Tuesday, May 21, 2013

New Challenges

I swear if I didn't have some sort of outlet I would go insane.  For the last nine months I've been dealing with one child with a known genetic disease.  Then that morphed into two children with a known genetic disease. In the midst of testing my daughter for CPT 2, my oldest son has been going through some medical issues of his own.  After eight months we are finally starting to get testing done so we have some answers.  It's about damned time.
Nathan started having headaches last August.  He would complain sometimes but for the most part kept the pain to himself.  I encouraged him to take acetaminophen or ibuprofen but he said it didn't work.  After a while of going through this with no relief, we went to the doctor.  She said he needed to drink more water and avoid caffeine.  In October or November, Nathan went to bed early and I stayed up to watch television.    I realized after about 20 minutes that there was a noise that sounded like crying coming from his room.  I went in and he was in the fetal position on his bed, clutching his head.  I got my mom to come over to stay with my younger two who were sleeping and took Nathan to the local ER where he had an IV, labs were drawn and he was given pain medication.  He felt better afterward.
We followed up with the pediatrician but she didn't seem concerned.  She told him to take ibuprofen with a snack since he was having chest pain and sent us on our way.
A month went by and Nathan's headaches weren't getting better.  He didn't want to see the same doctor again so I scheduled him with a different one.  She prescribed amitriptyline and sent us away, not thinking anything of the chest pain.  They did do x-rays which were normal.
A month later we were back for a follow up and the medicine wasn't working.  The doctor switched him from amitriptyline to cyproheptadine.  The first day he took it, he had to stay home from school because he couldn't wake up.  The next day he had some strange symptoms which I wasn't sure about.  He was disoriented, slurring his words, moving very slowly and acting like he didn't really know what was going on.  Ok, done with that med!  Another trip to the doctor yielded a prescription for propranolol.  This one has helped, at least a little.  He also got an MRI and a neurology consult.  Eight months into the process.
Seeing the neurologist brought its own set of issues.  The doctor ordered blood work which revealed an elevated TSH, or thyroid stimulating hormone.  This hormone is secreted by the pituitary gland and tells the thyroid to do its job.  Great.  Next, an endocrinologist.  He prescribed levothyroxine so Nathan is now taking that.  The neurologist won't change Nathan's medication until he does a bunch of tests and sees other specialists in order to rule out potential underlying conditions that could be masked by the migraine treatment.  An EEG was yesterday.  More endocrinology blood work came back normal.  That doctor suspects an autoimmune thyroid disease, Hashimoto's.  We won't know until we test for antibodies, which will be in about five weeks.
This kid has been through enough.  I have been through enough.  I need a nap...as well as a vacation from Dartmouth-Hitchcock Medical Center!!  (they are great though, I appreciate everything they are doing for all three of my children!)

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