Tuesday, January 7, 2014

A Medical Update and More

Brayden has started his wean off the ketogenic diet.  His is in the 2nd step down of 8 steps.  He should be off the ketogenic diet in February.  A couple of Brayden's seizure medications have been increased (his Phenobarb and Lamictal; he is also on Keppra) to hopefully curb the effects of coming of the diet.  His neurologist also gave us a list of what to do/med to introduce if we started to see more problems with seizures.

He does have seizures daily, so we are monitoring and so far we have not seen any significant problems.  Amen...cause I hate seizures, I hate what they do to him.

The ketogenic diet has been our guiding path for Brayden's medical care since he started 3 1/2 years ago.  Every few months we check in with the neurologist and nutritionist (his pediatrician and GI doctor have been involved with them as well).  His labs were checked all of the time, so we knew what was happening with his body.  Before the diet, NOTHING was pro-active, it seemed like we were always waiting to put out another fire.  In a way, the ketogenic diet provided comfort, not just for seizure control, but with his health because he has been so closely monitored.  Coming off the diet, I am trying to adjust Brayden's care and get back into a regular routine with Brayden's other doctors.

For his bone health: He is coming off the ketogenic diet to help, as well as a super duper Vitamin increase.  He will go back to the Children's bone health clinic in March.  We are still having problems with his right leg being extremely tight and uncomfortable...it could be his femur still not healing or just his muscles being too tight yet again and time for Botox so I hope to see his othro dr soon (his regular ortho dr not directly part of the bone health clinic).

Then his GI and pancreas troubles, it will be interesting is see how his body will adjust to not being a such a high fat diet.  His pancreas and GI system was not a huge fan of food to start, then the ketogenic diet needed more adjustment for him to absorb and digest.  For what we have seen so far...well, some interesting diapers.  Brayden will be seeing his GI doctor this week.

We also check in with his nephrologist.

We will be making the rounds.

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