Scared for my son. Please help w/comments *Update 4/16*

[kimlovescats]

First things first ..... ((((((((((((((((((((((((((HUGS)))))))))))))))))))) ))
You poor, sweet thing! I would be so beyond myself and yet you have somehow held it together! You have more strength than you realize! I am so thankful to hear that your son is showing definite signs of improvement. That has to be very encouraging and a big relief to both of you! I know there is always that inner fear that it's something worse, but please try to keep Faith that the improvement is definitely a POSITIVE!

I cannot believe the gall of that one doctor and then to laugh at his response? She ought to be repremanded for that!

Well, please know that I am praying for you and your dear son!

Love and Hugs,
Kim

[Pawsitive Thinking]

Just checking in to see how you and your boy are doing.....we are all with you

[Medusa]

Just to know that I have my PT friends all across the globe is a tremendous comfort! You have no idea!

My son called me on his way to the clinic and he said that he's up to 50%. He said "I could actually press the cap on my hairspray bottle. Not all the way but a little." His sleep is so-so. I asked him if he stores things under his bed and he said "Here comes the feng shui!". I said "Humor me and remove anything that's under there. If you have books there, all those written thoughts are under there. And if it's anything electrical, it can also interrupt your sleep patterns. And cover up your TV when not in use." "Sigh. Ok, mom, whatever you say" was the reply. He's in better spirits but I can hear the reservation in his voice. He'll feel better once the dr. tells him that his CPK is lower, I'm sure. I've been praying for him, of course, and one of the positive affirmations that I've been saying on his behalf is "God is now dissolving and removing all illness from Glenn's body, quickly, easily and in peace." He said this morning "Mom, you would not believe the stuff that came out of my nose when I blew it this morning. I haven't had the strength to really blow my nose but this morning I finally did and the vilest, brownest stuff I have ever seen just kept coming and coming." I didn't even tell him the prayer that I had been saying. I just said "Well, it appears that the illness and infection are wanting to get out of your body as much as you want it to leave. So let it." He at least agreed w/that statement.

So when I hear his report from the clinic, I'll post again later. Thank you all so much for being there. Just logging on and seeing replies to this thread is a healing balm for him and me.

[gini]

When each day the news gets better and better I am sure you are beyond relieved.

I can just imagine how terribly worried you have been all of this time.

We will keep the prayers continuing for sure.

[Medusa]

My son called me after his clinic visit. They took 7 more vials of blood and he asked them to at least switch to the other arm because his left arm was sore and bruised. He said he has so many needle tracks that it looks like he's a heroin addict.

Good news: all the drs. seem to agree that it's viral and not chronic and they're pleased somewhat w/his progress in certain areas. They're pleased that he can get up off the exam table on his own and shower, wash his hair, etc. But his reflexes aren't what they should be. They had him hold his hands out in front and link his fingers together and pull. He did it fine. But when they hit his knees w/the little reflex hammer, not good. He told me that on the way to the clinic that his knees were bothering him and he wasn't sure why. But since his other reflexes were working ok, they're not too alarmed. However, his CPK went from 500 to 700 to 1050 which I don't understand, since he's at 50% progress. So. He goes back March 7 for more blood work and a nerve conduction test to "be sure this doesn't come back" as the dr. put it. The dr. told him not to worry, that it isn't chronic, that he doesn't want him to lift anything today or tomorrow and that he can do light exercise. My son felt relieved when the dr. said that it isn't chronic. He said that as long as he continues to improve, he's ok. He just doesn't want to regress.

Btw, remember the dr. that I told you scared my son so badly and then laughed? As it turns out, he actually has grown to like her. He said that she at least smiles. The other drs. are very serious and he doesn't like that.

So I'll continue to update on his progress which I'm hopeful will continue and for sure I'll post after his next visit to the clinic on March 7. He doesn't need to go back before then unless he gets worse, which we're pretty hopeful that he won't.

[Daisy and Delilah]

More thoughts and prayers going out from Florida. This is one of the scariest things I've ever read. I can't even begin to imagine what it would be like to experience it first hand. Again, I just think of one of my kids calling with this kind of news. I would have to be hospitalized.
Giant hugs to your son and to you too, Mary!! {{{{{HUGS}}}}}

[cassiesmom]

Prayers being said!

[Rachel]

Good news: all the drs. seem to agree that it's viral and not chronic and they're pleased somewhat w/his progress in certain areas. They're pleased that he can get up off the exam table on his own and shower, wash his hair, etc. But his reflexes aren't what they should be. They had him hold his hands out in front and link his fingers together and pull. He did it fine. But when they hit his knees w/the little reflex hammer, not good. He told me that on the way to the clinic that his knees were bothering him and he wasn't sure why. But since his other reflexes were working ok, they're not too alarmed. However, his CPK went from 500 to 700 to 1050 which I don't understand, since he's at 50% progress. So. He goes back March 7 for more blood work and a nerve conduction test to "be sure this doesn't come back" as the dr. put it. The dr. told him not to worry, that it isn't chronic, that he doesn't want him to lift anything today or tomorrow and that he can do light exercise. My son felt relieved when the dr. said that it isn't chronic. He said that as long as he continues to improve, he's ok. He just doesn't want to regress.

Btw, remember the dr. that I told you scared my son so badly and then laughed? Guess what her name is? Dr. Kevorkian! As it turns out, he actually has grown to like her. He said that she at least smiles. The other drs. are very serious and he doesn't like that.

So I'll continue to update on his progress which I'm hopeful will continue and for sure I'll post after his next visit to the clinic on March 7. He doesn't need to go back before then unless he gets worse, which we're pretty hopeful that he won't.

Thanks for all the updates, Mary. This has indeed be a scary one for us here, but the improvement he has had is impressive and encouraging. I'm sorry Dr. K. blurted out all the things she had been considering...but at least she considered them. She was trying to rule out everything she could possibly think of. I'd rather have a good diagnostician with a poor bedside manner than the other way around. I hope that your son will take things slow and gradual and not try to do too much, especially with the exercising. The last thing he...or you...or us...needs is a setback.

[Medusa]

I'd rather have a good diagnostician with a poor bedside manner than the other way around.

I certainly don't want to appear argumentative, especially after everyone has been so kind to me throughout this ordeal. And ordinarily I would agree w/the above statement. But she began with "I've never seen this before. It could be Lou Gehrig's disease". So, if she'd never seen it before, how could she make a statement like that?

Doctors and people in general who are not aware of the power of words are behind the times. Words can harm and words can heal. Far be it from me to be preachy and get biblical but even the Bible states that "the power of life and death are in the tongue". If this doctor couldn't think of anything encouraging to say, she would've done less damage by just keeping quiet until there was a diagnosis. I think if doctors could see just how their words truly affect their patients, they'd choose their words more carefully. My son went into a tailspin and because he did, I did. Stress management plays such a large part in healing and that one simple sentence halted his progress. However, both my son and I realize that she meant no harm, that her intentions were only the best and that she simply lacks grace and communication skills. It's been a learning experience for everyone involved, including this doctor.