Sunday, December 11, 2011

Taming seizures with Topamax, Calcarea Carbonica, and Osteopathy

Happy Holidays, everyone!  I hope each of you is enjoying moments of peace, joy and camaraderie with your loved ones during this special time.  These days our household is filled with Christmas music, lots of sunshine, and a mixture of hope and worry over Dante and his seizures.

Abuelo gets Dante's train running again

It has been ten weeks since Dante began using Topamax for his more recent drop seizures.  He has been able to go up to four caps per day, but at a high cost.  Our joyful and happy eight-year-old has definitely lost some of his shine, not to say eye contact, appetite, words, gross motor and fine motor abilities.  Up at five caps per day he was a little boy zombie: very few seizures and absolutely no connection or energy.  So we backed down to four caps/day.  No parent should have to choose between these two prospects for their child, seizures vs. terrible side effects.
At the current Topamax level (4 caps/day), Dante’s daily number of seizures has normalized and they are way milder in nature (a soft nod, maybe accompanied by a slump down or weakness for less than a minute, vs. a drastic jerk that may have sent him down fast).  Weakness is way easier to manage than rapid, hard falls any day.  Oh, but those nasty side effects!

About three weeks ago we decided to try Calcarea Carbonica, to see what impact it would have on Dante and his seizures.  Each time Dante gets the remedy his teacher comes back with very positive comments on how engaged Dante has been.  The remedy has done nothing for the seizures.  However, after we started it Dante has been using sounds again (he was making no sounds since the Topamax!), his appetite improved, and his eye contact returned.  We also got more smiles.  Calcarea also had Dante pooping very nasty, yeasty BMs.  It helped him get rid of “the bad guys” and his tummy has been quite happy.

I also decided to implement a different idea that I had learned about some time ago.  A couple of weeks ago I took Dante to an Osteopath to see how that would help with the seizures and his overall situation.  Osteopaths focus on the musculoskeletal system, and Dante’s has been deeply impacted by the medication.  I took Dante to a very reputable Osteopath, but the doctor made no promises as to what his work could do for Dante.  During the appointment he held Dante and connected with him for a few minutes.  Still holding him, the doctor asked, “Dante, can you feel that?”  Both Veronica (Dante’s babysitter) and I heard when Dante spoke a very soft, “Yeah.”  The doctor asked again and Dante answered again.  Vero and I looked at each other in amazement.  I cried.  Dante had not spoken a word for weeks. 

The doctor noticed how Dante’s torso was turning well to the right but hardly any to the left.  He manipulated Dante’s back and tried turning Dante again, that seemed to help.  We left and Dante said “No” and “Si” right away afterwards.  Surprisingly, this whole past week things improved.  Dante’s energy improved tremendously, he used his hands more, began to explore and play and interact more with the other boys in his classroom.  The impact of the Topamax was less and Dante enjoyed life more.  All this despite the fact that Dante got another cold – something we have seen already with the Topamax.

What a difference a jolly child makes!  The whole world shines when Dantino is happy.  His smile and his little dance are well known signs that everything is good in his world.  He has grown quite a bit too, and is becoming a tall handsome – yet skinny- gentleman.

There is something to be said for stability.  At this point in time, we feel we know what the Topamax is capable of and how to tame its effects somewhat.  Both my husband and I want to stay put for a bit and enjoy the stability that we have at this point.  That will certainly help carry us through this Holiday Season.  Lord knows that any change in medication triggers huge ups and downs in the frequency and force of the seizures.  We do not want to go there again for a while.

Xiomara, born 2 weeks before Dante, reads to him and to Luna

A great part of our survival is thanks to all the help and love we get from our village of babysitters, teachers, therapists, family and homeopaths.  We are so thankful for each and every person that lovingly coaches and supports our special Dante through his days.  I pray for all families with special children, that you may find wonderful special moments during this blessed season.  

!Feliz Navidad!


Janice said...

So sorry to hear about the terrible side effects of Topamax. I agree with you that no parent should have to choose between seizures and terrible side effects. My heart is with you.

I'm so glad to hear that the osteopath session helped. It's amazing that he has words again and that he is enjoying life again. I used to go to an osteopath myself and really enjoyed the sessions.

Wishing you and your family a blessed Christmas season.

Lucia álonso said...

Hay mujer, me parte el alma leer esto. Yo quiero que Dante este bien, yo lo quiero sufriendo :( si yo tuviera el poder se sánarlo lo haría sin pensarlo ni un segundo, ninguna madre debería pasar por esto. Ver sufrír a nuestros hijos es lo pero que cualquier madre puede pasar. Espero y el remedio nuevo le sirva mucho a mi Dante, que mi dios y la virgen de Guadalupe me lo cuide y sane pronto.

Dale muchos besitos de parte de Tia Lucy, ten fe amiga todo esto pasara, ya lo veras.

AnxiousDAD said...

Have you considered KETOGENIC Diet?

Mom Connected said...

Yes! Thank you so much for bringing this up! Diet and surgery seem to be the end of the road when nothing else works. I began researching the diets a few weeks ago and decided to start the Modified Atkins Diet which is less strict. We've just started it and i hope to report on it soon.

AnxiousDAD said...

I was in touch with someone who also had a kid with severe seizure episodes. She got a lot of resistance from her doctor with the diet but she got help from some foundation and childrens memorial boston started it for her daughter after being forced by this foundation.
Here is the url where she blogs. Her kid is doing very well with the ketogenic diet. Surgery should be the last thing to consider i agree. Please contact this person and i am sure she will help you out in whatever way she can.
Also, could you also tell me at what age Dante stated getting the seizures??

AnxiousDAD said...

Mom Connected said...

Dante's seizures probably started in late 2008, he had just turned five. I didn't realize his staring and "holding his breath" was actually a seizure until months later. In April 2009, after several days on the Specific Carbs Diet, along with all the heavy detox it brought, Dante had several back to back staring seizures and then fell asleep. We ended the day in the hospital where he stopped seizing after an IV was used to hydrate him. He was started on Keppra. This Summer he began falling down with these new myoclonic seizures and Topamax was added. Topamax hugely impacted his motor skills and his 'connection'.

The Modified Atkins diet does not require an initial hospital stay, making it much easier to kick off. I have to do some tests on Dante to see where all his levels are at, but I did not seek the doctor's permission to start it.

Since the diet started his worst seizures (with trembling hands) have not re-appeared and he has had an awesome week at school so far. But he hates the food and is not eating much, so I'm afraid he's already lost weight.

The work continues, but somehow the diet is truly helping his brain.