Toddlers severe leg pain

My 31/2 year old daughter is having severe leg pain in the middle of the night, so much she cries. I am always there to attempt to comfort her. Also, lesser pain seemingly throughout the day, daily now it seems. It just occurred to me, because she has told me it is the reason latley, she never wants to walk up the stairs. And this is not like her. This has been going on, I told the specialist about it when it was beginning to be an issue about a month ago. I am now going for another appt. soon. Please any input is appreciated...is there a chance that it is not serious. She has never had an Mri or anything past consultation and was told to come back if it becomes more persistant. She also has claimed simultaneous pain in arms 'and everywhere.' Again, is there a chance that this is not serious, (my hope of course).

Edited April 2, 2009 at 9:41 am

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Hello,
Wow memories. Now first let me say you wont know until you get an MRI only then can you pinpoint or eliminate possible causes. My son started complaining about his legs hurting around 3 yr (co-inky-dink)not as intensely as your kiddo, it sounds. I just thought growing pains or something. It wasn't until he was 5 and a fall on his tush caused him sever pain that I insisted on an MRI (that the pediatrician did not want to give me) That's when we found a growth.

I don't know what's hurting your baby, but you have to start looking for a cause and an MRI is a start. It's safer to look and find nothing than to let it go and years later wish you hadn't. If the MRI is clean then you can move on to other possibilities, until you know what it is and what are the solutions or treatment options.

Good luck to you in your quest. I hope you find your answers soon.

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If growing pains has been ruled out as a cause, I would push for an MRI. Spinal tumors can cause leg pain. My son is 10 and has had leg pain for many years now. They have MRIed his back a couple of times now looking for tumors, but have found nothing. He did have toxic synovitis when he was little. That's a spontaneous arthritis of the hip joint that came along with fever and recurred for a good while every time he had a fever. Is it possible that it's muscular pain? Perhaps a little PT might be a help.

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Hi, Thank you both. I'm not sure, but think PT is Pediatric Tylenol, thanks. We are trying to schedule an appointment for this week. It is beneficial to hear the other stories and be aware of a range of various causes of leg pain.

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Rebeka,
Sorry - I am talking medical lingo! PT means physical therapy. You read this boards long enough and you start talking like the doctors!;) Please let us know how your little gal makes out!

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Last night her extremities were so hot...her feet legs hands stomach were so much warmer than her sister sleeping next to her. Her head was not. This has happened before during a fever just over a week ago-hot extremities. At 4am she said her head hurt, she has never complained of headache. When I tried to comfort her by rubbing her back, she said it had a bruise. When I touched her very warm feet she said there is a boo boo on it. We went to the pediatritician yesterday, because for the last 4-5 days she repeatedly wants to use the toilet 2 min after she is done up to 4 times-she will sit a while waiting to go pee again, this mostly before bed. They checked her urine and it is normal no UTI Urinary Tract Infection. Yesterday I had some hope that her leg pain would go away after the UTI was treated, but they said there was no UTI. I also had an appt for her specialist Genetisist scheduled for Monday. I may cancel it because yesterday the Pediatrician, who is not her usual due to impromptu visit, recommended another who is much more involved and exclusively in NF- at UCSF. I am going to cancel the Monday appt at childrens hospital if I am able to schedule the UCSF appt. It seems that the other was so nonchalant. I am afraid to wait for the appt due to the seriousness.

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Hello,
I also suffer from severe leg pains. Not only in the middle of the night, but during the day, too. Sometimes it feels like my legs are going to give in from under me. Although I don't suffer daily it is enough to complain about it.

I brought it up to my primary and she claims it is not NF related. I beg to differ. I will, however try to get to Boston General to see a NF specailist and see what he has to say.

I have had a MRI of my lower back and they found nothing. I also had a nueroprothy test done and again negative.
I wish I could be more of help. Maybe it's muscle related???? But, have his doctor check him out more thorough and have the MRI of his lower back and maybe his legs. Something is causing it.

Now that I think of it??? Have his calcium / vitamin D level checked maybe he is not getting enough vitamin D. My vitamin D blood level was 20 and it is suspose to be 30 or above.

My pain can be severve enough to make me cry I can only imagine what your little one is going through.

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Hello all I too have a son who is NF1 positive who just recently had the onset of adema and pain in his right leg. We took him to the hospital b/c his leg was so swollen and he couln't even walk on it. We had an MRI done which I strongly suggest and make sure it it localized in the pelvic and lower lumbar region. They should check for plexiform fibromas that are growing in the nerve endings. We are seeing an NF specailist at Childrens hospital in DC and are getting ready to start seeing on at Johns Hopkins Hospital in Balitmore. I would also recommend seeing a pediartric neurologisy that specializes in NF they will know what to look for. I am by no means a nurser doctor or anything like that just a Mom who herself has NF and comes from a long line of family who have NF. My son has some of the more rare things associated with NF so I have learned alot about the disease. Hopefully this was of some help to you.

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you need to get a mri and demand it in the emergence room dont let them make you wait this could be very be seriouse I pray that it is nothing get it checked out please

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My son is 3 1/2 and he is also having the leg and lower back pain. It wakes him up at night and some days he has trouble walking due to the pain. We are scheduled for a MRI on April 13th. My son has also been having to go pee all the time the last couple weeks. I am curious if you find anything out about that.

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Yes, very strange, nf. Seems the same for our two. I will let you know and you please, tell me how the mri comes out if you like. I think you will know more first. Thank you.

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Evan's MRI of his spine was normal. We are very excited, but where do we go now. He still complains about his leg. They did a x-ray of both legs and some blood tests. We are going to a neurologist in June, so I guess we will wait to see what he says to do. I would like it if you would keep me informed with what they do for your daughter. My older son is borderline Autistic and I have learned that if you don't ask for it the Dr's won't offer anything.

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hi all! i debated on replying to this discussion for quite sometime. Due to the fact that i didn't want to say anything that would scare or worry anyone more than you already are. but then i got to thinking that what my son went through could be of some help to one of you.
When my son was 4, he started complaining with his leg hurting, to the point that he would refuse to walk. Then if he did he would limp and hold on to things. We went to the doctor and was told it was growing pains and just to give him Tynelol. At this point i noticed he would rather stay inside watching movies or playing video games instead of going outside. Then he started complaining with his right elbow hurting. There was days that he wouldn't even move it. Then the headaches started. i can't even begin to express how sereve these were. He couldn't keep anything down and he wanted to sleep all the time. yet when he was asleep he would be moaning and groaning the whole time. This went on for almost 3 months. We were at the doctors 4 and 5 times a week during that period. The doctor kept telling me it was allergies and growing pains. Needless to say, i found a new doctor. The first thing he did was send him for a MRI.
The MRI showed that he had way to much fluid on his brain. With the fluid it was pushing against his brain and causing it to push against his skull. Within a week of changing doctors we were at Vanderbuilt (in TN) where they placed a VP shunt into his head. Thankfully this fixed my sons pain in his leg and in his elbow. However he still suffers with migraines sometimes on a daily basis. The surgion could only tell me that sometimes when there is brain trauma it can effect the limbs. It can cause the nerves that are controlled in the brain to be pushed against and then the kid will complain but yet not truly know where the cause of the pain to come from. I'm not saying that this is what is causing your child's pain, but it couldn't hurt to ask your doctor if this could be a cause. by no means am i saying that your child could have excessive fluid on the brain, however there could be something else there that could be doing basically the same thing. I hope that i'm wrong and that they can find out what the true problem is!! i will keep you and your child in my thoughts and prayers!! Best of luck to you!!
Sheleena

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Don't you just want to scream when they say " it's just growing pains"
I will talk to the neurologist about that. Do you know how long he had that problem for? When my son was a baby he had a MRI because they were worried about that problem. His head size went from 90th percentile to off the chart in a little over a month. Everything was normal, big heads just run in the family.

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Thank you Evans mom for sharing, and the new photo, so sweet, it was nice to hear that his mri of spine was normal. My daughter seems to have calmed down not complaining about legs (as much) and that issue of going pee often, has practically disappeared. It almost seemed connected to the flu bug that everyone got, but seemed to effect my daughters legs and urinary habits as well. Maybe just a coincedence while coinciding with the flu. ?? How about your son? We are still going to go through with seeing another nf specialist, but I am working out some details with the insurance before we are able schedule the appt. And Sheleena, too thank you yes, I am glad you shared your experience, it gives us more leads as to getting to the bottom of the trouble. I hope your sons pain clears one day soon. I knew there were people with similar trouble and a story behind it and it is why I inquired. If it seems it could be relevant to the trouble it is worth looking at and ruling out if determined not the cause. Evans mom it seems ruled it out as stated in her last post and that seems hopeful to me that it does not have to be these things! I will remain proactive until getting to the bottom of my daughters issue. This annoying elusive nf. My hope still, she has a very mild case of what she was diagnosed with.

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