Today Emily is really paying for her fun day on Friday – it is very typical for EDSers to be worse the 2nd or 3rd day out from overdoing. That is our sad reality – a couple hours of fun and days of pain to pay for it.
In addition to being in terrible pain all over,Emily has an awful headache today – the kind where she can’t even leave her room and wants silence and solitude. It is 2:30, she is still in bed. Awake but in such pain. I think this might be the worst she has been and that is saying something.
She finally took me up on my offer to bring her lunch back to her. I know it is just the pain but she gets pretty grouchy when she is in this state. She finally asked me and the dog to leave because she just couldn’t bear the noise we were making – and we were trying to be quiet.
So, she is eating her lunch alone in her darkened room. Unable to face the noise and light in the living room.
I finally talked to my husband about a week ago regarding her headaches. I am starting to suspect Chiari Malformation as a possible explanation and finally got the guts up to mention it to him. Unfortunately, he didn’t think I was nuts. We decided to wait until we see Dr. Tinkle on March 14 to see what we can do about getting her checked out. Now, I am thinking maybe we should get to her pediatrician and get the ball rolling now. She saw an opthamologist last week because of the pain in her eye. After his thorough exam, he did say he couldn’t see any signs of Chiari but that it didn’t mean she couldn’t have it and that she should see a pediatric neurologist to get to the bottom of her headaches.
I was willing to wait until we get to Dr. Tinkle but now I am not so sure. The problem is – and this is the story of our life right now – that nobody locally really knows enough to treat her, so going to the ER or any doctor is often pointless. We get sent home with good wishes, inconclusive results and no help. No doctor we have seen so far is willing to give her any pain relief. Aleve is as good as it gets and it does absolutely nothing for her pain. If we need a specialist, we have to wait weeks, sometimes months. And even when we finally see a specialist it often results in no help. There are times I feel like screaming in frustration and this is one of those days.
Having a child with several rare and unusual conditions makes seeking medical care very problematic. It is torture trying to figure out the best path with little or no guidance from doctors. We constantly second guess ourselves trying to make the right choice with so much on the line. We are on our own – with only my internet searches and Andrew’s medical back ground to guide us. It is terrifying. Draining. Heart-stopping. We can only do the best we can and pray for God to protect her.