Joshua had some new symptoms begin Friday (June 23rd).



He woke up and had rolled out of his bed. I heard his ventilator machine alarm because his rolling off the bed made the ventilator tube pop loose from his trach. Since he was awake, I turned off the vent and tried to help him sit up on the floor. But he groaned and said he couldn't sit up, he was hurting. I asked him where he was hurt and he indicated his back, legs and arms hurt. He had also wet the bed (which is something he doesn't seem to be able to control much either lately) so I was trying to get him up to get him changed out of his wet clothes.

I got him up on his feet and a moment or two later, groaning, he fell over onto his bed. His muscles were really giving him trouble. I felt of them and they were really tight. I got him cleaned up and in new clothes and all and was trying to massage his arms and legs, which didn't seem to help too much.

We tried rubbing him down with Ben Gay ointment, but he continued to hobble around and complain. He seemed to be darker than normal under his eyes, so I thought maybe he was becoming dehydrated. I gave him a generic pedialyte - about three small glasses full, and he started to act like he was feeling better after a few hours.

The next day, Saturday, Josh didn't seem to feel so tight. He did try to take it a little easy that day like he was worried he'd start to hurt again. Then Sunday morning, he woke up wet and sore again and he started asking for the Ben Gay again. He didn't seem as sore Sunday (today) as he did on Friday, but both days he also complained that his stomache wasn't feeling too great either.

We have not yet talked to his doctor about these symptoms. We wanted to see if they were something that would pass quickly or something that seemed to be recurring first.

Reminder - Josh was diagnosed with a rare & serious breathing disorder, Late-Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction, last fall. He showed the most serious symptoms of this illness in March of 2005, before doctors realized what they were dealing with. At that time, Josh's oxygen saturation level had dropped dangerously low (50 percent). He was quickly hospitalized and went into respiratory arrest the next morning.

Doctors had an extremely difficult time reviving him and getting a tube into his throat where they needed it to hook him to a ventilator. (at that time, he didn't have a trach). He had pneumonia and swelling in his brain, lost the feeling and control of his left arm and leg, and suffered a seizure during the 2 weeks he spent in ICU in March 2005. Doctors at the time, thought he might have had an auto-immunde disorder and treated him with powerful steroids until he seemed strong enough to come off the ventilator and began getting feeling and strength back in his left arm and leg.

Joshua received out-patient physical and occupational therapy follow-ups and a visit or two to the neurologist after his hospitalization. They all thought he was getting back to normal, when he went back to school in the fall and his oxygen saturation levels showed another big drop. He was hospitalized again - but transfered to another hospital - Methodist Children Hospital in San Antonio. He remained there - on a ventilator - for six weeks. He emerged with a trach and the new diagnosis. He has been carefully monitored by a pulmonologist, a glandular specialist and ear, nose & throat specialist since being released from the hospital this time.

Joshua only takes Potassium on a regular basis - no other drugs. He does have trouble fairly often with his sodium level - he becomes dehydrated very frequently.

Also - please remember I share some of these embarrassing (for Josh) details and all because I hope it will help Josh and/or others who may have something similar - hoping we can find answers to these problems.