Stopping the seizures – Day 8

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)
(www.infantilespasmscenter.org)

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.
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4 comments on “Stopping the seizures – Day 8

  1. I wish I could just give both of you the biggest hug. Fight those doctors with your questions, mama. You deserve for them to investigate every avenue. ❤

  2. Thank you for keeping us updated. I have been thinking about Eli non stop!! I love you Mel. You’re so strong. We will keep Eli in our prayers.

  3. Please DONT GET DISCOURAGED!!! Yes indeed, the seizures, could be caused by a host of things. However, many meds take 4-6 weeks, before our body responds. You, Chuck and Cody,are doing the best you can.
    I know you’ve researched any and all resources and I know its alot to take in. Please keep in mind Eli is a individual and his needs are unique. I know how hard it is not to compare him to other kids, with special needs. Again, I say, and truly believe, everything and everyone, is part of a bigger plan.
    I am so proud of you. You’ve kept your perspective, faith and most of all, persistance. Dr.s are but human beings with flaws of their own. Keep researching, especially families with similar issues. Sometimes thru trial and error, they have found resolutions that arent in medical journals.
    I love you and will continue to pray for you all. Keep smiling especially when you dont want to. Dont lose faith, dont get down on yourselves. Look how far you’ve come already. No matter what the Universe has thrown at you, you have faced it head on. Stay positive. Love Ya, A. Sandy

  4. Praying for you Melanie, Chuck, and Cody, as well as Eli as you navigate this. Good for you asking the questions and considering yourself as much as an expert in this process as the doctor’s. You both have your own area’s of expertise in this and need to respect each other’s wisdom.
    I’m praying for Doreen and Mike too.

    Natalie

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