Trying to stay grateful while trying to stop the seizures (day 12)

I was going to write an update on Eli yesterday but in light of what happened in Boston, it didn’t feel right. What a sad day – for Bostonians, for the country, for human kind. I adore Boston. It’s one of my favorite cities. I like the Boston Red Sox and I love the Boston Celtics. Most of my family is from, and many still live in, New England. I find it heartbreaking that an event that brings together people from all around the world, was shattered by such insanity. My heart goes out to those that lost a loved one. My prayers go out to all the victims of another senseless act of violence.

As far as Eli and his seizures, things seem to be staying the same. We are on day 12. By now, they should be gone – at least that was the impression I was given. Yesterday, although he was still having seizures, they did seem smaller. Instead of 20-40 spasms in a cluster he had 2 or 3. It was very promising. And then he had one with 25. But, it was still better than the day before. That’s all we’re looking for – progress. Today he woke up and right away had a seizure. Then he had one before his injection and again in the parking lot at the pediatrician’s office, then when we got home, then again after lunch, and again while he lays in my arms while I type this on my phone – most with 20+ spams. So, today we’re right back to where we were. So frustrating!

I did speak with the neurologist yesterday. I expressed my concerns about the ACTH not working, even at the increased dose. His thought is, let’s give Eli “the benefit of the doubt”. He stated that it is very “atypical” for a child with Down syndrome not to respond favorably to ACTH when treating Infantile Spasms. I get it. He finds it hard to believe that Eli will be the one that it doesn’t work on. I should have reminded him though – our Eli is anything but typical. He does things his way, in his time. I’m certainly willing to keep trying it. I’d hate to give up when we already have so much invested. But I also don’t want to miss out on the opportunity to try something else. Time is the enemy. We are dealing with a “catastrophic” seizure disorder. The damage Infantile Spasms does to the brain sometimes cannot be reversed – or it could take years to ‘fix’. That is a scary realization. He’s already experiencing the nasty side effects of the drug (weight gain, irritability, no ‘personality’). I’ve only seen him smile once since getting into the thick of this treatment. That is the hardest part of this process. I miss my baby. I miss his smiles and his laugh. I miss his sweet personality. I miss looking into his eyes and seeing a brightness. Now he just seems ‘distant’. He tires very easily so we don’t get to play much. But, I do get more snuggle time because he always wants to be held.

Please continue praying. Each day I wake up and pray that today will be the day the seizures stop. Each time I give him an injection I say a prayer that it will work and doesn’t just end up doing more harm than good. Each night I pray for a better day. And I also pray for all of you. Every single one of you that prays for, thinks about, asks about Eli. Each one that has offered dinners for us, or to go shopping for us, or to just be there for us. Most people don’t understand what it’s like to have a sick child. They don’t get the strain it can put on a family. I won’t lie, it’s rough. I considered our family to be strong. Heck, we’ve been through a lot already but always weathered the storm. This storm is more like a hurricane. We’re staying afloat, but sometimes it feels like it’s just barely.

But, today I still woke up grateful. My children are alive. I am able to hug them and kiss them and hold them. Some families no longer can. I will never take a day for granted – good or bad.
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Reflect upon your present blessings, of which every man has plenty; not on your past misfortunes of which all men have some.
– Charles Dickens

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13 comments on “Trying to stay grateful while trying to stop the seizures (day 12)

  1. Thanks for the update. I find myself thinking about your boys off and on throughout the day, and worry about how you and Chuck are holding up. Leaving it in God’s hands.

  2. Praying for you and your sweet boy. Your posts over the last several months have given me a lot of inspiration as we met our own Eli. Praying the seizures will stop and the smiles will return.

  3. I look forward to the updates Mel, thank you again for being so giving, and sharing such deep personal moments in life.. I always seem to draw strength, or wisdom when reading your words.. One day at a time for us all .. Prayers, and big hugs for each one of you.. Hang in there – Eli is no typical warrior ..

    Charles Dickenson rocks..
    xo

  4. Thanks for the update Melanie. I look forward to the the day when you say Eli’s smiling again, will continue with the prayers and i’m sending a hug your way, 1 for each of you. xoxo

  5. I’m currently going through the exact experience you went through. My daughter is on her 3rd week of ACTH and she has Down Syndrome. I miss her smile. She has days where we think it’s working but overall it’s not.

    • Hi Cassidy,
      I am so sorry to hear your daughter is going through what Eli went through. It’s so tough seeing our little ones “fade away”. I hope the ACTH eventually wipes out her seizures. Hang in there. Her smile WILL return – Praying for sooner rather than later. Hugs to you mama. It does get better. ❀️

  6. I am a parent with a son who has DS and Infantile Spasms. Would love to chat with others. We have tried the ACTH regiment which nearly killed my son. We have tried Sabril which is Vigabatrin, tried Keppra, Topomax………..etc. nothing has worked……my email is bamory0620@gmail.com

    • Brandon,
      I’m sorry you are going through this with your son. I have a friend who also went through everything trying to stop her son’s seizures. What eventually helped was the ketogenic diet. Have you talked to your neurology team about that option? Because ACTH worked for us relatively quickly, I am not an expert on the other forms of treatment. I am part of a great support group on Facebook, ‘The Infantile Spasms Community Discussion Group’. It’s a closed group so you have to ask to join. They also have an active online forum you could join and post questions to or read about others’ experiences. http://www.iscommunity.org This links to their social media, forum, email, etc. Hopefully this will be helpful to you!

      Hoping you can find the answers to stop your son’s seizures soon. He is in my prayers.

      Melanie

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