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Old 10-29-2015, 01:38 PM #1
thowell thowell is offline
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Default 12 year old suffering with Chronic pain, not sure where to start...

New to the forum and not sure where to start so thought I would introduce myself first. My 12 year old daughter is suffering with very intense neck pain. She also has constant nausea, severe headaches, constant fatigue, sharp sudden pains in different areas.

A little of her story in 2009 when she was 6 she started complaining of neck pain. These seemed to be spasms that would come and go. No specific injury that seemed to cause these. They started out only being a few times a year but quickly increased until in 2011 she had these at least 3-4 times a month. They would last 24-48 hours and then seemed to taper off. we saw, Orthopedics, Neurology, Physical Therapy, had MRI, x-rays and blood work and nothing showed up. Then in 2013 it stopped!! No explanation but it seemed to go away.

Unfortunately it did not last. Again it started slowly with specific episodes about 6 months ago. Mostly complaining of neck pain and headaches, dr gave her flexeril. Didnt seem to work other than making her go to sleep. Episodes typically 48 hours long. Then beginning of September she woke in middle of the night in horrible pain and it has not let up. She can barely get out of bed most days because pain is so bad. She is getting very depressed because she has no quality of life. They have prescribed Gabapentin but it doesn't seem to help.

She is once again scheduled for MRI and blood work and has been referred to Orthopedics. I am at my wits end and not sure what to do. Some doctors have even hinted they think she is faking it but I know that is not the case. Any advice, ideas or suggestions are welcomes.
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Old 10-29-2015, 02:35 PM #2
caroline2 caroline2 is offline
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Hi, sorry to hear this of your 12 yr old. First thing that came to my mind is seeing a naturopath or integrative MD and trying to find out what is going on from their viewpoints.

I have two teenage grandkids and can't imagine.
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Old 10-29-2015, 05:22 PM #3
thowell thowell is offline
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Originally Posted by caroline2 View Post
Hi, sorry to hear this of your 12 yr old. First thing that came to my mind is seeing a naturopath or integrative MD and trying to find out what is going on from their viewpoints.

I have two teenage grandkids and can't imagine.
I just looked it up and the current Hospital system she is in has an entire Integrative Medicine Program. I will definitely check into this as well.
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Old 10-30-2015, 07:33 AM #4
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Heart Welcome!

Hi Thowell,

Welcome to NT.

I am sorry your daughter has been suffering.
As a mom, her suffering must also be sad for you.
My heart goes out to each of you.

I feel it's very important your daughter have a full work-up in a Neurophysiology Lab. More specifically, please look into Neuromuscular testing, like: EMG, NCV and whatever else a Neuromuscular specialist feels is helpful in diagnosing the cause. Neuromuscular specialists often recognize symptoms and signs not otherwise readily recognized by a General Neurologist.

There are various types of dystonias, myotonias, and other neurological conditions (Neuromuscular and Movement Disorders) which can show up at any age. Just one example (of many): http://www.ninds.nih.gov/disorders/d..._dystonias.htm

I hope your current Neurologist and/or Primary Care Physician will help in quickly referring your daughter for this type of an evaluation.

While I hope your daughter's does not suffer one of the complicated conditions, the accurate diagnosis of the cause of your daughter's condition is very important. Hopefully, an accurate diagnosis will lead to treatment targeted at the cause.

Symptomatic treatments can help; yet, often are not specifically targeted at the cause. These types of treatments are usually determined by what gives her some relief and not too many side-effects. Symptomatic treatments can be allopathic, integrative, physical therapy, etc. Any symptomatic treatment which gives her relief, without too many side-effects, is important. It's critical to also find out the cause of her suffering, as doing so may lead to more specific treatments which may help her more than simply treating symptoms.

Is there a Neuromuscular Clinic within the Neurology Department nearby?
Is there a Children's Hospital nearby?
Is there a teaching hospital nearby?

I hope you will start an ongoing thread in the forums below. I have questions and am reasonably sure other members may have questions/information to share with you. I think we can help in supporting you in finding more assistance for your daughter.


DejaVu
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Last edited by DejaVu; 10-30-2015 at 08:01 AM. Reason: added info.
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Old 10-30-2015, 04:55 PM #5
thowell thowell is offline
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Quote:
Originally Posted by DejaVu View Post
Hi Thowell,

Welcome to NT.

I am sorry your daughter has been suffering.
As a mom, her suffering must also be sad for you.
My heart goes out to each of you.

I feel it's very important your daughter have a full work-up in a Neurophysiology Lab. More specifically, please look into Neuromuscular testing, like: EMG, NCV and whatever else a Neuromuscular specialist feels is helpful in diagnosing the cause. Neuromuscular specialists often recognize symptoms and signs not otherwise readily recognized by a General Neurologist.

There are various types of dystonias, myotonias, and other neurological conditions (Neuromuscular and Movement Disorders) which can show up at any age. Just one example (of many):
I hope your current Neurologist and/or Primary Care Physician will help in quickly referring your daughter for this type of an evaluation.

While I hope your daughter's does not suffer one of the complicated conditions, the accurate diagnosis of the cause of your daughter's condition is very important. Hopefully, an accurate diagnosis will lead to treatment targeted at the cause.

Symptomatic treatments can help; yet, often are not specifically targeted at the cause. These types of treatments are usually determined by what gives her some relief and not too many side-effects. Symptomatic treatments can be allopathic, integrative, physical therapy, etc. Any symptomatic treatment which gives her relief, without too many side-effects, is important. It's critical to also find out the cause of her suffering, as doing so may lead to more specific treatments which may help her more than simply treating symptoms.

Is there a Neuromuscular Clinic within the Neurology Department nearby?
Is there a Children's Hospital nearby?
Is there a teaching hospital nearby?

I hope you will start an ongoing thread in the forums below. I have questions and am reasonably sure other members may have questions/information to share with you. I think we can help in supporting you in finding more assistance for your daughter.


DejaVu
Thank you so much for the advice. Which forum would be best to start a thread in for her?
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Old 10-31-2015, 10:53 AM #6
thowell thowell is offline
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I started a thread in the children's forum.
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DejaVu (10-31-2015)
Old 10-31-2015, 11:59 AM #7
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Thumbs up Good Idea!

I think that's a great place to start.

I know I don't always read introductions on the days I do sign in.
I think you may get more interaction in the children's health forum.

I will take a look there.

Warmly,
DejaVu
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Old 11-01-2015, 09:14 PM #8
Minxlpn Minxlpn is offline
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Default Poor baby girl

Quote:
Originally Posted by thowell View Post
New to the forum and not sure where to start so thought I would introduce myself first. My 12 year old daughter is suffering with very intense neck pain. She also has constant nausea, severe headaches, constant fatigue, sharp sudden pains in different areas.

A little of her story in 2009 when she was 6 she started complaining of neck pain. These seemed to be spasms that would come and go. No specific injury that seemed to cause these. They started out only being a few times a year but quickly increased until in 2011 she had these at least 3-4 times a month. They would last 24-48 hours and then seemed to taper off. we saw, Orthopedics, Neurology, Physical Therapy, had MRI, x-rays and blood work and nothing showed up. Then in 2013 it stopped!! No explanation but it seemed to go away.

Unfortunately it did not last. Again it started slowly with specific episodes about 6 months ago. Mostly complaining of neck pain and headaches, dr gave her flexeril. Didnt seem to work other than making her go to sleep. Episodes typically 48 hours long. Then beginning of September she woke in middle of the night in horrible pain and it has not let up. She can barely get out of bed most days because pain is so bad. She is getting very depressed because she has no quality of life. They have prescribed Gabapentin but it doesn't seem to help.

She is once again scheduled for MRI and blood work and has been referred to Orthopedics. I am at my wits end and not sure what to do. Some doctors have even hinted they think she is faking it but I know that is not the case. Any advice, ideas or suggestions are welcomes.
It sounds like she may have arthritis in her neck, which is setting off migraines. Neurology should have picked up on this! I am not sure where you live but don't give up! If you are close to Dartmouth Hitchcock Medical Center bring her there or Boston's Childrens hospital. They haven't found it yet but lets pray they do soon.

The flexeril and gabapentin is for muscular pain and nerve pain....but I think its more structural/skeletal hence why she is going to orthopedics. But I would take her where they specialize in children only!

Good luck and I hope they find out what is wrong! God bless you and your daughter!
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