I was super frustrated when Thomas woke up again this morning with a terrible headache and was too dizzy to walk. He says the dizziness and headache are worse if he's upright so he prefers to stay laying down. He will still sit up for periods of time building Legos.
I ended up deciding to drive him up to Helen Devos Children's Hospital ER in hopes of getting some answers and in to see some pediatric specialty doctors who could all coordinate in one place. Unfortunately, we did not get any answers. The ER doctor was confident that we had already run any test they could think to check on him. It didn't matter that Thomas told them his headache was a #9 and that it was obvious he couldn't walk without holding onto something. They sent us home and told us to wait for the neurologist appointment which is still 2 weeks away!! They weren't interested in his leg pain, hair loss or skin skin conditions past noting them. I cried in the ER from frustration and from the let down of hoping they could get us connected with some specialists today. The ER doctor then recommended that Thomas and I set up counseling. He said Thomas would benefit from talking to someone about how he feels about not being able to do the things a typical 9 year old boy would be doing. Seriously! Our discharge papers included nothing more than notes on following up with our family doctor and a recommendation of a behavioral health clinic (counseling) in town. How is a mother who watches her baby suffer every day supposed to react? I've held it together up to this point. It's heartbreaking telling your child over and over that you can't do anything to make them feel better.
I gave him Tylenol when we got home and set the timer for 4 more hours and gave him more. Maybe if I keep him on the Tylenol for a day or two the headache will become more manageable and less debilitating. We are still going to keep trying the supplements from the Naturopath. In fact, the nurse said to definitely keep him on the CoQ10 to help with his headaches. The ER doctor said if the headaches were migraines they were very "atypical" and that migraines do not last in this duration.
I also called and left a message for our family doctor to further discuss what we can do. He did not return my call yet. I am not sure if we should go ahead with the heart monitor on Friday or wait until after the neurologist. The ER doctor said his heart sounded fine. I really don't want to stress Thomas out anymore than needed as that of course makes him feel worse- as it does anyone!
He's laughing and talking some now but still not standing up.
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