[Caraleigh]

Originally Posted by daylilyfan

The bone scan can show positive for RSD. But... Please be aware that it can be negative and your child could still have RSD. Bone scans are not definitive. I had a negative one early on, and it kept me from getting proper treatment for a long time.

You can look up triple phase bone scans and CRPS RSD studies online for more info on their usefulness in diagnosis.

Excellent for your son that this was diagnosed so soon, if it is indeed RSD, and also that he is young... Young people have a much better chance of remission.

Thankyou for your input! Yes his doctor said it could come up neg. He said that just means we go to phase 2 testing. I'm just hoping to not go through all the testing and find some kind of answer so we can start treating. Trying to keep our heads up. It's hard sometimes though.

[Littlepaw]

Hi Caraleigh,

It is good that the care team is on top of things ordering PT, bone scan and such. Prednisone is not talked about a lot but it is actually a recommended treatment early on, so good to see that too.

I second the pool suggestion. It has helped many of us and kept me in shape and is where I started walking again. It is also fun! The PT may not seem to have done much but sometimes what you are accomplishing is prevention of further loss of muscle and function. The gains can sometimes appear as neutral.

Brain plasticity is in your favor. I would suggest working on tolerance and recognition of stimulus. When there is a lot of pain in the skin this can be challenging but starting with soft cloth, moving to rougher, using nylon brushes, etc on a daily basis can help nerves remember what they are supposed to do.

Pay attention to when things feel better and worse. There is sometimes a push to hurry up and get better by overworking the area. This can lead to flare up and setback. Recovery with CRPS goes slowly and should be undertaken with care and mindfulness. Try to figure out activities that increase pain and back off from those, then start up again slowly. I must've done this a hundred times in order to walk again.

Trust your wisdom and instinct. Doctors and imaging aren't always accurate. It may be something is irritated in the foot that isn't showing on MRI. This does happen. If laying off regular activity seems to help your son, maybe revisit treating him he has like an injury for several weeks, especially if activity was never modified much. Just a thought....

Glad to see you are getting counseling. It is scary going through this and support is great. There are therapists who specialize in pain and use modalities such as hypnosis and EMDR (eye movement desensitization reprocessing) both of which I tried to very helpful effect. These can both be done with children.

Keep fighting and maintain hope. Dr. Stanton-Hicks of Cleveland Clinic says 80% of people improve over time. Odds are in your sons favor.

Sending hugs and healing love,

[RSD ME]

hi cara. i am so sorry your son has rsd. i am sending soft hugs and heartfelt prayers to you both. i have had rsd for almost five years and just try to deal with it one day at a time. having a good pain management dr who is knowledgeable with rsd helps alot too. take care.

[swimtime]

I'm so sorry you're facing this. My 14 year old son was diagnosed a year ago. He was in extreme pain daily, nightly. It takes a toll on the whole family. Research all you can about his diagnosis. The more you know, the better you can advocate for him and identify the best doctors. http://www.ncbi.nlm.nih.gov/pubmed/ Lots of reliable medical research here.

He made huge improvements over the months. Just keep him moving as he can tolerate it. Play therapy is really important given the age. If you find a physical therapist who works exclusively with children, fantastic. Children's hospitals are a good source of pediatric therapists. Also, check with your school. He may very well qualify for school-provided pediatric physical therapy. We have one from the school that comes to the house, and she's fantastic.

Pool therapy is your best place to start if he has too much pain to do land therapy. If you can find a pt place that has a pool, great. If not, find a local public pool with warmer water (YMCA, gym, etc.)

Things are so much better than they were! A child in pain is a wound to a mom's heart. Hang in there. You're his best advocate, cheerleader, and inspiration to keep going. Keep feeding him hope and encouragement, even when you're filled with fear or dread. Nobody fights for their child like a mama bear. Hugs to you!

[megsmountain]

Originally Posted by Caraleigh

Hi everyone, my name is cara. My son's right foot pain (since may) had what brought me here. We've been on a long road of trying to figure out why he's having pain everyday. It started out in May of taking Tylenol 2 or 3 times a day. Then saw his doctor who referred us to a podiatrist who said he just had some blood blisters underneath one of his tendons. Told us to ice his foot three times a day Advil three times a day for two weeks and wear a wrap. After that didn't work he still having pain everyday still have to give him advil at least once or twice a day his doctor referred us to having xrays. Nothing came up abnormal. Then he sent us to Children's Medical to see a sports medicine doctor. She has helped us more than the rest of them have. She diagnosed him with Seevers disease. he's gone through three or four months of physical therapy which really hasn't helped too much. She also told him to do the advil and ice for one week 3 times a day. After not think too much of an improvement with that we did a recheck and then she wanted to send him to an MRI she believed he has an accessory navicular bone. Which the test showed that he did however it's not really causing the problem none of the muscles or tendons are inflamed are having issues with the bone yet. So then now she has diagnosed him with complex regional pain syndrome or rsd. And she has referred us to a neurological doctor within the hospital for pain management. Needless to say with all this going on trying to deal with his father and the family we are currently divorced so it makes things complicated. And dealing with the teachers and the gym teacher and his homework which he's behind in its just been a really rough road. But she's in her late twenties and I know it's different for the age group slightly. I just wanted to come here to have some other mothers and families who have been dealing with the same situations or similar to try to get some help and a piece of mind. And possibly some new outlooks on things that they have gone through.
Above was a older post but this is our current situation. ( Nothing difinitive that they believe caused it. At the very least I remember in may he slightly rolled his ankle in gym but that's it. ) He's been out of school now for a week and 3 days. And I have him signed up for intermittent home instruction. On Friday he goes in for a full body bone scan. To clarify the diagnosis. I'm just hoping they find something. All roads have been a dead end it seems lately. And I have also found a counciling center to try. I'm hoping it will bring comfort for us. They have him on prednisone and neurontin. Which had shown side effects. ..so now just taking prednisone till its finished and then start neurontin back up to see if it might help. I'm besides myself. Has anyone gone though this kind of situation?* How did you cope as a parent. How do you keep your spirits up and your child's. I have my own business and it's sliding away due to the responsibilities of care. (Well and money) thanks everyone for taking the time to read this!

Hello, I don't know exactly what is going on with your son, but when I saw "ice" as a treatment I was very concerned. I have a friend that was treated with "ice" therapy and it made everything, CRPS, infinitely worse. I would really question the dr. that made the ice recommendation, and possibly stop it immediately if there is any suspicion of CRPS. Again, not trying to scare you, just trying to help. I have was diagnosed over a decade ago, so I may not be up to date on treatments. I do know however that I cannot tolerate ice or "cold" on my affected extremities, it really hurts them I would avoid ice like the plague unless your little one says it makes him feel infinitely better. I actually cannot tolerate anything even touching my affected limbs (my hands). It is very difficult living in a cold winter state when you can't tolerate gloves, etc. Sorry, I'm not trying to make this about me, just trying to explain perhaps avoid the ice? If I "iced" my hands I would be in horrible pain. Your young one can probably not explain this. If it's not CRPS, then you can ignore my post. I hope and pray your little one gets better. Take care

[stillsmiling]

Hi Caraleigh, yesterday Biobased posted a link to an article that referenced the "spoon theory." I have 4 children, one of which has had a series of serious health problems his entire life. Nothing can tug at your heart strings more than your own child suffering. As you have already been doing, you have to be your child's biggest advocate. You will learn things that many Doctors will be unaware about. It sounds like you are doing a wonderful job juggling many different areas of his care. Getting back to the spoon theory. Google it if you've not heard about it yet. My youngest is eight and I believe she could grasp the concept if given actual plastic spoons to turn into you throughout the day. This might be a good way for both you and your son to recognize what's depleting the most spoons from his day, and adjust how he "spends" them accordingly. Just a thought. Prayers and hugs going out to you Mama. Your son is blessed to have you.

[swimtime]

As far as the school issues go, get a doctors note with his diagnosis and ask the school to evaluate him for either an IEP or 504 plan. (And don't take no for an answer.)

http://kidshealth.org/parent/positiv...504-plans.html

It's a bit of a process with evaluations from various specialties, but it can be very helpful. Special services and accomodations can be provided with those plans in place. Also in the meantime, you can give the gym teacher a note from the doctor excusing him from any activities that he can't do. Hope this is helpful.

[buffym]

Hi, your story sounds so, so similar to mine. My daughter, who is also 9, has been dealing with this since April of this year. We followed similar pattern, Sever's (no injury trigger, though she was doing an after school running program), ice, Advil, rest, didn't get better. Finally got an MRI and a Dr with a diagnosis of CRPS. We have found a PT that knows about CRPS which is really great, but so far PT isn't helping her pain. She hasn't tried any medication yet.

[DejaVu]

I am very sorry your child is suffering with CRPS.
This must be very difficult for both of you. It hurts to have a child in pain.

I'd like to take a moment to thank you for stepping up to advocate for your child. Not every parent can, or chooses to, advocate to this degree.

Lots of great people, information and support here.

I want to let you know I am finding magnesium chloride spray very helpful.
I like the Epsom Magnesium lotion; yet, I find the chloride spray is much more helpful. I have less pain and fewer cramps/spams in my feet/legs. I had not been able to sleep through the night before massaging in the magnesium chloride.

There is a lot written about people with CRPS disowning their painful limb(s).
It's important we see our limb(s), we touch our limbs, etc. I have found it very helpful to massage my limbs, with or without the magnesium, several times a day. We can use different textures and lightly rub them on our skin.

We can have someone help us with this, if/when we need help.

You might learn something helpful from Dr. A. Kirkpatrick's video(s). He has at least one where he counsels young people. I had posted a link to his video. This one is approx. 44 minutes in length.
http://neurotalk.psychcentral.com/sh...30#post1182530

I am glad you are here, reaching out for information and support.

Much Love and Healing to You and to Your Child,

DejaVu

[BraveGirl]

Sorry to hear if about your difficult journey. Hang in there! It is hard to keep your spirits up as a parent. Take some time for yourself and get together with friends sometimes and DON'T talk about your son for at least part of the time. It can become all consuming, and that's not healthy for you or for him.

Here are a few (of the many) posts on the forum that might help-.

http://neurotalk.psychcentral.com/sh...d.php?t=227972

http://neurotalk.psychcentral.com/sh...985#post970985

Originally Posted by Caraleigh

Hi everyone, my name is cara. My son's right foot pain (since may) had what brought me here. We've been on a long road of trying to figure out why he's having pain everyday. It started out in May of taking Tylenol 2 or 3 times a day. Then saw his doctor who referred us to a podiatrist who said he just had some blood blisters underneath one of his tendons. Told us to ice his foot three times a day Advil three times a day for two weeks and wear a wrap. After that didn't work he still having pain everyday still have to give him advil at least once or twice a day his doctor referred us to having xrays. Nothing came up abnormal. Then he sent us to Children's Medical to see a sports medicine doctor. She has helped us more than the rest of them have. She diagnosed him with Seevers disease. he's gone through three or four months of physical therapy which really hasn't helped too much. She also told him to do the advil and ice for one week 3 times a day. After not think too much of an improvement with that we did a recheck and then she wanted to send him to an MRI she believed he has an accessory navicular bone. Which the test showed that he did however it's not really causing the problem none of the muscles or tendons are inflamed are having issues with the bone yet. So then now she has diagnosed him with complex regional pain syndrome or rsd. And she has referred us to a neurological doctor within the hospital for pain management. Needless to say with all this going on trying to deal with his father and the family we are currently divorced so it makes things complicated. And dealing with the teachers and the gym teacher and his homework which he's behind in its just been a really rough road. But she's in her late twenties and I know it's different for the age group slightly. I just wanted to come here to have some other mothers and families who have been dealing with the same situations or similar to try to get some help and a piece of mind. And possibly some new outlooks on things that they have gone through.
Above was a older post but this is our current situation. ( Nothing difinitive that they believe caused it. At the very least I remember in may he slightly rolled his ankle in gym but that's it. ) He's been out of school now for a week and 3 days. And I have him signed up for intermittent home instruction. On Friday he goes in for a full body bone scan. To clarify the diagnosis. I'm just hoping they find something. All roads have been a dead end it seems lately. And I have also found a counciling center to try. I'm hoping it will bring comfort for us. They have him on prednisone and neurontin. Which had shown side effects. ..so now just taking prednisone till its finished and then start neurontin back up to see if it might help. I'm besides myself. Has anyone gone though this kind of situation?* How did you cope as a parent. How do you keep your spirits up and your child's. I have my own business and it's sliding away due to the responsibilities of care. (Well and money) thanks everyone for taking the time to read this!