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Has he had a tilt table test?
My daughter had one to diagnose the POTS/NMH, which she got about 1/2 year after the onset of CRPS.
She takes Atenolol (10mg) daily to keep her blood pressure normal.
Her cardiologist recommends IV's when she gets a cold or flu as she gets a little dizzy and the body can only absorb so much fluid through drinking.
I'd have to ask my wife about which tests were performed (hard to keep track of three kids' medical tests, right now). The primary concern of the cardiologist is that his body isn't hydrating properly. He gives himself an IV w/Magnesium a couple of times a week (takes 12 hours each time), and another type of IV 1-3 times a week, depending on the need.
T - glad to hear things are turning around... unknown health issues and mystery treatments are always so emotionally draining... my mrs that has a RA/lupus combo that was misdiagnosed for a year before any effective treatment was just an emotional rollercoaster for the both of us and our parents...
I can't tell you how happy I am for you that you have good news and happy times to report! Every time I see the Lyme thread pop up, I cringe a little, so I'm glad it's good news for someone this time. Is he going to get the central line, or is that still being debated? Will you let me know if he does?
Glad to hear your son is recovering finally. Can only imagine what you and your family have gone through.
My son (12) just completed 2 rounds of lyme treatment and is cured. Has some other issues but not for this thread.
Again happy things are improving.
Oh, wow. I had no idea your son was battling Lyme, but I'm glad to hear he knocked it out. I think it will still be a while before we can say that about our kids, but we celebrating any good news we can right now.
Originally Posted by KaMLuNg
T - glad to hear things are turning around... unknown health issues and mystery treatments are always so emotionally draining... my mrs that has a RA/lupus combo that was misdiagnosed for a year before any effective treatment was just an emotional rollercoaster for the both of us and our parents...
It is, indeed, exhausting. I am terrified one moment, and then encouraged in another. Going on three years of this, now.
Originally Posted by wndrlst
I can't tell you how happy I am for you that you have good news and happy times to report! Every time I see the Lyme thread pop up, I cringe a little, so I'm glad it's good news for someone this time. Is he going to get the central line, or is that still being debated? Will you let me know if he does?
He had a port placed in his chest a couple of weeks ago to facilitate home-based administration of IV treatments. It totally weirds me out whenever I see him with his shirt off and I can see that lump in his chest, near his shoulder. It's even worse when it's accessed and he has an IV tube hanging out of it; just makes me sad that he's having to endure such a nightmare.
Oh, wow. I had no idea your son was battling Lyme, but I'm glad to hear he knocked it out. I think it will still be a while before we can say that about our kids, but we celebrating any good news we can right now.
It is, indeed, exhausting. I am terrified one moment, and then encouraged in another. Going on three years of this, now.
He had a port placed in his chest a couple of weeks ago to facilitate home-based administration of IV treatments. It totally weirds me out whenever I see him with his shirt off and I can see that lump in his chest, near his shoulder. It's even worse when it's accessed and he has an IV tube hanging out of it; just makes me sad that he's having to endure such a nightmare.
Ah, okay. At least he's not being stuck each time any longer and you can do the infusions at home. I've had two PICCs, but I'm looking at a central line in a couple of months if this new protocol doesn't have more success than the last couple they've tried. It would be central instead of peripheral in hopes that my toddler would have less chance of ripping it out. I'm sorry he's having to deal with this, too. How is he handling it? I admit I'm nervous about the placement, as compared with that of the peripheral line. Are you guys doing the dressing changes yourselves or having home health come in? Do you mind sharing his new treatment that has helped so much? (If you'd prefer to take it back to the Lyme thread or to pm, just let me know. Or hell, not talk about it at all...)
I also have bouts of dysautonomia/POTS - the good news is, he might leave that in the rearview eventually, too. Mine had nearly resolved until my latest crash.
Ah, okay. At least he's not being stuck each time any longer and you can do the infusions at home. I've had two PICCs, but I'm looking at a central line in a couple of months if this new protocol doesn't have more success than the last couple they've tried. It would be central instead of peripheral in hopes that my toddler would have less chance of ripping it out. I'm sorry he's having to deal with this, too. How is he handling it? I admit I'm nervous about the placement, as compared with that of the peripheral line. Are you guys doing the dressing changes yourselves or having home health come in? Do you mind sharing his new treatment that has helped so much? (If you'd prefer to take it back to the Lyme thread or to pm, just let me know. Or hell, not talk about it at all...)
I also have bouts of dysautonomia/POTS - the good news is, he might leave that in the rearview eventually, too. Mine had nearly resolved until my latest crash.
No problem talking about all this; the Internet is what allowed us to finally get a diagnosis. He's actually handling things pretty well right now. The IV's are no big deal to him and my wife got trained on the care of the port so we are doing that ourselves. He's the one who asked for the port when he got sick of being stuck so often. The latest treatment is being directed by his cardiologist who is trying to get his body to hydrate better. A couple of times a week he has to give himself a saline IV with Magnesium; that one takes about 12 hours and he either does most of it while he is sleeping, or simply puts the pump and the IV bag in a backpack that he just wears around. The other IV's he does kind of as-needed (3-4 times per week) and it's just straight saline with some additional minerals ordered by the doctor (I can't remember which, as I sit here). He describes his thinking as "coming out of a fog" and his personality has returned; the kid we remembered from before his illness, not the surly kid who was angry so often. It's been an encouraging three weeks with respect to his condition. Our middle son, on the other hand...
I mean, nowhere near as superior as any Acura product due to the subpar road clearance, aerodynamic and fuel economic, but still, not a bad looking pair!
He had a port placed in his chest a couple of weeks ago to facilitate home-based administration of IV treatments. It totally weirds me out whenever I see him with his shirt off and I can see that lump in his chest, near his shoulder. It's even worse when it's accessed and he has an IV tube hanging out of it; just makes me sad that he's having to endure such a nightmare.
Originally Posted by ttribe
No problem talking about all this; the Internet is what allowed us to finally get a diagnosis. He's actually handling things pretty well right now. The IV's are no big deal to him and my wife got trained on the care of the port so we are doing that ourselves. He's the one who asked for the port when he got sick of being stuck so often. The latest treatment is being directed by his cardiologist who is trying to get his body to hydrate better. A couple of times a week he has to give himself a saline IV with Magnesium; that one takes about 12 hours and he either does most of it while he is sleeping, or simply puts the pump and the IV bag in a backpack that he just wears around. The other IV's he does kind of as-needed (3-4 times per week) and it's just straight saline with some additional minerals ordered by the doctor (I can't remember which, as I sit here). He describes his thinking as "coming out of a fog" and his personality has returned; the kid we remembered from before his illness, not the surly kid who was angry so often. It's been an encouraging three weeks with respect to his condition. Our middle son, on the other hand...
Damn dude I never realized how much went into treatment of Lyme. I actually work for a company that is a major player in both the infusion and port space so it would be cool if you guys were using our products. That said, I hope you like the products lol.
Nice shots & backdrop. Given prior posts in here, how long did he have to wait until your slow car got there?
Well, given that the spot where we took the pictures is only a mile from our house, and that we left at the same time, he only had to wait about an hour for me to catch up to him. I was pretty happy with that result; the tune is definitely working.
Well, given that the spot where we took the pictures is only a mile from our house, and that we left at the same time, he only had to wait about an hour for me to catch up to him. I was pretty happy with that result; the tune is definitely working.
Where did you find grass in PHX? Your son is a good looking kid, must take after his mother :p
In all seriousness, hang in there with the health issues. We see lots of deaths at the NICU daily. Appreciate all the time you have with your family and loved ones.
Tim, the car looks fantastic as always! More importantly, I'm extremely happy to hear about your son's progress. It looks like you both had an awesome time during those pictures
damn that sucks.... is it because something is damaged inside the trunk (convertible), that is why it is $5k+?
Insurance should take care of it...
If there's any kind of damage underneath the exterior, they'll had to remove the entire top and its mechanism to get it fixed. The trunk decklid will have to be replaced and refinished (obviously), as well as the bumper cover. Plus, the decklid pushed up into the edges of the rear quarter panels at impact. No damage to the metal, but the paint is damaged. Lots of hours in this one.
While insurance will take care of it, the PiTA is still the time you need to take out of your days to see the repairs through. At least you're not hurt. That's really the big thing.
08-08-2016, 03:12 PM
I'm sorry he's having to deal with this, too. How is he handling it? I admit I'm nervous about the placement, as compared with that of the peripheral line. Are you guys doing the dressing changes yourselves or having home health come in? Do you mind sharing his new treatment that has helped so much? (If you'd prefer to take it back to the Lyme thread or to pm, just let me know. Or hell, not talk about it at all...)
@ pics...
