Thursday, April 19, 2018

April 19, 2018 -- How Did Hope's New Neurologist Appointment Go?

Thank you so much everyone for your faithful prayers for our Hopey girl as we took her to a new neurologist appointment yesterday.  Here's an update on how it went . . . 

When the neurologist walked in the room, we knew immediately that we actually had seen her before.  She remembered and knew Hope as well.  We think that she probably was one of the many doctors that saw or collaborated with other doctors for Hope during her initial 5 month hospital stay.  It is always sweet to see another familiar face that knows at least a bit about Hope's long history and even marvels at how far she has come, which is exactly what this doctor did!

So, I will start with the GOOD NEWS!  Our appointment went awesome!  She was great in listening to Hope's past 2+ years history of seizures and the general patterns that we've seen, as well as the recent trends we've noticed.  She talked with Hope about her headaches and some of the "feeling unwell" symptoms that she has been having more of recently, as well.  Hope was relaxed and open and did a lot of the talking for herself on symptoms, which is wonderful to see!

The neurologist decided to leave Hope's current seizure medication dose alone, since although Hope has had more seizures these last two months, the seizures themselves have been shorter and less severe.  She agreed with us that Hope seems stable, although the goal is always NO seizures.  She also agreed with us and the research that we have done that says her current med, Keppra, does not have any better efficacy (or seizure control) with higher doses than the already quite high dose that she is on.  She affirmed our concern that the risk of increasing her dose further was no better seizure control with likely worsening side effects.  This was music to our ears to hear her say this!!!  Hope's previous neurologist had a philosophy of just keep increasing the seizure medication until side effects are not manageable.

The new neurologist also came up with a GREAT suggestion, that we have considered but have not had addressed by a doctor before.  She felt that Hope's headaches and "unwell symptoms" had a lot of similarity to migraines and could in fact be migraines.  She also suggested that the best way to treat migraines is to take high doses of a B vitamin called Riboflavin daily, especially during the winter when migraines tend to be worse.  She said it won't hurt her and could possibly be a help for the headaches!  This was a fantastic suggestion and made us so excited to have a non-chemical option to try to treat some of the nagging pain and unwell symptoms that Hope regularly deals with!  The vitamin is a little difficult to find, but Hope's daddio found it this evening and Hope will start it tomorrow morning.  It would usually take 2-3 months for a good effect from it, but it certainly doesn't hurt to start it and see what happens!

So lots of good news!  Simple!  Treatment with a harmless vitamin!  Hope relaxed!  Familiar doctor!  No increase in Hope's seizure med!  Doctor on the same page as us!  God blessed us incredibly and we wanted to share these praises with you so you would be encouraged as to the power of your prayers and the faithfulness of our mighty and merciful God!!!

So one last thing to share . . . it is the BAD NEWS . . . or as believers, what we know is just more opportunity to be in prayer and seeking our faithful Father through . . . 

This wonderful encouraging new neurologist is leaving to another part of the hospital and will be unable to continue to see patients in clinic.  So, this was our first and last time seeing her.  Very sad about this!  Hope still does not have a new neurologist.  In 6 months, they want Hope to come back again and are hoping to have a plan for a neurologist that will follow her long term at that time, although long term will only be until she is 18 years old, and that is quickly approaching . . . yikes!  How could that be!?!

Please continue to be in prayer for a good situation and neurologist that will be able/willing to take Hope's care on.  We trust that God will provide as He knows best, and we continue to pray for Hope's healing!  Thank you dear ones for partnering with us in prayer and for loving our sweet girlie!!!  You are part of the story that God is writing for Hope and you are so loved!!!


  1. So great to hear the good news ❤️ Thank you for all of your updates!! Keppra is what Earl takes too! Does Hope take the extended release tabs? We continue to pray for your family as the LORD brings you to mind! xoxo

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  4. How has the Riboflavin been working? How are Hope's headaches? I started getting migraines in 1988 and someone suggested an herb called Feverfew. Bought at any health store. Again... it's something that takes about 3 weeks of taking every day to finally "kick" in but as long as I was taking it, faithfully, every day, my migraines were kept at bay and even regular headaches became few and far between. God Bless y'all real good. Your continuing trust in the Lord is inspirational, to say the least.