6 weeks into Topamax for seizures

Dante enjoys his toy train

Dante has been on Topamax for six weeks now as we attempt to control his new seizure variations.  These were the types of seizures he was having before starting Topamax:

• Myoclonic seizures:  a very quick head nod forward, followed by a jerk back, sideways or forward, any of which may cause him to fall down
• “Nods”:  his head nods forward but there is a slight or no jerk and no fall
• Staring seizures:  he stares without moving, drools

Two weeks into Topamax, the number of falls, nods and the frequency of him staring off into space greatly increased.  That was very concerning.  The doctor’s response was to continue increasing the medication until we hit the target dose.  I believe his brain was taking a huge hit from the medication as it slowed down the electrical storm going on.  Weeks 1, 2 and 3 on Topamax were the worst.  

After that point, as we increase the dosage and he gets used to the medication, the number and severity of the seizures has dropped significantly.  These are the seizures we are observing now:

• Milder myoclonic seizures.  He falls rarely now and the falls are softer, as though in slow motion.
• “Nods”:  his head nods forward but there is a slight or no jerk and no fall, now he remains with his head down for about 20 or more seconds, and then he’s fine
• He may have a nod and gets weak and then his arms stiffen and his fist, or fists, tremble.  He seems to be conscious but cannot control the trembling.
• He is really groggy and puts his head down for a few seconds.

On the one hand, it is easier to take care of a groggy child – but who wants a groggy boy?  I expect that the severity of the side effects should go down as time passes.  With him being so groggy still, I am hesitant to take the last step towards the target dose.

These are the side effects we are seeing from the Topamax lately:

• Dante has been quite groggy on/off since the last dosage increase 8 days ago.  It is not clear to me if he’s having a very mild seizure or is just sleepy, but he will put his head down or just look ‘out of it’ for a few minutes.  This has decreased slightly with time, but is the most concerning side effect.
• No words are happening and he’s barely using his hands.  It seems the medication makes his hands tingly and he avoids using them.  He’s also physically weak and not climbing onto the car nor onto the stool to eat. 
• Dante is stimming quite a bit.  He bends forward at the waist, clasps his hands together and hits his chin with them continuously.  This increases right after his medicine dose, but happens throughout the day as well.
• He has the same cold he’s had for the last three weeks.  Not as bad, but he’s still coughing sometimes during the night and upon awakening (with slight congestion).  Also, sometimes when he sneezes thick mucus comes out.
• He’s lost about 2 pounds.  He’s eating ok, but less than he usually does.

His behavior has been very good in general.  He has only been fussy when hungry or sleepy, or when he feels a seizure coming on.  He’s actually been sitting down sometimes when he feels one coming, which is great.

Grandma and Grandpa enjoy Happy Hour with Dante

In summary, Dante is better from his seizures, which is a very positive thing.  We have less stress with him falling so infrequently now.  My parents are visiting and they have been able to enjoy our time together, as well as quality time with Dante.  They are amazed with the changes Dante has experienced after the vaccine clearings.  My mom thinks he looks so handsome without the huge bloated belly, and they are both thrilled he is no longer headbanging.  I have also noticed that despite all the ups and downs, Dante’s eyes have remained aligned.  All of these are positive effects from the vaccine clearings.  I am hoping that we can retake the clearings very soon and continue to help Dante heal.