Mickie's Miracles Blog

Baby Mia’s Infantile Spasms Story

After meeting Mickie’s Warrior mom Lea Pasos, our founder and CEO Kristie Griess was ready to use every resource at her disposal to help baby Mia. This is mom Lea and baby Mia’s story.

 We were so very excited to welcome our second baby girl, Mia, into the world on July 17, 2017.  After a first healthy birth, we were less nervous the second time around. We brought home a healthy baby girl, and then at two months old, she started having spasms and six weeks later she was diagnosed with Infantile Spasms(IS).  

 I had no idea what IS was or what would come! It was such a shock! Ten days after the diagnosis we started her first ACTH treatment. Thankfully it stopped Mia’s infantile spasms for about three months. Then, IS bared its ugly head again.

 

Our neurologist said we could not repeat ACTH again, so we tried a couple other medications for about two months with no results. We didn’t know anything about Epileptologist or Level 4 Epilepsy Centers, but that’s what we needed. At the time, there was only one practicing Pediatric Neurologist Epileptologist in our area. Since then, I have heard we now have a new one, so that makes two for the whole state of Oklahoma! Even now, they are still not accepting new patients.

 Our local Epilepsy Foundation put us in contact with Mickie’s Miracles and the founder Kristie Griess. She answered me the first time I called her and within 5 minutes had us on track to get a second opinion at a level 4 Epilepsy Hospital with a pediatric Epileptologist.  Within two weeks we had an appointment to see Dr. Mary Zupanc.  This would be a life-changing experience for our entire family. We would travel halfway across the country to the Children’s Hospital of Orange County, California, and be gone for three weeks. My husband leaving all his work behind!

 All the way, we put our trust in Kristie’s recommendations. Looking back, we have no regrets. When we returned to Oklahoma with answers and a plan that would help us to get our daughter’s smile back and her life back on track, we were so relieved. We had an excellent team at CHOC fighting for us, Dr. Zupanc and everyone at that hospital was the best!  We felt like Dr. Zupanc was fighting full force and using all the weapons she had to save our little Mia. We did repeat the ACTH treatment.

 Sadly though, when weaning her off from ACTH, her spasms began to increase and this time she was having more than ever before. Our next weapon was the Keto diet. Dr. Zupanc’s words were “if the ACTH doesn’t work, you absolutely have to do the Keto diet next.” And that’s what we did. A week after returning to Oklahoma, Mia started the diet.  After about six weeks her spasms stopped. Two weeks later we again had a clean EEG. We saw the last spasm on July 15, 2018. We hope and pray to never see them again. But if we do, we now know we are not alone in this fight. We know where to go to for help, and Mickie’s Miracles has been a wonderful resource!  We continue to be on a very strict Keto diet for Mia and are now hoping to make it a way of life for our whole family. She is now 15 months old, she’s smiling, laughing, getting into everything, crawling and chasing her big sister around. It looks like she will be walking in a few months! It’s been so encouraging to have people so knowledgeable and compassionate like Kristie Griess from Mickie’s Miracles and Dr. Zupanc from CHOC on our side. We are forever grateful!

Signed,

 Lea Pasos


 If anything in Lea’s words spoke to you, let us know down in the comments! We LOVE to hear from our readers. Do you have a story to tell? Contact us!

Mickie’s Miracles is a non-profit foundation for the education and awareness of pediatric epilepsy. We run on the donations and support of others, so if you have some time, please consider donating to your cause. Thank you.

 

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