day 4-5 Sleep study

Too tired to think straight. Did the sleep study at Mayo last night. Went well but Sam did not have the episodes there that she does at home. At least not to my recollection. Apparently I slept through a lot last night. And the sleep techs at Mayo are very polite and won't tell you if you snore unless you really press them.

We did get a diagnosis yesterday. I still am not ready to talk about it. But I can tell you it is not life threatening. It is something we can work and live with.

we are still waiting on results from neurology, pediatrics, sleep and genetics.

I will tell you this:

Arrogance is a vindictive bed partner.

Day 3: Closer Still

Today was amazing. We met with the pediatric neurologist, who again, spent more time with us in one day than Sam's shrink in Dallas does in two months. Full interview and head to toe exam. Ms. Ped Neurologist told us afterward that nothing jumped out at her - that everything seemed relatively normal.

Then we were hurried over to the Sleep Disorders Center. The doctor we met there is ALSO a pediatric neurologist AND a sleep consultant at Mayo. He is a key player in all this. He gave us a preliminary diagnosis of three possibilities. It could be other things but he feels almost certain it is possibility #1.

Let me back up, before we came here, my Mom INSISTED we film Sam sleeping. Sam has extremely violent sleep habits. If you dare to sleep in the same bed with her, you will either 1. not get any sleep, 2. wake up black and blue or 3. Both...

It was a chore, but we got the DVDs made and brought them with us. Dr. Sleep watched less than 5 minutes today and says, "Do you see this?" and points to DVD image. "This is almost certainly Possibility #1 but we need to rule out Possibilities #2 and #3."

I am not trying to keep information from you. It's just that we don't have a definitive answer yet and I don't want to start any rumors. In addition, we would like to give the news to family first. No hard feelings...

So the big news I can tell you is that we WILL be doing a sleep study at The Mayo Clinic tomorrow night. HUGE Deal. They only do 4 pediatric sleep studies a night. The scheduler told me not to be late as there will be people waiting for an open slot. We will be an hour early!

We waited in genetics today for almost three hours hoping for a cancellation. No luck. Our first appointment tomorrow is at 2:30PM so we will go in at 8AM, get our name on the wait list and hope for a cancellation before our scheduled appointment. Genetic testing could go a long way in proving or disproving Dr. Sleep's three possible diagnosis. Cross your fingers for a cancel!

that's all I got tonight. g'night all.

Day Two: shoulda packed socks and gloves

Dang, it can get cold here! Just ran over to Target to pick up some food for the rest of the week. (bought two Minnesota Vikings shirts too - #4, Mr. Favre) But I digress. Brrrr. Cold. Raining. Glad to be in the warm hotel room now.

Today was a sort of hurry up and wait day. We had to be to the clinic at 7AM for a blood draw. NOT Sam's favorite activity. This meant we had to be up at 5AM and out the door at 6AM. Painful! Sam was such a trooper with the needle! And the phlebotomist had a hard time getting the vein. Without trying for too long, she stuck her head out the door and loudly exclaimed "I need some hands in here!" Another phlebotomist came running. Together, without another stick they got it taken care of wrapped up in no time. No tears shed.

Then we headed down to Psychology and Psychiatry. Sam took a series of psychological tests this morning. We met with Dr. Psychologist. Wonderful Woman! And we could watch Sam in her tests on a closed circuit camera from her office. Awesome!

We, the parents, had to fill out no less than eight different psychological questionnaires on Sam. The parent's point of view. I promise you, by the end of the last form, I was seeing double.
Never, Sometimes, Often, Always?
I had to read instructions three or four times to make sure I got it right - and still there is serious room for argument.

When we wrapped up there, we headed to Clinical Neurophysiology for an EEG. Sam does not have an appointment for this until next week (and since Sam does not have a trust fund, we will not be here next week). But we were told to go and check in at the desk and if there are any openings, they will work her in. We sat for about two hours only to be told there were no spots today. That's okay. We will do what we have to do. We are free tomorrow afternoon so we will go wait again.

After the EEG wait, we headed to another building for a speech evaluation. The Speech Language Pathologist (SLP) was a lovely young woman. She interviewed David and me and then gave Sam a few speech related tests.
And then the bad news...

The test results in receptive language (what Sam understands) and expressive language (what Sam says) puts Sam below a six year old level. The words 'severe' and 'profound' are once again attached to my child. That hurts the same no matter how many times you hear it.

But we press on.

Tomorrow we start with Pediatric Neurology. And then off to the Center for Sleep Medicine. I don't know if this means they will do a sleep study tomorrow night or not. If we do, I am volunteering her Daddy to stay with her. I did the last one - it's his turn now. And we all know how this will turn out. He will be watching Pimp Your Ride in our very comfortable hotel room while I am tossing and turning on a fold out recliner trying not to snore.

As I mentioned earlier, we will spend tomorrow afternoon waiting and hoping for a spot for an EEG. Please pray specifically that we can do this before we go home this week. The doctors we have seen so far have implied this is a priority.

Sam is holding up really well. She was very anxious this morning before the blood draw and then again when she thought she would have the EEG. We tried to tell her the worst of it would be that they will mess up her hair. No dice, she did not buy it. Her relief was palpable when we were told there were no spots.

David and I are exhausted. I am quite certain I snored in the lobby today waiting for an appointment. We brought books and magazines to entertain ourselves. They only serve to put us to sleep.

And you know how you hear about Southern Hospitality and all that jazz? Well they are just as hospitable in Minnesota. Everyone - shuttle drivers, hotel people, taxi drivers - not just the folks at Mayo are fantastic. It's like part of the curriculum in the high schools around here. Were it not for the odd accents and COLD, I'd feel right at home.

Checking out for the night. Will be back tomorrow evening with another update. Sleep well, friends.

Day One. Ballroom Dancing

Today has been exhausting and amazing. Without getting into politics, let me say this: there is a reason why it has been suggested to use The Mayo Clinic as the Gold Standard for American Health Care reform. THEY FREAKING KNOW WHAT THEY ARE DOING!

Today we first met with the Psychiatrist coordinating Sam's care this week. He spent at least an hour and a half with us. He listened, he questioned and he educated. I was so impressed. And that takes a lot for me after all the doctors and hospitals I have been to. He did not condescend or patronize. Another of my pet peeves. Score two for Dr. Psychiatrist.


After the first appointment, we had several hours before the next one. Walking through the lobby, we found them setting up for a ballroom dancing exhibition. No joke. And get this - several of the dancers are physicians here at Mayo. Unbelievable. At the end, they introduce this sweet little 98 year old woman. She had spent 50+ years as a nurse at St. Mary's hospital (affliliated with Mayo) and is an avid dancer. SHE DANCED! And in introducing her, the MC points out that this sweet little 98 year old retired nurse remembers standing in front of St Mary's hospital and watching FDR drive by in a parade with the Mayo brothers. FDR; as in President Franklin Delano Roosevelt!!!!!


After lunch we met with a developmental pediatrician. Again, relaxed Q&A and spent at least an hour with us. Even better, Dr. Pediatrician had SPOKEN with Dr. Psychiatrist and he had already reviewed her notes from our meeting this morning. Can you say Collaborative Medicine? When we came up here, we had psychiatry, psychology, neurology and pediatrics on the schedule. Dr. Pediatrician interviews us, engages and exams Sam, steps out for about 20 minutes and tells us he just spoke with Dr. Psychiatrist and they agree that Sam will ALSO see a speech specialist tomorrow. And they would like to do genetic testing, conduct a sleep study and have an EEG done. Hopefully we can get all this done this week. If you have any connections at Mayo - let me know!

I will likely be paying for this week for the rest of my natural life. And my insurance pays 90%. And if we get answers, it will be worth every penny!

The Mayo Clinic

Samantha - Dressed and ready to go this morning.

As this blog chronicles Samantha’s life and many challenges, it is only right to include the details of our visit to the Mayo Clinic. We left this morning and are now in Rochester, Minnesota for four days of tests and evaluation.

Why the Mayo Clinic you ask.

Several reasons. First, during the second half of the 2008-2009 school year, Sam’s teachers told me that she was regressing. Not plateauing, but regressing. This is over the course of about four months. It is one thing for a child to plateau and is to be expected occasionally. But to regress is another story entirely. Samantha’s teachers strongly advised we see a medical professional to determine what is going on in her head.

Please note, Sam is in the very best school available to her in the US. It is amazing that it is here in Dallas, Texas. Divine Intervention is more like it. This school is her best chance at a productive future. But the school has a policy whereby they will not keep students who are not making progress. If Sam were to continue her regression, it is very likely they would not allow her to return next year. That alone would be devastating.

In order to prevent expulsion, I did some research on specialist. The first one I contacted in South Carolina was no longer seeing patients. So I sought the advice of our pediatrician. She told me I would be hard pressed to get a comprehensive evaluation of Samantha here in Dallas. She told me to take her to a facility specialized in the treatment of the whole child. She suggested places like Johns Hopkins and The Mayo Clinic. I started calling around and decided on the Mayo Clinic in Minnesota.

After applying, the Mayo Clinic accepted Sam as a patient. She will see a developmental pediatrician, a psychologist, a psychiatrist and a neurologist and anyone else they deem appropriate after we get there. They will evaluate and treat the WHOLE child – Sam. As it is so far, and through no fault of their own, we have been going to numerous doctors to treat this symptom and that problem. No one doctor, other than our pediatrician, has seen the whole child. So collaboration is a key component of this trip.

Some of our goals for this trip are: Do we have the correct diagnosis? Are we using the right medications at the proper dosages? What kind of treatments should we seek going forward? What might have caused Sam’s regression? And the million dollar question – which no one will likely answer – what is Sam’s prognosis? What can we expect in 10 years? 20 years?

It should be a good week. I’ll keep you in the loop as best I can.

THANK YOU to our friends and family that have sent love and good wishes. It is your support and encouragement that keep us going. Please continue to pray, light candles, chant, meditate – whatever it is you do to put good karma out there for Sam. As usual, we’ll take all the help we can get!