It's been awhile since I've updated on where Kate is health wise. When she first got diagnosed with the Epilepsy and put on medicine (which worked immediately) it was easy to forget anything had ever been wrong. The whole process was so quick and seemed resolved so easily. However, about 6 weeks ago we began seeing seizures again. These were different then the initial seizures because she was waking from naps and nighttime sleep. She would be going through a series of little all over twitches when we would go to check on her. She would have 4-5 twitches and return to normal. I called the doctor and she increased her medicine dose and told us to call back in 2 weeks with an update. We saw decreased seizures but not total disappearance. So, I called again but the neuro didn't want to do anything else just then and said to call if things continued.
Well, they have continued and seem to be worsened. David and I both feel like she is having seizures at times during the day that don't show any symptoms. There are moments when Kate will be totally fine and playing or eating and then will suddenly begin to cry and become very upset. She is also continuing to have the seizures that wake her up at night. After I called the neuro again she ordered a 24 hour EEG. It's scheduled for the 24th of March. This means Kate will go in in the morning to have the electrodes placed on her scalp then we'll go home and she has to wear them for the next 24 hours. If there is any seizure activity the neurologist will be made aware of it promptly incase we need to make any medicine changes. It's obvious to me that a medicine change is needed but I think the doctor needs more info to go on then our rather vague reports.
I am relieved that Kate is going to have the 24 hour EEG because I really feel like we need a better picture of what is going on with her. I am really hoping some seizure activity shows up because I know she is having seizures and I want her to get the treatment she needs. I am also really nervous! How we are going to keep her from ripping the electrodes off over a 24 hour period I don't know. Hopefully she will forget they are there after a time. David is going to take the day off from work to be home and help. I don't think there's anyway I could care for Sam and keep Kate happy and distracted enough otherwise. I'll update once we have the results of that.
On the developmental front, David and I finally took the plunge to have Kate evaluated by Mecklenburg county's child development service. We have a number of friends who used this service for their children and were/are very happy with it. Our experience thus far has been very good. I had the initial interview with the case worker yesterday morning and I really like her. Kate has a hearing and eye exam on Monday and then on the 31st of this month the case worker, a speech therapist, and a psychologist will come to our house and do the actual eval. They test Kate in 5 different areas of development (language, gross and fine motor skills, social, and cognitive) and we will get the results that same day. If she is 30% delayed in one area or 25% delayed in 2 or more then she qualifies for therapy through the county's program. If she doesn't qualify but does have delays they will help us get set up with some other venue.
To be honest I'm kind of hoping she does qualify! Her slow progress in talking as well as in understanding what we say to her has been frustrating to both David and I. She is able to communicate her wants/needs pretty well using just one word at a time but we really want to see her grow in knowing how to put words together to express her thoughts out loud! It's truly hard for me to imagine her ever talking. I can't even picture what it would be like to have a conversation with her, however rudimentary it might be.
If you took the time to read all of this, thanks! I certainly wish that we weren't facing all these things with our little girl. I wish she didn't wake up crying from seizures. I wish she would sit and let us read a book to her, or pretend to care for her dolls, or know what to do when I ask her to get a diaper for Sam. I know all these things will come in time even if I can't imagine them actually happening. And I know God has made Kate. He made her the way she is for a reason. Probably many reasons. He will give us the grace and wisdom to care for her as we ask him for it. He can heal her of her seizures so that she doesn't have to be affected by them. She is a precious girl and I love her so very dearly. I want to help her in every way we can!
3 comments:
First of all, I'm struck by how well you communicated this snapshot of the plans, thoughts and emotions that you (and others) experience when facing these kind of issues. Thanks for putting it into words and sharing it. I doubt I effectively communicated when we were starting the process with our kids. I got so many unhelpful and perplexing responses from people. I'm sure this helps people understand what you are going through. Plus, years from now you will able to look back on these posts and testify to God's faithfulness.
I'm so sorry that the seizures have been difficult to control. :( I will be praying that the EEG is helpful and that Kate is able to get some quality therapy quickly! We have seen firsthand the immense benefit of quality therapy (especially when you carry it over into day-to-day life) and the brain's ability to rewire and make new connections. Let me know if you ever want to talk about experimenting with some of the natural/diet approaches. :) Occasionally they are helpful for epilepsy, too.
I am so excited to see how the Lord uses all of this! And i am excited to see what the next few weeks hold for her and you. Love you all SO much! Praying for the desired reports!
Hi Anne,
I will be praying for Kate as well. Let me know if you need any info. on the 24 hr. EEG. I have hooked up a ton of them on kids. As far as keeping the electrodes on, they never have any problem with that. They use a “glue” called Collodian and that works great. They will use a little bit of Acetone to take them off. Both smell a bit but as soon as the glue dries, or they are done taking them off, you won’t smell anything at all.
These are also very helpful in diagnosing the type of seizures she is having, which tells them the best Seizure meds and doses. A lot of seizure activity shows up when she is going in and out of sleep. Kind of like it catches the brain “off guard”. Even if you do not see any clinical seizures, there is still a good chance that it will show the Abnormality. My teacher always said that if they are having seizures, it’s because something different is going on in the brain, so it will show up even if you are not seeing any clinical Seizure Activity. They will also have an “event” button for you to press if you do see anything odd going on. They review the whole thing, but they will give “extra attention” to that part of the recording.
And yes, I am an EEG Freak. Ha. Let me know if you ever want me to read it with you, if you have them make you a CD of it. Love you all muchly! Teadles.
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