Re-starting the Prevnar clear

I am happy to report that things seem to be improving for Dante.  I have been optimistic because his overall wellbeing and his behavior have been so awesome since we were using the hyperbaric oxygen chamber.  On the other hand, the numerous seizures he’s been having have been very depressing.  We finished the hyperbaric oxygen chamber therapy for now, and I am hopeful because the total number of daily seizures has gone down.

Riding the mall train this weekend

RE-STARTING THE PREVNAR CLEAR:

A week ago I gave Dante the first dose of Prevnar 200c (for more information on the dangers associated with this vaccine which we are clearing, please see the bottom of the post).  He became fussy a little while after, and then went down for a nap.  He woke up from the nap super happy and energized, and that pretty much describes what Dante has been like since then.  He has been “On”, very aware.  He was very resistant to putting on his helmet and also very resistant to taking his medications.  He is more aware when the medicine is coming and will quickly move his head to avoid the spoon.  His eye contact has been great and persistent; and his eyes are very aligned.  I believe that the hyperbaric oxygen chamber helped him in these same areas (except for the eye alignment), but I saw an even greater shift after the Prevnar dose. 

The day after the Prevnar dose Dante was just the most awesome and cool little boy.  He was so connected: 
+ his smile was big and beautiful and knowing

+ he was curious about everything and exploring so much more

+ he was playing with the ball all around the house

+ and exploring outside in the yard

+ he was looking up at me!

Because of the numerous seizures still occurring, I increased Dante’s medication (Keppra) two days after the Prevnar dose.

Two days after that, and with no change in the seizures yet, I gave Dante the second Prevnar 200c dose.  He avoided the remedy spoon for a while but eventually took it.  He became very happy and energized right after.  It was close to bedtime and he went down peacefully at his usual time.

The next day I observed numerous headnods (the slight seizures he’s been having), however, because they were so mild, most of the time he did not fall down.  They were more often than in previous days but he had fewer falls.  I do believe that was part of the remedy aggravation.  Thankfully, the number of seizures has gone down since that day. 

Dante was an awesome mall companion this weekend.  We walked the whole mall looking for the nicest looking elastic waist pants for my skinny boy.  He dropped to sit on the floor several times from being tired, but we survived the trip, both of us exhausted.

Two days ago, after our trip to the mall, Dante got the first Prevnar 1M dose.  That night he was up in the middle of the night, something very unusual nowadays, from 4-7:30am.  He was happy as could be.  He eventually ate and finally went down to sleep.  I believe that getting up during the night was also an aggravation from the remedy, plus he has been hungrier, peeing more, and drooling a little (which had stopped).  Yesterday the seizures were not that many and many were mild.  He was definitely fussier, but we were able to go to the mall again to exchange the pants I searched so long for.  While we where there we enjoyed the kid train that rides around the mall.  That was fun.

Dante at the pool, earlier this month

So all in all, I’m glad to see improvements.  I pray that we are doing exactly what we need to do to get Dante’s seizures under control; we can only increase his medication once a week.  I am already happy with how well and happy he has been these days.

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