Hayden did really good on the drive up to Baltimore...it's about 3 1/2 hours north of us...thank goodness...traffic wasn't an issue either. We left early since you never know what the traffic will be like in Northern Va. We arrived at Hopkins early so of course it was a wait for us & Hayden was not real excited about that nor was Tim & the waiting area was probably 86 degrees, that set my cough off & my nose running...but finally shortly after 3 we saw Dr. Hartman. Hayden was examined & information reviewed.
Basically, it boils down to these options trying other medications (we were under the impression that really we had exhausted the medication route with Hayden...but apparently we haven't), testing for metabolic/genetic disorders, & /or trying the ketogenic diet. There is still room & time...up to 2 yrs before the grand effect is knowN... to make more adjustments to Hayden's VNS. The diet would take a week inpatient visit to get HAyden started with lots of teaching & learning on our part...think of it like the Adtkin's diet but with very specific measured amounts of foods given at very specific times of the day.
So we'll take time to research everything, the diet, medications, lab work....talk to Dr. Taft (Hayden's current neurologist at UVa) & make some decisions. Hayden's appt with Taft is 2/28. We don't make decisions quickly nor lightly.....these are serious things to consider.
Since Hayden's visit to Hopkin's in mid-February, we have returned to Hayden's pediatric neurologist at UVa. We have discussed many options & really the only thing open to Hayden is to try the ketogenic diet. Hayden is slated to be admitted to John Hopkin's in early April to begin the ketogenic diet.
Shayla is doing well. She has survived the beginning of the SOL testing, looking forward to soccer season & enjoys playing games on her iPod too much some times.
Tim & I are hanging on.
I plan to post here as we near the beginning of the ketogenic diet & how it affects us.
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