First, I want to thank everyone so much for your prayers during all this with Elissa. I can't tell you how much it means to us - it means to me. I feel so comforted and uplifted by it. Thank you!
Before I talk about Elissa's doctor appt, I just have to share this "little" lesson God gave me today (just skip down if you would rather not :-]). Darin and I met at his Mom's house and dropped off Elissa and then drove separate to the appt. Darin asked, "Do you want to follow me?" and I said yes. I didn't remember exactly how to get to Mary Bridge and I hate, hate, hate being lost.
So we head out and Darin immediately turns right when I expected him to turn left. So I start thinking in my mind....what is he doing.....167 is closer then 18....I would have went left to 167 and then probably River Road.....THEN it comes to mind, hey you told Darin you wanted to follow him because you don't know where you are going, so just follow him and stop second guessing.
Can you guess what happened next?? God then says to my heart, this is what you do to me too. You pray and ask me for guidance, direction and answers.....I give them to you......then you second guess me. You often decide your way is better even though you often get lost. You've asked Me to show you the right direction, so give up your way and just follow Me. Humbling, to say the least. It has been God's "theme" for me this year.
So here is the UPDATE ON ELISSA:Darin and I did our homework before this appt. We read the book from John Hopkins University about childhood seizures and we did some internet research on the medication (Trileptal) that Elissa is on. We felt that there was a good possibility that Elissa didn't need to be on medication. We learned that over 70% of children do not have a reoccurance, there can be significant side effects of the medication and as scarry as seizures are - they usually do not do harm to the brain. Her having another seizure seemed a lower risk then the side effects from the meds. As well as the meds didn't significantly lower her chances of having another seizure. Our research in a nut shell.
So, soon into our appt I'm telling the doctor that we read the book and we are wondering if Elissa needs to be on medication. I bring out my book with flags sticking out everywhere and my notebook with a list of questions and a determined look. hee, hee :0) I'm sure she was thinking, "Oh, she is one of
those parents." She was very kind and indulgent and was very thorough in her explanations.
It came down to this:1) Elissa had a seizure that lasted longer then 30mins (1+ hr - unusual)
2) It didn't stop on its own
3) It took over 4 different meds to stop it (very unusual)
4) She said these words, "it was a life threatening situation" (a little choking up & tears)
5) She had an abnormal EEG that showed that she is prone to seizures
6) All of these above facts give her over a 70% chance of having another seizure
She also agreed that the
February 911 call was also suspicious - that it could have been a seizure she was so sleepy from. If it happened today, she would have assumed that Elissa had a seizure and probably would have upped her dosage.
So her recommendation was to continue on medication and we agreed. She will most likely be on medication for 2 years. They may do an EEG at 1 year if she has no more seizures. If the abnormality is not there, then she will talk about weening her off of the meds. But most likely they will do that at 2 years.
Otherwise, Elissa is doing awesome! She seems to be tolerating the medication really well. It took a few weeks for her body to adjust, but it seems like the side effects have dimished. We still feel that her moods are a little out-of-whack (more highs and lows) and that she is a bit clingy, which she has never really been. My biggest side effect concern, is slow learning. We have seen no evidence of this, but I'll be in close contact with her teacher for the first signs of any changes.
Thursday or Friday Elissa will have blood drawn to check her levels, which measures the amount of anticonvulsant in the blood to determine where she is in the "theraputic range". This is all very confusing, but it also helps determine how her body is tolerating the medication and whether she needs a little more or less. It also checks if she is having any liver problems, which is a very low risk side effect as well as low sodium levels.
So, you can be in pray about this.If there are no issues, we see the doctor again in 3 months and then every 6 months after that.
**UPDATE 10/13 - Elissa's blood work came back normal, but the Trileptal level is a little low. The therapeutic range is 10-15 and she was a 9, so the doctor increased her from 2.7ml twice a day to 3.5ml twice a day. She will have another set of blood work done at the end of December for her follow up appt early January.The final thing is, I asked whether Zach could have this problem too and the answer was - yes. It has been shown to be genetic. There is no test/screen that can be done to say yes or no. They could do an EEG today and show that he has the abnormality, but that does not mean that he would ever have a seizure - so you wouldn't take the risk of medicating him for the chance he might. Or his EEG could come back normal and then the next day he could have a seizure. They just don't know. I kind of wish I hadn't thought of this question....
So back to my lesson from God today.....I'm asking for direction on all of this and that I simply follow where He leads.
Proverbs 3:5-6
Trust in the Lord with all your heart and lean not on your own understand; in all your ways acknowledge Him and He will make your paths straight.
