Hi Dr. Diana,
Oh God, where to begin. He is at least alive, and capable of small movements and talking. When he removed allergens from his diet, his muscle spasms decreased significantly. Since I am not with him right now, I can’t report exactly how bad they are, nor can he tell me since his memory and his mental functions in general haven’t been so good. He’s been doing hot magnesium baths daily (should he take more magnesium?), and the floor helps him keep his hips in place.
His knee is messed up real bad and his folks won’t arrange for an appointment with his orthopedic doctor, despite the fact that he’s been complaining about this for a whole week. We suspect it’s a posterolateral knee injury of sorts, since his calf is rotating far beyond what it should. For now, we will try to keep it in a cast.
In a few weeks, I’ll have to rescue him from his household, where they neglect him. They forget to feed him, and he’s already 117lbs at a little over 6 feet tall. His heart rate is still very fast, his headaches are severe, he can barely walk (he shouldn’t be walking with the PL knee injury), yet his mother forces him to walk up and down a flight of stairs to get his food. He fell on the stairs once, and his mother, father and sister did not leave their dinner to help him. They rarely speak to him, they treat his room like a storage unit- as if he did not exist.
As soon as he hears back from his orthopedic doctor, he’s leaving, and I’m taking him back to New Orleans to take care of him.
And this blows my mind. I’m a full time college student (only 19 years old, to boot), with a part time job, with no parents, and yet I can take care of him better.
We have a plan as to what he needs:
-gain weight (target weight of at least 135-140lbs)
His family physician was afraid to prescribe him diamox because his weight was so low, that the doctor feared that any adverse reaction, even the dehydration, could send him into shock or a similar such shitty situation.
We can easily purchase this online or my brother can make a trip to south america, or see you in Dallas, but how much? How frequently?
-mast cell stabilizer
If it came down to it, we could buy this online as well. But again, how much, and how frequently? I hear of sodium cromolyn, but what form of it? There’s the OTC nasal spray according to wikipedia. Is that good? Is the inhaler better?
We will continue his allergen free diet (no processed meat, no eggs, no dairy, no soy), with an emphasis on ground meats (easier on his tummy) and coconut oil (the med. chain fatty acids are also much easier on his tummy). He cycles his calories in a way. Some days he can eat nearly 4000 cal, and the next day, barely 1500. (He gained 5 pounds quickly this way, but quickly lost that 5 when his mother forgot to get him food, and he was left with moldy bacon and fruits). We will continue his use of cannabis since it helps his pain more than vicodin or tramadol, without upsetting his stomach (in fact it helps with his stomach motility).
He has a neck brace, but he wants a better one. The one he has doesn’t seem to support his head near enough. Do you know of a good one? (If only he could get a brace for every joint in his body- a full body suit that ensured that everything moved in the right place).
I think you understand that feeling of being overwhelmed. I just want Jordan to get better. As soon as this spring semester comes to a close (May 2014), I’d love to move to Dallas and work with you in researching EDS. I want to know all there is about keeping Jordan healthy, and keeping others afflicted with similar issues in good health as well. I’m amazed by how many people exhibit health traits so similar to EDS.