“Oh my word is it a seizure?”
I FRANTICALLY gulped back tears and paced the house with Annora cradled in my arms. She was arching her back and bobbing her head in the strangest way. To say I was CLUELESS on what to do is a COMPLETE understatement! Just thinking back to this moment makes my heart ache. I remember where I was standing, the look on Ben’s face, the feeling I had and what my poor baby was going through.
I had just returned from a work trip where I was out of town and what I came home to SHOCKED me. Annora (just 7 months old) had JUST had her immunizations and 2 days later was acting strange, and what appeared to be seizing. I was convinced that the shots had somehow caused this reaction. We immediately called the doctor and she sent us to the hospital. They immediately admitted Annora, hooked her up to a gazillion machines, and started the testing process. In fact, I am not sure they missed a test that is offered. They did it all! The poor little one was poked and prodded, tested and retested, scared and sad. I couldn’t believe that our little one, who was fine/normal just a few days prior was now in the hospital being tested for epilepsy and anything else under the sun.
As the days went on, they couldn’t find anything wrong with Annora. Her tests all came back “normal” but she continued to have these “seizure-like” symptoms. In fact, we felt little comfort from many around us.
“Babies do strange things!” “I can’t believe you are putting Annora through all of this!” “My kids did the same thing…”
Many truly felt we were over-exaggerating and doing unnecessary testing on our poor little one. Ben and I felt extremely alone and unsupported. We both had that gut feeling that something was wrong and we were not going to let others opinions of how we should parent affect our decision to push through and figure everything out.
Once all was said and done, Annora was diagnosed with Sandifer Syndrome (another form of GERD…or severe acid reflux), low iron levels and they also discovered she had Hypotonia (Low Muscle Tone). THANK GOODNESS…Ben and I were FINALLY getting answers! The Sandifer Syndrome (what was causing the seizure-like symptoms) and low iron were treated with medication and for the Hypotonia, we were referred to Help Me Grow where they did an evaluation and were able to help Annora with her struggles through the use of early intervention.
During this whole process, Ben and I were SO THANKFUL for BCMH (The Children With Medical Handicaps Program). Early on we were referred to BCMH through Annora’s developmental pediatrician. Once the paperwork was filed, BCMH took care of our medical bills leading up to the diagnosis of Annora’s issue. The stress of paying off the numerous tests she went through was GONE! If you are going through something similar, I HIGHLY recommend looking into BCMH for help. We were so blessed that there is a program out there that cares about the financial burden placed on families when trying to diagnose someone who doesn’t have the ability to communicate what is going on.
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