Having read a couple of posts about AMPS and pain clinics this past week I...
Can this help with managing fatigue?
This is it in a nut shell...brst thing we ever did for our son. They taught him to push through the pain with AMPS and also how to work through their jia.
Thank you for this info. We have an appt. but I was skeptical and didn't want to spend even more money. This makes sense. I will go ahead with the appt. My kid is 14 and is heading to adulthood. I guess it will be up to him to manage so I need to get him all the help he needs now.
So glad to hear of your success!! My son's neurologist had us sign up for a pain management clinic. We are on the waitlist to be admitted in October.
An important point that the neurologist made to me: The sooner you can help your child with pain management, the better. As a child's neurological pathways grow, you want them to grow in the "right" way -- in a way that does not make them susceptible to feeling excess pain in the future. She said that if our 7 year old gets a good relationship with his pain now, his neurons will grow in a healthy manner, and his body won't be in the habit of over-reacting to arthritis pain.
Also, the neurologist said children who suffer from chronic pain are more susceptible to drug abuse later in life. Kids can become accustomed to medicating physical and emotional pain away, instead of trying more holistic methods first (like breathing, yoga, biofeedback, etc.).
I bought this book and started reading it recently. It is very helpful.
Here is the previous edition of the book. It got great reviews.
Yes!! My daughter was sleeping 18-20 hours a day before she went thru a 2 week inpatient program! She is back to normal now!!
This makes me happy to hear another child making it through the pain!! My daughter is finally pain free after YEARS of pain!
Please as a warning I am going to explain the opposite position and that AMPS has begun to be a catchy phrase that not all children with JIA can go through programs and achieve. If you are not dealing with Poly, Spondy ERA and also not have a child with EDS or HSD you can achieve great success with the AMPS protocol. There are conditions where AMPS is truly secondary in nature and no amount of coping and or physical exertion will actually fix the neural pathways. You are tricking the brain to receive and pay attention to new input.
If you have a child with ERA and EDS especially you can actually injure your child from said programs. There is a let's call it AMPS movement happening in the JIA community when they cannot explain the reason for the widespread diffuse pain. Many times it is truly caused by active Enthesitis Related Arthritis. Or in the case of Ehlers-Danlos it is contradicted to do a full AMPS protocol when instead specialized strengthening and isolation PT should be used. There aren't PT programs truly designed for a child with both JIA and EDS with secondary AMPS.
My youngest son was on a biological that stopped working or providing full benefit. His Rheumy labeled it AMPS and AMPS and more AMPS, when actually he's had active Arthritis this entire time and was forced to stay on a drug that wasn't working. Thankfully a second opinion revealed a fresh look at his case and hopefully we can move on to Remicade and then in home EDS therapy. Children with EDS will always have diffuse pain.
I also don't agree with being an alarmist that children will automatically just seek meds. Most kids hate taking meds so I'm highly doubtful that the information is more conjecture and opinion rather than scientific. I also am not ashamed that Cymbalta is a drug that does help AMPS pain in both children and adults... pain is subjective but unless you have CRPS, Fibro and the type of weird nerve pain that is emitted it's not fully understood. They are also expanding on the true cause of Fibro and new studies are emerging quite frequently.
I do not agree with the typical ableist representation that is thrown on these kids who really do have disabilities. That can be dangerous to their emotional well being too. Not every child with JIA is disabled but many truly are especially if comorbid conditions exist. You can still be disabled and have a fabulous full life within your limitations.
I think the multidisciplinary attempt to help pain is wonderful that is used within some of these newer programs and I am truly happy for those that it helped. It's just not the right fit for everyone though,
My son was just diagnosed with AMPS last week and I'm still trying to wrap my head around all of this. I will admit that I don't know what all of the acronyms used on this page stand for. My son has enthesitis as well as the PsA. At our appointment last week, the doctor said that the enthesitis seemed to be much better (don't remember the exact words she used).
I do know that the best he feels all week is after his hourly PT session. Telling the doctor that was one of the things that helped her to diagnose AMPS. So would this therapy possibly be useful for him?
It really worked well for my son...je is ERA but not PsA. We did not do the inpatient program, but an outpatient one. The program wr sent him to specialized in both AMPS and JIA.
The pain clinic closest to us doesn't just specialize in AMPS, but also works with arthritis and other types of pain as well. I would check the program to see what conditions they work with before following up with them.
My daughter's specific back pain was blamed on AMPS and our family doctor did imaging. She has damage to her spine. A neurosurgeon overruled the Rheumy and diagnosed it as JA related. Even the PT specializing in AMPS said my daughter doesn't present as a kid with AMPS.
How do you go about finding the clinic? Anybody know of one in the Atlanta area?
The pain clinic listing given in Coakley's "When Your Child Hurts" lists GA: Center for Pain Relief at Children's Healthcare of Atlanta. www.choa.org/childrens-hospital-services/pain-reli ef
Staci, what a thoughtful reply. Thanks. Wishing all the best for your family.
We didn't go to a clinic, we found PT in town and explained about our daughter, they had us do land & water Therapy. They really listened and helped us create a plan for when she no longer was in their care. Then we found an OT. This took more than one time. Look around and try multiple options, because they are not the same. We did a full mind and body approach that worked for us, but I think every parent that has found success would admit, each child is different and it is finding the right combination!
Thanks. He has his weekly PT today and I will talk to her. Does your child still have daily pain?
After more than four years of pain, missing so much school and life, my daughter has had a month free of pain! It is huge for us.