Since Evan started having seizures in January of 08, he frequently holds his head or cries and comes to me holding his head. He usually has what I assume to be a headache after his seizures, but he does this head holding or crying and pointing to or holding his head at any time during the day and it does not have to be related to a seizure at all. I am assuming he is having a headache or some kind of pain in his head, as when I ask him if his head hurts or if he has an owie he either shakes his head yes or points to his head. Well, now he has pointed to his chest area about 10 times when I asked if has an owie or even on his own he will point to right below his throat and kind of cry or moan.
So my instinct is to think he is having reflux or pain related to seizures. We just had a PH probe in August and his reflux is pretty mild and not enough to medicate although we have medicated in the past. But my gut tells me that I should have it checked out just in case, I mean it could be more than something small and he does not have the words or signs to tell me if he is having pain all the time or how it feels and we think he has a higher pain tolerance so it could be more pain but Evan is able to tolerate more.
We have an appt with his neurologist on January 7th so I am going to talk to him about it and I am thinking it would be good to do another MRI just to make sure there is nothing in his brain that is causing problems. I am pretty sure we are going to do another EEG to see how the new medication is working. I just hope he does not chalk it up to pain due to seizures. I really feel that we should look into it more in depth. Now about the pain in his chest area, what kind of testing would help with that a chest xray, ekg. I am also not sure sure if I should talk to the neuro about this or go to his pulmonologist?
I do not think these tests are uneccessary I just want to make sure nothing serious is going on with Evan since he not able to tell me himself. What would you all do in this situation?
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