Ornithine Transcarbamylase Deficiency (OTC or OTD)

Reblogged from previous blogs:  Plus an updated entry

 

***OTD is an X-linked urea cycle deficiency.  To summarize, a person with OTD won’t be as efficient in processing protein with the result that ammonia levels in the body will sometimes rise to dangerous levels and lead to coma and eventually death

27 January 2007 

I finally met Dr. Cederbaum 2 days ago at UCLA. He’s the one who confirmed O’s OTD condition. Its a mild form so not much to worry about. He’s hoping O can join a national project to study OTD and other urea cycle disorders. According to the good doctor (who looks a bit like Woody Allen) O has got a mild form that would be interesting to study as most cases don’t get past pre-teen years. 

Dr. Cederbaum, being also a psychologist, asked us how the diagnosis has affected our life. The question threw me for a loop. I never thought about it. I’ve always thought that I would lose O to some other thing.  Anyway, it was funny the way he was tiptoeing around that death question. We kind of laughed and I could visibly see his demeanor changing to a more comfortable stance.

All in all it was an interesting day. Traffic is hell in LA. Was I glad when we finally left for Riverside.

 

17 Oct 2010

The better half left me for several days to do his thing.  I think of it as a sort of dry run. 

His health episodes have been coming almost monthly.  I don’t even think about next year anymore.  I just hope for one more month.  Di pa naman (Not yet) day to day living, more like month to month till the next episode.   

Mealtimes with the kids are kind of dry with no O around.  It seems that I am a more fun mom with him around.  I guess its difficult to be easygoing if you’re the only one thinking of the kids’ whereabouts, well-being, homeworks…  

A partner is like a counterfoil.  When I am in a serious mood, he provides the fun and the jokes and vice versa.  Without him, I become the serious parent.

I realized that being alone is not only about loneliness.  Faced with more responsibilities, one tends to become more glum.  I noticed I laughed less these past few days.  It was with an effort that I joked with the little one tonight.  And teased the other two.

 

17 July 2011

I woke up yesterday, thought of my mom-in-law’s relatives who died of bangungot (a Philippine term where a person dies in his sleep).  I swear that was the first thought when I woke up.  I turned over and looked at O.  All of a sudden there was this feeling of thankfulness that he still is with me.  It suffused my whole being.

Thank you Lord for giving me 16 years with him.  Everyday is a bonus.  I am grateful.

 

15 October 2012

O had another episode last night.  As I watched him sleep, I sent out a plea – Please, I hope not so soon after my mom.  I am strong but not that strong.  I imagined life without O, my tears fell.  

I need more siao chai (a chinese term where it is believed one can fool bad luck by helping others in cash or in kind) this year.

 

9 September 2013

I think O has got a system for dealing with OTD now.  The daily tea and coffee has certainly helped.  They are diuretics.  And the goal is to lower the ammonia levels in his body.  Passing urine, sweating – those help lessen the frequency of the episodes.  And when he feels an onset of OTD episode, which happens less frequently now.  I count 4 or 5 since last October, Anyway when he feels an episode coming on, I now know what to do.  Water helps; the more he is able to take in the more he is able to to pee.  Then a cold herbal pillow on his forehead to lessen the head pains; not really a migraine or headache – he says its more like the whole head is being crushed.  Then I let him sleep. 

It is no longer as frightening as last year.  I know things are ok when he wakes up in the middle of the night to go to the bathroom.  And he himself knows when the episode is winding down when he smells windex in his pee or sweat.

Watermelons also help.  When he’s had a particularly protein heavy meal, he tries to order watermelon juice or shakes.  

I don’t know if this is scientific or not, but it works for O.

 

 

 

 

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