And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Tuesday, April 19, 2011

Day 2

Just a few quick updates.

We woke up to snow today in Rochester!  There is supposed to be a high of 92 today in Dallas!


We met with my Neurologist today. 

I left frustrated because the doc basically said he doesn't know why my seizures have increased by about 600% since P's birth.  He threw out the idea of starting a different med.  However, we have seen such great results with the Ketogenic therapy and no meds and not so great results when I was on meds (i.e., yucky side effects and much less seizure control). 

Despite the major increase in seizures since she's been born, I've had 25% fewer seizures on Keto and not taking any meds vs. taking meds.  Thus, meds aren't an exciting idea for me.

The doc doesn't want to prescribe anything (or even give us any kind of answer) until I meet with the Neuro-Immunologist tomorrow.  When you travel this far, you want to walk out of each appointment with answers.  So, it's frustrating to have been here for two days and feel like we've not really accomplished much.

B worked to encourage me that:

a.) I left this frustrated last time, but we received a call almost a month later with the results of the antibody test
b.) This doc doesn't just give answers.  He likes to listen, collect data, and then go do research.  Then, he reports back to us...
c.) This is all in God's timing.

I'm trying to hold on to each of those things.  It's just so hard to be so far away from our sweet little girl and feel like we aren't getting answers.

Looking to tomorrow:

Tomorrow will be a very busy day.  We meet with:

*the POTS (Postural Orthostatic Tachycardia Syndrome) specialist
*an OB/Gyn
*the Neuro-Immunologist

Please pray for our schedules and that we will be able to uncover some answers tomorrow and direction in treatment.  Specifically, we are praying that we are able to leave here knowing/having started the treatment that will work to close out this chapter of our lives.


  1. Praying for you!

    I understand the pain...because we are living it too. It is so hard to see your 13 year old go down hill in just 10 months. Not able to go to school...and have very little energy. IF he does to much seizures goes horrible. Do very little seizures are not there. The ones we hear is "gasping" at night and I wonder if he isn't having "apnea"

    We are getting some answers....PLEASE focus on the POTS and ask them to do labs for mitochondrial diseases. It brings on seizures...and POTS!! It explains it all....some of it is hard to hear. Again...knowledge is power and if you can find out if it is a mito disorder and which one there is enzymes...that can help. Caleb has done well with digestive enzymes it reduced his episodes over 100 a week.

    Is she on any medicines for her POTS? Caleb is now on Milodrine and florinef....he is now episode free the last 3 weeks after adding Milodrine. What was happening is after eating blood would go to the stomach (a pint)this would make his blood pressure drop 20 pts. Caleb body couldn't handle it because he was already this would throw him into a horrible "episodes"...fainting or a seizure like episodes. And when he would have many episodes, he couldn't talk and cognitive was real low. In August my son didn't know his name. They can't blame this on seizures because it comes back. It is due to the POTS with the low blood volume and blood/oxygen to the brain. I wonder if Meredith is having this problem to because when she was pregnant her blood volume was up so she had better days?

    We seen Dr. Grubb-Toledo, Ohio....the best POTS specialist in the United States. Mayo Clinic sends allot of their worse patients to him. He spent 3 hours with us and in the first 1/2 hour we heard "mitochondrial disease". PLEASE start focusing on the is worth it. PLEASE REMEMBER the neuro's won't believe this....I had to FIGHT for Caleb they just blame this on Seizures. Your blood pressure and heart rate has nothing to do with it. WELL we are proving it...because the 2 medicines are working and he is again seizure free during the day the last 3 weeks! Yea!! (first time since getting sick last summer) Diet...things will have to change for some reason with POTS ....dairy and fat...beef...etc. is hard to digest and many POTS patients can't handle it and will cause episodes.

    Thinking of you. If I can do anything or give more info please contact me. Please....keep at it...I know it is so upsetting when all the neuro's want to do is change doesn't work BECAUSE THE PROBLEM ISN'T COMING FROM THE BRAIN!! IT is a symptom of the problem... Sorry....I just get so mad! It will all be worth everything we have went through if I can help even ONE person!!!!

  2. We're praying for you guys!!


  3. So glad that Little P gets to spend some quality time with MiMi and Pa, praying that you get some answers!