Monday, June 11, 2018
The Undiagnoseable Child
After 12 weeks in the NICU Joseph was the last of his surviving siblings to make it home. That night he came home for the first time he stopped breathing, turned blue, and I had to resuscitate him while my husband called the ambulance. This went on for about a month, the O2 monitor kept going off, before there was more testing. I was told Joseph had missed SIDS by the emergency room but in the end it was determined he was having "silent" reflux. That he was aspirating and he would need surgery to survive. This was my first clue that he may have a neurologic problem.
Once he got home, and a few surgeries later, life slowed down so I could research what was going on with my poor baby. Joseph, at 4 months old, was just a lump. He rarely ever made a sound. When you picked him up he was like a rag doll, he did not interact, I saw his eyes roll up in his head a few times, and the ONLY thing he did was twiddle his fingers in front of his eyes. All of these things I would bring up to the multitude of specialists Joseph saw but all the doctors just metaphorically patted me on my head and said he had a rough start to life and he would catch up by the time he was two.
This mom's instinct knew better! I knew there was more than I was being told and the specialists were no help. After researching online (Did I mention I have been called a Googlologist?) I determined Joseph had floppy baby syndrome. I thought he might have a neurologic problem since I sometimes saw his eyes rolling up into his head, which a later found out is called sun-downing, to his neurologist and I was ignored.
I tried to explain my concerns to my husband but he trusted the doctors. So I kept fighting, kept researching, and I was determined I would not give up looking for answers.
As Joseph started growing I noticed he was staying tiny in size. More tests were run. It was determined he had an underactive thyroid and tested positive for thyroid antibodies. Thankfully, this was something I did know about as I suffered from the same condition, Hashimoto's Thyroiditis. I got him some thyroid medicine and we moved on.
Joseph was SUPER slow in hitting his milestones to roll over, it up, or crawl. After about 3 he was crawling but he still was not walking. I knew he has muscle issues from being a floppy baby but I did not know what else was wrong. After more researching and talking to his occupational and physical therapist I realized he might have ataxic cerebral palsy. I requested he get an MRI to get a full brain scan to see if he had any type of brain damage.
This is part 1 of a series on the difficulties of having a child that doesn't quite fit into a medical diagnosis. I hope I will be able to continue his story soon.
Posted by Malady at 9:48 PM