A few days later I decided to take her to the doctor. Originally I was just taking her in for what I thought was just crabbiness and not sleeping through the night. However, as I waited for the doctors office to open in the morning I noticed she was falling a lot. By the time the doctor opened at 7am she had fallen several times and had a very large knot on her head.
We went to the doctor later that morning and we learned she had double ear infections and strep throat. The doctor was saw, not our normal pediatrician, did a quick neuro exam just to be sure all was okay and sent us with an antibiotic. Honestly, we didn't think much of it and I thought the ear infections explained the falls. That was on a Tuesday.
Over the course of the next week we thought she was doing better but then towards the weekend thought the antibiotic may not have been enough and contemplated taking her back in. On Monday of the following week (this was now March 5th) I was putting Brenna to bed when she had what we now know to be a "seizure-like" episode. Immediately I became very worried, especially when we could not wake her after. I called the pediatrician and they advised to take her to the hospital since she did not have a fever.
We took a toddler at bedtime to Mercy Children's as quickly as we could. When we got there we almost left thinking there could not be anything wrong with her. She was acting fine and literally running all over the ER. After being triaged we were seen by a few doctors and got a neuro consult. We learned very fast that we wouldn't be going home anytime soon. That night they did a spinal tap, blood work and a CT of her head. Everything came back okay but the doctors just didn't feel that everything was okay so we were admitted. We did learn that she still had the ear infections but that was small news in comparison to other concerns.
The next day we saw the neurologist. He did a very long exam on her (which was not easy because at this point she really hated everyone in scrubs and a white jacket). The neurologist strongly believed she had post-infectious acute cerebellar ataxia. However, there was lots of things to rule out first to make sure there was not something else going on. That day she had an ultra-sound of her tummy, a chest X-ray and a sedated MRI. The next day she had a sleep-deprived EEG - yeah that was not very much fun at all! The best news of all was that everything came back clean and they were pretty confident that she did have the original diagnosis. However, we took home a very scared 17 month old who could no longer even stand much less walk. The next few days would be very long days.
Acute Cerebellar Ataxia has been described as an infection in the body where your body doesn't fight it as it should. Instead the cerebellum area of her brain got damaged and is now swelling. The cerebellum controls core body functions as well as balance. This is why we started noticing her falling weeks before she had the seizure-like episode. We were told that 2/3 of kids do not recover entirely so we were hoping like crazy that she was the other 1/3.
The day after she came home, we took her to the babysitter. The neurologist had warned that if we waited for her to get better we would be waiting months so we needed to get her in a routine if possible. However, within a very short time of her being at the babysitter she was getting sick. Nonna was able to go get her and stay home the rest of the week. This helped tremendously!! She was able to get some of her strength back and was able to rest a lot.
We decided to seek a second option neurologist at this point just to make sure we were doing all that we should be. The second option neurologist, "Dr. M" has become our primary neurologist at this point. He has a better prognosis than our original neurologist and he also has suggested things we can do help her chances. Since we first met with him last week we have already enrolled her in the "Little Gym" and will also enroll her in swim lessons. The goal with the extra therapies will be to assist in strengthening her core. While we were visiting Dr. M he also noticed that she has some respiratory issues. We have known for a while that Brenna passes out when she gets upset and she can get to that point easily. The dr had concerns over the health of her heart given how quickly she can turn ash colored. He immediately sent us to a pediatric cardiologist and we had an EKG and an echo cardiogram. So far we have the result of the EKG and it was normal.
On top of all of this stuff, Brenna was also in the middle of the process of getting tubes put in her ears. We will be holding on that surgery and the possibility of removing her tonsils and adenoids until she had recovered neurologically. Also, we have concerns about her ability to undergo anesthesia at this time. When they did the sedated MRI, they ended up needing to intibated her and we need to take that into consideration as well. We met with the ENT today and we all agree she needs to wait at least 8 weeks.
Here are some pictures in the hospital...
Getting some TLC from Daddy
Not happy at all to be there
Now we are talking.. off of isolation and watching Minnie while on a wagon ride!
Loving her baby that giggles from the Warren's
As for Brenna's day-to-day personality right now: She has gotten a lot better over the last week. She now wants to walk again and is wanting to walk everywhere. She still is having some balance issues and is getting lots of bumps and bruises but really is a "determined" aka stubborn little girl. She had seen lots of doctors and has a general hatred for all of them. We do expect her to be one of the 1/3 kids who recovers completely. We are doing everything we can to help her do that too. She will be getting some extra therapies and things to help her as well. We do expect this to result in more developmental delays but things we should be able to manage. For now, she is happy (when not at the doctor) and tires very easily but we are glad to have her home. The goal being that each week we look back and it is a little better than the week before.
I will keep this updated as much as possible as we continue down this path of neuro that we have not been down before. Please continue to keep her in your prayers and we thank everyone for all they have done: the meals, phone calls, texts and offers to help are overwhelming!
