting room was packed. We were totally on time, but had to wait quite a while before we were called back. Sophia wanted to stay in the waiting area and play with the toys there, haha. Finally, we were able to see the doctor.
She immediately said that there was NO sign of seizures happening with Sophia. Huge exhale on my part. I think that was probably the worst case scenario. However, the doctor that interpreted the results felt that the movements she was making was in line with a neurological disorder called dystonic posture. It is a movement disorder. I linked the basic description of the disorder...too much googling can really be scary (and the doctor said DO NOT go crazy looking it up....she must know my husband and me, haha). The doctors felt that starting with a seizure medication at a low dose could hopefully help control the disorder....it doesn't seem to be something that is curable, more like maintained. She did say that they do not want Soph to continually be on medication, so hopefully it will help to lessen the symptoms while she is taking it. I feel somewhat nervous about seizure medications, as I was taking one for prevention of migraines and it did NOT work and had some side effects. I totally googled the medicine that Soph has been prescribed (Trileptal) and its side effects. (Side note...if you or anyone you know takes it, please let me know if there are any strange effects from it....) The schedule we are on with the medicine gradually increases it until we are at full dosage after four weeks. We just started the third week....I can't totally tell if it is helping...maybe because we aren't at full dosage yet. Some days I think it might be...and then other times it doesn't appear to be doing much. We have to go back to the neuro in early October to discuss how things are going.
I completely feel like the news wasn't nothing, but it wasn't the worst case it could be. While I wish it really was just nothing, I am very thankful that it is not something worse, like seizures or any nerve issues. I am appreciative to the pediatrician for not dismissing my concern and referring me on to the neurologist.
I think everything will end up being ok with my girl. I do NOT want her to be on a different medication for the rest of her life...but I am willing to give this one a shot to see if it helps with her condition. I definitely like this neurologist a lot better than others I have seen (ahem) and feel like if I have an issue or concern I will be taken seriously and we will be able to work together to find different solutions to help my child. For now, we are just taking things one day at a time. Please keep my sweet Soph in your thoughts! :-)
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