August 01, 2014


Segev is once again on antibiotics, he has pneumonia.  His last episode was just one and a half months ago, but he is responding well. The side effects for my son have been so severe in the past that it has influenced my decision, whether to start with the medication or tough it out, as we have done so, so often, using instead a combination of abundant and intense chest physio sessions, nebulizer therapy and herbal medicine. 

The first signs that things are once again sliding backwards is lethargy and vomiting as well as an increase in grand-mal seizures.  The problem is that antibiotics cause him such intestinal pain that he can scream for hours, with the only relief coming from strong sedation. Even then the severity of pain can mean that sedation lasts only for minutes, as opposed to hours, as is the case when given to halt a cluster seizure.  Constant vomiting is such a dreaded thing because of aspiration which sets up the continuation of pneumonia, fluid loss and equally dangerous, the expulsion of his many meds.

But, as stated, I did not hesitate this time and outside of severe abdominal cramps and loose bowels, he is improving. Unfortunately the incredible gains in realigning and softening his extremely distorted spine has been brought back to zero. The length and frequency of treatments to his spine has necessarily increased. It takes him longer to calm down during the course of a treatment and the gains are minimal. Once again I've started him on an anti inflammatory agent that I believe gave us a noticeable advantage in this losing battle against the deterioration of his spine.

For some parents an option might be to assuage the destruction with surgery to implant spinal rods.  Will he survive the surgery? Will his body be able to heal? Will his violent seizures snap a rod? Will the pain be manageable? Infection? Irrevocable damage done during the surgery? Should I believe reports, that in such extremely disabled (especially quadraparetic) children respiration actually suffers more? The answer to all those questions are filled with far too much uncertainty.

So, we are chugging along; years go by, fears are, if not allayed, allocated to the purgatory of postponement. The pains which have resurfaced are quite Now! though. I trudge, I step, pushing against the wind. Nothing to do but push forward as though there is no wind. No enemy. Just the moment.


  1. I am always amazed at how strong you remain in the face of this. I would crumble, I know I would. All I can offer is hollow encouragement and the hope that he gets to a place of comfort and stability very soon.

  2. So much inner and outer war and struggle.
    Wishing an island of peace for you and Segev.

  3. Our best wishes for you. I have a sister with cerebral palsy and we had very similar situations (we're from Argentine). I understand your feelings and thoughts. Your strength reminds me my parents, keep it. I hope that soon Segev have a good smile and you all reach peace and calm. Thanks for sharing.