My DD's symptoms as of the last few weeks are pretty steady, on-going and horrible...
80% of her day, she is experiencing pains- in the lower back, neck, shoulders, legs, arms, hips. We've been doing a mix of Tylenol and Oxycodone. I have really been trying to limit the use of oxy, but there are days where she desperately needs SOMETHING that works. We will talk to the Dr. about chiro. the peds. rhuemetology dpt. has a massage/chiro. team that works with kids. We heard about it through a nurse there, so it's our next step after her appointments in Nov.
I'm soo glad you have access to a pediatric chiro though your Dr. I really think with some time this may help with the uneasy feeling, cramping etc and speaks volumes on how flexible the practice is which is key in finding what helps your DD. Yea mom for finding such great care it is a hard thing to do! My Chiro uses a pro adjuster machine that measures progress as it taps me into place as well as several hands on techniques. The pro adjuster was easier for my fibro to handle at first but its loud. There other mechanical forms out their too. He also introduced me to biofreeze which is similar to bengay but natural and worked better for me. you can buy it on amazon
The oxy helps with the pain, but she is experiencing what she calls "weird, uncomfortable, tightness" in her chest, in her fingers, knees, arms and legs. It gives her a restless feeling and she is very uncomfortable with it. It's actually what is preventing her from getting a good nights sleep!
I am fairly certain I know what this is. When I first got sick I constantly had episodes where I couldn't breath (they ? asthma and allergies), episodes where my arm/face when numb(? stroke), leg pain (?restless leg) and chest pain (? heart issues). When I got pregnant my FMS when into remission each time and returned about 6months post. Slowly I would begin to have muscle spasms and as they progressed I noticed that you could see/feel my chest muscles quiver and as I got worse that stopped because muscles were so tight but once they got locked up I got episodes of numbness and incredible since that something is wrong. It triggered a flight or flight response by my body that made it feel like the pain/ tightness/ shortness of breath could be fatal. I'm not sure a 9 year old could ever express that in any word by anxiety but she may not be anxious at all but feeling the adrenalin that comes from the bodies fight mechanism. Now depending on what anti anxiety med she is on it may or may not help this. I tried many and the only one that worked was Ativan which can be used as a muscle relaxer too. I didn't now it at the time but the relaxer part was what helped because I never did feel anxious. What has helped me is magnesium as a muscle relaxer, ginger root as a pain reliever (my understanding is that Celebrex came about from the study of ginger root) it works good on stomach issue too, vitamin d for all of the above. Most importantly is relaxing into the feeling, knowing it is not a reason to panic and trying to ignore it so you lower that fight or flight adrenalin rush. Ask her if she has ever felt so tired or in so much pain that she didn't want to move but her mind wanted to run away? If so she may get those adrenalin rushes that anyone would feel if they suddenly couldn't breath, had pressure on your chest was held against their will. ect It feels like anxiety but anxiety is when you emotionally react for no good reason. If you feel that way because your body is revolting that's reasonable. So once she know that she needs to work on deep breathing through an episode, visualization of something happy and the only meditation I found that worked is sound meditation that uses long low sounds with a voice guiding me through. The kids meditation I posted earlier may be better for your DD
Yes, she has been on probiotics for over a year. Seems to help a little, but not lately. We don't know what is causing her tummy troubles this month. They are getting tests scheduled for Nov. sometime. She will probably have to drink that horrible chalk-y tasting crap again (she would rather do anything else BUT that ever again!) and have pictures done of her digestion. She isn't constipated. That's the first thing they always check with her, since she's had problems with it in the past. The Dr.s have said to use absolutely no ibuprophen products (they can add to stomach upset), but they don't help her with pain anyways. She's been using Miralax for a while now. If we stop that, she will be constipated like crazy again.
Ok this is the first thing I tried an alternative treatment for and it worked. I had ben on DBL doses of Zantac for severe stomach pain/acid reflux that landed me in er being checked for appendicitis. I found some articles on how garlic was a natural antibiotic and could kill H pylori bacteria in the gut. I figured what did I have to lose. I started taking garlic tablets w parsley (for odor) and in 3 months no more heartburn! That's when I started flax oil for energy, vitamin b sublingual for energy etc. I haven't had heart burn in 15yrs. Peppermint tea can be soothing for stomach upset but not heartburn
She complains of chest 'pain' or tightness a lot. They started her on prevacid- because they think it's acid reflux. (also could be why the stomach pain is there, we'll know more soon). We've tried a few 'natural' acid reflux prevention methods with zero luck so far.
I really think she may be having muscle spasm and acid reflux. If a heating pad helps probably more muscle. You can get Oversized body pillow sized heating pads a Walmart and Amazon. Also taking baths or showers both at bedtime and upon waking to get her moving can help. It is the only way I survive vacations but I realize its not very practical on a day to day basis with a child. The steam will make her lungs feel better, wake he up and relax her.
She goes for days with out feeling hungry...forcing herself to eat something.
This is a tough one. I too can barely eat but I still have gained a ton of weight. I did have a friend who lost weight like your DD. Will she drink a milk shake? If so you can make the shake with carnation instant breakfast mix. It will add vitamins/minerals and calories to an already calorie laden drink. I must have protein several times a day or I get a carb high and crash. That's something you may want to look at. Her weight is a complete roller coaster of ups and downs. She never gains much, just enough to get her over the 'underweight' category line when she's feeling well. She's lost 4 lbs. this last month.
Her migraines are about the only thing that aren't running wild this month. She's had one bad one that lasted 2 days. For the most part, they are under control. She takes a daily medication that the ped.s neuro Dr. prescribed. It is working well, so we hate to mess with that. She was taking 3 of those pills a day. Since we started homeschooling her two years ago, she's down to 2. Some sort of progress I guess.
Good! don't mess with what works. You may want to pay close attention to her numbness or any eyesight issues. I have complicated migraines where I lose my vison, rarely speech issues and have facial/arm numbness that I get instead of a headache when I have a migraine. I use ice pack or Excedrin and I actually can lose the symptom but gain a headache WEIRD
Anxiety, Anxiety, Anxiety!!!!
As a former child therapist I can tell you this may not be anxiety but what I described before. The treatment is the same. Learn to ignore the symptoms you no will not hurt you, learn to relax, and take things as they come. The harder you fight the symptoms in your mind the stronger they grow. I tell moms its like childbirth the harder you fight the pain the worse it is. This is very hard to explain to a child and it took me years to really master it. You will both have to be patient. Use music to get her moving and distracted. Maybe something like just dance for xbox/wii where she can get up and dance to a 3 min song and rest if she needs to. music relieves pain and moving is really important for anxiety and pain. If she feels they way I did she is clingy because it feels like he body is failing..it is a very scary feeling the key is to get her mind to focus on she has felt this way before and is fine so she needs to ignore as much as she can until you can find a solution. Does she have a diary? If so have her write about what went well each day so she can see it isn't all bad. She's on something for it right now, but it's not working. I hate to increase the dose, but we need to do SOMETHING. She's nervous, sad, upset, connected to me at the hip. I know it has a lot to do with her not feeling well too, but it's been bad lately.
There are days she won't even consider leaving the house, there are days where we get her out of the house and all she wants to do is go back home.
What I did with my anxious kids was tell them they had to go out with their mom x min a day the each week increase that. So if a kid was in scouts I would say you have to go and stay 15 min and then if you get sick we can go home.. I did this with myself too. I would go for a drive w DH and see what I could do. Most times once she is out she will feel better. She has to know she must go and that she has and out if she needs it. The key here is consistency. You as mom must insist on it every day you agree to (5 day a week or whatever you think works). You must not give in or it will take longer to move forward. Expect it WILL get worse before it gets better. Kids learn if the complain enough they get what they want especially kids with real medical problems. It takes about 6 weeks to change a behavior (improve anxiety) and the first 3-4 weeks of being consistent are hard! It is really important that she learns she will be ok if she leaves the house and that she has to do it even if she doesn't want to. It is very easy to become homebound with this kind of pain she needs to know she can handle it. So I would set a reasonable goal for you both, really stick to it and make it longer over time. Use Disney as you incentive. You are Practicing for Disney!
We are nervous for her when we go on vacation in Jan...our big Disney World trip.
Most important thing here is let her help plan. If she is invested it will go better. USE RIDEMAX!!! It helped me walk 5 min, stand 5 min and ride 5min. The pacing made my life so much better and we rarely waited in line. A big plus with kids is it eliminated arguing about what to do next. we all knew the computer had our ride preferences and told us where to go so we didn't wait in line. IT WORKED WONDERFUL. Don't tell her but it is not unusal to crash after a trip. You need to be prepared for a flare upon returning home. If you know that going in you wont be caught off guard when you get home. She's very excited and all, but also very worried. She's worried that she will still feel like this when we go. She's worried that she'll be in pain when we are there, worried about eating, worried about everything.
Hopefully, we'll figure some things out in her appointments this month.
to you on this day especially... Sorry to hear how rough it has been.. As easy as it is for me to say it, try not to feel guilty... You are doing as best as you can do... 
.. I then see the Ortho Surgeon Thursday for my torn rotator cuff, and I believe the other arm has gone as well. Same Symptoms..
I need to get back into shape! My joints aren't appreciateing the extra weight I have but on 
.
and then fixing the tears... He could hear the bone on bone, so he is 95% sure, and the MRI will confirm or not confirm I guess.
I'm not going to be able to catch up with all your questions because I cant remember them all but I go almost exclusively wholistic as medicine has failed me the past 20yrs. I was diagnosed at 27 with fibromyalgia, cfids, chronic toxoplasmosis and complicated now called complex migraines.
I have found ginger has been helpful for pain. You can either find ways to eat it like ginger beer (didn't seaspray mention that?) or take capsuls, garlic tabs helped with stomach issues, flax oil for fatigue and pain. You have to take thm for a few months before you really know if they work. But as with meds kids can be different and since your Dr doesn't want to do meds sounds like you can ask if those would be good for your DD without being laughed at. When I started flax Drs thought I was crazy. Now how many Drs tout the benefits of flax?...
When I worked in a Childrens Pysch Hospital we used a lot of visualization at night. I found this really helped me when I got sick. nature sounds where I could "put myself" in a favorite place like camping or the shore can be relaxing. I also imagined that the pain drained out of my hands and feet into the ground away from me. This has become a constant thought running in the back of my mind. You may want to check out Patti Peels mediation sleep games for kids 
) Just as I was feeling better our oldest cat died. So it has been a hard few months for the kids. First terrified of what was happening to me then losing their precious kitty who each night went room to room helping each one go to sleep. 
I still cry over the animals I have lost. How old was the kitty?
