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Old 11-28-2007, 09:04 AM   #1
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karen98 HB User
Another Child with CRMO

Hello,
I'm new to this site but glad to find all the company! I will share this with my 14-year-old daughter who was diagnosed with CRMO in January 2007 after three years of bone pain in one area or another... all misdiagnosed. She has 9-10 involved hot-spots but her most painful areas are in her tibia and thoracic vertebra. She suffered a compression fracture in her T6 vertebra after a bike accident which has healed but is still inflamed. Her doctor believes that the lesions on that vertebra weakened the bone which led to the fracture. Good detective work by her back doctor and consultation with a doctor at Stanford led to a biopsy and eventual CRMO diagnosis.
She is now being treated by a rheumatologist and is taking Colchicine and Naprosyn. Colchicine is supposed to be good for gout but is used by the rheumatologists at Stanford for CRMO as it is considered safe drug to start with. I was wondering if there is anyone out there using colchicine and if so, what success they are having.

There was a period of time last May when her entire body seemed to be in a state of inflammation. All of her hot spots would hurt at once and she had difficulty even moving about the house. This initiated our first visit to a rheum. who started her on a course of Prednisone. The results were astonishing and within 6 hours (that's no joke), she was completely out of any pain. The following few weeks, I saw a kid I hadn't seen in years. She was energetic, eager to participate in anything, and happy. But she could not stay on the Pred. due to long term effects and moved to the colchicine/naprosyn combo she is now on. The pain is back but not in as many places but now her stomach is a mess. To deal with that, we've experimented with Prilosec and Zantac with not much improvement.

The jury is out for us as to whether to push for different drugs, use no drugs, or stay the course with these. She absolutely fears the thought of life without drugs because on days she forgets, she feels awful. We know that the drugs she is on now reduce the pain somewhat but don't eliminate it.
I have read the many threads that suggest the different drugs used so far. I'd like to hear from are the parents who have had success with certain treatments, what worked for them, what didn't. I'm also curious about surgical procedures because these were not even considered an option by her orthopedist, and he is one of the few doctors around here who treat these patients.

My daughter and I would also love to hear from kids as well! Our kids need a mediated forum like this. Chronic pain can be lonely and is so often misunderstood. These kids also give off a lot of non-verbal cues expressing their pain but which are interpreted by others as disinterest, boredom, or anger. I've had to explain to some of her teachers that they need to consider that she may be having a bad day, and not assume that she doesn't care about what is going on in the classroom. I just think these kids need each other to talk to.

Hope to hear more from you all in the coming months!

 
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Old 01-16-2008, 09:29 PM   #2
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jram01rebecca HB User
Re: Another Child with CRMO

Hi and thanks for your responses.

My girl doesnt feel greater pain at any given time of the day, it is just continuous when the disease is active and when she is not taking pain relief.

My girl had hotspots in 5 places at one time but we did manage to bring it down to 2 on NSAID. It all fell apart through when she got bitten by an ant while camping which seemed to throw her whole body into chaos. She could hardly walk with spots in both hips, acetabulum, anterior chest, and both feet, and intermittent pain in her leg long bones. It was at this point that I consulted a Paediatric Rheumatologist (we have only 1 in QLD who treats about 4 kids with CRMO) and he commenced the steriods which had an immediate effect. I thought she would get a little longer then 2 months pain relief though, particularly being on methtrexate. She felt a little ill when she first took the meth but she now takes it with no problem.

My girls lesion in her jaw is the only one active at the moment but I do expect others to start again in a couple of weeks when she returns to active sport. I know that the Doctors say that stress doesnt play a role in where the lesions pop up but I am sure it does. My girl had no sign of this disease until she had her braces on and she has been very active for years with triatholon, swimming and irish dancing which is very hard on feet. It would be so easy to stop her from doing any of these things that she loves but the psychological effect on her would be devastating. As it is she has to start a new school in a couple of weeks with a deformed jaw and I cant imagine how she is feeling about that! You can actually see the jaw bone jutting out a good 5mm in her mouth which causes a massive amount of soft tissue swelling.

Apparently the gene which causes CRMO has been identified is closely related to other autoimmune dieases such as chrohns,psoriasis, and uveitis. My husband has chrohns (gastrointestinal) and I have a strong family history of psoriasis(skin) consistant with this.

Thank you both again for your feedback.

 
Old 02-28-2008, 05:16 PM   #3
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sam92 HB User
Re: Another Child with CRMO

Hi i would love to talk with you regarding your daughters condition. My 12 year old son was diagnosed with CRMO in April 2007. We have to travel from Townsville to Brisbane often for treatment. My son is taking 20mg Methotrexate once week, folic acid, vitamin D, Calcium, and Phosphate, he also has pamidronate infusions every 12 weeks, his treatment is working and he is now pain free.

 
Old 03-04-2008, 07:46 AM   #4
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heatherSAPHO HB User
Re: Another Child with CRMO

Hi,

I am a 30 year old female and was only diagnosed with SAPHO (or CRMO) last summer, although I believe I have had it for around 13 years or more, but was diagnosed with chronic osteomyelitis for all of that time.

I have flare ups, which are quite painful, but I am pain free as of today. I do have a flare up of psoriasis on the palms of my hands and the soles of my feet though (part of the condition).

I have been doing more research in to the root causes of this condition and I also believe it has alot to do with stress, I know my flare ups can be traced to stressful events in my life. We also know that this is an auto-immune disease and therefore there is something in our bodies that is confused about what it should be fighting and what it should live in harmony with (our own body). So the theory is that if you can fix the immune system that you can fix the symptoms etc.

I am seeing a homeopath/naturopath to try to determine what my food/environmental sensitivities are and eliminate/fix them. Therefore causing less stress on my body and immune system. Some things that have been identified to cause my body stess are shrimp, cola, wine, MSG, etc. So I am tring to avoid those foods. I am also taking natural supplements such as a good multivitamin, probiotics, oregano, digestive enzymes, garlic capsules, etc. My doctors are recommending I start methotrexate but I am unwilling to take this medication until my husband and I decide if we want a third child or not, due to the possible side effects of pregnancy,and I wanted to give natural remedies a chance first. My family doctor feels so stronly about this that he says he will not treat me during my pregnancy if I get pregnant after being on the methotrexate due to possible birth defects, and that if I decide to go on the methotrexate that I should consider having my tubes tied.

I do take ibprophen for the pain when I have a flare up, although I try to only take it when absolutely necessary.

I know this is not for everyone but just wanted to throw it out there for something to think about

Heather

 
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Old 03-06-2008, 01:56 PM   #5
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Sandra1973 HB User
Re: Another Child with CRMO

My 9-y/o son was recently given a tentative diagnosis of CRMO. I have had little luck finding much information about it anywhere. I am interested in alternative therapies, nutrition, and supplements, to add to our medical perspective. I am not finding anything. Does anyone have any suggestions? He is not currently receiving any treatment, I'd like to hear viewpoints about that, as well. He is taking OTC acetaminophen right now for pain, as he had a bone biopsy (not just the needle aspiration, but two 1/4 inch holes drilled into the tibia to the bone marrow) in the tibia in January, and ibuprofen inhibits bone growth. Until that heals, they do not want him taking it. Since surgery, he has had 2 significant episodes of pain. He is an athlete (wrestles, plays soccer and football) and I'm wondering if he will be able to resume the activities he is passionate about? Help! I am looking for support and resources. I was so excited to find this website and to read other posts. I'll be looking forward to being in contact with any others in a similar situation, or who may have helpful information. Thank you!

 
Old 03-07-2008, 02:39 AM   #6
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sam92 HB User
Re: Another Child with CRMO

Hi Sandra.
sorry to hear about your little boy. My son was diagnosed with CRMO at age ten, we had many months of pain and rubbish from doctors before he was finally diagnosed in 2007. My son had a CT guided needle biopsy in the December 2006 and an open chest bone biopsy in April 2007 he has CRMO of the spine vertabra. At the time of diagnosis he had 5 vertebra fractures. He wore a spinal brace for six months and started treatment in April 2007. Methotrexate 15mg once a week orally, pamidroenate infusions every three months in hospital over three days, calcium, vitamin D, folic Acid and Phosphate one a day every day. He just had his methotrexate dose increased to 20mg a week. He will have treatment for at least another two years. My son is now completly pain free and can do everything he used to do prior to diagnosis, unfortunately he will never be allowed to play contact sports again and he used to love playing football. He is about to start physiotherapy to strengthen his spine and will have his fourth infusion in a couple of weeks time. I'm not really sure if i have helped you much, but please keep in touch and let me know if you find any alternative treatments for your son, take care
Sam92.

 
Old 03-18-2008, 07:54 PM   #7
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3lilladybugs HB User
Re: Another Child with CRMO

My son has tried prednisone and many other pain meds. He was also on Enbrel and it seemed to work at first but not very well. We seen Dr. Polly Ferguson at the University of Iowa. We live in Florida but it was well worth the trip. She suggested pomidranate and methotrxate. She also suggested trying remicade and methotrexate first since my son also has crohn's disease. He is now on remicade and methotrexate with Gabbepentin because he got neuropathy in his legs and was in a wheelchair for awhile. He is having good luck so far! Praise God, he only has a little break through pain every week. Now we are dealing with my daughter going through the same thing.

 
Old 04-11-2008, 05:36 PM   #8
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Sandra1973 HB User
Re: Another Child with CRMO

Thank you for your input. I haven't been here in awhile. Our son saw a naturopath who has prescribed calcium, Vit D3, Strontium Piperine, arabinogalactans, and lactobacillus acidophilus (a probiotic). He has been prescribed naprosyn by his rheumatologist for pain. He has been having ongoing abdominal pain which seems to be getting more frequent. Is there a connection between CRMO and Crohn's? Or IBS? He will see a pediatric GI the end of this month. I am hesitant to give him the naprosyn, as I've found that it can cause stomach issues. Are we exchanging one set of issues (pain) for another (ulcers, bleeding, etc) if we give him the naprosyn? The rheumatologist is strongly suggesting not to give him the Vit D b/c the levels in his blood stream are normal. She isn't very supportive about the other supplements, either. What can we do to support his immune system and bone remodeling? I believe in following the medical community, but I also believe there is some merit in natural treatments as well. Any feedback regarding this? I'm struggling with finding the balance. Thanks for any suggestions anyone may have.

 
Old 05-01-2008, 01:06 PM   #9
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karen98 HB User
Re: Another Child with CRMO

Hello All,
I haven't popped into this thread for a while and I'm so glad that we're all communicating. My 14-year-old daughter's last bone scans (Dec. 2006) showed lesions in seven places distributed throughout her body. Two were biopsied in January 2007 confirming the CRMO diagnosis.
She has been on 1000mg of naprosyn/day since May of 2007 and to protect her stomach, she takes omeprazole 20mg, nightly. This reduces her stomach acids and seems to help. She can't imagine life without pain-relief, so NOT taking something is a scary prospect for her and she says she feels a big difference on the days she forgets her naprosyn.

In May of 2007, while on naprosyn, she flared up and could hardly move about the house. Prednisone was prescribed by the rheumatologists at Stanford and she VERY quickly became symptom free (to our shock). Because she has a compression fracture of one of her vertebra (CRMO weakened it), she won't be taking the prednisone again unless absolutely necessary. The doctors don't want her to risk osteoporosis in the future given her back problems already.

Weaned off the prednisone by August, she moved to colchicine, a drug that has had some success with CRMO patients. In her case, it gave her stomach problems. After discontinuing that in January of 2008, her stomach problems disappeared. Meanwhile, her pain was still present.
We moved to sulfasalazine in February, only to find out that she is very likely allergic to sulfa drugs (as well as penicillin). In March, it was methotrexate 20mg, oral with the requisite folic acid supplements. She felt like it did nothing and her pain seemed to be getting the best of her. The fourth week, we switched to methotrexate injections and continued for another three weeks. Again, she felt like she wasn't getting results. Last week she began Enbrel injections twice weekly. If it works, we'll take her off the naprosyn.

My instincts tell me that we should give the methotrexate a little more time. While she says it did nothing, I noticed less complaining about pain, particularly in the mornings and evenings when she seems to feel her worst. But we'll work with the Enbrel for the time being; partly because it's what she wants to do.

She does'nt feel like she can run (lesion in tibia) or swim (lesion in upper arm) and is angry about what she misses out on. She's taking the big drugs in the arsenal in the hopes of remission, and a chance to swim and play soccer again. Her team misses her!

What I notice:
Pain is greater in mornings and evenings.
Minor illnesses, bug bites, seem to make her flare up. Strangely, as a child she was and is rarely sick--probably due to that overactive immune system.
Stress--well, she feels stress as a result of her hurting. I'm not sure that stress actually causes her to flare up but I'll pay attention.

Looking forward to hearing from you.

You've all brought up some great points. What I think we're all interested in is what works for CRMO? Her rheums tell us that this is an art and that we'll keep trying until she is happy. No sports now, but we're not giving up.
Karen

 
Old 05-14-2008, 01:07 PM   #10
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ndix HB User
Re: Another Child with CRMO

My 6yo daughter was diagnosed with CRMO in November. Had some initial relief, after recovering from two biopsies, from naproxen. Doesn't seem to be working anymore. Evenings, Nights and a.m. are the worst. We cannot get through the night. She awakens crying, wants her leg to be rubbed, is not easily comforted. This continues throughout the night. Noone is sleeping. Before we begin steroids or other powerful medicines we are thinking of exploring complementary medicine. Any info would be helpful regarding yoga, reiki, physiotherapy, etc. Also any info regarding natural remedies.
Has anyone take sleep aids to help them get throught the night? Also, how did you find out if the stomach issues were just related to the medications or more serious (chron's, colitis, etc.). She constantly complains of stomach issues even though she is on Pepcid AC twice a day. Appreciate any help -- we are desperate.

 
Old 05-17-2008, 09:45 AM   #11
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karen98 HB User
Re: Another Child with CRMO

My daughter had stomach troubles while on naprosyn until we changed to Prilosec. You might also consider taking her to an allergist to see if she's allergic or intolerant of certain foods. My daughter can't have foods with sulfa (dried fruits and such) and can't have dairy products with some of the medications she's tried or she gets nauseous and completely loses her appetite.
As for the big meds (prednisone, Enbrel, methotrexate, etc.), I agree you have to be careful. Prednisone can be effective VERY quickly if given in pulses by calming down the immune system so that her bones get a well-needed break. We use it as a tool when all else fails and she's absolutely miserable-- but we are also very judicious when we use it. Her rheumatologists believe that as long as we're not using large doses for long term, she'll be fine. Docs give it for poison oak out here all of the time and the usage model (dosage, length of time) is pretty much the same for the CRMO kids. Sometimes it even knocks these kids into remission. The docs warned us that "dribbling" the medication (too low of a dose at first) isn't nearly as effective as starting out with a high dose for a few days then weaning them off of it.
Sometimes these kids just need a break when things get to be too much and we parents have to decide when that is. After trying so many approaches over the years, with little success, she was beginning to feel hopeless and angry. It manifested itself in a variety of ways. She's on Enbrel now and for the first time in three years, she feels good. It is remarkable to see the change in her attitide. We are worried about the long term effects but we are also worried about the long term effects of chronic pain. In the end, we have to make a choice between a bunch of bad choices.

As for yoga, etc., there are incredible tools out there that help people deal with pain. Yoga and meditation can be very effective but you've got a six-year-old and meditation takes a lot of training and kind of patience that she might not be capable of yet. It certainly couldn't hurt.
Also, I've heard good things about fish-oil supplements but haven't tried them yet.
We're hoping for the best for you and your family. Good luck and we'd look forward to hearing what works and doesn't work for your child.

 
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