October 3, 2013

• When It Isn't Pretty

  Children grow.

  Growth is necessary.

  Growth is expensive.

  Sometimes

  Growth

  Is

  Heart wrenching...

  Joshua is on more medicines that I care to think about.  Some are for simple things like acid reflux & asthma.  Some are for more complicated things like epilepsy & aplastic anemia.   When you deal with medication, you learn that each fraction of an inch or ounce of growth that occurs causes the body to process the medication slightly differently.   When you deal with seizures this difference in processing makes itself know in no uncertain terms.  I know this.  We have lived with it since Josh was 2.

  Medications also react with each other.  Some medications can become friends.  Other medications are enemies.  Some will grudgingly come to a truce, a fragile truce.  A fragile truce that can be broken at the drop of a hat, or the addition of an ounce or two.

  Joshua's medication for epilepsy & his medication for aplastic anemia (AA) have been forced to live in a vary fragile state of truce, because, pure & simple, he must have both in order to live.  Joshua's recent growth spurt has disrupted this fragile state and there seems to be an all out war brewing.

  At last month's neurology appointment, we adjusted 1 epilepsy medication because for 3 months running, the lab results showed that the drug concentration in Joshy's blood was right at the bottom or below the level it should be.  We have tried not to adjust the medication in order to keep the truce going, but with increased seizure activity, it had to be adjusted.  We increased the amount by a very small amount, hoping to keep a balance.  The next week at his cancer center check up, the AA med was at the upper end of high instead of at the lower end.  Doctor wasn't concerned.

  Fast forward 2 weeks (3 if you count the week we waited to get the results)...

  Today Joshy's labs showed that the bottom feeder med for epilepsy is 3 times higher than it was a month ago and has now gone from too low to too high.   This, in and of itself, could explain Sunday's seizure/vomiting episode that landed us in the hospital.  We have adjusted the medicine once again, lowering it a fraction.  LORD willing, this will settle things down.

  Next week we have a cancer center check - to be honest, I am afraid of where his drug levels will be.   This medication must kept in check in order to promote blood cell growth, while suppressing the antibodies that are /were attacking those same blood cells.  They must be kept in check so that liver & kidney damage is kept to a minimum.  They must be kept in check to keep a balance in tact so that the blood doesn't revolt and move into full blown cancer.

  Sometimes growth isn't pretty!

  As a side note... Joshy's thyroid seems to be caught in the cross fire.  His levels are low this time.  We did not adjust those meds, hoping that once the other meds call a truce that the thyroid will straighten up and flight straight.

  • 9:03 am
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