So worried about Diva

slsh

member since 1999
Diva has been an orthopedist's dream and a mother's nightmare these last few years. The latest incident started with- a cheer injury. Late Sept., a girl they were lifting fell directly onto Diva's head. She went down like a rock. Transported via backboard to local ER, which is good, but the hospital radiology dept is pretty awful. They did a head CT and spine x-rays and cleared her. She was a wreck for about a week but then started to get better, comparatively. Long story short, she's had continuing pain, mostly in lower back. We did PT, made it worse to the point that PT wouldn't touch her until another set of spine x-rays (done at a better hospital). Still nothing showing up. Tried PT again, still made it worse. Then tried my chiro. Second tx was last week, and Diva came home in excruciating pain. Missed school the next day because of it. So I decided it was time for another trip to orthopedic guy.

I had noticed on second set of x-rays that she's got some pretty significant kyphosis going on (dowager's hump). I had actually noticed this a while ago just in looking at her posture, attributed it to her very top-heavy build. Well, ortho is alarmed not only by her kyphosis (53%) but he's seeing porosis on her x-rays from today (he took a total of 9 more sets). Of lesser concern to him is a possible wedge fracture (!!!). And this was *after* he practically jumped out of his seat when looking at the first neck x-ray, because the first views they took looked very suspicious for a broken neck! Scared the bejeebers out of me. Thank goodness, second set of cervical x-rays looked better.

So... we go in Monday for a bone density scan and then a SPECT scan of cervical and lumbar spine, and pelvis. If those are negative, then we go back for an MRI of lumbar spine. Aside from the possible wedge fracture, none of this has to do with- the injury in September, but Diva's really ticked that he can't tell her why her back still hurts. I'm sitting here trying not to completely and utterly flip out over the porosis and possible causes, while trying to get her to understand that he's addressing what he thinks is most important first. She's a really active kid - cheer, volleyball, softball, and is looking forward to being in HS marching band next year (nationally known band). I took her to lunch at TGI Friday's after we finally got out of there today and she's going through all the what if's. I told her that we just have to sit back and just take it one step at a time. When I explained they inject a radioactive isotope for the SPECT scan, she said "Geez, with- all these scans and x-rays and now injecting radioactive stuff, I'm gonna be Spiderman." I'm thankful my family has developed warped sense of humor.

If you could send up a good thought for Diva and her curvy, porous, and possibly fractured vertebrae, I'd appreciate it.

One of those days when I just want to yell at Fate - ENOUGH already!
 

DammitJanet

Well-Known Member
Wow...Okay I dont exactly know what is going on and I am not going to go google it so I dont scare myself to death but I will send up dozens and dozens of prayers that she is okay. Hope she gets out of pain soon.
 

slsh

member since 1999
LOL - yeah, Janet - don't google it. Some benign possibilities and some not so benign.

They just called and changed appointment to tomorrow, which is good/worrisome. Guess it's best to know and get on with whatever.

She's irritated now because they insist on doing pregnancy test (she's extremely insulted, LOL - my good girl ;) ).
 

susiestar

Roll With It
Sending hugs, thoughts and prayers. PLEASE have them start the bloodwork to check her calcium and vitamin D levels. I KNOW you, and I know you have made sure she gets enough of those in her diet. The problem can be one with her parathyroid gland. THey are finding more poeple like me who do not seem to use Vit D appropriately if at all, which leads to early bone problems. Some of the latest research is showing that it can be related to the parathyroid gland but I am not yet sure exactly how to identify the problem and neither is my doctor. My pain doctor told me about it but my regular doctor is having trouble figuring out what tests to do. Some people are helped greatly by using D3 supplements instead of the regular D supplements. They also have super high dose prescription strength D supplements that are usually taken weekly, but that is not always easy to take. I can't tolerate them and was spending 36 hours vomiting non-stop after every dose which is why that was stopped. They CAN try various antinausea medications like phenergan or compazine or zofran, and adding a proton pump inhibitor like prilosec is helpful for some people who have problems with the supplement. Or so I have been told, but I wasn't lucky enough to be helped and my docs are scratching their heads in confusion right now.

I hope and pray that low Vit D levels are NOT the problem and that whatever the problem is can be corrected. Do NOT let them tell you that good calcium levels mean you don't need to check Vit D levels. I had to have a specialist explain to my reg doctor that the reason I have good levels of calcium in my blood, actually great levels, is because it is coming out of my bones into the blood rather than coming from my diet and going into the bones. It has nothing to do with the calcium in my diet or from supplements, though that makes me sick also. Mostly it is the Vit D issue.

I don't say this to scare you. She may need an endocrinologist and you will have to ask a LOT of questions as many are specializing in diabetes these days and not treating many other things. I want her to get help for this ASAP so that she isn't a 42yo with bones that are to fragile and painful to let her live a full life. Early treatment should be able to turn this totally around, and I hope it does. I am SO thankful that the orthopedist has taken a GOOD look at her and really LISTENED to the problems. I hope he can figure out a solution that will end her pain and give her a strong body that wll let her live whatever life she wants. She will need to speak to a therapist because this may be a chronic problem and that is one heck of a mind and soul twisting problem. Having a therapist who knows about the unique problems of living in pain and iwth chronic health issues can make a HUGE difference in her life. I know it has in mine, both when I was a teen and throughout my life.
 

buddy

New Member
Wow so young to have all of that! SHe has normal vitamin D and calcium levels? Q's doctor tested his and it was extremely low. Not sure how this would contribute to what is gong on with her but was just wondering...

She is definately on the prayer list... Hope she finds easy remedy kinds of answers.
 

DammitJanet

Well-Known Member
I take the vit D3 and have no issues with it. I also take a chewable calcium citrate with it. When I remember it...sigh. I am not as good about remembering the calcium as I should be. Lord if you could see my pill box..lol. They wouldnt fit.
 

slsh

member since 1999
Oh. My. Gosh. What a day, LOL. Diva was a real trooper. The bone density scan was comparatively brief - about 30 minutes or so. Then she got injected with- the isotope and we left for a couple hours (had brunch, then started the search for her 8th grade graduation dance dress). Came back and the real fun started. We had a great x-ray tech - she did the hardest part of the SPECT scan first. An hour for each section of her spine (cervical, thoracic, and lumbar), with the camera moving 360 degrees around her body. Then sections of her body from head to hips from above her, about 8 shots x 6-7 minutes per picture, then the same 8 shots from underneath her. Then a shot of left side of body (head to hips) in 1 continuous picture, then ditto right side. Then one last continuous shot from head to toes. We finally got out of there at about 6:45 this evening. She figured out it was about 6-1/2 hours of actual scanning, plus the 2 hours we waited for her to get fully radioactive.

A funny - after the isotope was injected, the tech made sure it was infusing well with- a Geiger counter. She had the sound turned off (which I didn't know) and I said it was too bad it wasn't like the Geiger counters they have in the movies that crackle louder the more radiation. She turned the sound on and... well, my girl was *definitely* radioactive. It really tickled her. And she got a couple of the bone density scan pics, which she has proudly posted on her facebook, LOL.

I'm so proud of her - not a single solitary complaint. Not one. I would've been *kvetching*, especially with- since the tables were hard metal with worthless cushions. She was soooo stiff and sore by the time we got out of there. She had her Ipod with- her - oh, another funny. I thought Ipods had Siri software on them, and there was some stupid game where you tap on the screen and this Michelin-man-looking thing blows up, but then she told me I could also talk to him, so I started talking to the Ipod. :rofl: She was just *so* typical teen - rolling eyes, "Mo-oooommmm, I can't believe you're trying to *talk* to him. You have to wait until he says something on the screen and then tap on your response." Oh my goodness, I'm just really getting so old.... there are moments when she just thinks I've completely lost my mind.

Won't get results back until sometime next week (hopefully Monday). To my lay eye, the bone scan didn't show an obvious wedge fracture. I have no idea what they looked like in terms of bone density - will have to wait on that. The SPECT scan images were too fuzzy on the monitor to see the vertebrae clearly and I didn't get to see the final printed images. There did seem to be some areas of really increased uptake in the thoracic vertebrae, but... I have no idea what that might mean, if anything.

She seems to be okay - not worried about possibilities, but frustrated at ongoing pain. I'm glad she's not freaking out - I'm doing enough freaking for both of us, LOL. The really nice thing was we've spent 2 entire days together and, even though she's in pain, it was ... well, I can't say "nice" because it wasn't fun activities, but we had a good time anyway. She's got a boatload of luggage - anger at thank you, some really deep thoughts about Boo and his disabilities that make her very unhappy. I again offered the option of trying counseling again to help her deal with some of it, but she's really adamant that she can only talk to me... which I really hate, because I'm just not equipped to deal effectively with- all this. I think she's scared to admit to a stranger that she has negative feelings, especially when it comes to Boo. It makes me sad, because I've *really* tried all her life to emphasize that no feelings are wrong - I've always thought it would be inevitable that the sibs would have some strong feelings about certain limitations that are on our family because of Boo (and thank you back in the old days). Anyway, I will keep trying to get her back in with- a counselor. But all in all, a really pleasant couple of days spent with- my girl. She really is a cool kid, very opinionated and rigid in her thinking (can't *imagine* where she gets that from ;) ), but also incredibly funny and just all around turning into a very great young woman.

I just pray that nothing is found on these, at least nothing seriously serious. Would be nice if we could get to the bottom of her back pain, fix it, and move on. I'll let you know when I hear from the ortho.
 

InsaneCdn

Well-Known Member
Sue...
Our favorite therapist couldn't get anywhere with difficult child.
Another one of those who would only talk to Mom.
The "rules" don't allow for parent support... but we did it anyway. Brought difficult child along, he did homework while we talked - so I could bounce this tough stuff off of her.

Maybe you need to find support for your role in supporting her?
 

slsh

member since 1999
IC - I've actually been back in counseling for a couple of months. Still working on cleaning up my own head, finally starting to make some progress there, but it's one of the reasons I feel completely ill-equipped to try to help Diva deal with- her junk - I can't even deal with- my own. I almost shared with- her today that I am in counseling but... for some reason, not ready to share that with- my fam (though I think husband has figured it out). At least Diva and I are able to communicate again - went through a bad patch last year where everything I said (even "good morning") just set her off. I really think she needs her own safe sounding board and I think it's a bad idea for that to be me. I'm going to keep trying to soften her up on the subject.
 

InsaneCdn

Well-Known Member
Sometimes, what they need is "family", not "professionals".
For me... it was a favorite aunt. I know others - friends - who had an older cousin, or shared a farmyard with grandma...
Sometimes, our kids understand that while their situation is unusual (due to difficult child), THEY are not "different", and don't like being treated as "different"... not that it wouldn't work to use a therapist, but they can't quite wrap their heads around it?
It didn't work for K2, either... there were no "issues", just working through stuff, and she didn't feel like sharing "normal" stuff with a therapist. (so, I'm stuck with her and she's stuck with me, because there IS no extended family)

Glad you're getting help for you, though.
 
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