10 1/2 year old just diagnosed...
 

my child hurt her foot 7 weeks ago. One dr casted her even though there was no apparent break for 10 days, and then gave her the cast boot. The pain is below the pinky toe. We went to another Dr a few weeks later, since her pain was not getting better and she still could nto work. He diagnosed hypersensity and perscribed PT. Over the course of 2+ weeks we got her past the point of where slight touch hurt and got her in a shoe! We even got her to skate (though not walk yet). Every time she put her foot on ground she would complain it hurts. She was walking on her heel. On PT on monday she even did take a few steps in pain.
Then tuesday morning came and she was in more pain than ever before. We are back to where the slightest touch, a sock, etc hurts her foot. We went to a new Ped Ortho who said it was RSD. I am trying to get into a pain clinic for children here in Atlanta and there is a 5 week wait, even with RSD!

All my child has done since yesterday is cry and say that the pain is even worse. I know that some of it is due to teh diagnosis. Her main thing is that she is insisting on getting an MRI. She doesnt believe that there is not something real wrong with her foot. She wants to know why she was almost walking on Monday and now things are worse again. That something ahs to be wrong with the foot since she was using it and it got worse. I have the same question.

The Dr yesterday said that after 7 weeks any real injury would be better and that in kids bones will break before tendons get hurt. he also said that the foot was somewhat red, though I could not see it as much as he sees it. I am waiting for the pain specialist to return to my call. I was faxed a bunch of info.

So why did she get better after therapy and using the foot and then get worse than before like that? Also, I read about Cleveland Clinic here, but what other Pediatric options do I have. What about meds? do they work. Mirror therapy. I tried to take away teh crutches, but she wont let me. It was the only way I could get her to school. She did nto want to go to school today period, but we eventually got her there. She is in private school, so that really helps. she has a friend that got to stay home with a sprained knee and got an MRI, so I am sure that is where her desires are coming from, but she doesnt understand that her injury is different. She doesnt understand how its messages going to brain, but the foot "physically" is ok. I was so hopeful when she skated last week.

One very sad mama.

I'm so sorry for your daughter and your family.

Now is the time to pull out all stops on getting her to the best doctors / treatments you can find!
She is lucky (in a way) that it was dx'd so early. Other's will have more advice and you've come to a good place..
RSD must be treated EARLY for any chance of a cure.
So, don't wait.
Get her back to her diagnosing doc, maybe for some meds, and then back to PT. (Pain Clinics) can really be just for maintenance ofttimes.

I've had RSD, and more since '83.

So, I ask that you look at ALL options!

Go to the rsdsa.org and you may be able to find a doctor there.

I've heard lots of good things about the Cleveland Clinic.

But, don't waste a day!

Prayers and wishes!


Pete

The childrens pain clinic made a spot for her for next Thursday. I also have an appt made with a child Rheumatologist, that my Ped recommended, though I am not sure if that is where I need to go. WAiting to get answers about that.

I think I am still in denial myself. I want to see my child walk, skate, and rock climb again. I keep reading that she may have this the rest of her life. This is so sad. I sometimes wonder if the diagnosis is wrong myself, since we dont have the sweating, burning sensations, etc that may go with this, or maybe we are early enough in the process.

Thanks for all the support.

Usually kids have better chances than adults, and esp. if they're diagnosed early on (within 3 months of onset). I read somewhere that it's because they still have growth hormone. But then yet again, one case of RSD in a child might not be another case, even here. She won't necessarily have this the rest of her life in a disabling way, so try and keep hope alive. It all depends on when it was diagnosed and on how well she responds to treatment (and there are so many forms of treatment).

It is important to know that the saying "no pain, no gain" doesn't apply here. She can use the foot and have PT but it needs to be within the pain limit and here's where all of that gets very difficult.

First and foremost she needs treatment and pain management because RSD hurts like hell. The pain of it is higher than cancer pain and higher than an untrained first delivery without anesthetics - and she's got this 24/7. Keep that in mind.

You are right in getting her care immediately. Try and read up as much as you can on RSD. Here's one resource I know of:

RSD Puzzles:
http://www.rsdrx.com/rsdpuz4.0/001.htm

Best of luck to you both!

I'm SO sorry to hear that your daughter suffers from RSD and really hope that you can find something to help her real soon! You are both in my thoughts!:hug:

I developed RSD when I was 12 years old after an ankle sprain (am now 14) and that was hard enough but I can't imagine having it at just 10 years old ... I really feel for your daughter! The RSD started in my left leg and has since spread to include both arms unfortunately after further injuries. I spent13 months in a wheelchair after a nerve block caused me to lose my coordination and had to undergo an Intense PT Program to learn how to walk again. I can walk short distances now, however I still have to use my wheelchair long distances.

Have you thought about trying to Intense PT Courses to see if they'd help your daughter? I've spoke to quite a few kids before who have said that they have really helped them. I've been on 2 before and they hurt a LOT but they did work, though I am a far way off being 'cured'!!

If you and your daughter have concerns that it isn't RSD, I'd go and get a second opinion and have further tests run. I had a second opinion but my RSD was confirmed by about 6 different doctors as I had all of the symptoms unfortunately.

As the others said, try and not lose hope. I know it's really hard but your daughter is fairly new into the diagnosis (RSD is best caught within 3 months) so there is a real chance of finding something to help her.

For me, no medications really helped. I have tried everything nearly. The only thing that helps is Ketamine however I only take that when I am in a really bad pain flare as my Dr was concerned it could cause more problems than enough. I am currently undergoing PT and considering seeking further options as a last resort to try and help with the Dystonia (movement disorder) I also have. I've tried mirror therapy to try and learn how to get my RSD limbs moving correctly but it didn't help me. Everyone with RSD is different unfortunately and that makes it hard to determine what will work and what wont.

If you or your daughter ever want to talk, please know that I am here for you as I know first hand what you are going through!!!:hug:

Take care and keep us posted,
Alison

I am confused about a rheumatologist versus a pediatric pain clinic Dr. do I see both?

10 1/2 year old just diagnosed
 

Welcome to Neurotalk,
You come to a wonder place where you will find comfort and so many educated friends that will be 'here' for your daughter, yourself, and family.
I saw on the national news about a week ago the story about a young woman who got RSD and news showed her being able to run with no problems, but when she walked, she had dystonia,, an involuntary movement that is uncontrollable. That may explain why she could skate, but not walk. With some people that is a symptom of RSD. rsd.rx is a wonderful site to learn from. On the part puzzles list that you were referred to is a list of 146 questions from RSD patients and Dr. Hooshmand's answers. He is a retired rsd specialist in Florida that kept his website up for the benefit of patients and families of RSD. It is really informative.
I've heard so many good thoughts about the Cleveland Clinic-I believe they have a Childrens RSD part to their hospitall. Is that the one you have an appointment for next week?
I am a Mom with RSD. I'm 61 now and our daughter was 15 when I got RSD following breast surgery = benign tumors. I got frozen shoulder following the surgery (which was really rsd) but was sent to physical therapy right away. I decided to do massage therapy right before physical therapy to warm up my muscles and make the physical therapy, which was extremely painful, speed up the range of motion. I believe that also help desensitize my rsd shoulder. I went into remission for over a year. I took pain meds before the therapy. They told me it might go into the other shoulder and it did.
I didn't get a rsd diagnosis for 4 years. I had a second remission after the other shoulder therapy. The 2nd remission last over a year also-still undiagnosed. While water skiing, felt nerve pull in hand-original rsd arm. Was misdiagnosed by rheumatologist as rheumatoid arthritis, although the test was negative for RA. I knew he was wrong and flew across the country to a well known Orthopedic Hand Surgeon. He diagnosed me as rsd in 1 minute. Nuclear med test supported him. He had me in pt the next day and ordered a Tens Unit. I came back to Phoenix, AZ and found a good neurologist and a good Ortho Hand Dr. Both supported RSD diagnosis and got me into PT.
That's why you have been encouraged to get your daughter to good RSD DR. as soon as possible. Time is critical along with good rsd dr.
Research as much as you can-although it can be overwhelming. Like what was encouraged-keep hope alive. Children, & early diagnoses, really do have a better chance of remission.
I know you are very scared, but please know you both are in our thoughts and prayers. Ask anything you want-we are here for you both. Take care, loretta and soft hugs to your daughter. :grouphug:

My personal opinion is a Neurologist, that is informed about RSD, is the kind of Dr. to see. I see a Neurologist who also is a pharmacologist and a psychiatrist. I've been seeing him for at least 5 years. Once a month, as I have had RSD for 15 years.
RSD is a neurological disorder. It is a autonomic disorder, which means it effects the sympathetic nerve, parasympathetic nerve, involuntary organs which control body temperature, blood pressure, circulation, (that's why HBOT helps some people-it promotes circulation to extremities) Hyperbaric Oxygen Chambers help some people. My Dr. just built two clinics that both have HBOT in them, they also promote healing, burn victims, and other conditions. Insurance doesn't cover HBOT for RSD, so I'm working on getting into a financial position to go thru a series of treatment. It's expensive. There are a couple of people on this forum that have HBOT in their homes. I have personally talked to clinics in Florida and California. I'm about 10-15 minutes from both clinics, here in Scottsdale and Paradise Valley.
Hope this helps, loretta with soft hugs:grouphug:

If you know your daughter has rsd, you may want to call the rheumatologist, and ask if s/he treats it (rsd). If he doesn't, you may want to ask for a recommendation, of some doctor who does.

Are you near a good University Hospital? If so, you may want to call their neurology department ask for the chief of neurology, and ask if he treats rsd? (I completely agree with Loretta, a neurologist is the way to go, but be careful to find a knowledgeable one!)

Seriously, it's time for you to find / choose a doctor who will be the "lead" doctor for your daughter.

I was diagnosed by Dr Schwartzman in Philly, who is now doing the Ketamine Coma's in Germany. I now see his ex partner, for almost 20 years, and he takes care of directing everything for me. I of course would recommend either of them, but they can take quite a while to see. As for Dr Schwartzman, the ketamine coma is controversial, and expensive (not covered by insurance. There is probably more info on rsdsa.org )
(That's just FYI)

The reason I say what I do, is, your daughter may need some medication, while she gets to some good physical therapy.
This is a "Use it or Lose" type of disease, wether it's cured or not.

Of course, we're all pulling and praying for a cure!

pete

Hi,

First, I am sorry to hear that your daughter is going through this at such a young age.

I have a child with RSD as well, I took her to the Cleveland Clinic Pain Rehabilitation for Children. I highly recommend the three week program. She is young and in the first stage, she can go into remission and maybe never see this ugly disease again.

The program is two weeks in hospital and one week outpatient. It is all children they understand what each other is going through, I took my daughter twice. This is a great beginning.

Opiads are not good for pediatrics, they tend to make the pain worse. Look into a pain program, don't get caught up in going from doctor to doctor to doctor, PT/OT with therapists that do not know much about RSD, they can hurt her more. here is the contact information for the pain program, the contact name is Kristen Buchanan 216-448-6158. Call on Monday, this is the best chance for your daughter. It is not an easy program, but you should begin here. Trust me I know... :)

My prayers are with you.

Sandy

Thank you Sandy,
Your information was valuable to so many. How is your daughter doing and how old is she? That is where I would take my child-have heard good things.
Today I e-mailed The Doctors TV show a request for RSD to be topic for a show. We need top places for the public and fellow RSDers to know about.
Take care, loretta and soft hugs for you both:grouphug:

Hi Loretta,

Remember Lindsay had Ketamine Infusions back in July, she got the flu, and is now in a full flare, we saw Dr. Kirkpatrick on Tuesday and he scheduled her for Boosters next week. So please say a prayer for her. Lindsay knows that the Ketamine infusions worked for her last time.
The Cleveland Clinic was a valuable asset that gave her coping skills and how to make it though the day.

We take our day's one minute at a time. I hope you are having some good minutes. Thank you for asking about my daughter. This site is always a great place for me come. Thank you all...

Soft hugs right back to you Loretta...:hug:
Love Sandy

hydrotherapy?
 

someone pointed me to the web site ** . From that site I realized that PT and at home , we should no longer be icing her foot. PT was always icing her foot adn that is probably why she always hurt more afterwards. I know get it.
I got very worried last night when laying in bed just swinging her leg (aka bending at the knee ) caused pain. She say that the "wind" on her foot hurt. The good news is that because she sometimes walks on her heel, the leg does get used sometimes.
My daughter responds well with the foot in warm/hot water. so we put her foot in a bathtub and I got a soft sponge out. I was able to get to rest her foot on the sponge a small bit. today, my friend is allowing me to use her hottub. since its normally off, we can make it not as hot as normal. It will be in teh high 60's here. It seems that if my daughter response well to water, its worth it going that route.
Like any other disease or condition, it seems that "knowledge is key" and we need to , as parents or patients, take matters into our own hands. I am trying to stop blaming myself. I let her get casted; thank goodness I fought the PA and said only 10 days not 3 weeks ! When she did not want to do PT, I did not push her hard enough.

Having RSD means that she has nerve pain. Nerve pain expresses itself (among other things) in sensitivity to touch (even light touch).

If you use water on her foot, try and stay away from extremes in temperatures, stay away from ice-cold temperatures and stay away from heat. Normal warmth, normal coldness. And trust her on whatever she can tolerate! Water is NO treatment in itself, she needs medical treatment, but in the mean time... whatever alleviates some of that intense pain... do it.

Most of all, don't push her! At all. She will tell you exactly when too much is too much! And with that kind of pain: TRUST her! PT alone without some form of medical treatment or pain alleviation to be able to do PT is torture.

Hi, I am so sory your daughter is having to deal with this.. and at such a young age too, and I realy feel for you as a mother too..

First I would start her on Vitamin C 500mg daily (ask pharmacist about dosage per weight) as soon as possible, studies have shown that Vitamin C (500mg - 1500mg) when given after a break and after surgery can stop up to 2/3 rds of CRPS from happening in injured people, she is at such an early stage too.. please see the link below about it:

Vitamin C hope for people suffering from extreme pain syndrome
http://www.arc.org.uk/news/pressreleases/13611.asp

Also when it comes to physiotherapy from every thing I have read and alot of the kids I have talked to.. it can realy turn CRPS around and put it into remission..
Children take to physiotherapy far better than adults with CRPS do aparently, and as long as you check out the facility thouroughly.. make sure they know CRPS and have delt with children succesfully, it may seem harsh but look at what progress your daughter made in that very short time.. and how quickly it took to fall back.. I think she would be a good candidate for this kind of multi therapy.

Physical Therapy
http://www.nationalpainfoundation.or...ysical-therapy

Pediatric complex regional pain syndrome
http://www.ncbi.nlm.nih.gov/pubmed/1...&ordinalpos=15

Complex regional pain syndrome (CRPS) in children
http://www.uptodate.com/patients/con...wsrg&refNum=40

Baths.. Put epsome salts in her bath water the magnesium in the salts helps sooth the pain and reduces swelling.. elevate after the soaking.

Best wishes and hugs,
Sandra

Hi Mom & Daughter,
It's loretta- I'm glad you read about NO ICE! Good, like Sandra mentioned and others, PT is torture, I would be straped down on the table while trying to get my shoulder to work. My rehab Dr. that oversaw my therapy said it was the worst case she had seen. I don't remember the degrees. But I took pain medication before going to PT.
Water temperature needs to be Minimum of 86 degrees. We have a heater on our pool and I never get in it under 86 degrees.
I have RSD in my feet and legs, so I don't hang them over the side and have the blood flow= pain. I do walk every day whatever feels good, I've never been where I wasn't able to walk and I have it full body.
When I was diagnosed with RSD in my hand, and started PT, my hand Ortho Dr. oversaw my PT. He knew RSD and his PT people knew RSD. They did desensitization, which is very important. Because, like was mentioned, we are very sensitive even to wind. They had me doing it dailey at home too. I took 5-6 plastic bowls and fill them with different textures. I used cotton balls in one bowl, coffee grounds in another, sand in another, beans, sugar, anything that your daughter can tolerate. You could use pieces of fabric, and clothing is an issue for a lot of us.
Please don't beat yourself up- you love your daughter and did everything in your power to help her-you know that and we all know that. I'm still learning a great deal from all my friends here. They have given me hope beyond compare. thanks everyone!!!!!!:hug:: :)
PT alone is not enough like what was mentioned. You want a good children's neurologist that is great in RSD- like Cleveland Clinic Children
Hospital RSD Drs. A good Dr. dispensing the right meds is soooo important.
When I came back home with the diagnosis of RSD- I got a good neurologist and good hand specialist. I was a little late on diagnosis-so only got partial use of my hand back, but it went from frozen flat to being able to bend my fingers half way into a fist. So can type, cut my own food, button and zip clothes, tie shoes etc. The Tens Unit. the Oregon Dr. who diagnosed me, ordered for me, which my health insurance paid for, and paid for replacement lead pads. The Tens Unit helped my hand-it's not invasive-is a distraction to pain and I believe helps to desensitize the RSD limb.
Please know, as a mom, I know how much you care and love your daughter! She is so young and needs you to be calm and hopeful,and the friends here are all pulling for you both! Take care, loretta with soft hugs:grouphug:

At this stage of her RSD everything is like torture, you have probibly figured that out by now.. the worst thing she can do is nothing, she needs to use her limb as normaly as possible and to bear weight on it. And as you say a heel walk is still bearing weight, get her to do things on her own if she can it will help, and do alot of research yourself, we are our own advocates because alot of the profesionals don't seem to know whats best sometimes.

It is like they have out of date schooling and we have the up to date internet at our fingertips.. I can't tell you how many doctors and such that I have "educated" with more up to date research and medical studys.
Things like "No Ice" how basic is that and why dont they know it?

hugs

doubts?
 

My mother talked to an adult Neurologist who is a cousin and he mentioned that a lot of dr's are putting unknown pain and injury into the catagory of "RSD" and only about 1/2 the cases are real RSD. could it be possible to have something else going on where touching hurts her foot? Noone has wanted to do an MRI, so we never got confirmation about that the original injury.
What is very interesting is that she played outside all day yesterday. She was on her heel, but she played in leaves and put her foot in the 3ft pile of leaves. Yet this morning, it was all about "my foot hurts" i dont want to wear shoes" "I need my crutches". She refuses to give up crutches while in school. That I fully believe is all about "everyone will think I was faking if I dont have crutches". I also think that her pain sometimes is also about that as well. I dont know what to believe any more .... She feels pain; I know a some of is now pyschologically based at this point, as well as real.

The reason for a lot of this doubt, is last night, after she went to sleep, and was in deep sleep (not morning sleep), I manipulated her foot. I even put it under the covers. She did not wake up. I thought RSD is part of the involuntary nervous system. Wouldnt pain have woken her up? When I questioned her, she stated she dreamt that her foot hurt. LAter on , in the night, she did move the foot off the bed again.

Someone else relayed a story about how they tore a ligament and even light touch hurt them. PT was still required, but it again made me question the lack of MRI in this diagnosis.

I read all your stories and feel for all of you. I just want to make sure if my daughter is part of this "club" or not. I feel like a faker myself, if this is not the case. you have all been wonderful and so helpful!

When my RSD first started, my mum was able to manipulate my leg when i was asleep. My mum was like you at first and thought that I may be faking it because I couldn't even move it when I was awake but when I was diagnosed, my Pain Management Doctor was great and explained that when you are asleep, your nerves sort of 'switch off' which is why, you are able to do some things that you aren't able to when conscious. You can't move my leg at all now when I am asleep as it locks out to the side in a rigid position - my PM Doctor thinks that is because my RSD has progressd and got worse since I have been diagnosed unfortunatley.

You often find with RSD that you are able to do something and then you pay for it afterwards. Someone else on this forum has their signiture line set to 'For every day I play, I must set aside a day to pay' - that is sooo true!! I, and many others on this forum are often able to go out shopping for explample one day but for the next day/few days, we'll spend it in bed because we are in that much pain and too exhausted to do anything. My PM Dr told my mum that when we are out having fun, our bodies release endorphines so it sort of 'masks' the pain a little but as soon as we stop enjoying ourselves, the pain gets worse again - I guess that is true.

If you are concerned that your daughter may have been misdiagnosed, please try and get a second opinion and beg for further tests to be done!!!! My mum got me a second opinion when I was diagnosed, even though I was told by my PM Doctor that I was the first case he had seen that had all of the symptoms of RSD.

PLEASE, don't give up on your daughter - no matter what the issue is!! She needs your support and to know that you love and care about her no matter what. It's a very scary time when you have been told that you have such an awful condition so she must be really scared right now, especially with her age.

Does your daughter see a Psychologist at all? Maybe that would help her a little?

Please keep us posted when you can and don't give up! I'm here if you ever need / want to talk.

Alison.:hug:

I think it's high time to go see the necessary specialists. In the mean time, please just keep an eye on her and *help* her combat this, instead of making quick assumptions about everything. Don't touch her foot during the night like that again. Please! *You* may be doubtful, but someone doing things like that to an RSD limb (while sleeping) is the last an RSD patient needs! You might even unwittingly make things worse!

When can you go see specialists?

We go on Thursday to the children pain Center here in Atlanta. We are seing a Claudia (cant remember her last name) . I am still trying to figure out why I would need to see a rheumatologist, since my pediatrician mentioned one. I would think a child Neuro might be better. We still have PT today.

Based on my experience, sometimes doctors want referral to rheumatologists to rule out rheumatological issues that can present much like RSD/CRPS, and it's really only a matter of drawing a few tubes of blood, from which they can order literally hundreds of tests.

And for what it's worth, I've seen two rheumatologists since this started, and both were more compassionate than 65% of the neurologists I've run across. Just be careful, if you go there, concerning any suggestions of so-called "anti-TNF[alpha]" drugs. A lot of them work very well and may be able to successfully knock out the illness in a fresh (acute) case; you just want to carefully inquire as to whether there are any special warnings assciated with the drugs, including any unusual impact in kids.

Very happy that you are going to the Children's Pain Center this week. Good move!

Mike

Thank you Marlene for this post, as a parent of a child with RSD, I would never question her pain. I relish the days that she can maneuver through a fun moment without crying in pain. I also pray that she gets sleep in the night, not waiting for her pass out from lack of sleep due to pain. I think this mom needs to take a step back and look at the big picture. I am also upset by the fact that the one doctor said they are categorizing most pain as RSD. I have never heard this. It took six years for the doctors to believe my childs pain, she had to have swelling and discoloration as well as being hospitalized for pain management. I NEVER thought her pain wasn't real and she was 10 years old at the time her pain began. I have gone to the ends of the earth to help my childs pain. It took me a while to post this reply, I was very upset it made me cry for this child.

I don't think a 10 year old could make up this kind of pain, so mom, remember YOU are her only advocate, relish the moments that she can still laugh, sleep and have fun, because they are few and far between with this horrible disease.

I will be praying for you and your daughter.

Sandy

Keep with Pediatric doctors, Pediatrics are a completely different field. Be happy that she was diagnosed this early in the game, Childrens hopsital was a great move, stay with them, they will guide you in the right direction. Everyone has an opinion. Remember she is a baby, she is in pain and you are her mommy, so believe her, listen to her, and let her know that you are on her side. Your daughter has a great chance to go into full remission. Remember I posted for you the contact information for the Cleveland Clinics Pain Rehabilitation program. You should really consider it...It is a holistic approach to pain management. She sounds like a perfect candidate for the program. Remember BELIEVE HER...

Sandy

Sandy,
Thanks for your comments, they're priceless!

I want to add,
about the girl being outside and playing, putting her foot in the leaves...
This is all about "testing", AND MORE IMPORTANTLY Having Fun!
This is what children want to do!
Heck, I would like to, as well!

I remember, 25-20-15-10 years ago, playing with my children, while I had RSD, and TOS.
Oh, I knew that Private detectives were making movies. I didn't give a darn.
I WANTED to have some fun With my Children! (I raised them alone).
And, if I hadto take some breakthrough meds, or get in the whirlpool, that's what I did.
I can't move like that any more. It's been about 26 years now.
(Now, I'm going to have to start some exercise that's NOT FUN)

My point is, that it's absolutely naturally human, for this child to want to have fun! Fun often creates adrenaline, Adrenaline often blocks pain.
Fun = less pain.
But, wait until later!

You've got to let her get "used to" her body, the way it will become.
The more she moves, the better, the more natural, and, let her crash, when she must! Don't, ever say to her, well since you played, now you've got to pay. Encourage her! Encourage her to have fun!
Take care of her when she''s down!

Get her used to this cycle of care, so that later in life, it's what she comes to expect, from whoever her partner is.
These are all ramifications of chronic pain.

She can be a fun, happy, well adjusted person,
or,
become the pain. Don't let the pain become her!

I know that you'll do a swell job!
Don't sweat it, be natural.
By being here, we all know that you're a very loving concerned Mom!

Our prayers for you, your daughter, and your family!
:grouphug:

Pete

Sdlevitt,

As Pete and Sandy said, it's a great sign that your daughter is out having fun with her friends and playing like a 'normal' child should!!!!

I've had RSD for 2 and a half years now. For the first 2 years or so, I didn't feel like doing anything because of the pain and mobility issues that I have (I was in a wheelchair) so I didn't go anywhere. I just sat in bed all the time. I lost ALL of my friends from School because I was unable to go and they didn't understand RSD at all which was the hardest thing i've ever had to deal with. I still spend many days now crying about that but if nothing else, since having this illness, I have learnt who my true friends are and am better off for it. It's took me until now to try and go out again. I still have LOTS of pain but have realised that lifes too short, you need to go out and have fun!! My grandad passed away last year and has silly as that sounds, I think that was a big turning point for me - it made me want to try and do him proud and work through the pain as much as I can. He was always a very happy person and I knew that he wouldn't want my life to be ruined any more than it already has been because of this RSD. Yes, it's extremely painful to go out and do 'normal' things and I can't do a lot of things my friends can but as Pete said, some things are worth the pain!!!! I pay for it a LOT afterwards usually but i'd sooner have that then ruin my life altogether.

As Sandy and Pete said, encourage your daughter to go out as much as possible. If she can go out now, the lest chance she will have of losing any friendships, having problems fitting in with school etc like so many of us have.

Please, listen to your daughter when she is telling you what is wrong!! She needs you to believe her right now as she's dealing with all of this. I honestly don't know what i'd do without my mum, if it wasn't for her, I would have never have gone to the intense Physical Therapy Program and got back walking. She's never left my side the whole time that I have had RSD and it's helped so much more than you'd believe!! We NEED people to understand and believe us ... it can get very depressing dealing with this awful condition!! You know your daughter better than anyone else and as everyone else said, I don't think there's any way she would be able to fake RSD!!! IF however, you do think she may be, get a second opinion and see what they say and then get her to see a Psychologist etc - don't give up on her no matter what the issues are!!!!

I wish you both the best of luck with your appt and hope you get the help you need.:hug:

Alison

Well said sweetheart...:hug:

Sandy

Good luck Thursday! Let us know how it went.

I know it's a horrible diagnosis, but don't lose courage and don't lose hope. There's so much experience on this forum, use that to your advantage, and please know that we mean well and only want to help. I know in your heart you'd prefer a different diagnosis to RSD, something that can be fixed and quickly, but you need to deal with this if it is RSD and other things have definitely been ruled out. RSD is hard on an adult, but it's even harder on a child. Just go the necessary medical route and tune into the forums and other resources. Most of all, stand by your daughter and don't give up on her!!!

Maybe you could check out some support groups:
http://www.rsds.org
http://www.rsdhope.org

Hi Scared Mom with daughter in pain,
I can't imagine what all your are going thru, along with your daughter. Please know you both are in our thoughts and prayers.
It sounds like you want more confirmation for RSD. My diagnostic Ortho Hand Doc I saw in Oregon, sent me to Nuclear Med Dept at the hospital, They use dyes and put your hand (or limb) in a x-ray type machine and the dye shows the RSD spots. Confirmed Then when I flew back home-Phoenix- I went to a good Neurologist who gave me tests for RSD- Some king of machine- He confirmed rsd. Then sent me to hand surgeon-who also had physical therapy- hand Dr. had a student in the room and examined my hand and confirmed rsd and showed student why he diagnosed me. Then his physcial therapy people knew rsd and had treated many people, were in charge of my care and rehab.. They are the ones who had me do it dailey at home in the plastic bowls.
I can say from experience, seeing a psychiatrist who is a neurologist and pharmacologist has been the best for me. I had a very painful and difficult time accepting rsd. I have been seeing him for 5-6 years now. I just switched from once a month to once every 2 months-economy. He doesn't take insurance. He's the one who built 2 clinics with HBOT in them, I'm going to go thru next year. Even though I was 55 at the time I started seeing him-I was water skiing, snow skiing, playing tennis 5 days a week, aerobics, traveling 3-4 big trips a year out of the country, entertained friends a lot, shopped a lot etc. My life was crushed by a very painful disorder. This Dr. helped me get thru it as he knew the pain of rsd.
My parents died when I was 25 and 32 and I saw a psychologist- who was exceptional great for that grief in my life. better than a psychiatrist would be, well maybe not my current psychiatrist- he has experienced close family death.
You are at a GREAT time for remission and great improvement for your daughter. I personally would be heading to the Cleveland Clinic. They often have places from family to stay. I respect SandyS and what she had to say about the clinic and her daughter, Lindsey.
My heart hurts for you, the anxiety and questions you have running thru your mind must be huge. Atlanta is huge, I've been there..I hope you find knowledgable RSD Dr. !!! My mother had cancer and Oregon Drs. said they couldn't help her any more-We flew to Mexico then flew to MD Anderson Cancer Hospital in Houston, TX. I know the desperate feeling and anxiety that fills us when we feel helpless. I was 25...she was 46. Very sad.
Please know we are all thinking of you. I'll call my friends who is head of Nuclear Med Dept at major hospital on west coast today and see if he has any thoughts. He and his wife come and visit everyother year here for 2 weeks. I'll e-mail you with any information. He does the kind of tests that nailed down rsd for me.
Please know you can write here anytime and get ecouragement. Some are straight forward, as they know the criticalness of timing, and don't want you and your daughter to pass the 'window of remission' I remember my two remissions and am so grateful for them. One of them was during my daughters wedding and taking them to Maui for their 1st anniversary. Then another remission the 4 of us went to Italy and France for 4 weeks. Then it came back out of the blue.
I know you are scared-we all share your fears and HOPE. Please let us know how you both are doing. Thans, your friend, loretta with soft hugs:grouphug:

HI SDLevitt,

I wanted to wish you luck tomorrow with your daughter at the pain clinic. First I want to apologize if I seemed a little harsh the other day. I never meant to come across that way. My daughter has been going through a lot lately...and sometimes it takes it toll on you when you don't know how to help them. So I completely understand your questioning her as to whether the pain is real or not. My daughter is going through Ketamine Infusions this week and it is difficult. I am happy that your daughter was diagnosed early and she has such a great chance to go into remission very early and very young. Get a second opinion and a third if it will help you to understand how to cope with this disease. Again, I am praying for you and your daughter. Please feel free to PM me if you have any questions regarding pediatric care for RSD. My love to you and your family.

Sandy

hello..
 

Good luck at the apointment tomorow,
hugs,
Sandra

yesterday
 

We went to see the DR yesterday at Childrens Pain Clinic. Basically she RX'ed this and we are up our PT to 4/5 times a week and try to switch to the childrens sports rehabilitation, since she has provided "training" for them about RSD. She is also starting my daughter on Gabepentin , first at night. and also a voltaren gel. The burning, discoloring, etc is not that apparent on my daughter. They are also promsing the name of a good pain phychiatrist that is closer to me. They suggested mirror therapy as well. She felt that if we did all this that by the end of the year we could see results.

My daughter is not so happy that she has been diagnosed. They are getting a child her own age that had this and overcame it for her to talk to. My daughter is also ADD as well, and before this, she had finally seemed to be winning the war against that (we never did meds). That makes this harder. She would "zone out' when the dr was talking, are partly because she did not want to hear this and partly because she does that. She started to even fight us on PT for last night, but of course she had to go. My daughter is finally accepting that she has this and not a real injury, and now is worried about "what ifs". I told her that if she worked hard it would go away.

The good news is that this affects teh front of her foot, so she can do things on her heel. Therefore the rest of the foot is not being atrophy'ed. Yesterday she rode her bike and scouter (though without shoes on that foot and using her heel), but at least my active child got some exercise. She is very petite for her age and she has already gained soem weight in teh last few months due to inactivity.

If by years end things are not better than the option of going to one of the Pain clinics is there, aka Cleveland or Boston. She knows the people in Boston, and personally we also have some friends /family since we are originally from teh Northeast, so Boston might be where we end up. But right now my daughter doesnt wnat to go to school and is pitching a fit. I also have to email all teachers to explain what is gonig on.

hi,

I wish I knew your first name, but your daughter will have difficulty in school. I don't know where you live, but every school district has a hospital/homebound school program. If her doctor feels she needs to have instruction from home, so that she does not get injured more and she will not fall behind in her academics, you can have her fill out the paper work, you will need to get a diagnosis in writing from the doctor. Ask your daughters guidance counselor what to do. Maybe she needs to be home until the end of the year while you make it through this change in your lives. This way they can not hold her absence against her and retain her at the end of the school year.

Also, go to the RSDSA.org website and read the story about the Fakers Club. It is a story about a little girl about your daughters age, going through the same trials and tribulations that yours is going through. You should also implement a 504 plan which gives your daughter accommodations in regards to her disability. I highly recommend this. On the RSDSA website it gives you some examples of what accommodations that you can use. She will have a multitude of absences, but you want to make sure that when she is better she will be able to return to school. Again, I can be very helpful to you if you would like more information. But, implement the 504 plan immediately and DO NOT take NO for an answer from her school, They will tell you that you do not need it right now, but you do. You need to protect your daughter through out her school years and this will give her rights through IDEA, which is federally regulated. Google 504 plans and check out the RSDSA web page. If you have trouble finding it I will post a link for you.

Good luck with your baby.

Sandy

My name is actually sandy :) .. (the only smiley face I have had all day).
My daughter goes to a small private school that is very accomodating. they dont have to meet all the standards from "no child left behind". Its an IB school . THe school is extremely supporting. the school counselor already emailed me back. They will allow her to do whatever she needs to do. This is one of the reasons why I love this school. I know that in an ordinary public school things would be different.

In your post it mentions "not getting injured more". Just curious how that can happen if the actually injury doesnt exist anymore. I thought the purpose was to use the limb as much as possible to get it back to normal.

Right now my daughter is extremely depressed. I am waiting for a psychologist that specializes in pain in children to call me back. Its hard on a friday to get a hold of everyone. She started Gabapentin, and I am wondering if its making things worse and making her depressed. It doesnt help that due to issues having nothing to do with the foot, she lost a friend this week (she has social issues due to her ADD before all of this happened).
She just wants to just go to sleep and wake up and have the pain gone.

The Dr is suppose to call me back with another girl her age that got over this to talk to my daughter. She just had to contact them first. I think that will go a long way.

the thought of Boston or Cleveland is fresh in my mind .

Hi Sandy,

First, I would say to call the pharmacist to see if depression is a pediatric side effect with the new drug. Is she taking something for her ADD? If so they can be working against each other. You are in the right direction with the psychologist. She will probably not want to go, but you have to be strong and take her anyway. Even though you are in a private school, you should still look into the 504 plan. (during all of your spare time!) They can be implemented in private schools as well. Have one prepared and ready to go just in case. The schools are always accommodating at first, trust me I know first hand.

My daughters doctors have always told me to be careful not to reinjure her ankle, she had an ankle sprain which lead to this back when she was 11 years old. Everyone is different. As long as the PT/OT know what they are doing with an RSD injury or flare, sometimes they can make it worse. I have always been told that warm pool therapy is the best for RSD. So if you have access to warm pool therapy, you should try to get her in.

If things do not work with your plan right now, I hope you consider Boston or Cleveland. They deal specifically with this disease. She will meet other children going through this as well.

I'm sorry that she lost her friend. We all know too well how she feels. I think it is wonderful that she will be able to talk with another child that has gone through what your daughter is going through. Good Luck and my prayers are with you.

Sandy

it keeps getting better and better :(
 

Ok, so between the Gabapentin and all the hydrotherapy we were doing, my daughter put her foot down a few times. The pain had gone from a 7 to a 4. She also decided it would be a good idea to ride her scooter using her heel. She then decided that a big hill that she normally used to do would be a fine idea. I am not watching as I was dealing with something else.
She comes running into the house and says that she cant move her elbow after she fell on it. Now, is this a "real" injury from the fall, or also the RSD. I am told by someone that the RSD doesnt just happen like that. I woudl guess that if we are not agressive about this real injury then, it will also turn into RSD?
As a mom, I can only take so much.

sandy

Hi Sandy--

Try a nice hot bath or shower, and then some hot compresses and/or a heating pad on her injured arm intermittently through the evening as she can tolerate them. Hopefully she's just fine...

The best of luck to you - it's great news that she is out and playing on her scooter!

XOXOX (Another) Sandy C.

Aww... crap.
 

How does the arm look?
RSD spreads with injury as well as other ways.

When you have RSD and injure your body anywhere you can get RSD spread to that area.. I know this is all so new and scary for you as a mother, and I realy do feel for you both.. but early knowlege is so important to avoid more complications.

http://www.rsds.org/2/library/articl...chwartzman.pdf

This is a link to a study that shows the various ways that RSD can spread, just press on the link.

I am not saying that is what is going on but I wouldn't be too sceptical (sp?) about it and be aware of the spreading possibilities, it is important that she be active but equaly important that she be careful. Trama to other areas of the body can equal RSD in those areas as well.. and reinjury to her foot can mean a whole lot worse RSD in her foot than it is now as well as spread up her leg..

I know this is alot for you to take Sandy but you are going to do fine, just be there for her and learn as much as you can, and remember we are here for you both.

hugs,
Sandra

that was a hard read, aka the medicalness of it. I saw my daughter walk on her foot tonight. That was AMAZING. I have to believe that hydrotherapy played such a big role. On friday her pain was intolerable and she was depressed. I was told that after 3 days, the meds would not have worked yet, but maybe...

Now the question becomes, what about the elbow.? only time will tell.

I will just make a speculation, here. You are correct that in true RSD, the injury is healed but the pain remains - many times more pain than with the original injury.

If the original injury was something like a joint, it may be vulnerable to another injury. You see this in athletes all of the time. Once injured, they are always prone to getting the same injury again.

With RSD, the next time you injure the same area it is possible for the pain to be even more severe than for the general population.

I hesitate to put words in someone's mouth, but I don't think SandyS was implying that your daughter was particularly fragile. But she should probably take slightly more precautions to avoid a repeat.

Mike