My son is not doing very well

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cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 9/20/2007 7:52 PM (GMT -7)   
Well, after not being able to sleep at all last night from the pred taper, I took my son in for his bone scan.  He had had an abnormal MRI of his lumbar spine and we can get no info from the docs about it.  Well, the scan didn't seem to show any big abnormal areas but his bones did seem faint and there was a problem with his legs being bowlegged.  They ordered extra xrays but it's looking like a vitamin D or calcium defiency, but the legs are a separate problem from the abnormalcies seen on the MRI since the MRI didn't include his legs, so we still don't know about that.  My son is finally taking eating seriously and I think has just about had it with health problems.  He's only 19 and it seems every few months they find something major wrong with him.  With ADHD, then epilepsy, then heart problems and bp problems, a fungal problem that is out of control, and now this, his moods are not real great.  I can't blame him.  It was hard to see my beautiful boy laying there and having something else wrong and some of it probably due to him just being stubborn and anorexic-like from his ADHD and epilepsy meds.  I just can't blame him.  Any prayers and good wishes for him would really be appreciated now.  He tends to be anemic as well and I'm just hoping that its not something horrible, but something that can be corrected with diet and vitamins or med change.  Thanks for listening.  I'm just so sad, it's just not fair when these kids get sick and their young lives changed so drastically.
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


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 9/20/2007 11:49 PM (GMT -7)   
Make sure he gets a bone builder and calcium with D and Magnesium supplements from now on. Seriously a really good vitamin and mineral supplement would be great too. He might want to consider drinking those shakes with vitamins, minerals, and protein if eating doesn't appeal. Just that could help a lot. I will keep you and your son in my thoughts and prayers. I know how hard having a child be ill can be. My oldest is showing early signs of possible autoimmune issues and my youngest has psoriasis. Yet, they are being closely monitored so they have a better chance at a wonderful outcome. Just be sure he sees someone to discuss how having all these issues makes him feel. Isn't a good idea to allow him to bottle it up. Besides bottled up feelings and stress are bad for your health no matter what is originally was. I would insist the doctors sit down and explain the MRI and bone scan results ASAP. Knowledge is power and also half the battle with health issues.

Good luck and god/or your deity bless.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 9/21/2007 6:49 AM (GMT -7)   
Marji. I'm so sorry to hear that your son has so much going on and that he's not doing well. It's so hard to feel helpless. I'm going through some similar things with my son, who is just 9. Docs are having a hard time getting his arthritis under control and he has really been suffering since school started up again. I'm afraid he's going to have to go on a med like methotrexate and I hate the thought of that. Watching your kids go through these kinds of things is much harder than dealing with our own illnesses. My heart goes out to you and your son. ((((hugs))))
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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omega
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Date Joined Jan 2007
Total Posts : 607
   Posted 9/21/2007 6:59 AM (GMT -7)   
I am so sorry to hear this. You and your son will be in my prayer.

CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 9/21/2007 11:45 AM (GMT -7)   
Hi Marji, sorry to hear about what you and your son are going through. You both will be in my prayers, as always. 19 is a tough age to be going through this, just starting adulthood and all. Just be sure they rule out other causes too, not just assume vitamin deficiency. Has his bloodwork come up with vitamin difficiency? Does he have any other bloodwork abnormalities? Sounds a little scary, I hope that it is a deficiency and it all works out. You have been going through an awful lot recently, please take good care of yourself. Glad to hear your son is taking better care of himself. BIG HUG - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - Mitral valve sclerosis, MVP/regurg, dementia; GERD; vision loss, narcolepsy, RA, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/21/2007 7:47 PM (GMT -7)   
Prayers for you and your son Marji . . . this must be much harder than being sick ourselves . . . it is SO painful to see one of our children having to deal with so many issues . . . especially a young man . . . they just want to normal and blend in.

Sending you a hot cup of tea and a big hug for you and one for your son as well.

I hope you'll update us when you hear from the docs.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/21/2007 7:48 PM (GMT -7)   
Thanks Redrose, hippimom, omega and Kristin. Well, so good has come of this. My son quit smoking and is finally listening to me about taking care of himself and eating and doing what he needs to do. He seems happy to have accomplished quitting smoking and seems more upbeat for some reason, I guess just knowing that they are working on the problem and can see it. He's doing the instant breakfast thing at least at night, taking a general vitamin (we are waiting to see what the doc wants him to take) and drinking a lot more milk and eating more dairy. I think he is relieved that it is probably dietary and hopefully easy to fix. He is also starting to do well in his Java class which is good because he needed a lift right now. He can't work any heavy type job, cant do military like he wanted to, and needs to feel secure that he can get a job where he can have insurance to pay for his medical needs and to live well enough not to be sick and worn out and get sicker. Maybe your prayers and good wishes did the trick and gave him this burst of feeling good and taking care of himself, I don't know. He had a date recently and maybe it was that too. Anyway, I'm still worried, you know moms. Hippi, I'm sorry to hear about your son's problems and will keep him in my prayers. I can't imagine a young boy being on methotrexate, a very strong, very hard on the liver and body medicine. I can't even take it, so I can't imagine what it would be like for a child. I hope that it works as it should and doesn't cause him harm, if he does have to take it and I also hope and pray he goes into remission from his illnesses doesn't need it or they find something better for him. (((hugs))) back at you and I hope that things get better for all of us!
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


omega
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Date Joined Jan 2007
Total Posts : 607
   Posted 9/22/2007 7:32 AM (GMT -7)   
This is good news, Marji, at least he is doing something to help improve his health condition.

sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/23/2007 3:48 PM (GMT -7)   
Hi, Marji. I am SO sorry your son is having to go though this. We'll pray that is all just related to poor nutrition and a vitamin deficiency that can be easily resolved. That is very positive that his spirits are up, he's stopped smoking and is making adjustments in his eating habits to help himself. I know you have enough on your plate with your health the way that it is. I just hope you can both work together to get his taken care of. Take care and good luck,
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 9/24/2007 12:14 PM (GMT -7)   
Thanks sharentrials and everyone who posted. The docs office called today and said the bone scan was normal, which is very confusing because the MRI was abnormal and the same radiologist read both. I'm worried because now we have no explanation for the crushing back pain he gets and the numbness and pain in his legs to where he falls or can't walk. I'm going to have to pick up all the stuff and get a second opinion I think. I should have had this stuff done at a larger hospital perhaps. I'm glad that he doesn't have any bone density issues and stuff, I just don't know what to tell him about his pain and what was abnormal about the mri. I also don't want him to stop with the positive changes he's made in his diet and other areas. Well, it's good news. Just need to figure out what to do from here. Maybe its just his medicine or the sodium deficiency it causes. Thanks again everyone.
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

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