Sunday, October 23, 2011

3 weeks into Topamax; the med, not the clearing!

My little cowboy.
I ran to his side after taking the picture!
It has been very difficult to write since Dante has been having the falling down seizures.  We are currently on week 3 of a new medication, Topamax, and praying non-stop that the seizures will slow down and, hopefully, stop altogether.  So far, they have only increased in frequency, putting everyone who works or lives with Dante on "high alert".  Because he can drop backwards or fall to the side at any moment, we are basically hand-holding him, or standing behind him, whenever he is on his feet.  He is only slightly annoyed to have someone "guarding" him all day long.

At this point in time, we are not using any homeopathic remedy, as we try to gauge the full effect of the new medication.  I am very interested in using a new remedy with Dante, Calcarea Carbonica.  This remedy includes the epilepsy and the developmental delays, among many other characteristics.  I learned about it after we had started the new medication, and our homeopath has been reluctant to add any variables to the mix at this time. 
The falling down seizures began after the second MMR clearing and increased while we were using the Hyperbaric Oxygen therapy.  I must say that I saw many improvements with the MMR clearing which Dante retains to this day.  It is frustrating to have this happen given the good things we have accomplished so far with the vaccine clearings.  But Dante had seizures before, the staring kind.  These usually increased whenever Dante was detoxing in some way.  Now we have this new variety, a much more dangerous kind.  We did the Prevnar clearing after these seizures began and it did not do anything to stop them.
Dante is knocked-out after we increase the Topamax dose
As Dante's falls increased in frequency and severity, it was a race against time to get them under control.  We tried the constitutional remedy he had been on before CEASE, Lycopodium, but it did not do anything for the seizures.  I have dreaded adding another medicine to Dante because of the side effects.  Lord knows he doesn't need any more damage done to his little body.  But the risk of him hurting himself and the absolute stress of watching him constantly made the decision to start the new medication rather easy.  Little did I know that it would take so long to make a difference.

After increasing the Topamax dose yesterday, today's seizure count was considerably lower than in previous weeks.  We had not seen this happen yet with this medication.  Maybe we have "turned a corner", but it is too soon to tell.  Dante ran some errands with me and was super wobbly on his feet.  His concentration, focus, and coordination were completely off.  He wasn't able to get himself into or out of the car without my help.  However, he was calm, in a good mood, and had a great appetite.  He was an excellent "mall companion" and enjoyed it very much.  I thank God for my little angel and his sweetness.  Please pray that he will heal from this phase and continue to improve!

8 comments:

Lucia alonso said...

Hay mujer que triste me pone leer esto. Yo sonrió tanto cuando leo que mis ninos están mejorando. Espero en Dios que puedas quitarlo de este medicamento pronto y el este fuera de peligro. Rezare muchísimo por el, siempre pido por todos mis ninos pero are una oración especial para mi Dante. Ojalá que el nuevo remedio les funcione y puedas dejar de usar el medicamento.

Suerte y bendiciones para tu familia en especial a Dante. Llamame si necesitas hablar.

Mom Connected said...

Miles de gracias, Lucy! Aprecio muchísimo tu cariño y tu apoyo, mas aún cuando tu las estás pasando díficil sin poder dormir con tu Alex. Gracias mil por recordarnos y por tu llamada. Tendré también a tu familia, y en especial a Alex, en oración. Un abrazo...

Janice said...

Oh, I'm so sorry to hear that Dante's been continuing to have so many seizures. It breaks my heart.

I'm glad to hear that his seizure count decreased today and he continues to be in good spirits. I hope that this trend continues.

I pray for Dante's healing and for your continued strength.

I love queen annes lace said...

My thoughts and prayers are always with you and Dante. What a beautiful angel he is! May God fill you all with the strength you need during this difficult time. God bless you and your entire family. The kids and I are going to gather daily in prayer for Dante. Remember, we are all rooting for your precious little cowboy. Take care mom, you are doing a great job!

Mom Connected said...

I am so thankful for your prayers, my friends! I feel blessed to be able to connect with such admirable and spiritual moms. Thank you for supporting me during this difficult journey. I thank God to have you to share it with...

Anonymous said...

Quisiera compartir algo contigo. Conozco una persona que tiene una nin~ita de 5 an~os que sufre de convulsiones. La nin~a la habian tratado ya con varios medicamentos. El doctor la puso en "topamax" pero sucedio que al paso de los dias la nin~a comenzo a caerse y a caerse y se golpeaba su carita y su cuerpo porque caia de cualquier forma. Su mama regreso al medico porque lo que estaba pasando era muy horrible. Resulto ser que era un efecto de la misma medicina que empeoraba la condicion. Era increible!!. Quitaron la nin~a del topamax y sorpresivamente se dejo de caer. No todos los casos son iguales pero lo comparto contigo al leer que Dante se cae aun mas con topamax.
Sabes llevo a Dante en mi corazon y lo que es imposible para el hombre es posible para Dios. Sigamos clamando al Dios de los cielos por el y un dia tus ojos veran "el gran milagro".

Mom Connected said...

Miles de gracias por ese mensaje tan bonito y por compartir conmigo esa experiencia. La verdad es que este tipo de medicina me asusta bastante, y por eso he proseguido con cautela. Como verá en mi nuevo "post", gracias a Dios las caídas de Dante han disminuido. Pero los efectos secundarios no me encantan. Eso sí, había que atacar las convulsiones porque son muy peligrosas. Así que seguimos en la lucha, a ver si Dios nos guía en la sanación verdadera de Dante.

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