Nearly a year after Brayden's first severe episode, and two years after his birth and start of this whole thing I am still trying to get answers. But a few months ago, I received a referral from a friend at work that maybe the answer to my prayers! When she heard me talking about Brayden's episodes she was shocked, she shared her experience with her daughter who suffered from similar episodes in her teens! She was understandably frustrated, not knowing what was wrong, and not getting many answers after countless tests that showed normal results. Her daughter once had an episode during an EEG...results were normal! What made the difference for this woman was having the care, concern and understanding from her daughters pediatrician. I have now switched Dr's for Brayden and after only a first appointment I feel hope, that she will do the same for me and my son that she did for my friend and her daughter.
Brayden's episodes have become more frequent and severe. He has several severe episodes a day where he loses consciousness. I was told that it wouldn't happen in his sleep, and it has. I was told that its caused by upset or injury yet he's had episodes with no preceding trigger, and even during bouts of laughter.
Our first appointment with the knew pediatrician went well. She spent an hour and a half with me and Brayden! Asking questions, listening to my story, going over dates, and really getting to know the characteristics of his episodes.
The result...she agrees that there maybe something else going on here. Although it is not her area of expertise, she says his episodes are characteristically similar with an epileptic disorder, or movement disorder. She is referring Brayden to an epileptologist and is requesting a 24+ hr EEG (she wants a minimum of 24 hrs, but wants to see how long Brayden will "allow" us to get away with). She is also referring him to a pediatric apnea center. She was happy that I didn't settle for what our previous pediatrician decided to diagnose him with. She was even happy to hear I did my own research, and impressed with what I found. The Dr even brought Brayden's file home to review, and called me later that night with more referrals!
I may not have an answer yet, and I may not be able to make Brayden better yet, but knowing he has a doctor that is willing to take care of him, and who shows compassion is such a relief! I finally feel like we are moving forward.
When you are dealing with the possibility of your child having a medical condition that you can't fix, and you are being pushed away and your child is being overlooked. I urge you to be persistent, and follow your gut. Never settle, or accept what a Dr is telling you just because they have a degree. If it doesn't feel right to you, push forward for your child. I became very discourage after hearing from the doctor's that this was nothing. What helped me was have the help and support of family, and friends.
Thanks for listening and I will post updates of Brayden's appointments and testing...and hopefully...results!!!
Brayden's episodes have become more frequent and severe. He has several severe episodes a day where he loses consciousness. I was told that it wouldn't happen in his sleep, and it has. I was told that its caused by upset or injury yet he's had episodes with no preceding trigger, and even during bouts of laughter.
Our first appointment with the knew pediatrician went well. She spent an hour and a half with me and Brayden! Asking questions, listening to my story, going over dates, and really getting to know the characteristics of his episodes.
The result...she agrees that there maybe something else going on here. Although it is not her area of expertise, she says his episodes are characteristically similar with an epileptic disorder, or movement disorder. She is referring Brayden to an epileptologist and is requesting a 24+ hr EEG (she wants a minimum of 24 hrs, but wants to see how long Brayden will "allow" us to get away with). She is also referring him to a pediatric apnea center. She was happy that I didn't settle for what our previous pediatrician decided to diagnose him with. She was even happy to hear I did my own research, and impressed with what I found. The Dr even brought Brayden's file home to review, and called me later that night with more referrals!
I may not have an answer yet, and I may not be able to make Brayden better yet, but knowing he has a doctor that is willing to take care of him, and who shows compassion is such a relief! I finally feel like we are moving forward.
When you are dealing with the possibility of your child having a medical condition that you can't fix, and you are being pushed away and your child is being overlooked. I urge you to be persistent, and follow your gut. Never settle, or accept what a Dr is telling you just because they have a degree. If it doesn't feel right to you, push forward for your child. I became very discourage after hearing from the doctor's that this was nothing. What helped me was have the help and support of family, and friends.
Thanks for listening and I will post updates of Brayden's appointments and testing...and hopefully...results!!!
