Morning Yall,

Sorry this is so long, I wrote this 99% for me!

My brilliant, second degree black belt ,11 yr old son was diagnosed with CRPS 6 weeks ago. Prior to this, my son has migraines and nervous tick disorder, that he stated on medicine, a couple months prior to the CRPS starting.

He started Tae Kwon Do at 4, and at 9 he developed growth plate issue on his heal from Tae Kwon Do. Initially, when this first stated and couple months ago, we thought that the growth plate issue was just a flare up, and took him to the original ortho that diagnosed it. He was very rude to my wife did not look at her, only did x ray and just stated that, like he told us last year, there is nothing that can help this issue. My wife told him it is not just the heal, and the whole foot hurts bad to the touch. he gave my wife prescription for walking boots for both feet. My 17 yr old had to carry him into the Ortho apt, the pain was so bad. We tried that for a few days and he got worse fast wearing that boot, just about every day for the next week, he was in the nurses office because the pain got bad later in the school day.

My wife called back to the ortho office, and told the receptionist that we had to come back because he is a lot worse, she told my wife that maybe he just needs to toughen up, that the pain is not that bad with growth plate issues. Toughen up! My son as been doing martial arts for 7 years 3-4 days a week, he has been kicking ***, and getting his *** kicked for a long time!

Made an appointment the next Friday, with a Ortho foot specialist, he said that he had not seen anyone with that much pain from growth plate, sent us for MRI, got it same day. Went back on Tuesday, he reviewed the MRI, saw tendonitis, growth plate and fluid. Said he does not understand all the pain, said he has done all he can do, said we need to get him to a Peds Ortho foot specialist at Joe Demagio children's, because they might of seen something like this before. This was reasonable, if you don't understand what's going on, send him to a specialist.


We Were able to get him n the next week, The Ortho Peds foot specialist, told us my amazing child, has CRPS and we need to see a Peds Pain Management Dr at Joe Dimagio. That Friday we were able to get him into See the Pain Dr. and the drugs started... Every week she has had to increase heis neuro drugs and increased the Methadone last week, and added another neuro drug. we have been seeing her for about a month.

Its a vicious cycle, he is in pain, the nervous tick in his feet act up, and put him into more pain, so he is in pain all the time. Last week they increased his tick medicine from 2 pills a day to 3. Pain Dr. has never treated anyone with CRPS and Ticks.

He has been bed ridden for about the last month, in a wheel chair, and I have to carry him to the rest room. He has not been to school in 5 weeks, last thing I am worried about is school, he is an A student. Both of his feet, are a dark red color all the time. Cant have the Ac blow on it, walk by him too fast, cant touch the bed or couch.

Yesterday was the first day, he had a day without hours of screaming pain, I hope the new additional neuro drug he got last week, has kicked in!!!!!!!!!!!!!!!

As I am sure, just like every other parent, I have been doing hours and hours of research. I found that Ketamine is suppose to help, I asked the pain dr. last Friday about it, she said that my little man, would do great on it, but she cant use it at the children's hospital. I inquired who is South Florida did, she was not aware of anyone.

Doing research I found 2 Dr in the Tampa area that do the Ketamine treatment.

Unfortunately, this was Friday, but the old man spent all weekend reviewing all the pain mgt dr. in south Florida web sites, to see which practices had anyone with ANY type of peds training.

I made my list, and started calling @ 9 am to see who did ketamine infusion! My 3rd call, I asked the receptionist if they would see Peds? and if they did, do any of the docs do Ketamine. She put me on hold for a couple of minutes and said the Dr has done ketamine and is very familiar with it, but wont tell me over the phone if he does Ketamine, So I inquired, so what you are telling me is, he has done it, is that correct, she said yes, I said give me your next available apt!!!!!!

The soonest apt that had was April 13, I asked can I be put on a cancelation list. She said they don't have a list and to call back. I called back Tuesday, nothing, Wednesday YES, Monday 3-21!!!!! Score

We just had our initial consultation with a Pain Psych in Boca on Tuesday, my son and wife like him a lot and he is treating 3 other kids with CRPS. My wife got lost finding the office, called the receptionist, she was close and that the dr will be there in 2 minutes and he will help my wife get my son out of the car, and he did. Bonus points.

I have high hopes with this pain center on Monday , hopefully they can do the Ketamine.

Everyone keeps telling me kids have a great outcome with physical therapy, I cant even get close to his feet.

I have tried pool therapy, my pool is not heated, but my 11 yr old is scuba certified, and I just put on his wetsuit and booties, first time was successful, stood in the pool for 10 minutes and swam around a little bit. Second time, he was in pain prior to me getting home, I told him that we HAD to get in the pool, for therapy. I tried to get his wetsuit on and booties, he was screaming so bad, I thought the police were going to knock on my door. WORST DAD EVER!!!

We have been successful with my neighbors heated pool, 2 times swimming, standing, using his feet to push off the wall of the pool, until he is finished. By the time I carry him home, he is screaming for the next 2 - 3 hours. Again, WORST DAD EVER!

He had a great day yesterday and grandpa says, he is having a great day today. I hope to try, and get him in the neighbors pool again today, hopefully the old man will go from zero to hero this time. I am only going to let him do pool therapy for max 10 minutes.

The life saving thing has been Mindcraft, it has helped him keep his mind off the pain, and his other nerd friends face time him and they play together.

My little guy use to read 600-800 pages a week, he has not been able to read in a few weeks because it hurts his head.


I realize how fortunate we are that once we went to the initial horrible Ortho appointment, we found all the right Drs and eventually the Peds Pain Dr at Joe Demagio, and that there are resources here in South Florida, that a lot of people don't have.

My wife and I have been kicking open doors, to get to all the right doctors and not taking no for an answer, calling back to get sooner appointments, than originally offered to us, with every dr.

My wife was in a hated discussion yesterday, with the Nurse Practitioner at the Peds Neuro office, my wife wants to get him in for more testing. My wife keeps saying, this is neurologic, do your neuro job!



My son is amazing, In the gifted program, polite as a good Southern boy should be, athletic, and I am extremely proud that I have such an amazing son. Our family will get through this eventually.

Hello Sully and Welcome,

I am so very sorry that you have had to come join us. CRPS is hard enough on oneself, I know it must be even harder as the parent. You will find many helpful and supportive people here who understand the frustration and fear that go with this diagnosis. Your family is not alone.

Hold on to hope, as I often relay, 80% of people improve over time according to Cleveland Clinic's Dr. Michael Stanton Hicks. Recovery is often much slower than anyone wants it to be but improvement does come. I am so glad that you have been able to get care arranged quickly for your son. That will make a difference. Much of the problem with CRPS relates to nervous system plasticity, so working on it sooner rather than later is beneficial. His youth and plastic brain and nervous system work in his favor. Keeping the pain flares down is vital and helps prevent him from getting stuck in a "pain ON" position. Do what you can for PT and aquatherapy without overdoing. Ten minutes is a great start. Pushing too hard is very tempting as many of us know and it can tend to backfire. When that happens, pull back a little, rest, then train a little more gently. Just like sports. The discipline of tae kwon do will be a big help here.

The pain psych is great. It is wonderful you are getting that started now. I worked with a pain therapist and it was a huge help in coping with pain and dealing with sadness and anxiety surrounding it.

Keep on those docs. You are doing all the right things. Workup is essential to rule out underlying contributors. I can personally attest to the benefits of ketamine and the studies on it with peds look good. I hope that all gets worked out. If you have any concerns about medications or interactions, especially with the meds for tics, consider a pharmacy consult. Pharmacists are underutilized in this regard and know the meds better than docs sometimes.

When you have time the following video has a wealth of info from a non-doomsday doctor and has sections on pediatric cases and therapy. Dr. Pradeep Chopra "CRPS Diagnosis and Management"
https://www.youtube.com/watch?v=s3LKhOZ8mAM

Please come let us know how things are going. I hope that your son finds relief and healing soon!

You sound like you are doing all the right things there, so you are a long way from worst dad ever. You are sound like a great dad. Looking after your son's own interest. You are doing plenty of research, demanding the best care and getting it, and doing everything you can to help.

Pil Sung! to you and your son.

Hi Sully - my daughter was diagnosed with CRPS in her right foot in October of 2015. She is very bright, athletic, and your story sounds similar. She is graduating from seven weeks of an intense pediatric rehab clinic design for kids with CRPS and other chronic pain. They focus on reducing and eliminating medication, teaching active coping for pain management and returning kids to function and school, with the idea that with use, the brain of especially kids, can reprogram and stop sending those pain signals eventually. She is in this program with kids from all over the country, and even the world. If you send me a PM, I'm happy to give you more details on there wheres and hows. She started this program in a wheelchair, and she's walking now without any crutches or canes. I would encourage you to check out these programs prior to ketamine.

Sully,

My PM doc mentioned that children's programs are very intense which is why they are so successful.

Please avoid anything cold. It makes CRPS worse.

I can attest to the fact that the children's programs are VERY intense. They are 8 hours a day of PT, OT and psychological therapy, and all the staff set high expectations for what the kiddos can achieve and what is expected of them. But, so far for us, successful. They don't aim to make the pain go away during the duration of the program, but to return kids to functionality with the understanding that if you use the affected regions of the body, eventually the brain will rewire itself to stop sending those pain signals. I can't speak to the long term success of these programs yet, but will try and update here as we move forward after leaving.

The other thing I would recommend is, and it seems that you are doing this already Sully, is do as much research as you can. Not so much in the doom and gloom as mentioned above, but into programs and doctors who understand this condition. My daughter's primary care doctor (who is wonderful by the way), had never treated this condition, and the neurologists local to us were not well versed in it either. We self-referred to the program that we are in.

Much of the more recent research done in the Netherlands showed that the very intensive approach to pain management which is a feature of these inpatient programmes for children, is equally effective for adults. They are very much of the opinion that the same kind of tough, rigorous programme is the best way to treat adults with the focus being on restoring function and not 'fixing' pain. Interestingly, having the focus on functional restoration actually ended up reducing peoples' pain levels as a 'by-product'.

My own experience has been along these lines. I never did an intensive PT program but once my focus switched from pain relief to function restoration my LIFE improved dramatically. The return of function and some semblance of a "normal" life made it a bunch easier to cope with this pain.

This is true. According to the Drs in this pediatric program adult brains have much more plasticity than originally thought. So it would make sense that they could benefit from the same type of program as kids.