A few months after Gare-Bear’s fall, he started having debilitating head aches. He would be playing along just fine and having a good time, when all of the sudden he would grab his head and start screaming, dropping to the floor in an uncontrollable heap. By the time I scooped him up and took him to the kitchen to get him some medication for the pain…it was over. Brief, but paralyzing.
This happened a few times before we could get him to our pediatrician. She did a thorough exam and did the normal (bang on the knee) type tests for any neurological problems. He was fine. She could find nothing wrong with him. So she chalked the symptoms up to allergies and put him on some nasal spray junk and a liquid allergy med.
Two weeks went by and there was no change. I called the pediatrician and got him in again. She checked him over briefly and then said that he just needed more time on the meds. ” This stuff takes time to start working. Just keep him on it and check back in about 6 weeks.”
As Gerrit’s “episodes” got worse and more frequent…I could not wait a stink’en six weeks. I called to see her again. She said that he was fine, and that I just needed to relax and let the medication work. I ended up telling her that I liked her very much and I meant no disrespect, but I was going to have to see another doctor about the headaches. She did what she was trained to do… but it just wasn’t enough.
The next doctor… was worse. The next one was nice, but basically said it was childhood migraines, and wanted to put him on some high dose of narcotics. I had childhood migraines and they did not come and go like that, and I was not ready to put him on narcotics yet. The next doctor was a waste of time, and so it went for months. I took him to doctor after doctor and all they wanted to do was drug him or make me out to be some kind of lunatic. Some socially deprived mother who got her kicks going to the dang doctors office. What is the name for that? Where a mom wants her kids sick so she can feel important or something? You know…. a… a… oh…shoot, I don’t remember the name of it, but you know what I mean…right? (So sorry. Remember… I am not technically minded! It’s okay, don’t feel sorry for me. I am used to it.)
Well, I had started keeping track of everything Gerrit ate, drank, did, played with and where he was when he did it. I had pages and pages of documentation that had no common thread. Nothing that I could find reoccurred consistently with each debilitating headache. I was frustrated and tired. Three – four months of searching for answers and seeing different doctors…telling the whole story over every time.
Then, I finally narrowed it down to when Gare-Bears blood pressure went up, he was likely to have an occurrence within a few seconds. We noticed that he would wipe his forehead as if to wipe away the beginnings of pain, just before it hit him hard. So I got him to a cardiologist. He did a thorough check and an EKG and said there was a slight heart mummer, but nothing to be alarmed about. He told us that Gerrit was just fine… basically a healthy little boy! At that point something snapped in me. I felt the weight of this problem on my shoulders and it was crushing me. I knew I was not crazy, and I knew I wasn’t making up that he had these headaches… My husband and older son as well as friends and neighbors had seen him fall to the ground holding his head. But even my husband at this point was starting to believe that I was “wanting” there to be a problem with Gerrit. He said that the doctors know what they are doing and if that many of them say he is fine, then maybe you should just let it go. That hurt.
But when a mom knows, a mom knows. And I knew something was wrong with my baby.
I wasn’t going to let this doctor get off so easy and I wasn’t leaving until he had another plan of action. He then asked, “So, how concerned are you about these headaches?” I will never forget those words as long as I live. It was a crack in the armor. A tiny hole in the brick wall I was climbing. A foothold… no matter how offended I was by the question… it was what I was looking for!
My hot headed reply was: (which is not my normal mode of reply!)
“VERY concerned! And if you won’t do any more here, then I will go on to the next doctor and the next, and on and on until I find one that will search my child inside and out…every square inch of him. And then if they can tell me that he is fine… that there is absolutely nothing wrong with him… then I may start to believe it. But at this moment… I know for a fact that he is not right. I’ve been around babies my whole life and I know these kind of headaches are not a normal part of being two years old and I would appreciate you trying to find out what is wrong.”
With wide eyes he said, “We could do a CAT scan on him if it would make you happy.”
“Why yes, that would be a great start!”
And thus began the hardest part of the journey.
To be continued…