Mayo Wrap-up

I'm so sorry it has taken us so long to get this update posted...

Friday started with a visit to the Pituitary Specialist.  His fellow saw us first.  She was very thorough.  Then, he came in and asked us how long it took us to get pregnant.  When we told him it was the first month we weren't "careful," he said that was all that he needed to know to rule out the hypothalamus/pituitary.  He said that it is difficult to get pregnant and requires so many things to work in the hypothalamus/pituitary.  Thus, if it was "easy" for us to get pregnant, he's not worried and sees no reason for additional testing.

The only testing that he wanted to confirm was the Diabetes Insipidus diagnosis (I excrete much more than I consume).  However, he said it would be "stupid" since we are pregnant (the testing is a water deprivation test).  So, he ordered a urine test while we were there.  Based upon those results, we might repeat the testing here.

Our next appt. was with the Keto dietitian.  She was precious.  She gave me access to the KetoCalculator (how you design meals on the Ketogenic Diet).  I have a new dietitian in Dallas, but she doesn't have KetoCalc access.  So, this should be helpful and they should be able to work together. 

The new dietitian agreed with all that I am doing and liked my spreadsheet (being OCD pays off occasionally)!!!  I asked her if she wanted to design my meal plan or adjust anything, she said she didn't, that she trusted the way I was doing the math.

The biggest key is going to be all of the growth studies that they will be doing throughout the pregnancy.  If I am losing weight or the baby isn't growing, we will adjust things.  Though my stomach is definitely pooching and pants are getting tight, we found when we got back home that I've lost weight.  So, I will probably need to increase my calories.  We will try to reach out to the new dietitian on Monday for her recommendations.

After this, we were able to get back in with the POTS specialist (the mean guy from NY) for a 15 minute appt.  I asked B if I could go by myself since he seemed to ignore everything I said and only listened to B.  So, B went back and packed everything for us while I met with him. 

It was a much nicer meeting.  I explained my frustrations with the way he behaved and why I needed to step out of the meeting.  Once he sat and listened to me, rather than telling me that I wasn't telling him the truth, things got better.  I shared with him that me repeating diagnoses from other docs was not me lying, but me repeating what we've been told. 

He also told me that he didn't like me dropping names.  I asked him what he meant by that...apparently, the doc that I saw for my POTS diagnosis (the study that I was in at the end of 2007) is very well known in the dysautonomia world.  I told him that I had no clue of that and if I was going to drop a name it would have been the neurologist that they brought in from the Cleveland Clinic before my surgery.  Once he realized that I had no clue that my POTS doc was a name worth dropping, that got cleared up, as well!

So, we got on the same page and were able to truly discuss the issue at hand (for over an hour and a half)!  Overall, he believes that most of my seizures are autonomic, but some might not be...thus, if we can treat the dysautonomia, we might be able to treat some of the seizures.  He wants me to increase my sodium consumption to 6-8g/day with most of it coming through food and the rest through supplements.

He said that most people grow out of POTS.  When I asked how long it takes, he said usually 6mos-1 year.  I am coming up on three years since I was diagnosed...so, he agreed that my case is different.

That was basically the end to all of our appts.  If you've made it this far in the post, thank you for your love and concern.  I know I have said way too much!  We sure appreciate all of your prayers!

As we have said from early on, we want God to be the hero of this story.  I had truly hoped that HE would use the Mayo Clinic to get us there.  However, it appears that HE is going to be the one, all by HIMself.  All of the docs there agree with my docs in Houston that this is a very rare case and they really don't know how to treat it. 

So, come on Lord!!!  You get to be the complete HERO of this story!  The #1 Neurology clinic in the world has said that they don't have an answer or a cure.  So, if I am healed, it is YOU, Lord!!  It will clearly be YOU!!  All credit is YOURS!!!