Well today is day 8 on this hellish journey. I hate to start off that way but I’m not the sugar coating it type. Eli is still having seizures. Yesterday the neurologist doubled his dosage of ACTH since he hasn’t shown any improvements. Now he’s getting 0.6ml of the “liquid gold” injection daily. The good news is: I am getting better at giving the shot. I am still nervous but my confidence is increasing. The bad news is: Eli had more seizures today than any day prior. I just don’t get it! I was told “Kids with Down syndrome respond so well to treatment” and “Most kids stopped having seizures after the first few injections”. So why does my kid not respond to this treatment? Is there another cause of the Infantile Spasms? Because Eli has Down syndrome, the neurologists just assume that’s the cause. Infantile Spasms are most likely caused by one of the following:
•Central nervous system infection (for example, meningitis, encephalitis)
•Abnormal brain development or injury
•Neurological disorders with skin lesions (for example, tuberous sclerosis, neurofibromatosis)
•Genetic abnormalities (for example, Down syndrome, Miller-Dieker syndrome)
•Metabolic disorders (for example, mitochondrial diseases, phenylketonuria, hypoglycemia)
Is it possible that Eli could have something else going on and Down syndrome is actually a non-factor? Yes, it’s possible but definitely less likely. We pray that there is nothing more sinister happening with him to be the cause of the Infantile Spasms. His neurologist explained that it sometimes takes longer to figure out the right combination of drug therapies to stop the seizures. We will try the higher dosage of ACTH for 2 weeks. If that doesn’t work then we go to plan B (I have no clue what that is since I was certain plan A would work!).
The roller coaster of emotion is taking a toll on us. Each day we wake up wondering if today is the day the seizures will stop. We wait with baited breath until he eventually has one. Then the rest of the day we feel defeated, deflated, and downright depressed. Today we passed that old church sign in the country. Yesterday, it had something about Easter on it. Today it had been changed. It said Jesus gives new life. Start yours today. I got very excited and hopeful that once again that sign was speaking to us. (Confused? I’ve written two previous posts about said sign “A sign that speaks to me…” and “Having faith”). I thought it was telling us that Eli’s new life (seizure free) would start today. But, it didn’t. Maybe this is the beginning of the drugs working. It takes time. I just pray it doesn’t take too long.
Eli’s picture on Circle 21’s Facebook page Wednesday received 8,400+ likes and comments!! That’s over 8,400 people who are praying for, said a prayer for, or are just thinking about our sweet boy. 8,400 people – How awesome is that?! That’s pretty amazing. Just like Eli.