Tuesday, October 20, 2009

Frustrated

Warning: what follows is a rant...

Things were a bit rough around here this past weekend. Emily was very lethargic on her new meds. And when she wasn't lethargic, she was cranky and had crying fits that would last an hour. We have all be on edge. Mike and I aren't really sure what will set her off. So that makes us concerned, worried and a little frustrated.

Called the neurologist to make an appointment for next week. They have nothing available until November 6 and we will be meeting with the nurse practitioner, not the doctor. We met her last time and we were there for hours. She had to keep going out to ask the doctor questions over and over. Frustrating!

Asked the neurologist's office for a call back from the doctor to ask about Emily's reaction to her new meds. When they called back we didn't talk to a doctor, but someone else and were told that she should not get the meds on an empty stomach. Gave the message to Mike and he said she had been getting them after eating by mouth. So I called back to let them know this and was told to give it to her on an empty stomach and if things weren't better in a week then we should call back. Frustrating!

Called our pediatrician to see if she could refer us to a different neurologist. Nope, the group that we go to is the only pediatric neurology group around (unless we want to go to Cincinnati 2 hours away - which we are thinking about at this point). Frustrating!

One of our therapists wondered if hippotherapy might have caused the seizures. She is not the only one to mention this, actually. So we saw a glimmer of hope that maybe it would be a simple solution - stop taking hippotherapy and the seizures will stop and Emily could come off the new meds.

Talked to the PT that does hippotherapy and she could not say either way. She had not seen this happen in other patients and many of them have a history of seizures. She thinks it is just a coincidence that the seizures happened the day after Emily's first hippotherapy appointment. She said to ask our neurologist what they think. That is a great idea, if only we could talk to them!

I have spent the better part of 2 days making phone calls, doing research, trying to get some answers and help and in the end, I am FRUSTRATED!

Right now, we are waiting until we can meet with the nurse practitioner of our neurology group so we can bombard her with questions (so she can go ask the doctor). We will not be doing hippotherapy until we can talk to neurology about it. We will continue on the meds (Emily has been a little bit more like her self today and yesterday). She will need to have blood work done this week to check the med levels and to make sure this new med isn't wreaking havoc on her liver. We are considering going to Cincinnati for Emily's neurology, but haven't decided yet. We aren't really sure what therapy to do in the meantime (Emily did not react well when Mike took her to OT on Friday).

So to sum up, we have a lot of questions, not a lot of answers and did I mention that we are...you guessed it, frustrated!

I know that God is in control. None of this is a surprise to Him. He is the same God yesterday, today and tomorrow. I know that He will give us the wisdom to make the right choices for Emily. I know that He is with us through this trial. I know these things without a doubt. I just have to keep reminding myself of these truths when the stress level climbs. We would really appreciate your prayers at this time.

7 comments:

Kerrie said...

Dear friends, I'm so sorry to hear that this new med is giving you all such a hard time!! There actually is another neurologist in town. His last name starts with an S, I will ask our doctor for his name again if you'd like. However, our pediatrican said, "he's a great guy, but I wouldn't take my kids to see him." I am thinking we are going to just give in and take Aidan back to Cincy...it's a LONG drive, but we loved the doctors and staff there!! Praying you get some much needed relief from the stress!!

Mindy said...

Praying for you all and hope that you will get some definite answers soon. We love you and we're only a phone call away if there's anything we can help you with.

The Burts

CreeksideMom said...

Hey I just came across your blog and I want to let you know that I will indeed pray for you. I can't believe all that they have put you through. I hope you get some answers soon. I will keep checking back.

Michelle said...

Oh I would be so frustrated too! I'm sorry you're not getting any answers :(

and how scary it must have been to watch her have those seizures too! Praying for some answers soon!

Kristina said...

I've been thinking about you and Emily a lot lately. I really hope that you get to a better spot with the neurologist. I have to say, I would likely swoop Emily up and show up at the neurologists office directly and see where you get with them - without an apt. and without endless phone calls. (I have done this with Emma to her pedi. and the doctor took me immediately since she knew how upset I was to just show up - very uncharacteristic of me!). If you don't get very far, then I would absolutely make an apt. at Cincinnati. It has a great reputation and could take a while to get an apt. The worst that could happen is you make the apt. and then wind up canceling it if you change your mind, which, to me is better than making up your mind and having to wait weeks for the apt.

Saying some prayers for you.

Katy said...

I'm not sure what kind of medical machine you are dealing with, but we have similar problems. If I can get through to the neurologist, then SHE is wonderful, but her staff is frustrating. Really, there's an overall shortage of pediatric neurologists which is one of the reasons it's so hard to find one and so hard to get an appointment.

We do an alternative therapy called ABR. Occasionally, people have an increase in seizure activity when they start this therapy. The reasoning is that the brain is experiencing new things and firing in a different way. They've never had a patient not go back to the same level of seizure activity after a few weeks. Perhaps hippotherapy had the same effect on Emily--just got her little brain over-excited.

Wishing you good luck with what I know is a complete frustrating situation.

Anonymous said...

So sorry for the frustration but I must say you glorify God beautifully in it all. I pray this finds you better as we continue to pray with you and for you. I pray that today is a new day for Little Em.

Praying,
Lynn