September 25, 2010


I feel that I'm something of an old timer, struggling all these days, all these years, to make sense of something that is akin to volunteering for a starring role in a "jackass" film. I know, for example from the Ohtahara group on Yahoo!, that there are new "volunteers" coming into the fray every week. Young parents, often their first child, gravely ill, a sigh of relief at the name-tag their child's condition has been given but left to mostly their own devices.

On the facebook groups "Ohtahara syndrome" and my page "severely mentally and physically compromised children" I have implored parents to use a baby-sense like device and a pulse oximeter to monitor our children who are so at risk for choking, suffocation and central or obstructive apnea. This reiteration of the general need to monitor as best as possible felt urgent after I received notices that Xuan Sing age 13 months and Jade Taylor, 14 months, both of whom suffered from Ohtahara syndrome like Segev, had passed away.

SIDS, Sudden Infant Death Syndrome, as well as SUDEP, Sudden Unexplained Death in Epilepsy have claimed many, many lives. According to the latest thinking SIDS still does not have a unified explanation (probably since there are multiple causes). There are dozens of researched explanations, many of them sounding very plausible. For children though whose normal respiratory mechanisms are compromised as a result of brain damage and/or deformations the standard recommendations (here) do not reflect on any relevant preventative treatment. Therefore I place the emphasis on monitoring.

Here you can read an abstract from research that concludes obstructive apnea can be a factor "rather than the commonly suspected periictal cardiac arrhythmia or central apnea. SUDEP may share a similar etiology with sudden infant death syndrome (SIDS) and is likely preventable, at least in a proportion of cases."

Ironically Segev's 7 cases of central apnea/heart block, where breathing and heart stop,  happened when he was not being monitored electronically but fortunately, visibly. Each case of resuscitation except for one went smoothly partly due to controlling the natural panic reaction when seeing your son go purple in a matter of seconds, lying completely limp, not responding to pain stimulus and without a pulse.  

I have been practicing as a naturopathic therapist for over twenty years, specializing in Shiatsu and homeopathy, using traditional Chinese medicine, nutrition and bio-ergonomics to treat a wide variety of conditions. When I have finished my book on life with Segev I intend to finish my professional book, titled "In Search of experience". In having given over 18 thousand Shiatsu treatments where constant touching of the body and probing for feedback takes place, I am acutely aware of minute details and especially changes in posture, behaviour, skin colour, odour, muscle tone, pain perception and much more. They are indicators that gain incredible relevance in such fragile children as we have. Without this background I believe my natural curiosity to learn alone would not have given me the fortitude to stride into unknown territory with my son Segev.

There are many pitfalls that some can attest to that cause me always to preach to the "new volunteers" to, right from the beginning, accept help, demand help and educate themselves as best as is possible. Many I'm sure, in reading, have gone through a variety of stages to get where they are today or had to see their child pass from them even though they were still willing and able to do battle.

The stress of caring for such a child, like Claire laments here, when combined with extraneous circumstance, can see you falter. That is why we share our experiences; to learn from each other and even to teach. I've always regretted not pacing myself better, rushing ahead for good or for bad, usually for good though. Fortunately from some experiences I was able to learn without actually having to pay a price.
My last time abroad was after the war of '06*.  I went to Holland for three nights to see my brother and his children who were visiting there and whom I hadn't seen in over four years. As sirens resounded for over a month and thousands of rockets bombarded the countryside I huddled with Segev on the floor against a support wall staying my fears by contemplating what the future would bring. Life gives you funny choices sometimes and I will be darned if there is anyone who can know the longterm outcome of the decisions you end up making. 

When you get involved in a marriage you don't know that a child is going to come out of it that will devolve your world into a catastrophic maelstrom. You are durable though, you hang on because you are able to. The adversity forces you to either cave or bear the brunt of the storm. The same as Bennie, I see this life much like a hurricane with moments of respite as the eye of the storm passes. But truly, you never leave the storm completely and never remain unscathed.

When I got on the airplane I was nervous, more nervous than flying usually makes me. I had not made peace with the fact that Segev could die while I was away and there could remain with me for all eternity the knowledge that if I had stayed I would have been able to do something. Knowing this I felt I had no business getting on that plane. It wouldn't matter anymore if his death had been unavoidable or due to negligence.  But I quieted myself slightly with the knowledge that, while working two days a week I was always an hour's drive away from Segev. For all intensive purposes it is like being in another country. You simply cannot be there every second. Despite having had only 17 days holiday in the last six years. I regret having gone, considering it self indulgent. 

Recognizing precautions you can take to minimize problems that might arise are a tall order. My crystal ball is hazy at best and some problems simply require you to listen properly to your own body. There is an expression, "the cobbler goes barefoot" and it seems to me rather prevalent amongst the weary parents of extremely disabled children.
cat Miko guards the entrance
Sanji, a sprite 15, guards the landing

I had to begin lifting weights at age forty  to treat backpains from moving Segev's wheelchair up and down the 19 steps of the entrance and having to manually lift his chair into the minivan.
Segev's increasing size and weight becomes another issue since I have to lift and carry Segev through narrow corridors to get from one part of the house to another which is like carrying a very long 31 kg bag of potatoes, in other words, dead weight, where you have to make sure that every potato stays in the right place since too much pressure on a particular area can cause damage. On a regular basis all of this of course becomes moot as Segev, in one split second, becomes transformed into a flailing octopus as he often seizes when you move him. This touches on the discussion of the Ashley X treatment but Segev has "naturally" remained small. 
As a preventative measure to counteract physical difficulties, looking after your body requires serious consideration, exactly by those people who feel they are too tired to do it!

As you can see from below  photographs, maneuvering these tight spaces requires dexterity and foresight.
no space for his bathchair stand  

entrance to bathroom=no wheelchair

Today Segev has been good, smiling quite a bit. I uploaded a new video to his Facebook page here . He was in fact so excited today that my crystal ball  says in all likelihood Segev will be ill tomorrow from his lungs, a pattern that has established itself consistently for years now.

So...extra inhalations with bronchodilaters, oregano oil, physio (as always), homeopathy and a stock of antibiotics if deemed necessary. Preventation being part knowledge coming from close observation and part crystal ball prediction, or if you prefer, intuition.

*Israel - Hezbollah

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