My son--MRI abnormal, needs bone scan, epilepsy med to blame?

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cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 9/12/2007 10:46 AM (GMT -7)   
Hi--
I got a very worrisome call from the doctor's office today about my son's MRI results on his lumbar spine.  They said there were no herniated or ruptured disks but that it was abnormal and they want him to have a bone scan.  
 
They wouldn't give me any details, I imagine the facility called it in to the doc maybe.  Of course, I'm really really worried.  With his heart problem, his epilepsy, ADHD and now this, I don't even want to tell him. 
 
Does anyone know why they would do a "bone scan" after an MRI?  My hopeful wish is that its a mistake, or that they might see some nutritional changes that can be remedied.  Or that maybe he needs just to switch epilepsy medicine--he is on trileptal, and takes adderall for ADHD but it also helps his heart and bp -- he has very low bp. 
 
I don't know what to tell him and if I say I don't have any details, he will worry to death and call and call and mess up school, he has enough trouble concentrating. 
 
Does anyone know if epilepsy medicine causes bone problems?  I can't get him to eat healthy, drink milk or eat calcium or to eat ice cream or to eat very much due to nausea from the trileptal and appetite suppression from the adderall.  Most of it, he says is from the trileptal, he says when he doesn't take adderall he still has it just as bad and he is hungry, it just makes him sick to eat.  He's 6' and 165.  Any ideas would be appreciated.  I don't know what to tell him.  The drs. office won't say what they are testing for.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/12/2007 7:07 PM (GMT -7)   
Oh Marji . . . I so feel for you and your son.

I would tell him the truth . . . but the truth is that he needs a bone scan because the doctor said so. If you tell him in a confident way, he'll probably take your cue. Say something like "I'm glad they are being so thorough before we go back in to get the results. These tests are so sensitive now that they can find the smallest problems." I have four adult children and it seems that the times I worried the most were times I needn't have worried at all. I'll say a prayer for you, your son and his doctors.

Blessings!
In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator ~ Lupus Forum
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dbab
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Date Joined Jan 2004
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   Posted 9/12/2007 8:46 PM (GMT -7)   
Marji, I can understand your feelings right now. I can imagine how worried you must be.

Sometimes the doctors can be extra precautious (thank goodness!!!) and want to make sure that they test everything if there is the slightest abnormality. Its good to see that he has a doc that is very thorough as Rosie said. Given that the doctor hasn't gone into too much detail, I tend to look at that as a positive sign.

I'm not sure really how to address your question on how to tell your son. I think I would be very cautious as well in your shoes. Rosie sounds like she has a good point though about telling him, staying as positive as you can about it when you do tell him... kids pick up on that stuff really well.

I will keep you and your son in my thoughts.
"Des"
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Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
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cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 9/12/2007 8:54 PM (GMT -7)   
Thanks Rosie, your reply really helped. I was able to tell him the truth but not get him upset, which was a feat since I'm tapering and a little neurotic right now. I told him that they were probably just being extra careful due to his other health problems and that sometimes they see stuff that they need other tests to find out if they are seeing a problem or the image isn't clear, like you said, they are so sensitive.

I posted something in the epilepsy forum (which I have encouraged him to join time and time again) and I got a reply that the meds can cause bone density problems and vitamin D deficiency so he should be on vitamin D probably. He is on a calcium and sodium channel blocker. His neurologist is not real on the ball, but he was the only one with an opening so we are kind of stuck for now. We talked about this and his shirking calcium and dairy products and milk and went to the store and got him some stuff he said he would eat, and he is handling it well. Thanks again, I can't tell if I'm being weird or not right now, but I guess I did ok. Thanks again so much.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/12/2007 8:55 PM (GMT -7)   
Hi, Marji. I'm so sorry you have more worry lumped on top of what you're already dealing with, and with it being your son's health you probably worry even more. I don't have kids, but what Rosie said sounds very good (very professional and Mom-like Rosie...Good Job!). I would think you would want to tell him the truth so that it stops him from worrying about things being handled. I would probably just repeat exactly what Rosie said! That tells him the truth about the need for the scan and helps to smooth over the need to worry. Good luck. I just hope they can find a simple solution with this scan. I'll repeat Rosie's prayers too! Take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/12/2007 9:10 PM (GMT -7)   
Thanks Des and sharen,
I'm not real thrilled with the care his primary has given him. She is very good about listening and if you ask for something reasonable, she will usually do it, but I've asked her to test my son for AI disease and she just refuses and she does very little bloodwork on him and won't test his liver, so no one is, and his neurologist hasn't done much to find out more about his epilepsy, they refuse to do an MRI of the region of his brain where it is and he has orthostatic low blood pressure and there is a possiblity according to his cardiologist that he could have a repairable vascular problem, they just shove pills at him.

We are doing the best we can with what they will do for him and hopefully they will start taking his health problems more seriously. And hopefully my son will too. I feel like the only one who cares sometimes! Its frustrating, but I know its just because he's a teenager (well 19, but a very young 19) and just sick of dealing with it. Thanks for your thoughts and prayers, we really appreciate them.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/13/2007 7:52 AM (GMT -7)   
Hey Marji,

I'm glad your talk went well. Building trust was more important in that situation than the tests or the illness.

I forgot to suggest something for the weight and the calcium. I had one of my four kids who just could not put on weight. I used to give him a glass of Carnation Instant Breakfast AFTER his meals. If you search, you can find the container of it that is not in the individual packets. I think its less expensive AND you can make smaller servings because your not sure yet if he'll drink 6 oz or 10 oz. Anyway, for an instant it is fairly close in nutrients to Ensure and some of the other meal replacements, but it tastes better, is less expensive and you can control the serving size. Anyway . . . they seem to be able to drink a bit of that even when they won't eat much. I suggest using it AFTER a meal because you want him eating as much "normal" stuff as possible. This helped an ill brother and my father (Alzheimer's) as well. When there hunger signals don't work, they still seem able to drink something.

Don't you wish you could just ditch ALL his doctors and start over? How frustrating. I have a first appointment scheduled with a new rheumy (lost my old one because his group doesn't take my insurance anymore :cry: ) and I realized that he is associated with the Cleveland Clinic. Now I am thinking about getting a new pcp (not happy with my current one) in that system as well BECAUSE they all use a computer filing system for their records and all doctors in that system (many cities, many buildings, many groups) can use those records (blood work, doctor's notes etc.) ALL my stuff will be available to each doctor that I have within that system. Wooo hooo . . . I will even be able to look at my lab results as a patient on-line!!! I'm excited about this. So I'm hoping this is going to be a good thing and that it will become more wide-spread. I know Kaiser has the same kind of system.

Sorry this got soooo long . . . I hope your son's tests go well and am praying that the radiologists, doctors and your son will be blessed with answers and solutions and a game plan.

Blessings!
In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Inflamatory Bowel, Inflammatory Arthritis
Clickable Links:   Healing Well:  Lupus Resources ~~ Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org  ~~  Criterea for Diagnosing Lupus (4 of 11):  Lupus Criterea  ~~   Lupus Foundation Chapter near you  Lupus Chapter Locator


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/13/2007 12:05 PM (GMT -7)   
Thanks so much for the kind replies Sharen and Rosie. Rosie you must be psychic because we had a long talk last night and I mentioned ensure or slimfast and he brought up carnation instant breakfast--I used to love that as a kid! Anyway, I like the way you are talking about doing it. He tends to be a late night grazer, because most of his meds have worn off and he has just taken his nightly epilepsy dose so it hasn't worked yet. If I can get at least one of them into him at night, I'm sure that would help. I hate to lose his PCP, because she will usually give him whatever he needs and take over his regular meds once the specialists figure out what he needs and she does do regular blood work on him twice a year, just not very much. And she is a very good listener and did take him seriously about his back, and ran the right tests so that is good. I just wish I could rule out him having some kind of AI disease because it would be one less thing to worry about. Well thanks again, and Rosie thanks for your help. When I mentioned ensure, I got a resounding YUCK! and NO WAY!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/13/2007 5:20 PM (GMT -7)   
Your welcome Marji . . . we found that with son, brother and dad, it actually improved their appetite as well. Maybe once the calories are regularly going in, it creates more of a need for them. Good luck!!

Blessings!
In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Inflamatory Bowel, Inflammatory Arthritis
Clickable Links:   Healing Well:  Lupus Resources ~~ Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org  ~~  Criterea for Diagnosing Lupus (4 of 11):  Lupus Criterea  ~~   Lupus Foundation Chapter near you  Lupus Chapter Locator


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/13/2007 7:57 PM (GMT -7)   
Hi, Marji. Has your son actually ever tried the Ensure? Maybe he just thinks it's not good? I had to drink that a lot after my coma, and I loved the chocolate flavor. Rosie's right about the increase in appetite! Well, sounded like a good excuse anyway!!! Ha! I'll go with it! (Could have just been the fact that I didn't get to eat the junk I love for a month!) I just hope whatever happens that you will finally determine a way to get both of you the help you need. It really saddens me for you to face one thing after another with not only your health, but your son's too. Just keep on keeping on. You'll get something worked out! Take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg

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