Update from Cincinnati

Email sent to family and friends:

It has definitely been a long day.  Jason worked a 14 hour day Saturday trying to get our shower completed (which had a major leak and had to be ripped out completely and re-tiled) and then he had to work on it Sunday also.  I tried to help the best I could, along with cleaning and packing for our trip to Cincinnati, and doing laundry for the kids left at home - since I felt unsure about our exact timeline.  On Sunday, Jason worked from 3 until 2:30 AM on Monday.  I worked with him until 1:30 AM until I couldn't go any longer and knowing I had to get up at 5:30. 

 

The kids got off to school without a hitch this morning and we got on the road around 7:45.  The trip was easy besides the fact that Jason and I were half asleep.  About half way thru the trip we were both regretting the long weekend, but we both didn't want to come up to such a mess of a project.  We made it to Cincinnati by 12:30, found the hospital just to make sure we knew where it was and then we grabbed some lunch.  Our appointment was at 2:00 and we signed in by 1:30.

 

Dr. Wesselkamper (no joke, his nurse was Nurse Fledderjohn) had reviewed our file before we arrived.  He had already talked to the Ataxia (this is another word for dizziness that all the doctors use to describe Daegan's movements) Specialist, Dr. Wu, also from Cincinnati, that we were scheduled to see in January.  I had also sent a mom journal of what I have seen over the last ten weeks and my opinions weekly of ups and downs and he had clearly read that.  He had done his homework.

 

Dr W got to know Daegan and asked us questions and asked Daegan questions and did motor skill tests, etc.  He sat with us for 1 1/2 hours.   Dr W analysis is that Daegan's initial 3-day migraine spiraled him into the severe dizziness.  Then, thru dehydration (a concern we were dealing with under the watch of pediatrician at the beginning) his brain couldn't come thru it all and he developed the ataxia.  On top of puberty and his OCD/anxiety personality, and us "protecting" him and not pushing him to do more for fear he would fall, his brain has assumed the ataxia and inactivity is the new norm. 

 

Dr. W says he sees about 5 cases a month like this.  Not many come with ataxia as the problem, but they often come with different twitches (eg. eye twitches, motor tics) that the brain has developed, but they typically show up with kids around age 12 and are seen in kids that are overachievers, OCD, anxious kids.  It will happen with some trigger (Daegan's was the migraine, others can be a traumatic experience) and you have to recalibrate your brain if you can and treat the issues that caused the trigger to stop the symptoms.

 

What does that mean?  First, we will put Daegan on a very low does med that will help prevent the migraines (this has been his first experience with migraines, but mine began around age 12).  Second, we've been encouraged to have Daegan see a child therapist for awhile to help him learn to deal with his OCD/anxiety issues.  Throughout this entire ordeal I have said that Daeg is my silent worrier.  And, OCD - absolutely!  And Third, he just has to get back to school.  Initially, it will just be half-days.  But - this explains why once he decided to make his love of reading a priority and his time of being able to do it has extended from 10 minutes 6 weeks ago to now he can read an hour at a time - he still sticks to easier things that he knows, but he at least has been pushing himself and it has been working.  And this seems to explain why.

 

Dr. W says this will take months.  And, initially, it might seem like it is getting worse.  But he discussed this with Daegan and explained to him how to handle that at school, and I think that is huge to give him that expectation!  The Cincinnati office will be in touch with CCS and discuss how they want things handled and how they want Daegan pushed.  We will be in contact with them throughout the process and Dr W wants to see us again in February. 

 

So, what about the lesion on his brain?  That is still a question.  That is not being ignored.  We are going to have another MRI in February before our next Cincinnati appointment and see if there are any changes to the lesion.  Dr W will review the actual films together at the next appointment and compare the lesion readings.  If any major changes, we will obviously deal with it then. 

 

After our appointment, we found our hotel and crashed!  At 6:00, Daegan was desperately trying to wake Jason and I up so we could go get some dinner.  :)   We went to Logan's (Daegan is being treated to a lot of things that would never happen with the whole crew) and he got ribs.  Now we are crashed in the hotel with no hospital tests staring us in the face for the next day.  We will take a slow morning getting out of Cincinnati and head back home at some point tomorrow.

 

Thanks for your prayers, texts, calls, FB messages, etc.  We have felt them all and I have shared them with Daegan along the way.  He seems immensely relieved it is nothing "major" and that he is not getting a spinal tap tomorrow.  Jason and I are relieved of the same thing and we are looking forward to eight hours of sleep tonight. 

 

I feel like I am still processing this diagnosis, it is a lot different than what I was anticipating.  It seems a little bizarre, but as I've thought about it the last six hours, so many things make sense over Daegan's fluctuations of good days and bad.  We pray for God's guidance on the next step.