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Old 02-09-2012, 02:46 PM   #1
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Out of ideas. Someone give us a direction to go!

I am praying that someone can give me some idea on how to help my son. He just turned 17 yesterday, and for the past year and a half, has been suffering back pain that is not going away, and has no diagnosis. I will start from the beginning, maybe someone sees something that us or the doctors are missing.
It started last December. My son came to me complaing his back hurt. Now, before this, for a few months, he was having sore throats that the Dr. said was strep, but the strep test he had was negative. Then the Dr. said it was mono. Then came the back pain, but I dont know if it is related. He visited his regular Dr. His urine was DARK, like the color of tea, and it showed excessive billirubin. They did blood work, and it all came back ok. Then they ran more blood tests, more detailed and they all came back fine. They said he was dehydrated. By his next visit his urine was normal. He was given steroids, muscle relaxers, and Ultram over those few weeks and none of it relieved his pain.
After several more visits to the doctor, he was referred to an Orthopedic Dr. The Orthopedic Dr. did more bloodwork, xrays, and an MRI. Some mild scoliosis was noted on the xray, and the MRI showed some wedging in a few vertabre. He then had a ct scan and it showed irritation in his lower back, but no tumors or anything specific. He was then diagnosed with Scheurmanns disease, and we were told it was mild and self limiting. He was put on physical therapy and given perscripton Aleve, Ultram, and Lortabs (not all at the same time). The pain medication did nothing to relieve the pain really. All this time he is sleeping very poorly and missing a lot of school. He cannot sit in one postistion for long periods of time, or pretty much do anything for long . The physical therapy didnt help, it seemed to make the pain worse. After the physical therapy (this is now the following September) He started having issues with his stomach, and I worried he was doing damage from the pain meds. He at ne point became very ill and was vomiting, shaking, pale, and faint. We went to the ER and his bloodwork urine and GI scan came back normal. He was given benadryl dilaudid and lidocane I believe. Plus meds for his nausea and indegestion. They concluded he had a virus and inflamation of his GI tract, but no real diagnosis. This went on for a week or so, and 3 trips to the ER. He was given scripts for anti nausea meds, pepcid, and lortabs and percocet (not at same time). The only thing that helped was percocet, and he only had a few.
He in the meantime he has been put on homeschooling, and has pretty much been confined to his bed (a tempeurpedic we bought for him) because its the only place that gives him some small relief. He has dropped 30+ pounds and is becoming skin and bones. He is depressed, and anxious.
Since October, he has returned to the orthopedic Dr., and had another MRI and xrays. They showed the Scheurmanns has all but healed, and a couple of Scmorls(?) nodes, but again, nothing serious. He has seen a neurologist, and they say its not neurological. He was referred to Emory spine center, and upon seeing the orthopedic Dr. there, he said it doesnt seem to be in his spine or bones, so a pain block would not help. He sent him for a kidney ultrasound, which came back normal. He again had dark urine, and his Dr. said he had a bladder infection and perscribed cephalexin. He has finished it and still has back pain. His pain is above his tailbone, and ends about 6 vertebra up from that, and radiates across that whole section. I should mention that he has not been on any perscription pain meds for the last 6 weeks or so.
At this point he has an appointment to see a rheumatologist, and is scheduled to see a psycologist to help his depression, and because they now believe it is psychological. I don't know what to think anymore. We just want an answer and a direction to go in. We are desparate. He is wasting away and spending the best years of his life in bed. Does anyone have a similar experience or an idea of what direction to go in?? Someone help!

 
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Old 02-10-2012, 09:06 AM   #2
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Re: Out of ideas. Someone give us a direction to go!

Welcome to the board. Your post is heartbreaking in that it is always horrid to have some "mystery" issue, and when it is in a young person, it only compounds that sense of helplessness and frustration.

I wish I could say that your post made me think of someone I knew who had something similar, but, of course, it did not. I have a couple suggestions for you and a couple comments, but I'm not sure how much help they will be.

First, I am assuming you live somewhat near Atlanta since you mentioned going to Emory...so I looked online to see if there is a Children's specialty hospital in Atlanta, and, there is. They have both a nephrology department and orthopedics and neurology, so I am first going to suggest that you give them a call and make an appointment for your son. We tend not to think of children's hospitals when we have teens, but in the world of the spine, while a teen is still growing, he can be a patient of a children's hospital. I was also going to suggest taking him to the Mayo Clinic in Jacksonville, but I think the children's hospital is a better bet, at least to begin with.

I can give you some information on what I think may be going on with his back, but the dark urine is of more concern to me. One way kidney problems present is with back pain. I see that he has had an ultrasound of the kidney and numerous bloodwork, etc. but has he been to a nephrologist to rule out a more sophisticated problem with his kidney?

The reason I suggested the children's hospital is because I think he would be seen by a team of physicians and hopefully, working together, they could figure out if there is one overlying thing that is causing these issues, or if they are indeed separate problems.

I did some research on Scheuremann's disease and there is a sub-class of it that presents in the young, particularly in teen boys, called "juvenile discogenic disease." Juvenile disc disorder, or juvenile discogenic disorder, describes a condition where the endplates of the disc spaces are not strong enough to withstand the pressures generated within the disc spaces. This leads to disc herniations into the vertebral bodies (called Schmorl’s nodes) and causes back pain at an early age.

There is an older spine doctor from the Twin Cities that has done a lot of pioneering work in spine surgery. His name is Charles D. Burton and he publishes something called the Burton Report that is available online. He writes about JDD and says "JDD is clearly a congenital condition which usually, in early years, typically does not produce disability or incapacitation but, if left unrecognized and unaddressed by preventive programs will typically turn into a true disease entity later in life." If interested, you ought to be able to find the rest of the report online. The discussion of JDD is under the heading of "Genomic Spine Disorders
and "Degenerative Disc Disease"." (I'm sorry that I cannot provide a link.)

I have a feeling this is what is going on with your son, and what the doctor called Scheuremann's disease. Burton does state that very few doctors are aware of this, mainly because most kids who have it do not complain of pain. This is a congenital issue, by the way.

If you do go to the children's hospital, I would definitely ask about Juvenile Discogenic Disease and I would read up on it ahead of time. Some hospitals have libraries where you can get access to various medical journals, etc. One hospital I use even has a librarian. I just tell her what I'm looking for and in a couple days, she emails me a list of resources, and often some sort of password so I have access to these things that are used by doctors and others in the medical community.

I'm going to post this now, but I'm going to keep thinking about your son's problems and do some more reading. Bringing up the psychologist recommendation: I assume you have mentally dissected your son's life, school, social activities, friends and peers, etc. to see if there could possibly be any underlying issues that might be causing some sort of psychosomatic issue. Any reason why he'd want to avoid going to school?

I can tell you that spine issues can be very tough to track down, and unfortunately, the patient will have to be the one who does most of the work. At least it has been my experience that if the issue is the least bit complicated or is not very obvious, doctors tend to shrug their shoulders and pass on the patient to another specialist. This is particularly true when there is more than one body system involved.

I'm afraid I do not know much about rheumatic arthritis, so cannot comment on that. While you are waiting for those appointments, I urge you to look for information on "juvenile disc disease or juvenile discogenic disease." Some websites will take about treatment in addition to describing the problem , listing symptoms, etc.

By the way, if his back problems should turn out to be diagnosed as JDD, kids who have it are encouraged to be active. Being active does not make the situation worse, and in reality, pain is lessened by activity (within reason, of course). Patients have more pain if they sit in a chair of lounge on the couch all day. Then the discs further degenerate and more problems result.

Last edited by teteri66; 02-10-2012 at 09:10 AM.

 
Old 02-10-2012, 09:56 AM   #3
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Re: Out of ideas. Someone give us a direction to go!

I have considered that he might be milking it to avoid school, but he is an A student and since he has stopped doing a whole lot of other things that require sitting and concentrating for long periods, including playing drums and hanging out with his friends, i have ruled that out. The JDD sounds like a possibility. I questioned the Scmorls nodes but the doctors all seemed unconcerned. He was also seen at the Childrens hospital at Egleston, and they are affiliated with Emory, so they all are sharing information. I will research these other things you mentioned, and bring them up to the pain clinic and the rhuematologist. Thank you!

 
Old 02-10-2012, 10:14 AM   #4
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Re: Out of ideas. Someone give us a direction to go!

Okay, I just looked up JDD and it turns out that is the type of Scheurmanns they were saying he had in the beginning. It has not responded to ay of the treatments that are used. Now they are saying that they no longer see the JDD in his scans. I am thinking it may be more of a kidney issue at this point, since his pain seems to be more on the sides of his spine, and not the spine itself. I will try to get a kidney specialist involved next I think. Of course dealing with the insurance company is another obstacle. But I will try.

 
Old 02-10-2012, 11:14 AM   #5
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Re: Out of ideas. Someone give us a direction to go!

I would agree. It sounds like a kidney thing to me, too. Some things will not show up in bloodwork or ultrasound. Perhaps another scan of some sort will be in order.

 
Old 02-10-2012, 11:15 AM   #6
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Re: Out of ideas. Someone give us a direction to go!

I don't know how active the "Kidney" board is, but you might try posting there in the off chance someone who has something similar happens to see the post. Can't hurt!

 
Old 02-10-2012, 05:58 PM   #7
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Re: Out of ideas. Someone give us a direction to go!

Has he been tested for porphyria? It can cause dark "port wine" urine, not sure whether it causes pain, though. It can also be eposidic, so he should be tested while symptomatic.

 
Old 02-11-2012, 06:10 PM   #8
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Re: Out of ideas. Someone give us a direction to go!

Have they checked his gallbladder? May seem far-fetched, but it can cause pain referred to the back in some cases. The nausea and vomiting he previously had made me think of that. When mine stopped working (no stones, it stopped draining), I did have back pain. Good luck with your search. My heart breaks for your son. Please keep us informed!

 
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