Good luck at the apointment tomorow,
hugs,
Sandra

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

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.

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