12 Year old daughter suffering with Chronic Neck pain
 

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.

Thanks for Advocating for Your Sweet Daughter
 

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. " :hug:

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. :rolleyes: 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. :D

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. :hug:

I hope you and your family are enjoying the weekend.:D

Joyful Blessings,

:grouphug:

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?

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.

:hug:
DejaVu

Today is not going good......

Dd woke up this morning in alot of pain and with alot of nausea. Yesterday afternoon seemed to be pretty good, she even felt like learning how to make an apple pie. It was short lived. :(......

She had another MRI and blood work on Saturday not sure when we will get results back. Her next appointment is with Orthopedics on the 12th. Today is proving to be a bad day for her. Lots of prayers today for she and I.

Hi thowell,

I'm sorry to read that your daughter is having another difficult day. I truly hope she improves a bit as the day goes on.

In a previous post, I had mentioned seeking help from an Integrative practitioner. I don't know if that is something you would be interested in or not but here is an informative link from the Institute of Functional Medicine that offers people an opportunity to learn about FM and even helps one to find a practitioner in this field.

https://www.functionalmedicine.org/a..._a_functional/

I hope today gets better .... for the both of you :)

Bryanna

Thank you Bryanna. I will definitely give it a look. I am not above trying anything that would help her.

Update - Results In
 

So I just received a call from nurse at daughters GP office. All blood work tests are normal. MRI shows lack of curvature in neck due to spasms!!! This is the exact same results we received in 2011. No reason as to why she is having constant spasms in her neck.

She is scheduled for Physical Therapy work up on the 5th of December. She has an appointment with Orthopedics next week but I doubt that will be helpful since the MRI shows nothing.

Now I am wondering if she should continue the Gabapentin. She is taking 600mg a day. If we do decide to stop is there a certain way to withdraw her from it?

I am sooooo frustrated!

I hear your frustration. My thinking is why not see a qualified chiropractor, MANY work with children from birth. I would not use the drugs, they have their potential side effects and can cause more issues than one already has.

Hope you will find down the road the root of her pain and work in a more natural manner.

I've never taken gabapentin but I think one has to withdraw slowly. Not sure.

So many chiropractors have gone on to work holistically and that is what I'd be looking for if it were my child.

Thowell,

I know this is frustrating to you and it seems impossible that after 4 years of her suffering that something else is not showing up in her blood work or on the MRI. But in all honesty, her doctors are just repeating what has already been done because that is all that is required of those who strictly practice within the guidelines of what is called medical standard of care. They are not required to go beyond that type of care if they believe they are treating that person within a reasonable and acceptable manner. So a typical journey for a person under this type of care, which is evident of your daughters journey thus far, would be to have her symptoms treated with medication and at some point possibly surgery. Physical therapy may or may not help at this point simply because the root cause of her pain is still unknown.

I'm sorry, I know I sound like a broken record. I feel for your daughter and because of my lengthy career in the healthcare industry, I sincerely encourage you to give serious consideration to seeking help from an Integrative medical professional or a physician who practices Functional Medicine. These are the doctors who will look beyond the routine test results to try an uncover the root cause of her problem.

I wish you and your daughter well. I hope things turn around for the better for her very soon.

Bryanna

I have made a decision to withdraw Dd from Gabapentin. I will decrease it by 100 mg a day until she is off it completely. I have also made an appointment for her with a highly regarded Chiropractor next Friday.

Bryanna, I was able to find a Physician in our local area per the site you linked for me. I have a call into them now to see when we can get in for consult.

Traditional medicine has failed this child for 4 years and she has lost alot of her childhood to this pain. I am willing to go outside the "norm" to find her the solution to her pain. I will keep everyone posted. Thanks for all the support and suggestions so far!!

Neurophysiology
 

The gabapentin taper of decreasing 100 mg per day seems rather fast.

Have you spoken to the prescribing physician about your desire to taper your daughter off of gabapentin? I'd hope s/he would prefer to give you a safe tapering schedule than getting locked into a disagreement with you on this topic. It doesn't hurt to ask for a doctor's input on tapering off the gabapentin.
Ultimately, you can still do things the way you want to do them.;)

It's possible the gabapentin is offering your daughter some relief, albeit not enough relief. It's difficult to know what symptoms she may feel as she is withdrawn off of the med. Additional signs/symptoms may surface as the taper continues. I'd take this withdrawal/decrease more slowly and note any changes she reports/exhibits.

As I read your posts, the cause of your daughter's discomfort seems more neurological than orthopedic.

It's important any possible neuromuscular/movement disorder be investigated. This is done through testing done by a neurophysiologist.
I had linked in information for you in a prior post.

An integrative approach can be taken to treating neuromuscular conditions.
These are often genetic in origin, although not always.
If genetic, epigenetics may potentially be explored, as well.

I like the functional medicine approach and I hope a functional medicine physician can help to sort this out. I still encourage a full work-up in a neurophysiology lab. I hope the neurologist will order these tests for your daughter, sooner rather than later.

I hope a functional medicine doctor can help your daughter with comfort, asap.

You might also get some assistance from reading up on magnesium here. There is a lot of information on magnesium and more. The search engine on this site will lead you to a lot of information.

You and your daughter are in my thoughts and prayers.

:hug:
DejaVu

Thowell,

I just replied to your private message. Please check that when you get a chance. Thanks :)

Hopeful for today!!!
 

Dd12 is seeing Chiropractor today that her new IFM Physician has suggested. Not expecting much to happen on first visit but very hopeful that someone will finally be able to tell us what is causing her pain.

BTW she is back on 600 MG Gabapentin. While it may not be helping her actual pain, it is definitely helping her mentally handle things right now. Once she was down to around 200 MG of it her mood started to change dramatically. This in turn makes the pain even worse. So, for now she is on it. Not happy with this but the Doc will have to help me remove her from this when it is time. I will update after appointment. Keep prayers coming our way!!! Thanks

Well today was a huge disappointment and waste of time. Dr had appointment with Orthopedics. The Dr. Walked in and within 5 minutes and not even examining her, decided they couldn't help. She said if there is headache involved then it is neurology. But neurobiology told us the same thing!!!! Ugh

Positive note dd has her first appointment with IFM physician Wednesday. She also had her first visit with Hollistic Chiropractor last night and he spent more time examing her than any other physician so far. He will have her do a series of test on next visit to try and determine issue.

Off Gabapentin!!
 

Yay!! Today is dds first full day off the Gabapentin. She has actually done really well. Pain is no more or less. She is having hard time sleeping so I may have her take a Melatonin to help her tonight.

Final evaluation at Chiropractor tomorrow. Very interested to see what muscle tests reveal. Will update with any news.

Side rant on the Gabapentin - I am so angry that her PCP put her on this dangerous medication and did not even bother to go over the dangers with me!!! Ugh - just glad to get her free of it finally.

Thowell,

Glad to hear that she is off the Gaba and doing okay.

So what is the latest regarding the Chiropractors examination??

Bryanna

Her visit last week was the first part of his evaluation. Today should be the other half of evaluation. He will have her perform several different test to see how her muscles are working or not working. He seems very thorough but would not tell me what he thought might be wrong until he finished his evaluation. He has also had her track her symptoms and diet.

Wednesday morning is her first appointment with the IFM Physician. I am very hopeful about this!!

Magnesium
 

Great! :D

I find magnesium very useful for pain, spasms, cramping.

Many find Morton's Epsom Lotion helpful. (magnesium sulfate)
I also use 100 % pure magnesium chloride, by Life-Flo.

Life-Flow magnesium chloride products: http://www.life-flo.com/magnesium.html (These products can be found at lower prices with an internet search. This is simply the product line.)

Magnesium will also likely help her to relax and to sleep.
If trying topical magnesium, it may be helpful to massage this into her shoulders, as well as her neck?

In fact, I use a small amount on the back of my neck to help me to sleep at night.

mrsD has a magnesium thread: http://neurotalk.psychcentral.com/thread1138.html

I am thrilled your daughter is off of gabapentin (since it was not helping) and am thrilled you are feeling hopeful!:D

Much Love to you and to your daughter.

DejaVu

Thowell,

This all sounds positive! I am hopeful the DC and the FM doctor will work together to help your daughter become well again. I'm sure there will be more testing with the FM doctor but this is the journey needed to get to the root cause of the problem. I'm sure they will recommend some changes in her diet and lifestyle....which can be a bit daunting in the beginning but so well worth it in the long run!

Feeling excited for you both today :) Keep us posted!
Bryanna

Thowell,

Just checking in to see how your daughter is doing.
When you get a chance, please give us an update.
Fingers crossed you will have good news!!

Bryanna

Have her checked for Chiari Malformation and Syringomyelia ... symptoms sounds very familiar .....

Checking in....
 

Just wanted to check in and record our progress or should I say lack of!!!

Saw Orthopedics which was referred by Pediatrician, what a waste of time!! Dr. literally walked in and without even looking at dd12 decided it wasn't an Orthopedic issue!!! Ugh! We have been going round and round with Pediatrician since her insurance requires everything to go through her.

We are seeing a new Geneticist. The IFM doctor we saw was only able to go forward if we were able to pay around $3500 for testing that her insurance would not cover and she was not willing to work with our Pediatrician. So Dr. Shah, the Geneticist, is willing to send everything through Pediatrician so insurance will cover very expensive testing. So, now back to fighting with Pediatrician. She made a decision over a year ago that she thought this was all in dd12s mind and that nothing was medically wrong with her so getting her to do any testing or referrals is like pulling teeth!!

She has just agreed to write referral to Pain Management so waiting to hear from them now. We go in to see Pediatrician tomorrow afternoon and try to convince her to order genetic testing.

Dd12's symptoms are worse if anything. She has had a few weeks in the last several months where her pain was more of a 4-5 than the normal 10 for her. The last 2 weeks has been really bad. She is very dizzy, light-headed, fatigued, extreme pain in legs, ankles, and wrists. She has dropped 8-9 pounds in last 30 days and barely gets out of bed most days. Her heart rate is high, normally around 135-140 and the headaches and neck-shoulder pain are non stop.

I am getting very worn down and most days bounce from anger to sadness when see cant see me! I just want her to feel better. I just want to know what is causing this and that someone is trying to make her feel better. Instead, we get shuffled from one doctor to the next and get no closer to answers. The few doctors that think they can help require testing that is crazy expensive and we are left to fight with insurance!!!!!!!!!!!!!!!!!!!! UGH!!!!

Ok sorry for the rant just needed to get it off my chest.

We got an urgent referral to our local pediatric pain management dept (there are not a lot of those around the country). That allowed us to make an initial eval appt (really three appts together) 3 months later!! The urgent part freed up an appt, orinially they were booked a few days past that point and the rest of the calendar hadn't become available. It's a joy of dealing with insurance that does not end. Now, another three months later, we only have half a plan as insurance has denied some requests that pain clinic is not great at helping along, but they've been told me I should know more about getting referrals they don't share with me approved. Their approach is generally two pronged - exercise and therapy with some drugs and alternatives to drugs but countless lectures on not giving opioids which I keep telling them are unlikely to work so we don't want them. The psych is not really open to trying the one thing mentioned for people with my daughter's situation and seems to think parents are part of the problem (he does seem to know something more than others, just think he's less useful if he's only will get to fallback on his known methods - one of which is adverse for our child so don't think he gets the underlying condition but he says he does, Grrr). So urgent referral.. six months later has resulted in very little. Hope you have a better experience. It should help that your child is older than mine, mine is at the young end for therapy they think might help.

Hi Thowell, this is Akash from India - I suffer from chronic neck pain and various issues due to an accident. Over the years i have had to do my own reading.
"Dr. literally walked in and without even looking at dd12 decided it wasn't an Orthopedic issue!"
This makes me wary. At the very least he should have examined the shoulder neck girdle in a variety of positions.
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.
My question is how good were the PTs. Were you happy with them?

Chronic neck pain can be due to a variety of reasons. The complex ones are due to stuff like Chiari and disc herniations or disc bulges. These require MRIs- have they been ruled out?

If its one sided and spasms - is it on your daughters dominant arm side? In either case, check her shoulders. If they are flat or the clavicle slopes up, upper traps are strong, and perhaps overactive. If they slope down, the clavicles, that is, chances are her Upper Traps are weak.

You see the upper traps (neck extensors) pull on the neck and to compensate, the neck flexors (SCM, scalenes) go overactive causing nerve compression etc. A common cause of Thoracic Outlet Syndrome. In short, please have her PT check if she has depressed shoulders, if its weak upper traps a very simple answer could be strengthening the Upper Traps so they do their job and no longer pull on the sensitive neck in a stretched position. On the other hand, if her shoulder is higher than normal, its the reverse, you need to strengthen the lower traps. Again, in the US, your chiro or any PT may be able to help you with this. Since her issues started without any specific trauma, that is (to my amateur mind) a positive thing and sometimes, simple things can make a bunch of difference. Another thing is whatever action she does with the painful hand, have it supported (say an armrest on a chair, the muscles dont pull on the neck).

Next, when she sits or stands, have her head back on her shoulders. Forward head posture and using the arm worsens things.
When I got my neck injury, the entire kinetic chain starts freaking out. Pain in back, calves, feet etc all piles on.
Dizziness, etc - if the more complex issues are ruled out, can often be due to spasming neck muscles pulling on the spine and irritating the structures.

Best of luck and let us know how it goes.

>>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.

Can you pinpoint the exact area? http://www.curecandida.website/wp-co...es-diagram.jpg
One answer could be to use Botulin toxin (under ultrasound) if the spasms don't stop. Perhaps worth asking the Dr.

Thank you I will check on this. Doc has referred her to a PT that specializes in neck pain. She is also set to see Pain management with a doc that also specializes in neck and back pain in children. So fingers crossed that one of these will help.

thowell,

Thanks for checking in with us.

I'm sorry you decided not to follow through with the Functional Medicine physician. If it weren't for the financial burden, do you think that she would have been able to help your daughter?

It is unfortunate that your insurance coverage does not provide affordable out of network benefits. But that's done on purpose to keep people from seeking anything but conventional care leaving us feeling trapped into having doctors we wouldn't normally choose. This way the monies keep feeding the allopathic healthcare system that keeps failing the public.

It breaks my heart that your daughter is suffering so. I can only imagine how distraught you are about all of this too. Hopefully today will be a little better day.

Bryanna

I'd just like to add that please have your PT check each and every one of here neck & posterior shoulder muscles in (relatively) isolated positions. They have protocols for neck muscles, shoulder muscles, rotator cuff etc.

Heres a hypothesis, a long time back when sleeping in a certain awkward position, a muscle is "switched off" - the brain perceives it as being under threat of damage, or its contraction causing damage. Others (which are not designed for the purpose) compensate. The pain goes and comes as long as aggravating activities are kept to a minimum.

Injured folks automatically - without realizing - tend to do that. Over time, the repeated trauma on the overactive muscles or their impingement on additional nerves etc - flares up the pain & the brain, nervous system say enough.

Reason I state all this is because this is the case for many & since you are in the US, trust me, good PTs are many.

You may have to travel to find them but the effort will be worth it, also some answers can be real simple. Reason I am hoping that the answer is straightforward, is because fingers crossed, your daughters "complex results" have come back ok. It could well be something this "dumb" which is causing so much discomfort. Good thing is she can recover fast!

Last couple of days for dd has been really bad. After our trip to her pediatrician last Tuesday I could tell she was really trying. Doc basically told us that there is nothing physically wrong with her and that this is a result from anxiety and depression. She said dd12 was not to lay in bed and that she had to get up and get moving.
All last week and beginning of this week she has gotten herself up everyday by 7 AM. Taking a nice morning walk with her dog, taken a shower, eaten breakfast and completed school work. While I was glad to see her putting in so much effort I could tell her pain level was no different but instead she was pushing through it. Everyday by noon she is exhausted but still she tries to keep going. Wednesday morning this all stopped. She woke up in so much pain she could not even left her head off pillow. She says her entire body feels like it is hurting but most pain in neck, head, wrists and ankles. She cried while I washed her hair for her because it hurt for me to even touch her hair.
I am worried that she is giving up hope. She is starting to think noone will figure out why she is in so much pain. Sometimes I worry about that too.

We have appointment with new doctor at the Pain and Spine Medicine Monday and he specializes in children with chronic pain so I am hoping he will figure out a way to help her. At this time she is on no medication. The basic, Ibuprofen, Tylenol, Flexeril, does nothing for the pain so she doesn't even bother trying. Pediatrician had nothing to prescribe as she thinks none of this is real. So we continue to chug along trying not to lose our minds and comfort DD as best we can. Just wanted to chronicle our journey.

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.

We can request a new PCP but that takes roughly 6-8 weeks. Just leads to more waiting for dd.

One doctor she saw did mention and extra rib and had an MRI done but the imaging department said all was normal.

We are considering changing PCP if we do not get any help from Pain Doc or PT. It just adds more time to her waiting with nothing getting done. I am still working with geneticists who is trying to get us a cash price for testing he wants to do. At this point we are prepared to borrow anything we cant not cover ourselves. The geneticists is also having another radiologist/neurologist look over her MRI to see if there is anything that has been missed.

Are you requesting copies of all tests /reports for your own records?
it's just easier to have them in your own file if you decide to go outside Ins on your own..or for other opinions..
Especially with hard to dx cases... often there can errors in the drs records too.
So those might be good to get and review , and correct any misinformation, something vital may have been glossed over or missed completely.

If PCP report says anxiety based sx, that can be a big road block going forward..when others read that.

Update-
Had appointment with Pain Management doctor and once again a huge waste of time. It was obvious that he was in agreement with Pediatrician before he ever saw DD12. He too says there is nothing physically wrong with her and it is all physiological. So that was no help.

We are moving forward with genetic testing and paying the $945 out of our pocket. Hubby and I have talked alot of this situation and while we are unsure if what the pediatrician is saying is correct or not we just do not think enough things have been ruled out to make that decision. I guess I just feel like MRI and xrays do not seem to be enough to determine that there is no underlying cause for this pain that she has endured since she was 6!!!!

So geneticists is speaking with lab today to coordinate Dd's testing. Meanwhile she has first appointment with PT on Monday so I will update again after that meeting.

Has she been evaluated by a mental health professional to see if they think there is an anxiety issue or not?
I might do that before genetic testing.
That would clarify if it is an issue or not.
If not you could wave the results in the other drs faces...

But I wouldn’t go back to any unhelpful drs again unless I had no other option..