On June 12
th at about 5:30PM, Chloe was pouncing daddy and jumping all over the bed. I went to make dinner, and a couple minutes heard Zach scream "CHRISTEN!!!" I ran as fast as I could to our room where they were playing to discover that Chloe was having a seizure. Later, Zach told me that she had flopped over funny when he was sitting at the computer (he was not playing with her when it happened), and she made a funny sound. When she didn't get back up, he looked over and noticed she was laying weirdly- with her arm under her funny. He rolled her over and she was blue and he thought she was choking but couldn't get her jaw unclenched, and that's when he screamed.
Horrified as I was, I knew immediately it was a seizure. I took Chloe and laid her down and talked quietly and soothingly. I instructed Zach to call 911. He was so flustered that I took the phone from him after he had
diales, and instructed the dispatcher to send an ambulance. Side note, the dispatcher was rude to me (because I asked if the ambulance was already on it's way- after she already told me). Even in my panic, I was shocked and had to laugh at her for being so rude. Weird side note.
When the paramedics arrived, it was probably about 3-5 minutes after making the 911 call, and a couple minutes more since she had begun seizing. She was having a seizure the whole way to the hospital I think- though she started to come out of it with most her body about half way there, her whole left side was paralyzed and she couldn't turn her head to the left or look at me. Her eyes were still seizing.
At the hospital, they had to immediately administer who knows what to get her to stop seizing. She gradually began getting strength in her left side, and we all cried... we were so glad. They did find (in the ambulance) that her temp was 103 rectally (only like 98 on her forehead). When a child's temperature spikes so rapidly, it can sometimes cause a
febrile seizure.
So far, this was the only clue as to why she had such a bad seizure. They had to run some tests to rule out some possible causes. Chloe had a CT scan and an MRI immediately. The good news is that there was no sign of stroke (which we were worried about because of the paralysis). The bad news is that the neurologist saw in the MRI some spots in the white matter of her brain. This was indicative that she had inflammation on her brain in the white matter. I remember he said that because it was all over and not just in one spot, it was a good thing- because it ruled out several bad outcomes... like a brain tumor. The neurologist went over all the things he thought might be causing this kind of inflammation with me. Again, I don't remember all of them, but I do remember he said MS (which is almost unheard of in young children), and
ADEM. Read all about it by clicking
HERE.
Included in the swelling in Chloe's brain must have been areas that are in control of rage. For 24 hrs, I had to restrain her while she screamed and flailed, bashing her head without regard to self preservation. She would claw at my face and neck like she was trying to rip me to pieces. For the first 24 hrs she was unable to sleep. She fell asleep twice for an hour each time, and woke up in a rage. The next day, she was totally a wreck, and when I tried to get her to eat, she would just smash any food given to her. She drank some milk, and then threw the rest all over. The nurse came in that morning, and told us that the neurologist wanted us to get a spinal tap to rule out infection. If it had been an infection, the treatment (and obviously diagnosis) would have been completely different. They made us go without food or drink for the next 6 hours. Chloe was totally rage filled and animal like, but on top of everything there was part of her that was mad for real because she could not have the chocolate milk I had promised her literally 5 minutes before they told us she couldn't eat for 6 hours in preparation for her spinal tap. Poor Chloe really suffered that day. Insult to injury.
When I took her down the hall for her spinal tap, and walked into the surgical room, I had to hold her while they injected the anesthesia into her. At the time, I thought they told me that there was a 1 in 1000 chance of dying from the anesthesia. Looking back, I am SURE that is not right... but I too had not slept or showered for a couple days at this time. I let them inject her with anesthesia, and laid her on the table, and walked away bawling. Thankfully, Zach was with me during all that. We waited in the waiting room.
A few minutes later, they were done, and she was starting to come around. The spinal fluid looked clear and not cloudy (indicating probably not meningitis or other infections) and was sent away for other tests they needed. She was allowed to eat, and was finally given chocolate milk.
This started our next 24 hours, where Chloe would scream for chocolate milk in rage until we gave her some (chocolate milk was her only accepted sustenance, so we caved). She would take one sip of the
sippy cup, and then throw it crazy style out of the crib. It would splatter all over the floor, we would clean it up best we could as she screamed for chocolate milk. then we would go through the process again. Any food we gave her, she acted like she was going to eat, and then smashed it to tiny bits, screaming. She was so sad, and wanted to calm down. She begged for us to give her a cold shower to help her calm down... but that was not going to help. This rage was not something she could control.
The next day I started to realize that the rage was not an after effect of the drugs she had been on, and I started to see that her brain really was sick. I was very horrified about that.
One by one results came back, and on Tuesday, we were able to go foreword with treatment for
ADEM (which was what they
thought it was at this point... though they couldn't pin point a virus as the cause)
The neurologist came the day before to me to discuss treatment options. He first said that steroids were the treatment commonly used to treat
ADEM. Instantly, I felt a terrible sinking gut feeling. I wouldn't have recognized it particularly as a prompting if it weren't for what happened next. He said "there is another option..." and when he said that, I felt like there had been someone sitting by me all along, and as strong as if it had been said aloud, the thought came to my mind "listen to what he is going to say next. This is the treatment Chloe needs." It was such a strong impression, it made me gasp a little. Totally shocked me. The neurologist went on to describe the other treatment option he felt might be a good fit for Chloe, though unconventional. It is called
IVig (
Click Here for definition), and the most shocking thing about it is that it is made from 20,000 people's blood. I had been given an undeniable prompting that I needed to infuse my baby with 20,000 people's blood product.
Because I knew for sure that it was what needed to be done for her to get better, and because I could not deny the source from which that information came to me, I shuddered, and chose the treatment plan right there. We had to have a test to be sure she already had a certain antibody in her blood (
igA), and when the result came in the next day, Zach and I gave the go ahead to start treatment.
It was Tuesday afternoon, and we had been in the hospital 2 days at that point. Chloe was
un communicative and full of rage to where she had bruises in the shape of bar marks and goose eggs all over her face and head. She had successfully ripped out several
IV's, and a couple times the nurse was to blame for them going bad, but she had to have her 10
th IV placed at this time right before the treatment began. She had not eaten anything for all this time except chocolate milk and a couple bites of gram cracker. She was in diapers. She couldn't walk or sit up without falling over. She was twitchy, and her face looked slack. That day I had gotten her to a point where I could make her take a good nap without her arms and legs tied to the bed *(I may not have mentioned previously, but they had to tie her to the bed the second day we were there... and it actually helped her calm down).
She fell asleep for her nap soon after they began the infusion of
IVig. Zach and I watched her like a hawk for the next few hours, for side effects or allergic reaction. The medicine dripped like clear sap in the bag. We just watched and prayed.
In 2-3 hours, she woke up, looked around, looked at her diaper, giggled a little and said "huh? I a
baby!" She had made a joke! I was really nervous this good mood wouldn't last. She said "Momma, I hungry." I tried to act really normal and not set her off... it was IMPERATIVE she did not mess up her IV, and I was sure the rage was going to start. I asked her sweetly as I could, "Oh, would you like some ham cubes" (another side note: I had finally figured out how to order food for her... in the chaos, and in switching floors, they never explained how it worked to order food... and it was more confusing than normal because we were quarantined and the little paper order form had been in the middle sterilization room between our room and the nurses station... so finally I figured it out and I procured a little lunch, hopefully, as she slept). Chloe said "Yes. I have ham cubes in my crib." I gave her a little cup of them, and watched in silence (out of the corner of my eye- don't look an angry gorilla in the eye) and I was so relieved when she ate the whole cup full and asked for more. I got her green beans, grapes, and she gobbled them all up. Then she laid down and said calmly, "Momma, I sleepy now." I helped her get comfy, laid her down, took the food away, and did her little nap time ritual. I even left the room saying "good night sweetie, sweet dreams, see you when you wake up" like I always do (though I was spying on her from the observatory window). She went right to sleep.
I remember at this point, I was so happy, I was silly giddy.
She slept all night, and the next morning, she was able to try walking around. She walked like a baby learning to walk. She would take a few steps and teeter over. I was not going to take chances with the IV, so I didn't let her walk without holding my hand, but as the day progressed she got better and better. She walked like a baby, but she was getting better.
In the afternoon on Wednesday, she received her
second round of
IVig. After this, she again fell asleep. When they removed the tubes and disconnected her port from the
IVig bag, I was ready to let her try out walking and crawling around. I knew they would not need the IV anymore. She was a happy camper, and eating everything in sight.
She was attempting running by Thursday, and it actually was a pseudo pleasant day. Chloe was not full of rage. Her facial expressions were coming back. Her walking was so markedly improved it was optimistic. The doctors were actually astounded. They expected greater permanent damage. By the last hour we were there, on Thursday early evening, the doctor came in with a positive test result indicating that she had contracted Mono about 3 weeks
prior to her
seizure. The doctor thinks that must have been the virus that she had that caused
ADEM (though I can't find a single instance online where Mono caused
ADEM). I know for a fact that she had at least two colds/viruses over those same weeks though. Maybe it was a combination of several factors... and there are so many viruses that are just totally unidentifiable.... viruses are always changing. I think the last bug might have given her the fever that sent her into a
seizure... and caused the flare up. The neurologist said that one of the spots on her brain looked older (perhaps 3 weeks or so), and the rest were newer.
We set up appointments to see Physical and Occupational therapists.... as well as a behavioral therapist. She is going to be evaluated for minor
Aspergers syndrome. In any other circumstance, this would NOT be a side note... but alas... we are not too concerned about it after all we have been through. The decision to have her evaluated came because they were asking me what her
normal behavior is like, and I told them how brilliant and how quirky she is... and how she gets anxious to the extreme in unfamiliar and overwhelming situations, and how the only thing that calms her down is repetitive task oriented electronic games, and how most of her play involves
categorizing and lining up and organizing her stuff... even role play is very
categorical and repetitive.... yeah- she is a quirky little sweetie. I remember I was quite a quirky youngster though- I am not too concerned it's anything that will present much of a problem.
My mom was able to fly out on Saturday (we were discharged on Thursday, so I had just two days home without her). We had her for a whole week, and boy did I need her after all I had been through. I was strong beyond my own strength when we were dealing with all this, but coming home I crumbled a little. I think I had post traumatic stress disorder... and I think I am just about all better now.... but I did need my momma.
Within a couple days, Chloe seemed completely back to normal.
A week after the hospital let us go home, we went back for Physical and Occupational therapy. PT went
ok, she was behind, but not to where they were overly concerned, but the girl in OT wants to see us a couple times a month. I had no idea that Chloe was so far behind. They were concerned that she can't hold a crayon well enough, and she doesn't dress or undress herself. She also had some small motor skill deficiencies. This is all made weirder by how far ahead of the game her verbal and mental abilities are. She is also really social, when she wants to be, and if she is not having an episode. Today, I was watching her try to draw and scribble, and I think she might have experienced a little setback from
ADEM. It seems markedly more feeble than before (and before, her attempts were not so great). But I am betting it will all be fine with time and practice.
For her birthday (today), we gave her some things to improve her skills. A little toy she calls "
Ellie's white Laptop" because her friend Ellie has one, a tricycle to learn on, and a doctor kit to get over the trauma through role play with her stuffed animals.
She has a neurologist appointment on Tuesday, and we will schedule her follow up MRI there. They will need to see how her brain is recovering, and how things look.
MRI's are pretty amazing. I like them, and am glad they involve only magnets.... but I am anxious that she might have to be put out for it. I'm hoping for a more simple sedative, and I am hoping they won't have to actually knock her out.
She also meets with a different PT and OT from the school district (
Ralston school district) next week. Zach will be in boyscout camp all next week. We are looking forward to working with specialists and getting some ideas about things I can do with her to help build her skills. I am also looking forward to showing the neurologist how well she is doing... and I have several questions for him, like "What all tests did you run on her? What were all the medications she received while at the hospital? How did all the test results come back?" and also... my favorite... "How sure are we able to be that it was
ADEM now (knowing that she had Mono)? Could it still have been MS? What should I be watching her for?"
The questions continue to run around in my head, and we will never know about some of them, but we do know that the Lord was with us, and cares intimately and individually about us enough to send a messenger from Heaven to sit with me and tell me exactly what needed to be done. I have to keep reminding myself that now, with that knowledge, I can know that things will be fine.... even when outcomes are bad... I know we are not alone, and I know that things happen for a reason.
So much to see at the pumpkin patch.
Going on a hay ride!
Stomping around in the pumpkin patch.
Riding with the pumpkins.
Getting over a fear of bounce houses.
Weeeeeeeee!
Cowabunga!
Feeding the goats.
