It was a good thing that in Jan. 07 we have moved to a new area. Lennon would be ill a few more times…with the vomiting and being extremely lethargic..
In August it came to the point that Lennon was almost not responding, and we took him to the ER. They did the usual, hook
The next day due to his normal state he was released. Things were so-so… Lennon started school but it was but two hours later they called me to pick him up…something was wrong. I called the ped. and took him in..during the trip into town, Lennon
Diagnosis:
Lennon has Urea Cycle Disorder
We are told that normal ammonia levels should be around 30-60 but that Lennon’s were in the
Lennon was placed on IV meds, transferred to the PICU. There we spend about 5 days until his levels were below a 100 (his safe zone). He is placed on a low protein diet (15-20 g per day) and has to take medication as well as drink an ammino acid formula.
As his levels stabilized we were released to go home. It wasn’t even 24 hours when Lennon woke up disoriented (so it seemed) in reality he had just lost his vision. And it was back to the hospital. The MRI indicated that Lennon has several edema on his brain…one right behind the optic nerve and it is the assumption that his body attempting to get used to the normalcy in his chemical make-up with the medication..it actually went a bit crazy as the ammonia edema are trying to flush themselves out.
Lennon was blind for 6 months – in which it seems that another hopsitalization with high ammonia levels did flush out enough so that the edema is less than before and voila he can see.
For more information on UCD go to http://www.ureacycle.com or go to http://www.nucdf.org
