A Ryan update

As mentioned in my last post, due to concerns with many of Ryan's most recent symptoms, our usual 3 month follow up with his doctor was bumped up to this month. We had the MRI and the appointment yesterday. It was a very long, 12 hour day in Aurora.

Here is the update:

• The doctor determined that many cognitive problems, addictive behavior, impulsive/deceptive behavior, and excessive lethargy that Ryan is increasingly struggling with is something called dopamine dysregulation syndrome. At the very least, because of Ryan's two resection cavities, the dopamine receptors are impaired and/or disrupted. The doctor has prescribed a new medication to help regulate the dopamine levels as much as we can until we learn more.

• Like us, the doctor is concerned that all these symptoms are coming to a head, and we're not seeing anything indicative on MRI scans. To remedy this, she has ordered another type of MRI to map his dopamine receptors to help determine the extent of damage done from prior surgeries, or to possibly determine if she is missing tumor growth somewhere that may be obstructing the receptors. We should be getting in to have this second MRI either by the end of this week or the beginning of next. We'll know a bit more then.

• The doctor also wants to confirm via sleep study that the dopamine dysregulation is what's causing such fluctuating issues with poor quality of sleep/nightly seizure activity.

• A neuro-psychometric test was ordered for Ryan to determine how extensive the cognitive damage is as well.

• On top of all this today, we finally cleared the air with the doctor and have a plan for further communication moving forward.

Praises: 

-After months and months of frustration, heartbreak, and increasing symptoms, we're excited that we might actually have some tangible answers.

-We clearly expressed to the doctor our need for more communication when she pursues new medications, referrals, treatments, etc. She understands that we want to know and be fully aware of her "bottom line."

-We're slowly but surely learning how necessary it is that we give ourselves breaks during this time. We're getting much needed rest and clarity.

Prayer Needs:

-Please pray for God's divine grace to continue to cover our family as we adjust to the new and different side effects of Ryan's new medication.

-Please continue prayers for a clear path forward. We are in such a foggy part of this journey but, despite the fact that most of these possibly contributing factors aren't good ones, we look forward to and are more than ready for answers.

-Please pray for familial oneness, understanding, and encouragement. Our hope is that communication remains open throughout this process, and that we all seek to press deeper into the arms of Christ together and as individuals.