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.

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