Update- Treatment 3

From M:
This is a good explanation of how we all feel...exhausted.

 
It has been a crazy week!

The Lord definitely answered your prayers in regard to P.  I have been able to hold her this week and got to feel like her Mommy for the first time this week. 

On Sunday, I was able to hold her for about twenty minutes at church.  It was so precious and something that I've longed for since the day she was born.  Each day this week, I have had an opportunity to hold her, feed her, & snuggle with her!  Praise Jesus!! 

The first time that Miss P really snuggled with Me.

Starting to discover the world around her.

Praise the Lord, we have started to see a lot more smiles from her this week!!!

We have been overwhelmed each day this week as we receive updates from the bank and our sweet friends that started The Foxhole Relief Project.  First, you are all such amazing prayer warriors!  Thank you for calling out to the Lord on our behalf...Second, you have all been so sacrificial with your financial blessings, as well.  You exceeded their goal and have blessed us beyond words.  Thank you!!

This is D.  She has been our precious contact at Lakeside National Bank that has been taking care of everything...

Miss P was getting bored laying on her play mat.  So, she got an Exersaucer!  We put her in it for the first time this morning!

I think she likes it!!

Taking in all of the sights and sounds.

                                                                                                                                                        

From B:

Thursday was our third of twelve treatments at home.  It was also the first treatment after the Foxhole Relief Project.  Again, a very heartfelt and humble THANK YOU!  We continue to be overwhelmed with your generosity in prayer and financial support.  

We began Thursday with another rough start-a couple seizures, difficulty getting M’s IV line started, and then multiple seizures during the treatment and during the rest of the day.  It has been very difficult to understand and justify what we are going through in hopes of getting to the end of this journey.  So, with even more prayer together we have discussed whether or not to continue this treatment.  We did have an opportunity to finally visit with our specialist from Mayo on Friday.  It is his recommendation that we stop treatment…As we thought, M shouldn't have more seizures after starting treatment.  They have said she might not respond immediately and have fewer seizures, but she definitely shouldn't have more. 

He proposed that we stop the current treatment, and start high dose IV steroids.  This could become problematic as there are some very serious side effects that he warned us of, even more than the current treatment.  We were able to visit with our local neurologist on Friday.  She shared the same disappointment with the lack of a positive response to treatment.  She also brought up a great idea that might point to the reasoning behind an increase in seizures.  As many of you know, M has been following the Ketogenic Diet for 2.5 years to treat her epilepsy.  To the diet’s credit, M has had the greatest seizure control with the Diet alone and no meds (better control on the diet & no meds compared to the diet & meds).

The purpose of the diet is for the body to use ketones for the necessary energy our brains need to function in the absence of Carbohydrates or Proteins.  So, the diet itself is a very carefully calculated ratio of carbs, protein, and fats, eaten at specific times throughout the day.  It is tailored for each individual (down to the tenth of a gram).  Furthermore, we have seen that many medications can interfere with the diet's success.  For example, many patients that are on the diet will titrate off of their anti-seizure medications because you can actually overdose on the medication, causing more seizures.  So, we have seen over these last few years, by experience, that meds and the diet can provide for an interesting medical situation.   

After visiting with our local neuro on Friday, she brought up that the current treatment contains proteins.  This could mean that M’s diet is now out of proportion or that the ratio is no longer accurate and she isn't burning ketones.  Thus, we would need to recalculate M’s meals on treatment days to account for the protein in the treatment. 

We are not sure if this is in fact the correct answer or solution, but it seems to make some sense and seems to be worth considering, especially given the other option that has been proposed. 

So we are asking for your prayers for guidance & wisdom at this time:

1)  Do we continue with the present course in hopes that we will see improvement? 

2)  Is there in fact a correlation with the protein in the current IV therapy and the diet and our answer lies in adjusting the diet for the treatment? 

3)  Do we try the new proposed IV therapy? 

4)  Do we stop treatment?

M is averaging 3+ seizures each day (she had 6+ today) and it is wearing her out.

Thank you in advance for your prayers.  These last few days have been fairly difficult and we just want to see and experience healing.