Diagnosing Cailyn's Beautiful Brain
Maybe this is an old way of thinking, but it's not easy for a father to reach out for help, partly because it might be seen as a sign that he wasn't providing for his family. I don't like the idea that I'd be seen as failing. However, I'd be remiss if I didn't look at my situation objectively and realize these crowdfunding sites are there to help others. In the past, we've been able to donate money to those in need in a similar fashion. For year's I've always been on the giving end of these things, praying and hoping to never find myself in this position. Alas, that hasn't gone quite as planned.
The Events - Cailyn woke up in late February with complete paralysis of her right side. An hour later she started to regain the use of her right side but quickly begun to have issues recalling words and slurring words. I took her to the ER and after two MRI's, an MRA, an EEG, and Doppler she looked surprisingly healthy with only some slight slowing of her left hemisphere, which is what they were expecting given the right-side paresis. The neurologists were very thorough and gave her to all clear to go home after the long series of tests. We left without knowing exactly what happened and why, but a theory that she might have had a hemiplegic migraine. It’s very very rare especially in a child this young.
After a full month and half of being a completely normal and wonderful little girl, one morning I went to wake her up and she was lying in bed with her eyes wide open. In trying to rouse her for school but she just laid there. A few minutes later she began crying and was inconsolable for a full half hour, I still don't know what finally calmed her down but it was at this point she began to respond to me and answer questions, alarmingly she started complaining of pain in both of her arms. I took her to the hospital after talking to the pediatrician and in the ER she had another episode in front of the physician during an attempt to do an exam. While heartbreaking, this was a good thing as it allowed them to do a proper neurologic exam to see how her neuro functions were failing. With the information from that exam throwing up red flags she was admitted right away and placed on a vEEG. She’s been on the vEEG for three days without an event, and as I write this we are beginning our fourth day of monitoring.
Why do we need funding? - Simply put, we currently do not have active insurance, with the donations so far from this campaign and our own savings, we're able to afford the initial payment for COBRA [$1450/month and needed to pay March and April payments] and as of now we are waiting for COBRA to become active. Even once it is active our deductible and co-pay for the first hospitalization and this hospitalization will likely reach around $4-6k depending on how long we remain admitted. Combine that with the fact that we currently have no income this will drain us financially.
My wife is 35 weeks pregnant and a full time 4th year doctoral student and I was forced to leave my job in February and used that time to take care of my daughter full-time and monitor her more closely while praying she doesn't have another event. We have been living comfortably off of my savings but without coverage I know for certain this hospital visit will quickly change that. My plan was to originally cover 6-7 months of our monthly bills with our savings, but at this rate that will end 3-4 months early with these unexpected bills before my wife and I can relocate and find new jobs.
The funds from this GoFundMe will go towards allowing us to continue testing Cailyn to find out what the underlying cause is for the neurological events. Today we made the choice to keep her on monitoring for another day in spite the costs. We fear the events may be becoming more frequent and that may lead to more violent events and possible permanent brain damage. If we can find the right test at the right time, we may be able to isolate the cause and get a plan together for preventing these events from getting worse. Right now we're not sure if these are some type of focal seizure or a very rare and hard to diagnose hemiplegic migraine. The goal may be adjusted if we have to do more imaging or stay longer, but we're hopeful we can find what we need with the vEEG.
Thank you for your considerations, your time, and your donations.
Cailyn is doing very well. We'll be following up with her neurologist in a couple of months, we've been extremely fortunate [or blessed even] by the fact that she has not had ANY further episodes. I think I may have had an irrational fear that if I were to update the page with an 'all is well' post that something may happen. It's silly to think that way but when you care too much you start thinking it sounds rather reasonable.
In speaking with the team of neurologist we've been working with and after an extensive period of monitoring her brainwave activity we're left with basically a diagnosis of exclusion. Because of the lack of activity captured on the vEEG [a very good thing] then the primary culprit of it being a series of simple seizures diminishes greatly [to ~1%] and leaves the neurologists left with a condition known as Hemiplegic Migraine.
Do not let the word 'migraine' throw you off, as it does seem silly to think that a migraine could cause so much chaos. The symptoms are so similar to a partial simple seizure that they're nearly indistinguishable during diagnosis. The only difference comes down to the EEG reading, where a seizure would show some sort of random or unusual results even after the main event is over.
If you or someone you know suffers from migraines chronically [all the time] then you may have heard of them having such bad headaches that they see spots, lights, or even hear sounds. These secondary effect are actually called aura's and strange enough, in a small percentage of the population these aura's manifest into a sinister series of sensations. After some heavy reading I realize her first incident was a near perfect textbook example, so much so that I thought I had written it myself.
The diagnosis and prognosis; like a seizure patient it comes down to being smart and make sure she's under supervision in places where she might have an episode randomly. Medically speaking, if the events become more regular we'd have few options. Yet, we're still hopeful this is something she'll grow out of and even if she doesn't then it is something she could live with and have a rather normal life. I think that's a cause for a little happiness and a thankful outlook on life.
Thank you to everyone who donated, it helped immensely and we've been so inspired by everyone's willingness to help, offer advice, and donate their hard earned money. A lot of the donations are from strangers, some are old friends, and even a few people who have fallen out of touch because of differences.
You guys/girls are awesome.
She also asked me if we could get ice cream after dinner, if she was good. How could I say no to that??
As of right now, the differential had it almost 50/50 between being caused be focal seizures (the more common diagnosis) or hemiplegic migraine (very rare and even more so in children her age). Neurology was hoping to capture an event, small or large, that indicated a focal seizure but the preliminary results show no signs.
We'll see what tests need to be conducted from here.
Thank everyone so much for the outpouring of support. We're almost to our goal, and that is just a testament to how amazing our friends, family, and even strangers can be when they work together. I'm almost in tears at how kind everyone had been during this.
Here is a hilarious photo of Cailyn after four days of electrodes attached to her scalp. She was so happy to get them off!