In 2006, my youngest daughter Kylee, who was 10 at the time, started to complain of being dizzy "inside her head". The room wasn't spinning, she wasn't off balance, no headache, she just said her brain was dizzy.
Of course, that made us take a trip to our favorite Pediatrician. He did the expected things, a white blood count to check for infection or virus, glucose to check for hypo- or hyper- glycemia, and a thorough physical exam. All of these were within normal limits so he sent us on our way, with the typical instructions, "If it doesn't get better, bring her back".
Well, it didn't get better, and she continued with the same complaint, being dizzy inside her head. We went back to the Pediatrician, who again, performed the same tests as before with the same, normal, results.
He really wasn't concerned at all. Before him was a healthy 10 year old girl, with no obvious illness. Now, as most of you have figured out, I am not a very patient person, especially when it comes to my children and health issues.
My Pediatrician knows us well. He is the only Pediatrician we ever have used with either of our children. I respect him as a Physician and a Man. He respects me as a Mom and a Nurse. I made it very clear that I was less than satisfied with his lack of diagnosis and concern. He respected my opinion, but respectfully maintained his.
I love our Pediatrician. He is a wonderful, smart, caring Physician and quite honestly, had it been someone else's child or a patient of mine, I would have understood his choice/lack of treatment. I mean what was there to treat? All of her tests were normal. Here was a happy, thriving, 10 year old girl. Her only problem was that she had a very impatient, OCD, Mom that happened to be a Nurse.
That being said, at my insistence, our Doctor said he would refer us to somebody else, a specialist. So, he started with a referral to an ENT. This made sense, start with the least invasive, and work up.
We went to the ENT. It took him all of about 5 seconds to tell us her ears were not the problem. Cross that off. Next on the list, Cardiologist.
We went to see the Cardiologist, who ran a stress test which was normal and an Echo cardiogram, which showed a very, very slight leakage in one of her valves, so small in fact, he wasn't at all concerned about it and said we would never have known about it had we not had this test, as it would never have caused any symptoms or problems.
The Cardiologist was a kind Doctor, who listened to HER, and told us without a doubt, the problem was not her heart. He stated we needed to see a Neurologist, as it sounded like she was having either migraines or seizures.
He was also the first person to say we may never know the true cause of the problem, that we may be able to only rule out the major ones.
I got a referral for the Neurologist from our Pediatrician. He still maintained his opinion that we were not going to find anything but made the referral anyway, again, to appease me.
We saw a Pediatric Neurologist, who, we immediately felt comfortable with. He was very direct and straight forward. There was no sugar coating it or beating around the bush.
He was the first person to get it. I mean really get it. He understood what she was feeling and what she was describing. He knew what she meant when she said her brain was dizzy. He told us the same thing the Cardiologist told us, most likely migraines or seizures with the possibility of never finding out.
He scheduled a MRI and a EEG.
Ive told you before what a terrible patient Kylee is. I wasn't kidding. She always has been. It's bad when she is well, but it is a gazillion times worse when she is sick.
The feelings of dizziness left her scared and confused. Heck, I was scared and confused. She was in the 4th grade, and most of the episodes happened when she was at school. It scared her because she felt weird and didn't understand why, but also because she didn't want to be different. We all know how kids can be.
I cried out to God that He would touch my baby. I knew without a shadow of a doubt He had given her to us and I wanted Him to do something. To fix it, to make it better. TO MAKE IT GO AWAY!!! I wanted to be so strong for her and everybody else, but I was scared to death.
I don't share my feelings often or very well. That is why this blog has been so therapeutic for me. I usually keep everything inside, again, to be the strong one. I don't want anybody worrying because they see me worry. Plus, truth be told, I want to be a strong person, and not a weak person. Let me stop and clarify this, I don't think people that share their feelings are weak, but, In my crazy mind, I think other people will think I'm weak.
So, I carried on, with a big smile on my face, telling my Husband, my Mom, and my Friends that everything was going to be ok, and that I was ok. I was very good at fooling everybody into thinking I was ok. Truth was, I was literally trembling on the inside with fear. Fear of the unknown, fear of the what if's, fear of the known, fear of the tests, and the poking and the prodding, fear of being TOTALLY helpless and out of control and unable to "fix it" for your child like a Mom is suppose to do.
Even though I love and respect our Pediatrician, I was a Mother literally fighting for her child. I was bound and determined we were going to get to the bottom of this. For her to complain of her head being dizzy, and KNOW complaining was going to land her at the Doctor, I knew something was going on.
EEG and MRI.......
These were scheduled by the Pediatric Neurologist to be done
November 6, 2006. She was terrified at the sound of these tests. I was terrified at their results.
We had people everywhere praying, for not only the results of these tests, but for Kylee during these tests. I knew she would be inside the MRI machine and would have to remain completely still. I knew that would be overwhelming to her. Thankfully, they let me go in the MRI suite with her.
I sat at the end of the MRI machine and told her I wouldn't leave and I wouldn't take my hand off her right leg. Isn't that just like God, He may not keep us from going through certain things, no more than I could keep Kylee from having to go through that test, but He stays with us the whole time and never takes His hand off us. I like that.
I guess I could have kept her from the test but it wouldn't have been for her own good. We needed that test to know what was wrong with her and what to do next.
God allows us to experience things for our own good. He knows what is down the road and what we will need to equip ourselves. That's good, isn't it.
Anyway, much to my dismay, with the help of the One True God, Kylee was a dream patient. Yes, you read it right, Kylee was a dream patient. In fact, as soon as the MRI was completed, the Technician said, "You did great, I wish my adults would act as good." If I had not been there, I would not have believed it. She was the perfect patient.
I told her how proud I was of her and asked her how she was able to lay there so still. She quickly replied, "I knew I had to do it but I knew you were right there with me, Mom. I could feel your hand on my leg the whole time".
Even as I remember this now, it brings tears to my eyes. There have been so many times I didn't think I would make it through, I didn't think I could go one more step, but I knew I had to and I could feel His Hand on me the entire time.
They wouldn't let me go back for the EEG. She said it was a piece of cake. She was less than thrilled at all the conduction gel that they put in her hair, and actually told them they needed to keep shampoo in their bathroom so that people could wash their hair when they get finished. I'm not really sure where she gets this bluntness from, snicker =)
Once all the tests were finished, we met with the Doctor, who spoke three words that would change our lives forever.....Complex Partial Seizures.
Part 2, Soon.