It was advised to me to start a new thread specifically noting the process that we are going through. Let me start with a little background info.

In 2009 my daughter, who was 6 at the time, started complaining of neck pain. We were told she was having a neck spasm but there seemed to be no cause. As the months went by the episodes became more frequent. Finally, in 2011, her doctor began to take it seriously and started a series of referrals. She underwent, x-rays, catscan, MRI, and blood work. She was seen by, Ortho, Neurology, and Physical Therapy. Noone seemed to have any idea what was going on. The only thing that was ever identified is that she had a lack of curvature in her cervical spine due to muscle spasms.

In 2013 the spasms disappeared. We were overjoyed and for about 15 months or so Dd had basically no attacks. She was able to learn to ride a bike, swim and actually play like a healthy girl. She would still have the occasional headache, maybe a bit more than most children, but nothing compared to what she had been suffering with. For this we were very glad.

It was short lived and the first part of September it started again. She woke me up at 2:30 in the morning in massive pain. She was complaining of major neck pain along with a severe headache. I gave her 5mg Flexeril and eventually she was able to fall back to sleep. When she woke up the next morning the pain was still there. And so starts our journey all over again.

She has a constant muscle spasm on her right side of her neck which runs from the top of the shoulder to under the base of the skull. Her right shoulder is obviously higher than the left. Her eyesight has decreased, she was tested at around 20/60 and is scheduled with an Opthamologist. She has constant nausea, flushed cheeks, and sharp twinges of pain in jaw, ears, leg, and head. She has just had bloodwork and going for MRI today. She is going back to Ortho first per her Pediatrician. They have her on 600mg Gabapentin which doesnt seem to really help.

So this is our journey. It is debilitating pain for her and our family is struggling to deal with everything. The frustration from the lack of concern from the physicians is not helping. I will keep things updated here for anyone interested and also for my own sanity. I welcome any advice, ideas, or suggestions. Thanks for reading.

Hi Thowell,

I am glad you have posted information here. I think you will experience more interaction in this forum. I know I don't always look in the introductions forum when I do sign in. I am more apt to see thread titles from various forums. I hope you will gain some helpful feedback and lots of support here.

The activity level on the site changes daily. Some days are more quiet. Often, responses come in over a few days to a week. Some very insightful and supportive people will likely read your post and will likely respond.

Thanks for the information you have posted.

My response to you in the intro. forum:


" 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. "

As a re-read, I am glad your daughter is also obtaining a comprehensive orthopedics consult.

Did your daughter experience any injury to her head (as in bumping her head) just before this had all started?

Has your daughter had EMG and/or NCS testing in a neurophysiology lab?

These two tests are briefly described here: http://www.hopkinsmedicine.org/healt...emg_92,p07656/

Neuromuscular disorders (dystrophic and non-dystrophic) and movement disorders may initially show up intermittently.

(I know this because it has taken many, many years for neurologists to pick up on mine. I'd had many years of rather severe exacerbations which would come and go. By the time a neurologist could see me, often months later, the exacerbation had quieted down. I had a physical therapist working with me and she was stunned with the intensity and frequency of spasms. When she could get them to release, the release was for a very brief period -- As in a couple of hours, at best. My neurologists had tunnel vision and could only see the prior Neuro diagnoses they had made. They had finally started listening and looking in these other specialized areas of Neurology once they saw me in an intractable state of spasticity and in a "Neuromuscular Crisis" in the E.R. This had happened only because I had refused to leave the ER without a Neurology consult. The PA was going to discharge me because my electrolytes were normal. I could not use/control my hands, could not use my feet. I could not walk or even feed myself, shift my pillows, etc. The Neurologist walked in and knew immediately, due to the signs he could see as he had entered the room, during this specific exacerbation. This then led to immediate conference calling between specialists in Neurology and also led to rapidly scheduling testing. In the meantime, the Neurologists were better able to help me with my comfort level. Persistence is key.)

It's very important to have a doctor examine your daughter during an exacerbation, if possible. In some settings, we can ask: "How can my daughter be seen as quickly as possible when symptoms/signs are most exacerbated?" Some specialists have a helpful answer for this question. Some do not.

In cases where doctors seem unsure of what's going on, it's important to keep some form of a diary of symptoms and severity of symptoms. Trials of approaches to quiet the symptoms, to make your daughter more comfortable, may also be noted. Over time, when many different approaches have been tried, it can be difficult to recall what was tried and whether or not it was helpful. This can also be important information for doctors to consider in helping them to reach a correct diagnosis. Some people make some daily notations, some make weekly notations. I take these diaries with me or read through and make sure I have a comprehensive outline of all that has transpired since my last visit with any specific specialist. I also look for any "patterns."

I don't want to overwhelm you with too much information or too many questions at once.

We have some very insightful, deeply compassionate members here. Many are awesome parents, as well.

I do want to acknowledge your efforts to take good care of your daughter, your efforts to help her, to advocate for her. I know we all tend to think it's "just natural" and any parent would do so; however, I have seen many cases where parents do not actively advocate for their children, do not seek information and support, etc. Thus, I have deep and sincere admiration for parents like you.

I hope you and your family are enjoying the weekend.

Joyful Blessings,



DejaVu

Did they check the C spine MRIs X Rays very closely to verify that there are no extra cervical ribs?
Sometimes they are missed, or as children grow , so do the extra c ribs and they begin to cause more problems..

If it has been awhile since the imaging, a re check or at least fresh x rays might be a good thing..

c rib images-
https://www.google.com/search?q=cerv...IVVP5jCh3FgAi2

Our Thoracic outlet syndrome (TOS) forum has more related info or use search tool for past posts.
http://neurotalk.psychcentral.com/forum24.html

Expert PT or expert chiro eval/assessment might be helpful .
Often MDs will not even touch or palpate anymore for issues... they leave that to the PT persons..
Any PT for the neck at all yet?

Just want to bump this info up- and add links-
if nothing is showing on MRIs or other testing - And TOS had not been ruled in or out by any drs or PTs ( only very knowledgeable DRs /PTs know enough about TOS to "see" it many have bias and dismiss automatically)

useful sticky threads - TOS - PT/DRs - Therapy -
http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread135.html
http://neurotalk.psychcentral.com/thread125577.html

I actually had the best recovery with a very good gentle chiropractor-
he used ultrasound, IF stim, Low level laser, massage, gentle adjusting, trigger point work....

None of drs have rx'd Pain reliving PT??
* Not weights or thera bands!*
mainly the modalities I mentioned above - to release the muscles so they can soften..& loosen.

Or has RSD/CRPS been looked into at all?
http://neurotalk.psychcentral.com/forum21.html

She does have referral to see PT on the 15th of this month. It just takes forever to get into see them. The geneticists we saw (on our own) did list CRPS as one of the main possibilities along with Connective Tissue Disorder. However her pediatrician dismissed this idea.

Her insurance is a HMO so we cant do anything without her PCP and right now she is convinced this is all in DD's head. She will not order any further testing and has referred her to Pain Management and PT. So I hope and pray one of the docs we are referred to will see something different and be able to convince her PCP to move forward in further testing. Thanks for the info and links looking them over now.

Do you have to stay with that PCP??
Can you search around for another that is more open to helping?

Have they specifically checked for extra cervical ribs? even small or partial can cause trouble.
Sometimes they are missed or not actually checked for by drs or techs..or imaging misses them..

[Her right shoulder is obviously higher than the left. Her eyesight has decreased, she was tested at around 20/60 and is scheduled with an Opthamologist. She has constant nausea, flushed cheeks, and sharp twinges of pain in jaw, ears, leg, and head.]

perhaps upper cervical chiropractic might help- sometimes during birth a baby can sustain a slight neck/shoulder injury to the area-
http://orthoinfo.aaos.org/topic.cfm?topic=a00077
www.upcspine.com
SIGN / SYMPTOM CHECKLIST-
http://www.upcspine.com/self.htm
If possible you can always go on your own for an eval of her C1 C2.
Many will give cash discount as billing ins is an added cost & time for the office.

Hi Thowell,

It sounds like you are desperately trying to get to the "root" cause of her suffering rather than seeking drugs to just mask her symptoms. If so, then one of the reasons you may feel frustrated by the attitude of the doctors that she has seen is because their education in allopathic medicine has taught them to primarily treat the "symptoms" with either drugs or surgery. Even if they were to diagnose her with a physical or emotional condition, they would most likely not look any further for the "root" cause of the problem because that is not in their realm of healthcare. My intention is not to degrade or demean allopathic medicine as it does have a great capacity for diagnostic testing, especially when it is used appropriately and the reports are compiled competently. But when someone is seeking the "root" cause of their health issue, Allopathy falls very short in that area.

Integrative medicine also combines allopathic education with all forms of diagnostic technology and often prescribes more elaborate serum testing. Their focus is to acknowledge the symptoms and incorporate whole body medicine to help find the "root" cause of the problem. They carefully and knowledgeably peel the onion, so to speak, as they recognize that symptoms are generally an indication of a problem that is caused by a bacteria, inflammation, a malfunction, a deficiency or other .... someplace else in the body. Some of the Integrative testing may seem a bit unusual if you are new to this type of healthcare but it is all relevant in trying to determine the "root" cause of the problem.

I just wanted to give you a bit of insight into Integrative care in case you were curious about it as I know caroline had made mention of it in her reply to you... on your original thread I think.

A few other things that come to mind and perhaps they have already been looked into....

At 6 years old when her symptoms first started... had she endured any injury or personal trauma, or had she witnessed anything rather traumatic near that time?

By any chance did she undergo any dental restorations or oral surgery then or since them? Did she wear any type of an orthodontic retainer? Does she have an over or under bite or does she wear braces on her teeth? Has she seen a dentist to check her Temporomandibular Joint? Does she grind or clench her teeth when she sleeps or when she is tired, anxious or nervous?

I hope whatever path you choose for her that the "root" cause will become known and she will get the help she needs to get better. Remember you are not alone in this journey... lots of moms, dads and caring people are here to hold you up along the way.

Hope you can check in soon and give us an update.
Bryanna

This is probably far fetched but thought I'd make this comment.

A few years ago my grandson who is now 15 complained about a lot of pain. He's a very active boy, tennis player, vollyball and just always in motion. The pediatrician said it's probably growing pains and more exaserbated by his constant motion. Just a thought.

http://www.mayoclinic.org/diseases-c...n/CON-20029782

[QUOTE=caroline2;1180867]This is probably far fetched but thought I'd make this comment.

A few years ago my grandson who is now 15 complained about a lot of pain. He's a very active boy, tennis player, vollyball and just always in motion. The pediatrician said it's probably growing pains and more exaserbated by his constant motion. Just a thought.


It would be great if that was the problem. Unfortunately I dont think we will be that lucky. Especially since this is the second time she has suffered with this. She isn't overly active and doesn't play sports. She had her MRI yesterday so hopefully that will give some answers. I will post results once we get them.

At this point, I worry as much about her mental state as I do her pain. She seems to be getting depressed having to deal with the constant pain. I am not sure if the Gabapentin makes the depression worse or not. Thank you for all the suggestions I am checking into each one.

Hi Thowell,

While some doctors refer to gabapentin as a mood stabilizer, it's certainly not an anti-depressant. I have felt very depressed on low doses of gabapentin.
It can be so sedating. I do not like the idea of a 12 year old using these anti-epileptic drugs unless they are very helpful. Yet, that's simply my own opinion.

Sometimes, doctors prescribe drugs in a certain class because the response, or lack of a response, may help them to reach the correct diagnosis.


I had almost touched upon your daughter's emotional state, as this has to be so very difficult for her.

Does gabapentin help her in any way? If so, which symptoms does it help with?
Is there another med which will help in the same way and maybe help more than gabapentin?

Any chance your daughter might see a therapist? Family counseling can be helpful, too. Socially, these are some important years for your daughter. I hope she does not have to "sit out" too much. I hope you can get some helpful answers soon. I know you are, and have been, trying very hard to get answers.

I definitely feel for you both.


DejaVu