When you come to the end of your rope, tie a knot and hang on. ~Franklin D. Roosevelt
It has definitely been one l.o.n.g week. Emma has been put on a new medication and boy has it been rocking her {& our} world. A few weeks ago she saw a new Neurologist who prescribed Tenex for her impulsiveness and ADHD. We then cleared it through her Transplant team. It worked like a charm except for the fact that it bottomed out her blood pressure. We were scared to death that she would faint so we kept her home 2 days last week. { I won’t even begin to tell you how many times the pharmacy messed this drug compound up.. it was ridiculously insane.} So sadly, we had to scratch the new miracle working drug.
Her pediatrician then found an extended release version of this drug called Intuniv, which only comes in 1mg dose and is a pill. Emma has never taken pills, but we decided to try it. Getting her to swallow it was like trying to ride a wild bull but we finally were able to get it to go down. The main side effect is drowsiness, but because it was an extended release tablet we {Mark, I and all of her doctors} decided that it would be safe at this dose. Emma is such a lightweight {40lbs} and it knocked her on her rear end! The school finally called me this afternoon and told me to come and get her because she was so drowsy that they were having to carry her when they left the classroom! I called her pediatrician again and told her that this was not going to work and if we couldnt get this drug in suspension form at half the dose she would not be able to continue taking it.
I would rather have the old sweet yet often rambunctious non-compliant Emma compared to this.
All that to say she has been sleeping soundly in her new bed with Monsters vs Aliens in playing in the background for the last 2 hours.
{don’t ya just love the way she sucks her fingers!
There is a great story behind that, but I am too tired to tell it now!}
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{ 11 comments… read them below or add one }
Hope you can get the med straightened out, and soon.
Praying your girl will be feeling better soon. I can completely understand why you would prefer to have the vibrant side of Emma back.
{{{hugs}}}
Hang in there!
Interesting about the Tenex. Tenex has been suggested by my 12-yr old’s neurologist to control tics, he’s never been on anything and I’ve been resistant since most of the time his tics are mild. Medications can work miracles but sometimes it seems like you solve one problem and create another, its a balancing act.
@Kathy:
Emmas Neuro said it would also help her “tic like tendencies”. It worked miracles with her, but because she is a heart transplant patient, the lowering of her blood pressure was a big deal. If she didnt have heart issues, she would still be on it.
Good luck to you and your son! You are right, it is a balancing act
Thinking of you guys as you find the solution that works for you.
xoxoxo.
WOW…i want to just reach through my computer and hug your precious little girl! With tears in my eyes as i read her story, I am beyond amazed at how our Father loves us so much. I will pray for he and you too!
xo jen
I’m sorry this has to happen. I really really admire your courage. You don’t even sound too frightened nor sorry for yourself / Emma.
I agree with Kathy, sometimes, medications can solve a problem and create another (sometimes worse). It’s really difficult when you have to have medicines like these.
Hugs….
You’re family are in my prayers. It can be hard when you yourself aren’t well but watching your child it can be even more difficult and frustrating. Hang in there.
Praying for all you guys. :]
Hi Heather,
You look great. I have been thinking about the faith you have and had, When faced with the “obstacles in your life, did you repeat and claim God s word in that time? How did you go on?
Ohhhh sweet little Emma!!! I hope you are able to find a solution!!!
It has been ages since I stopped by – but I have been reading your posts at (in)courage and your tweets. Happy Thanksgiving!