Mayo Post-Mortem

It has taken me almost a week to settle back into regular life and reflect on all that happened while we were at Mayo.

Let's start with our overall experience - amazing!  In every way.  The hotel stay, Ronald McDonald House, every staff person, volunteer or nurse we saw - all amazing!

The doctors - Each doctor we saw took the time to review her history and come to the appointment informed but with an open mind.  We weren't rushed, they took the time to ask and answer questions, each doctor at one point or another consulted with a colleague on our behalf.  Each discussed with us the tests they wanted to order, what they expected the results to be and why they hadn't ordered others.  We were active participants in each appointment.  Our concerns were heard and addressed, our opinions and thoughts were valued and our hard work and research were appreciated.

I have already had one telephone conversation with a doctor since we have been home and have a few more scheduled.  They are quite interested in being kept up to date on how she is doing.

The results - We are still waiting for a couple of bloodwork results to come back. The results that we are waiting for will tell us if there is one or multiple  autoimmune issues affecting her.  With autoimmune disorders, you can only treat the symptoms so we have gone ahead and started the treatment for Hashimoto's Disease and the seizure disorder.  Leah started the medication on Friday and so far seems to be doing well.  We haven't seen any of the possible side effects, which is very comforting.

We have ordered her a WobL watch, it is made specifically for kids with medical issues.  It has multiple alarms to remind her to take her medications, the alarms can be audible or vibration.  I have read some very good reviews about it.

We will also be speaking with the school to obtain the necessary paperwork for the No Child Without Program for a Medicalert bracelet.

We have been to see her pediatrician and he has agreed to re-write her prescriptions and order her follow up bloodwork.  So that is a big relief.

Currently Leah is enjoying her time at the cottage with the rest of the family.  I get updates throughout each day about how she is doing and Paul is keeping a journal to track her health and episodes.

Final Tally - we haven't gotten the final bill yet from Mayo, but I kept a very, very close eye on our account while we were there.  The poor ladies in finance knew me by name!  We are still waiting for the doctor's fees to be added to the bill.  But at this point, based on the estimated amounts, we will come in under budget for the trip!  

Back Home

Just a quick note to say we are back home safe & sound and working on getting settled in.  We got back to our house around midnight and I started back at work at 830am the next morning.

Leah has been given the go ahead to make the trip to the cottage for two weeks with the rest of the family, so we are also busy getting that together as they all leave early Saturday morning.

I should have a complete update on the last day at Mayo and our plans for follow up and going forward done by Monday!

Thanks as always for all the good wishes, help, love and prayers!

Kate and Leah

A Weekend Away from Mayo

Hi everyone!  And a special hello to the staff and customers at Kay's Korner Variety!  A little bird told me our updates are being shared at the store!  Thanks everyone for your care and concern.

At Leah's appointment on Friday we learned we were being booked to see a Hematologist.  It would seem that Leah has also been experiencing an ongoing cycle of low neutrophils.  Her neutrophil level this week was in the 800s.  Normally it should be over 1400.  Looking back over the last 3 years of bloodwork we had on hand, a pattern of low and then normal levels can be seen.  This is called Cyclic Neutropenia.

My understanding at this point is that all three issues - Neutropenia, Negative Myoclonus and Hashimoto's can be attributed to autoimmune issues.  When I asked the doctor if they could all be cause by the same issue, I was told it was possible but not probable.  Now personally, I can't wrap my head around Leah have three separate and distinct autoimmune disorders.

On one hand, I am extremely glad we didn't make the trip all the way to here to be told "there is definitely something going on but we don't know what".  But on the other hand, being presented with three test verified disorders is overwhelming and a little daunting.

So with that in mind, Leah and I played hookie this weekend, we rented a car and drove to Minneapolis.  We spent Sunday at Nickelodeon Universe and Monday at the Sea Life Aquarium.  Leah had a great time  at Nickelodeon Universe, it is perfect for someone her size, she got to ride on every single ride - and some of them made the adults scream!  :)

 But I think she may have overdone it on Sunday.  She spent our entire trip to Sea Life and the Mall of America today in a wheelchair, curled up in a sweater and under a blanket.

She has been having some small episodes - I guess I can officially call them seizures now.....throughout the week we have been here, today's we can classify as an average one.  She was able to stay awake, but not as engaged and definitely not showing the enjoyment she normally would have.

Tomorrow we speak with hematology and find out what Cyclic Neutopenia means for Leah.  And, if all goes well,  we will be heading home in the evening!

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!

Day 2 at the Mayo Clinic

Our second day at the Mayo Clinic was just as good as the first.

Leah had a round of blood work first thing and then we went straight over to her Autonomic Testing.  This testing allows us to see if her Central Nervous System and her involuntary reflexes are working properly.  This test rules out Postural Orthostatic Tachycardia Syndrome (POTS).  I was able to be in the room with her throughout the testing (which was very cool!) and she had no issues with any portion of it.  Her heart rate and blood pressure remained stable, she had no symptoms of her episodes and her CNS responded normally throughout.   So another thing to cross off our list!

Next we headed to MRI.  Leah breezed through her last MRI and so she had no hesitation about heading into this one.  In fact, she was so calm that part way through it she fell asleep!  I am anxious to get the results back on this to see if she has developed any more White Matter Changes or if the one noted previously has changed at all.

The super awesome cool part of all of this is, Leah has an online patient account with Mayo.  When test results are ready, they are immediately posted to this account!  The Doctor's notes, clinical notes, medication history, immunization history, medical records etc are all immediately updated within this online account.

So Leah's bloodwork results are already posted, based on those and her symptoms is seems like a diagnosis of Hasimoto's is coming.  We will find out more on Friday afternoon.

Today we are packing up and making the move to Ronald McDonald house!  This will be a big relief and money saver for us.  We will actually end up being a little further away from the hospital but shuttles run about every 15 mins, so it really won't be that big of a deal.  

Leah also has her Neurologist's appointment this afternoon - we will update afterwards!

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!

Gettng Ready to Leave

My mother drummed this sentiment into our heads as children.  With this in mind I will just give you the facts of our last days at McMaster.

Sunday afternoon we were surprised to see two Drs. from Infectious Diseases.  A medical history was taken and then they conferred.  Their opinion was they were 99.9% sure that she did not have Lyme Disease or any other Infectious Disease and a lumbar puncture was not necessary to support that decision.  In their minds it is a open and shut case.

Monday morning came and with it a change of on-call Neurologists, we finally saw the neuro that we regularly have our appointments with.  He had been in contact with the other Drs throughout the week and they had come to the conclusion that all we had managed to capture on the monitors was "a whole lot of normal".  All they could conclude was that her minor events did not register on the monitors and she had no episodes of sufficient intensity to review.  As usual, the enigma that is Leah, has left her doctors baffled.  Their parting words carried a suggestion of a pediatric psychiatrist to assess stress levels as stress can do many things to a body.  With that, we were discharged.

Normally such a suggestion would have incensed me, but I had been expecting it.  In speaking with other parents who have been seen by this team, it is a very common "go-to" diagnosis.  When they can't figure it out, it must be psychosomatic.  And as a side note, anyone that truly knows Leah knows that she is so laid back and relaxed, that the idea of stress induced symptoms is laughable.

The six days since her discharge have been a whirlwind of activity.  Losing an entire week to the hospital admission had created chaos at home and in our planning.  Last minute errands such as getting her passport, packing, getting the household stocked up and ready for us to leave, doctor's appointments and finding time to spend some quality time with the other kids before leaving again; have all managed to suck up every available minute.

We leave the house tomorrow morning around 4am.  We board the plane at 6:35am and arrive in Minneapolis at 8:15am  Central Time.  We then board a shuttle bus to Rochester and will arrive at the Mayo Clinic around 11am.  Then the real adventure begins!

I am bringing our laptop and plan on updating as new information becomes available.

Before we leave, I have a message from Leah to pass along.....