Less Seizures, More Therapy

Since I started on homeopathic remedies just a week ago, my infantile spasms have been controlled although I still have other forms of seizures.

I no longer have infantile spasms - those painful and tiring jerking movements that really frighten me and then piss me off.  Mom recalls that before I would have an attack, I would literally look scared and sometimes whimper in fear.  Then in less than a minute, the first spasm happens.  My infantile spasms reach between to 80 to 140 violent jerking movements, would last between 5-7 minutes and that would happen around 3 times a day.  At its peak several weeks ago, I would have 5 episodes in a day.

Of course, those were the only seizures my parents took notice of.  After reading a book on seizures, mom realized that I have been seizing most of the day. My new friend Xavi (7 year old son of mom's friend) has 30-40 seizures in a day but mostly the staring type.  And they had a 24-hour EEG to figure that out because some seizures were too subtle.  Mom and Dad are still thinking if another EEG would be helpful at this point. 

My other seizures are lip smacking, staring into the corner, eye rolling with very subtle body jerking, sudden clasping of hands like I am clapping (10-15 in a row), leg stiffening (5-10 in a row), repeated rubbing of eyes and nose with my hands (5-10 minutes non-stop).  All these happened even before my first infantile spasm.  And some still continue now.  Dad thought my lip smacking was something I picked up from the constant kisses I receive from them.  And Mom and Dad thought I was just really one active kid because I have 2 hair whorls (some old saying in our country 2 puyo means malikot or really active).  Ho-humm little did they know.

Anyhoo.... anti-convulsants Valproic Acid with Lamictal tasted sweet.  Mom had a few sips or two.  She wouldn't let me take anything she wouldn't take herself.  But it didn't do me any good except get me sleepy.  And the doctors insisted on having my liver checked because of the possible side effects of the medication.  That really sucked because it didn't work and I had to go through painful blood extractions from resident doctors who couldn't get it right the first time and had to insert the needle in my arms 3x before getting blood.  Well, all that for nothing because I still kept seizing with violent infantile spasms.  (Mom might upload a video of those experiences, but it might depress other family and friends).

Homeopathic Remedies... alas!  Tita Z's doctor and also mom's friend, Tita Jen's doctor.  She's wonderful!  She gave me some homeopathic remedies and infantile spasms are gone!  Well, not completely since I still have tight fists, herd jerking, legs curling in... but all in a tolerable frequency, intensity and duration that sometimes I don't mind it.  Mom minds though.  She wants the seizures completely gone.  Now with less seizures, I can do physical therapy and Doman methods with more frequency, intensity and duration.  But I'm trying to get rid of a really bad cough.  Mom is afraid it may lead to pneumonia which is the number one cause of illness and death in liss kids. When I'm well, I'll do more therapy.

Other therapies my parents are considering are: hyperbaric oxygen therapy and advanced biomechanical rehabilitation.  Funds are needed for these.  We need to do more research on these too.

- Ate