Charley Cate
Donation protected
This is sweetie-pie Charley Cate, a seven year old from McKinney, Texas. Charley has always done very well in school and up until January 20th, 2020 (MLK day!), has been a perfectly healthy little girl. Her mom, Lacey and step-dad, Michael, a firefighter and paramedic in Garland, Texas, picked her up from Dad at 8pm on January 20th after a long weekend with Dad and noticed Charley was slurring her speech and was having difficulty saying easy words. She said “Hi Mommy, ... I... I... I... talking f-f-funny today,” and giggled. Never in a million years did they think they would spend the next 15 days in a children's hospital.
The story: Mikey and I drove her home and as we passed the hospital I said I said I felt like we should just stop in. But, we continued home thinking, as Dad had conveyed, that he thought she was getting sick and gave cold medicine. I emailed to see exactly what he gave her as she was slurring her speech, thinking it must have been NyQuil or something, and he said "just cold medicine." We continued fed her a burger since she was hungry but we had to guess what she wanted at Sonic as she could not say the word "hamburger." She was in a good mood and ate well and we put her to bed by 9. Five minutes after she fell asleep beside me, she seized and I screamed for Mikey. He came running and we witnessed about a 20-second (which felt like a 20-minute) seizure.
What I’ve learned about seizures is that they are not necessarily the shaking, convulsing episodes witnessed in movies. If I wasn’t right beside her, I probably would have missed it. It happens in the brain and manifests itself in the body in different ways for different people. For Charley, the right side of her face was drooping, she was drooling, could not take a deep breath and could not make eye contact. Horrifying.
Mikey was noticeably shaken. If a paramedic is shaken, you know it’s not just "mom worry." We scooped her up and went to Medical City McKinney where they admitted her immediately after hearing her speech.
From 9:30pm-2am she continued to have seizures, and vomited a couple of times. The ER doc was great and ordered lots of tests and CAT scan right away. They learned her blood sugar was 485 and she was most likely diabetic, but probably not the cause of the seizures and honestly, the least of their worries. The seizures worsened with intensity and length until it became necessary to sedate her, intubate, and push anti-seizure meds before all lab results were back. Her respiratory functions were failing. They stabilized her and we were transported with lights and sirens to ICU at Children’s Medical Center in Plano where we arrived around 3am.
Since then Charley has had so many tests run, a MRI , 24-hour EEG monitoring for four days, spinal fluids tests (still waiting on confirmation of some labs), and many many bloods tests. The MRI confirmed inflammation on the left side of her brain. After her MRI, she was extubated and was slowly improving w, but still had some struggles with speech. The doctors were saying big words like, "autoimmune encephalitis." She was very frustrated and cried that the words didn't come and communicating was so hard. She used a white board to write down things she is trying to say. We wondered if we would ever get to hear our daughter speak again. We had no answers. The case became so complex, Charley was transported to ICU at Children's Medical Center in Dallas, where there are many more doctors who could collaborate on her treatment plan.
At this point, her official diagnosis was epilepsy and type 1 diabetes, and even though the labs were not back to confirm it, they also suspected and were treating for autoimmune encephalitis, an autoimmune response that attacks the part of the brain responsible for speech. The best treatment for this is plasma transfusion or "plex" and for this she had to go under anesthesia to get a port put in her neck. She received 1 plex treatment and improved greatly so after 8 long days, we broke out of ICU jail and got to go down to the endocrine floor where she received 4 more plex treatments.
She will be on insulin forever, and anti-seizure meds for the unforeseeable future. Since she has inflammation on the left side of the brain and since they are not 100% sure what is causing it so they threw everything at it they could; steroids (doses big enough for five large men), antibiotics, and five plasmapheris "plex" treatments, which are basically plasma transfusions.
After the plex treatments, Charley is speaking normally and shows no signs of seizures. Her diabetes is now being looked at more closely and managed and tweaked daily. Her glucose is still running high but we'll get it under control before we get out of the hospital and we are just thankful we are out of the woods with the brain seizures. There is a chance they could flare up again, but it is small.... and we are PRAISING JESUS!!!
Three hospitals, many, many, many doctors, new medications, glucose monitor, glucose meter, 24 hour EEG, 5 plasma transfusions and 15 days+ in the hospital, the bills are mounting. The family also needs to consider downsizing their home to free up income for the extra care this child will need going forward, which means they have an immediate need for funds to repair their current home, closing costs, etc.
We have nothing but awesome things to say about the team of doctors, nurses, techs, etc in both hospitals. We feel very blessed in that area.
Charley had so many visitors yesterday she said, “Wow, a lot of people know me.” Thank you for making her feel loved. Her teacher, school counselor, therapist, siblings, grandmother and several framily members stopped by. Her teacher brought her this soft unicorn stuffy and had all of her classmates make her a card and she read every single one of them to her. I think it was the highlight of her day. Trinity and Alyssa brought gifts, too, and made her laugh.
The point is ... we feel the love, too. Charley has no idea how many of you have been praying for our little family since she was just a babe and you still are and for that we say THANK YOU FROM THE BOTTOM OF OUR HEARTS!!! So many of you have reached out to help with Alyssa, our 14YO, checking the mail, the pets, bringing food etc and the support means so much to us. Every little donation helps. $5 or $10 - nothing is too small!
To all the parents out there who have been through something similar, or worse... just, I’m sorry. Man this sucks!
Thank you all for your prayers!! Keep them coming!
I’ll post updates as they come.
So Much Love, Mikey and Lacey ❤️
The story: Mikey and I drove her home and as we passed the hospital I said I said I felt like we should just stop in. But, we continued home thinking, as Dad had conveyed, that he thought she was getting sick and gave cold medicine. I emailed to see exactly what he gave her as she was slurring her speech, thinking it must have been NyQuil or something, and he said "just cold medicine." We continued fed her a burger since she was hungry but we had to guess what she wanted at Sonic as she could not say the word "hamburger." She was in a good mood and ate well and we put her to bed by 9. Five minutes after she fell asleep beside me, she seized and I screamed for Mikey. He came running and we witnessed about a 20-second (which felt like a 20-minute) seizure.
What I’ve learned about seizures is that they are not necessarily the shaking, convulsing episodes witnessed in movies. If I wasn’t right beside her, I probably would have missed it. It happens in the brain and manifests itself in the body in different ways for different people. For Charley, the right side of her face was drooping, she was drooling, could not take a deep breath and could not make eye contact. Horrifying.
Mikey was noticeably shaken. If a paramedic is shaken, you know it’s not just "mom worry." We scooped her up and went to Medical City McKinney where they admitted her immediately after hearing her speech.
From 9:30pm-2am she continued to have seizures, and vomited a couple of times. The ER doc was great and ordered lots of tests and CAT scan right away. They learned her blood sugar was 485 and she was most likely diabetic, but probably not the cause of the seizures and honestly, the least of their worries. The seizures worsened with intensity and length until it became necessary to sedate her, intubate, and push anti-seizure meds before all lab results were back. Her respiratory functions were failing. They stabilized her and we were transported with lights and sirens to ICU at Children’s Medical Center in Plano where we arrived around 3am.
Since then Charley has had so many tests run, a MRI , 24-hour EEG monitoring for four days, spinal fluids tests (still waiting on confirmation of some labs), and many many bloods tests. The MRI confirmed inflammation on the left side of her brain. After her MRI, she was extubated and was slowly improving w, but still had some struggles with speech. The doctors were saying big words like, "autoimmune encephalitis." She was very frustrated and cried that the words didn't come and communicating was so hard. She used a white board to write down things she is trying to say. We wondered if we would ever get to hear our daughter speak again. We had no answers. The case became so complex, Charley was transported to ICU at Children's Medical Center in Dallas, where there are many more doctors who could collaborate on her treatment plan.
At this point, her official diagnosis was epilepsy and type 1 diabetes, and even though the labs were not back to confirm it, they also suspected and were treating for autoimmune encephalitis, an autoimmune response that attacks the part of the brain responsible for speech. The best treatment for this is plasma transfusion or "plex" and for this she had to go under anesthesia to get a port put in her neck. She received 1 plex treatment and improved greatly so after 8 long days, we broke out of ICU jail and got to go down to the endocrine floor where she received 4 more plex treatments.
She will be on insulin forever, and anti-seizure meds for the unforeseeable future. Since she has inflammation on the left side of the brain and since they are not 100% sure what is causing it so they threw everything at it they could; steroids (doses big enough for five large men), antibiotics, and five plasmapheris "plex" treatments, which are basically plasma transfusions.
After the plex treatments, Charley is speaking normally and shows no signs of seizures. Her diabetes is now being looked at more closely and managed and tweaked daily. Her glucose is still running high but we'll get it under control before we get out of the hospital and we are just thankful we are out of the woods with the brain seizures. There is a chance they could flare up again, but it is small.... and we are PRAISING JESUS!!!
Three hospitals, many, many, many doctors, new medications, glucose monitor, glucose meter, 24 hour EEG, 5 plasma transfusions and 15 days+ in the hospital, the bills are mounting. The family also needs to consider downsizing their home to free up income for the extra care this child will need going forward, which means they have an immediate need for funds to repair their current home, closing costs, etc.
We have nothing but awesome things to say about the team of doctors, nurses, techs, etc in both hospitals. We feel very blessed in that area.
Charley had so many visitors yesterday she said, “Wow, a lot of people know me.” Thank you for making her feel loved. Her teacher, school counselor, therapist, siblings, grandmother and several framily members stopped by. Her teacher brought her this soft unicorn stuffy and had all of her classmates make her a card and she read every single one of them to her. I think it was the highlight of her day. Trinity and Alyssa brought gifts, too, and made her laugh.
The point is ... we feel the love, too. Charley has no idea how many of you have been praying for our little family since she was just a babe and you still are and for that we say THANK YOU FROM THE BOTTOM OF OUR HEARTS!!! So many of you have reached out to help with Alyssa, our 14YO, checking the mail, the pets, bringing food etc and the support means so much to us. Every little donation helps. $5 or $10 - nothing is too small!
To all the parents out there who have been through something similar, or worse... just, I’m sorry. Man this sucks!
Thank you all for your prayers!! Keep them coming!
I’ll post updates as they come.
So Much Love, Mikey and Lacey ❤️
Organizer
Timothy Mischiara
Organizer
Elmhurst, IL
