May 31, 2012

Complications from Depakote

The likely culprit for Bertrand's recent hospitalization was depakote.  This has been the most effective seizure medication for him to date, but it has many nasty side-effects.  We were aware of many side-effects, including liver damage, and were monitoring him for symptoms.  Now we have to watch for a few more: hyponatremia (low sodium) and bone marrow suppression.

Bertrand caught a typical virus.  (He goes to preschool, therapy, dance, playgroup... he could've caught a bug anywhere.)  And then entered a vicious cycle, due to undiagnosed hyponatremia and bone marrow suppression.  The hyponatremia alone could've killed him.  Normal values are 135 mEq/L.  He was at 4 mEq/L.  The bone marrow suppression resulted in low counts for all blood cell types--white, red, and platelet.  To fight an infection, you need plenty of all of the above.

We are incredibly lucky that Bertrand got sick exactly when, where, and how he did.  He was already in the hospital (for a different procedure), with the A-Team for doctors.  They acted fast, and he is now on the mend.  Bertrand sure knows how to keep things interesting!



A few more items learned from this week:

The targeted dosing greatly changed Bertrand's nighttime EEG!  He is no longer in status epilepticus at night, which means the valium protocol is no longer right for him.

The looping episodes, of which multiple were caught on EEG, are NOT seizure activity.  In fact, Bertrand's EEG is almost normal at those times.  These are periods of alertness and a manifestation of his movement disorder.

Once Bertrand is well, we will conduct another sleep study to see if apnea is waking him at night, thereby triggering those looping episodes.

We will also see about lowering/eliminating Depakote, and/or we may continue to tweak his medication dosing to target the night seizures better.  As a substitute for Depakote, Bertrand may try Clobazam.



Next Monday, Bertrand has appointments with his pediatrician and his metabolic doctor to follow-up.  He'll be getting labs drawn then too.

To be on the safe side, I've ordered some salt tablets for him.  Each pill contains: 215 mg sodium, 63 mg potassium, 11 mg magnesium, 22 mg calcium, 100IU Vitamin D.  Bertrand can take 1,200mg of sodium per day, so depending on what he has to eat on any given day, he may get 1 or several.

Paranoid much? me?!  Nah.

8 comments :

  1. Sending prayers and good wishes your way. I'm glad you are smart enough to process all the complexities. It sounds very challenging. Bertrand is lucky to have such great, loving parents.

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  2. A little paranoia is always healthy. Also, good to see that the looping thing is not another form of seizure! All the best guys!

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  3. Clearly you all need more bacon in your diet. Love and hugs to Bertrand (and you).

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  4. Barbara @therextrasJune 1, 2012 at 6:48 AM

    In equal portions: grateful for accurate diagnosis & treatment options. Questioning medicine is a learned behavior, not a mental illness symptom - in my book. Your appropriate paranoia is well reinforced. Hugs!

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  5. I came across your story via "Hunting Down my Son's Killer". You, your husband, and your son are amazing. Your son is an inspiration to many. I, too, know what it's like to search for answers about your child. Our daughter was recently diagnosed with 22q 11.2 Deletion Syndrome and it took 6 1/2 years for her to be diagnosed.

    Always be your child's voice. You are doing an fantastic job. Thank you for sharing your story. My thoughts and prayers are with you and your family.

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  6. Thank you all! Bertrand is back to about 80%. I think being able to sleep through the night without pokes or vitals is helping him recover faster. He is in great spirits with unlimited Elmo and cuddles. :) His CBC shows his counts improving, so we hope he'll be back to 100% soon. :)

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  7. Great that B is returning in health! I was curious: has he been tried on Carbamazepine before? I'm guessing maybe it has some of the same concerns regarding his liver, but from my own work I do know that it's cellular targets are quite similar to valproate (they both target histone deacetylases (HDACs) and phosophotidylinositol cycling). So as long as it wouldn't put B at risk for the same complications as valproate, it still could be similar enough to help seizure reduction.

    ~Emily...

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  8. I don’t think that’s too much paranoid. It’s still best that we think of our health before anything else. I was diagnosed of hypopnea and after that, I became conscious of everything even on the food that I eat..

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