Monday, November 14, 2011

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.


Janice said...

So happy to hear that Dante's seizures have decreased. This is very good news. Sorry to hear about the side effects though... I also hope that these decrease with time.

You and your family are never far from my thoughts. said...

So glad the seizures have lessened. You guys are in my prayers every day. God bless all of you.

Mom Connected said...

Thank you both so much for your prayers and support. I treasure your words for my son and send my own positive thoughts and prayers to your precious little ones!

JTomasini said...

Estimados amigos: ustedes me han brindado una leccion de vida y dedicacion a su bello y hermoso hijo. Estoy muy conmovido por este esfuerzo titanico en formar a un ser humano. Yo le pido al Señor, con toda la fuerza de mi corazon profundas bendiciones para todos. De verdad, no tengo palabras para expresar mi orgullo en compartir amistad con ustedes. Me brotan las lagrimas de extrema alegria porque me han brindado, como mencione, una leccion de humildad. Los quiero y aprecio. Tomaso

Jason McGrath said...

Does a ketogenic diet help with seizure activity? I recently read a UK mother's blog (Erin's diet) about recovering her daughter from Epilepsy - not autism - using a healthy version of this diet using healthy oils/fats, not the bad ones.

Mom Connected said...

Yes, the Ketogenic diet is used very successfully for intractable seizures in children. Many benefit considerably. However, families have found that the diet does not need to be that strict to be effective, plus you don't need an initial fasting period in the hospital. A Modified Atkins Diet (MAD) and a Low Glycemic Index Treatment (LGIT) are loser variations of the diet and also seem to be very effective. The MAD seems to be just as effective as the Ketogenic. Here are some links that I found to be very informative:

Mom Connected said...

Oh! Something else that's important is that it appears -per the studies done- that the improvements in seizures achieved through this diet become permanent after a period of time and the children are able to expand their diets.

AnxiousDAD said...

Creatine deficiency please check with your neurologist about this.