Sunday, January 15, 2012

Dantino, on his way back

Dante enjoys his new "brain food", with lots of extra virgin olive oil
Happy 2012, Everyone!

This afternoon Dante and I were working on addition.  Did you say "addition"?  Yes, I said addition.  We’ve come a looong way this month. I thank God for every meaningful look, every enthusiastic jump, and every second of laughter Dante has given me these last few weeks.  Now I will share what has happened.

The big wave of drop seizures that began last Summer has tried with all its might to keep us under.  Oh, but so many others have survived this wave that there is wisdom to be found for the benefit of all of us coming after.  I am passionate about weaning (withdrawing) Dante from Topamax – the medicine that took away his few words, his little fine motor skills, his cognitive skills, a lot of his gross motor strength, and most of his joyful laughter.  Topamax bought us time while we researched other options, but I am so ready to let it go.

I have known about the Ketogenic diet for intractable seizures for years, but I also was aware that it required a hospital stay and a strict fast, etc., which I was reluctant to put Dante through.  There must be a better way, I thought.  Thankfully, the folks at Johns Hopkins University are “on it”, and there is plenty of information on the web about the use of diet for seizures.  Kinder variations of the Ketogenic diet have emerged and have proven to be just as effective for children with intractable seizures. 

A little over two weeks ago I began to add a lot of healthy fats to Dante’s diet and to reduce his carbohydrates to a minimum, following the guidelines of what is called the Modified Atkins Diet for seizures.  I am very happy with the unexpected consequences.

Instead of being “out of it”, Dante has become very connected, with great eye contact and more laughter.  His eyes have been so communicative lately, which is pretty amazing.  The terrible side effects of the medication have slightly diminished.  It is so different from what we have had so far during the use of Topamax.  This week in school he worked really well.  It has been his best week so far!  The teacher told me he was answering by looking intently at his preferred answer choice – which is what I discovered at home! 

I decided to put this to the test and take it up a notch.  I know Dante knows numbers, but would he know how to add?  So I started with 1 + 2, simple enough, using blocks or trucks to represent the counts.  I held up three answer choices on papers in front of him for him to choose.  He chose “3”.  I excitedly yelled, “CORRECT!”  That made him laugh and got him all excited about answering more math problems.  He’s my son alright; loving the approval!

The interesting part about this process with the seizures is that the number of seizures per day has actually increased with the diet.  We are also using a new homeopathic remedy called Cicuta Virosa, which is for violent seizures.  Dante’s teacher has commented on how much more relaxed and happy he’s been since we started the remedy – but the seizure count is higher.  Yet he had the best week in school so far.  So the diet and remedy are competing against the medicines.  That is why four days ago, we took Topamax down 1 cap (he was on 4/day).  Dante’s response has been great; yesterday he had the lowest number of seizures since the diet began.
Dante carefully considers the sum of 5 bears plus 1 bear
Back to the Math:  Dante has gotten all his sums correct up to the number 6.  The “staring at the answer” approach seems to work well with him since he is not using his hands yet.  In my excitement after discovering this ability, I downloaded an awesome iPad app called Math Drills last night to see how he would respond.  It was bedtime when I presented the iPad displaying a blackboard with “3 + 1” written in chalk (a sum which we had practiced for several days before, mind you!)

I asked him, “Dante, how much is 3 + 1?”

He actually was able to use his voice. 
He said “IONKNOW”. 
“You don’t know?!  You DON’T KNOW? What do you mean “You don’t know”?  Have you been tricking me?” I yelled as I tickled him.

HE SPOKE!  1 Topamax cap down and I get words!

You are SO GONE, TOPAMAX, you have NO IDEA!!!

Needless to say, I did not ask him anything else.

And so, the work to surf this big wave continues.  There are several other awesome stories of Dante’s newfound connection and awareness which I will gather for another post.  I did not expect to have good news to share at this point in time, so it is a small miracle to see that we do have good news!  Dantino is on his way back.  We, and all the families struggling with their special children, can use all the prayers and good wishes you can send as we work our way safely to shore. 


Janice said...

Mom Connected: Wow, wow, wow! Such amazing news. So glad to hear that the Modified Atkins diet for seizures and homeopathic remedy are helping so dramatically. And Dante is doing math!?! That's amazing!!!! I always keep your family in my thoughts and heart. May this year bring much healing, health, joy and ease to your family.

Mom Connected said...

Thank you so much, Janice! The positive changes in Dante are very reassuring that we are on the right track. Your words are always very much appreciated.

Daniel Gonzalez-Diaz said...

Topamax: Pa' fuera!!!

Mom Connected said...

A eso vamos, hermano!!!!

Lucia Alonso said...

Dios es tan grande!!! Que emoción saber que mi Dante no tomara esa medicina!!!! Yay! De ahora en adelante todo positivo Dante, para tras ni pa agarrar impulso!!!

Tia Lucy te adora y siempre te tiene en sus ruegos. Dios te ayudara bebe, ya lo veras. Tu y alex serán los gran hombres que dios siempre quiso!

Mom Connected said...

Mil Gracias, Lucy! Tu entusiasmo es contagioso y muy apreciado. Vamos para adelante! said...

Great news! Congratulations on Dante's progress. You are doing an awesome job. Our thoughts and prayers are with you always.

Janice said...

How are you and the family doing? Thinking about you...