Day 3 Update - Neurology

Our third day here was every bit as wonderful as all the others.  We moved over to the Ronald McDonald House and settled in.  It is a wonderful place, the people are kind and compassionate and have found the jobs they were meant to be in.

BTW....You can really tell you are in the states when you see signs stating guns are not allowed in the building!  That catches me by surprise every time!  :)

Leah's neurology appointment was 2 hours long!  He had reviewed her entire chart the night previous and was well prepared to speak with us.  He took a very in depth history, asked lots and lots of questions and then examined her.  He even sat back and very patiently listened when Leah was telling me the ENTIRE plot line of the chapter book she had been reading!

He began to develop a diagnosis and then called a colleague and had a telephone consultation with her.  They both agreed that what she exhibits is Negative Cortical Myoclonus  - which basically means a seizure disorder that presents itself as a sudden unexpected relaxation of the muscles; as opposed to a sudden contraction of the muscles as is stereotypical of a seizure.  Cortical meaning it takes place in the cortex.

The area that the seizures would be occurring is deep inside the two sides of the cortex which is notoriously  very difficult for eegs to pick up readings on. If my understanding is correct for Leah it would be effecting the purple, red and yellowish areas.  

The good news is the MRI showed no further white matter changes, the one area she had remained the same and there is no evidence of changes in the areas the seizures are occurring.

She has been prescribed the anti-seizure medication Keppra, we will trial it for 1 month and see if she improves.  The neurologist has requested we keep in telephone contact with him so he can follow her progress.  He will be sending his recommendations on to her doctors at home as well.  As a precaution he has ordered a set of bloodwork to rule out an autoimmune issue causing the seizures but he is quite certain that it will come back as negative.

Is it great news?  Epilepsy?  Not great, but totally able to deal with it.  She would need to be on medication for the rest of her life, have frequent blood work to check the levels of medication in her system and make changes to it as she grows, hits puberty etc.  It will impact her for ever, and she will have a hard time making people understand because it is the opposite of what people expect.  But keeping things in perspective, when we are in the children's clinic and see the spectrum of disorders and diseases the other kids are coming in with, I am grateful that epilepsy is all we have to worry about.

So now we are heading back to Pannekoeken for brunch!

Leah wants us to split one stuffed with bacon and one stuffed with chocolate chips.  Not sure if my system can handle that in one day, but I feel like celebrating so I will pack some Tums and let her go crazy!  :)

After that, we head over to the overseeing Dr. for our follow up appointment.  There we will get her opinion on the blood work that was done and find out if we also have to face a lifetime of synthetic thyroid medication.  Again, in the grand scheme of things, more bothersome than anything and completely manageable., We will also find out if we have to stay longer or try and make arrangements to come home early.

Update to come later one!

Update from the Mayo Clinic Day 1

Hello from beautiful Minnesota!  I wish we were here sightseeing and heading out into the wilds because it all looks so wonderful!

We had our first appointment today, we saw the doctor that will be overseeing her case.  She is really nice, and we did a very thorough and comprehensive medical history and physical exam.  

We did agree to cancel some of the tests that were repeats or deemed unnecessary after our consult, so our estimate has dropped - thank goodness!  Now we will just have to wait and see what else gets scheduled based on bloodwork and the remaining tests.

During the physical exam she noticed goiter and has suggested Hasimoto's - she is curious why, based on Leah's history of elevated thyroid related tests results and the goiter why Endo would have said no endocrine involvement - also questions the specter of possible future autoimmune issue as suggested by the Endo back home.

Also suggests a possible Migraine variant as reason for the "episodes"- we have kept the Neuro consult, he is a sleep specialist as well and might have some greater insight into the overwhelming tiredness.

We are now #6 on the waiting list for Ronald McDonald house, possible to move tonight, more likely tomorrow, next day at the latest.  We are paying the reduced compassionate rate of $60/night at our current hotel and have a fridge but not a microwave. There is a small convenience store nearby but no grocery store.  They run a shuttle to Walmart on Wednesdays, so we will head over tomorrow to pick up some groceries and fresh fruit to keep in the room with us.  

We met with the Concierge Service they offer for International patients and we now have a list of low cost things to do in the area to keep her busy,  I think we are heading over to the playground/pool tomorrow afternoon after WalMart.  There is a pool at this hotel so we will be up there tonight and then have an early bedtime.  Tomorrow's first appointment is 730am.

Meals are a little difficult as it is a rather artsy downtown area without fast food joints :)  There are pubs, wine bars and steak houses ($$$$$) but having trouble finding small restaurants or diners.  We found a nice little dutch place (Pannekoken! - baked and stuffed pancake!) but can only eat there so often!

The hospital is amazing!  There is no such thing as business casual - even the volunteers wear ties.  Clerks at the medical desks wear black pants and crisp light blue button down uniform shirts.  Everything is handled in an orderly, efficient and patient centered manner.  Every single person we have come in contact with have been helpful, kind and polite.  We have heard a few people with the classic stereotypical Minnesota accent but not too many.  :)  

On the whole, other than the very long and involved process of getting through the admission and payment process this morning, things are going very well!  Leah is in good spirits and feeling good, she enjoyed the flight and tolerated it well.

Well I have obviously spent to long on the computer, I am being pestered to head up to the pool!