RND - total body pain and headaches?

stillsue
  • By stillsue · October 4, 2010 at 1:05 am · 27 replies
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My 14 year-old daughter has had RND for 2 years. Started with a foot and is now throughout her body...especially constant headaches and back pain. Different physical therapists think it is because of a tilted pelvis. Exercise causes her pain to be worse. She misses a ton of school. Her hips were snapping a lot but that has gotten better with p.t. Therapists say she can't exercise...just do small muscle strengthening and alignment exercises. However, I know with RND she should do lots of exercise. How can I be sure what she needs to do? Anyone else have RND throughout body and have headaches that are like migraines? Can't even see local Rheumatologist for 4 months!

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27 replies   

happymomgg

Hi Stillsue, Who diagnosed RND? Was all blood work done to rule out other causes of pain-lyme, lupus, leukemia, arthritis, etc. Did she have a bone scan? If everything is negative than she most likely has RND. Have you gone to childhoodrnd.org? Dr Sherry at Children's Hopital of Philadelphia devised a regimen of vigorous physical exercise. He has a 92-95% cure rate. My daughter, who will be 12 in Dec., had RND-all the same symptoms last year. Is now pain free for 7 months after 2-3 months of vigorous exercise. She must do the exercise! Get on Dr Sherry's waiting list at the very least. It is 6-9 months wait to see him. We didn't wait. We exercised her for 2 hrs. per day. She was as severe as a kid could be. She started to improve after about 6 wks. of exercise. I am an RN. I've done a lot of research on RND. Please e-mail me at rg519wdo@aol.com. I would like to help you and your daughter. Gina

happymomgg

I want to add, that she did have severe migraines as well as full body pain, tenderness when being touched, nausea, abdominal pain, dizziness, sleep disturbances, chills, blurred vision, just to name a few symptoms. Medication DOES NOT Help. Exercise does. Please e-mail me. Gina

catpurr

Stillsue, I agree with everything that Gina said. My daughter, had RND at age 13. Medications do not help. Rigorous Exercise does, although it is painful. She originally (through blood work ), was thought to have Ankylosing Spondolitis. We are so thankful that it wasnt! Bc the treatment for this was so much better that having to take a ton of meds. Stress, viruses, and injury are things that cause this. My daughter tended to internalize stress. We took her to counseling. She learned ways to channel that negative energy(stress) . Journaling, writing a letter to whomever,whatever she was upset with or about and symbolically releasing it (anger, pain,bitterness, fear etc...) by tearing it up and throwing it in the trash. This along with exercise, was the ticket! So, Healthy Blessings to You!!! Be positive. She WILL get better! :)) Genia

signtalker

Just another thought. My daughter was diagnosed with RND 7 years ago. After doing swimming on a daily basis as well as 1hour in the gym for 6 years and 5 weeks at Children's Hospital 2 years ago, she was still in intense pain. The doctors and therapists told her that there was nothing they could do and she would just have to live with the pain. We didn't stop there. She went to another doctor who thought she could have lyme disease. Low and behold, she tested postive. She is now doing better than she has in years. Go with the RND diagnosis and do the exercise, but if it doesn't work, possibly have her tested for Lyme using the IGENIX testing.

SwimGirl15

Hi Stillsue,
I was diagnosed with RND 8 months ago, I totally agree with bot Gina and Genia. Medication doesn't work at all. I'm a comeptetive swimmer and I took both Mortin and Tylenol, none of it helps. The only thing that helps is the exercises. I went through the out patient program at the Childrens Instuite and was discharged from it after only 9 weeks(of a reccomended 12 week program). However, I got lazy and the pain came back, and to tell you the truth its hard to motivate yourself to do these exercises when you're in pain. But truth be told the pain you experience in the beginnig isworth it in my opinion to get to the end resut of no pain. It takes a lot of determination and effort but if you really want to feel like yourself again then the only thing to do is the p.t. My biggest piece of advice is to find either a P.T. or an O.T. trained in RND exercises because since its such a "new" thing not many P.T.'s and O.T.'s have heard of it so they don't know how to help it. I hope this helps you and you daughter.
~M

lborder

My daughter was also diagnosed with RND after a two year struggle. She also had constant headache, shocks through out her body, all over pain, couldnt sleep, or concentrate, couldnt stand noise at all, dizzy, vision disturbances, excessive sweating, vomitting, nausea, always tired, constipation, and i'm sure there is some i forgot. She also had touble with her menstral cycle stopping for about a year, this happened twice, but now is pretty much on a regular cycle now. We saw many different types of doctors and tried various medications. None of which helped anything at all. We saw Dr. Sherry, but with the insurance and waiting list, we chose to see a Dr. Paul Rosen at the childrens hospital of Pittsburgh. She went through a three week stay and is now pain free for three months and counting. So I too strongly agree that alot of exercise is the key to success with RND. ou need to keep moving even though its hard and painful, but the effects are tremendous when your child wakes up only to realize thier pain is gone! Keep strong and im praying for all the families.

stillsue

Thanks to all of you who replied. I appreciate your willingness to share with me. My daughter is seeing a P.T. three times a week and exercising on her own the other days. She did start back to school last week on a shortened schedule of core classes. She was out of school for 5 weeks. Pittsburgh's TCI has approved having her come there and waiting on insurance approval now. She may get in as soon as next week. Lborder, did they tell you that your daughter would be there for three weeks or did they just see how she was doing and determined the discharge date? We are trying to make travel plans and are unsure of how to proceed. Have any other advice for us regarding going there, staying there, etc.?? Thanks and I pray that all of you are well!! Thanks, StillSue (Sonia)

jld131

you should have her go to the childrens institute in pittsburgh they have an amazing rnd program.

happymomgg
  • By happymomgg
  • Reply 1178668 · In reply to 1175794 by stillsue
  • November 15, 2010 at 9:30 pm
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Have you seen any improvement yet? It took us about 6 weeks to start seeing improvement. Now she's pain free. It was great that she started back at school. That will help too. Gina

stillsue

Well, we have not seen steady improvement. Our life is like being on a roller coaster. We hear from TCI that we are to come and then we don't hear anything for a long time...then we get a call saying they want us...then no call. In the mean time, she continues to exercise every day, with three days at p.t. and tries to go to school, but headaches cause her to miss most days. It is so depressing! Two years of this is too much...I know others have had to deal with it longer...how do they do it? Well, we will deal with one minute at a time. Prayers for you all!!

happymomgg
  • By happymomgg
  • Reply 1186225 · In reply to 1183349 by stillsue
  • November 19, 2010 at 5:43 pm
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Hi Stillsue, It's lborder's daughter that was in TCI. Gina

rndmom

I too am wondering about what all rnd can be. My son, 16 was diagnosed with rnd last February from a severe concussion the year previous to that. He went through the wonderful program at TCI and graduated in September of this year. He went to work out before bed one night and hadn't worked out for 5 minutes and all of a sudden he got dizzy, followed by weakness, severe headache, double vision. These symptoms havn''t gone away yet. Medicine does very little. Doctors are looking at his heart, doing mri's and putting him on migraine meds. If he does anything, his symptoms worsen and he almost passes out, headache spikes. Before all this he noticed that when he stretches, he would almost pass out. Does this sound like rnd to you folks who understand it better than me? His rnd pain has come back full force to his chest too. He has back pain, neck pain, is losing weight. The sudden onset and him wanting to pass out when stretching is the piece that has me puzzled. We just wait for appointments to come to await diagnosis. Its so sad to watch our kids go thru such day to day mysery and pain and miss out on life and school as we wait for appointments. Could anyone point me in a direction to seek help for him? What do you folks do about schooling? He can barely work with his headache? Our local cyber school was awful last year. Does anyone recommend a cyber school that makes accommodations? My heart goes out to all of your children who are suffering with such pain and challenges and my prayers go out to you and your children too. I welcome any suggestions. My son has missed about half of the last 2 years and now has been out of school for the past 7 weeks with no help in sight. God Bless the children. ...and their parents...

stillsue
  • By stillsue
  • Reply 1191934 · In reply to 1191882 by rndmom
  • November 22, 2010 at 11:22 pm
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mdmom - So sorry to hear about your son. This doesn't sound like RND to me, but perhaps others will share s I am just going by my daughter's experiences and what I read and hear from others. Can you speak with anyone at TCI to see if they ever hear of these issues? It is my understanding that your school is obligated to assist your son with his education. Do they have any other options for him, such as an in-home tutor? However, with headaches and all as bad as he has, how could he concentrate to do the work? My heart aches to think of your problems. I will pray for you and answers to his problems. There are so many conditions out there that are unknown. One boy at our school who is 14 kept having migraines and dizziness the last couple years. They finally discovered he has what is called Sleeping Beauty Syndrome. One I have never heard of! Keep searching for answers...don't give up! Prayers for you.

rndmom

Thank you for your good advice, Stillsue, I'll call our pt at TCI and look up that Sleeping Beauty Syndrome. Thank you for your reply and prayers. I'll pray for you and your daughter as well.

happymomgg

Dear rndmom, this really doesn't sound like RND. I am wondering if this is related to the concussion he had. Certainly with RND, there are migraines, but with stretching? This does not sound right. I am an RN and feel I have a pretty good understanding of the symptoms. I agree with the last response that you should talk to the people over at TCI. They would know best. They also know your son's case. As far as school goes, your school district has an obligation to provide tutoring at home. My daughter had a tutor for one hr. per day for 4 months. It's amazing how much they can cover in an hour when it's one on one. I also invited her friends over when she could tolerate it to prevent isolation. Good luck and I will pray for him right now! Gina

happymomgg

Hi rndmom, I want to add, has he seen a neurologist? Have they done an MRI of his head? These symptoms do sound strange, but then RND is a strange syndrome. My gut feeling is that it is not just RND. Consult TCI as most doctors are not so familiar with RND. Gina

lborder
  • By lborder
  • Reply 1211594 · In reply to 1175794 by stillsue
  • December 4, 2010 at 10:03 am
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Hi Stilsue, How are things going for your daughter? I hope my advice with seeking out DR. Rosen has helped. Were you able to get into his program and have success. Keep staying strong for yourself as well as your daughter, remember you are her voice, but sometimes it takes the shouting for the doctors to hear you, Don't take no for an answer. Im glad I could aim you in another direction, for this is a mission of mine. My heart aches to read of all these kids in pain fighting this horrible RND momster. many prayers. post an update I would like to hear from you. lborder

stillsue
  • By stillsue
  • Reply 1211630 · In reply to 1211594 by lborder
  • December 4, 2010 at 10:22 am
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Hi Iborder and all! We are at TCI now and my daughter completed her first week here. We have not met with a Dr. Rosen or any other doctor. Beth is in charge and she sees several therapists and the psychologist, Robin. They say she will be discharged this coming Friday. Hope this all works as she has found it to be tremendously tough and painful! Thanks and I will update again!

lborder
  • By lborder
  • Reply 1224135 · In reply to 1211630 by stillsue
  • December 11, 2010 at 11:29 am
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Hello stillsue, Im very glad to hear that you were able to get into TCI. Yes all the staff are wonderful people and make you feel like your not alone. My daughter also seen Robin for a therapist. And yes the program is very tough, but it works if you take and use the knowledge. My daughter cried her second day and wanted to quit, she told me "its too hard" , I told her if it was easy that she wouldnt be there. You need to focus on the bigger picture. She is now almosr five months pain free and does her home program. She is determined to not let the pain to come back. My thoughts and prayers go out to your family. Keep strong and you will find the light at the end of your tunnel.
Lisa:)

swimmermom17

my 16 yearold daughter was diagnose with rnd last month she got hit in the head with a 12foot foldable door in her class room at school sept 10 2010 suffered her 9th concussion the symptons of pain all over started about 2 weeks after the hit she was in awful pain that would be at night followed with vomiting this went on almost 7 to 8 weeks of vomiting also she complained about swelling in her hands and arms one night the pain was so bad she thought she was dieing her dad and i were in tears going thru this theirs was nothing we could do they couldnt give her pain medicine because of the concussion she in physical therapy til we can get to the childrens instiute of pittsburg she has a long recovery we had a good report in august from upmc concussion clinic they allowed her to try swimming this season we came back to school this year from being tutored last year being with her class again we were on our way to our goals then this accident that should of never happened no one help her when she was hurt they sent her to the bathroom by herself after complaining about feeling sick to her stomach thank god she had her cell phone to call me for help her speech was slurred and her legs were going numb and feeling like she was going to passout we our just so angry your child is suppose to be safe in school no one called a nurse 911 nothing for my child and she asks me why they would not help her i tell her i dont know why shes scared that her life will not be the same before this hit she took to the head neck back its not fair so to the people that suffer from this terrible pain and your caregivers may god give u strenght to get u thru your flair ups god bless u

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