Well, Emily and I spent a week at CHOP, from 12/27/07 to 1/3/07. Here she is in her hospital crib with the adorable polar bear she was given by a Child Life worker. They provide toys and activities for the children staying there.
After about two weeks of Emily having what I would call gagging episodes 5-6 times per day, she was admitted to the hospital for treatment. I had taken her to another ER a week prior and she was diagnosed with reflux. Throughout the week, there was no relief from the prescribed reflux meds, and her episodes (which contained 20-30 "gags" each) became more intense. I took her to the pediatrician three times and called them almost every night. They adjusted her meds and we made an appointment with the GI specialist. By the time we had our appt, Emily was having trouble with constipation as well, started a low grade fever on Christmas, and was not eating well. We even tried switching her formula to the hypo-allergenic type to help with the reflux - but no change.
At our appt with the GI doc, he thought her constipation, fever, and lack of appetite could have been symptoms of botulism! And after seeing a video we had taken of her having an "episode", he thought these "gags" looked more like seizures.
As I left the office I just couldn't bear to bring her home to have more episodes with no relief. And I was a bit freaked out about the possibility of her having seizures and botulism!!! So I took her immediately to the Emergency Room at CHOP. They took us in right away and we were admitted that night.
While we were still in the ER, the doctors - who all looked at the video - seemed sure that Emily had been having Infantile Spasms, a type of seizure under the category of Epilepsy. The specific movement her body made during the spasms was the first indicator. Each time she had a spasm, her head would fling forward, her eyes would open wide, her arms would fling out and her body would bend in the middle, like when doing a stomach crunch.
They performed an EEG that night and discovered hypsarhythmia - an abnormal, disorganized or chaotic pattern of her brain waves. She saw a neurologist as well who checked her for visual tracking and motor skills. She presented some delays in these areas, such as no neck/head control, limited tracking with the eyes, and low tone in her arms and trunk. [We were already aware of these delays and she is currently seeing a physical therapist through Early Intervention.]
After meeting with several neurologists throughout our stay, we found out that Emily's spasms are the symptomatic kind, meaning she was showing signs of developmental delays before the onset of the spasms. From what I've read, the outlook for children with this kind of IS is discouraging. Most children with this kind of IS have some degree of mental retardation and continue to have developmental delays. Of course, Emily may surprise us.
It is the goal of the doctors to normalize the EEG and in turn eliminate the spasms. Normalizing the EEG will allow her brain to learn and grow properly. This is our hope. An early EEG before we left the hospital and only 3 days into treatment already showed a slight improvement! Also, she started the shots on a Saturday and on Sunday, smiled several times and laughed for the first time ever. That was great and very encouraging!!
Now 17 days into treatment, Emily's spasms have dramatically decreased to less than 10 spasms per day (before treatment she was sometimes having 100+ spasms/day). So far today she has had none!! They also seem to be decreasing in intensity as well. We will continue the ACTH injections daily until the 22nd and have a follow up appt with the neurologist at the end of the month.
We are , of course, worried about what may lie ahead for Emily, but we'll be there to support her and provide her whatever she may need along the way. We are hopeful that this treatment will stop her spasms for good!
We love you, Em!!!!!