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kimmief 05-01-2004 08:00 AM

Father says hurtful things to daughter - any advice
I am new to this website and I love it! Thank you so much for the responses that I have gotten so far. I have a big problem and it will be long but, this is a big question that I need help on.

My daughter was diagnosed almost 2 years ago with RSD, she was 8 at the time. After call after call to Doctor's offices for help, we finally found one that was willing to help my daughter in Greenville, SC. It was a nightmare - he told us that he thought that Emily, by the way she was acting (crying and screaming if her foot was touched or she would withdraw her foot and not let him touch it at all) was sexually abused, and was borderline psychophrentic. To add to our problems he said that he had amputated limbs of adults who have RSD and had had some good outcomes with this treatment, but didn't know if we wanted to go that far right now. He also said that he felt like she was acting out because I was not pushing her enough because I had a "take care of personality" and her Father had a "take charge personality". Needless to say, I put my precious baby in the car, never to return to that Doctor again. So, from all this being said, Emily's Father has taken every word to the extreme and run with. And for those wondering, she was NEVER abused (except by that Doctor - mentally) and no she does not have any mental disease. She missed over 40 days of school for year 2002 - 2003, she has missed only about 20 this current school year. My daughter's Father is trying to get cusotdy of our daughter - one of the reasons is because she is sick and another is we are moving out of the state with my husband's job. He says that I am the one who is creating and adding to my daughter's pain and he is the only one who can help her? I am a stay at home Mom so that I can take her to doctors appointments, fly her to Minnesota and take her to PT 3 to 5 times a week. I also homeschool my daughter when she is not able to attend school (honor roll student too). He says that she needs to be in school regardless of her pain because she will be better off being with friends. By me keeping her home I am isolating her from her friends and she will not get better because, I baby her. He also tells her that she does not need to be on crutches that she needs to walk without them. When she hits her foot he tells her don't think about it, the pain will go away, (he is not the one who stays up all night with her while she screams for hours and hours at the time). He tells her that her that her pain can't be as bad as she says because just a minute ago you were laughing. When he calls he tells her over and over again - work your toes, don't think about he pain - just do it. I realize that RSD motto is "No pain, no gain" but I feel like he is being so unrealistic and just plain mean. I am so scared if for some reason Family Court, because of RSD being so unknown, will think I am the cause. I have a court date on May 19 and I need some advice to tell the Courts. She was in remission for about 6 months recently and it has just come back, when I called him to tell him she was having pain again he told me "I can't stand the fact that she will be on crutches for the rest of her life, you need to try and get her to walk without them" - I was so upset with him, I was crushed. The fact that she would be on crutches for the rest of her life means nothing to me - I love her any way that she comes. Just seeing her being able to get out of bed is a huge step for her at times. She is an innocent baby who should be thinking about what friend she will have over next, not what time her next Doctor's appointment is. She sent me a note yesterday, Thanking me for being there for her when her foot hurts and for not telling her over and over what to do. We are so much better off today than we were a year ago, but can I be too caring and not pushy enough to make her better. Scared at the outcome, wil somebody help me with your thoughts?

Jewel2 05-01-2004 08:41 AM

Re: Father says hurtful things to daughter - any advice
Oh, Kim, my heart goes out to you and your daughter!

I think the first thing I want to correct is the idea of "no pain, no gain" being an RSD motto. ABSOLUTELY NOT TRUE!! In fact, triggering intolerable pain can set you back. Having said that, an RSD patient will most likely experience some pain during exercise or PT as it is a fine balancing act of keeping the limb from atrophying through exercise while keeping the pain suppressed. That is why a good PT is so important. And your daughter will have to learn what her pain limit is so she can communicate that she is at her limit before crossing that line. Once you cross that line things can get out of control.

The next thing is - NEVER AMPUTATE!! It sounds like you figured out that doctor was horrible, but I just wanted to make sure you knew amputation is not an option. Your daughter's RSD involves her whole sympathetic nervous system starting in the brain. Though the triggering event was in her foot, and that is where she still perceives the pain, the problem is now way beyond her foot. In fact, removing the foot would most likely lead to phantom pain of the same type.

I would suggest printing out all of the credible information you can find and taking it to your doctor. They Mayo Clinic document at the top of this forum is an excellent one to start with. You can also do a lot of searching the net for more info. And get your daughter's medical records from Mayo and read through them first for accuracy and clarity.

If I think of anything else I will add it later. I know that other forum members will have a lot of good input.

Best wishes to you as you are dealing with so many issues right now.


xtanner 05-01-2004 02:31 PM

Re: Father says hurtful things to daughter - any advice
Ditto what Julie said, she is right on! It's too bad her dad hasn't put out any effort to research and learn about RSD. She is lucky to have a parent who can devote 24/7 to her care. It sounds like he isn't as interested in taking care of her as taking control of her. Maybe someone should hit him in the foot with a sledge hammer and tell him to wiggle his toes and don't think about the pain and it will just go away. Keep us posted! - Shelley

sharon1030 05-01-2004 05:47 PM

Re: Father says hurtful things to daughter - any advice
[SIZE=3][COLOR=RoyalBlue]Hi Kim,

Ditto Julie and Shelley (especially the sledge hammer thing :)). I don't think you are being "too caring and not pushy enough." It sounds to me like you are being a wonderful, loving, caring mother. I'm really sorry you're dealing with all of this on top of illness. I agree with Julie that you should try to get all the information on RSD that you can get your hands on. I know it's very scary when a decision like the custody of your child may lay in the hands of someone who's never heard of RSD. As you said, they may think you're not helping things by being "too caring." I think that if you can try to educate the people who will be making this decision, that will be a good thing.

As far as missing all that school...when I was in the 6th and 7th grades, I missed three months each year. I wound up with a diagnosis of Type I diabetes in the 7th grade and the illness leading up to that diagnosis is a common thing. Anyway, I missed all that school, but did fine anyway, academically and socially. I think the social part of elementary school is more important than academics so keep her in touch with her friends which I'm sure you're doing. I love her name by the way! I had a cat named Emily! Good luck and keep us posted. I'm really very sorry you're having to deal with all of this.

Sharon :)[/COLOR][/SIZE]

msdrea83 05-01-2004 05:59 PM

Re: Father says hurtful things to daughter - any advice
Hi Kim,
Like the others have said, you're doing a great job with your daughter. I'm only 20, 21 in July, prolly one of the youngest on this board and when I was at home my parents, younger sister, and boyfriend all "babied" me the way you do your daughter. Trust me, it is very much appreciated when we are in so much pain we just want to stay in bed and cry. You are our angels :angel:
For your court date you might try getting letters on your behalf from your daughters doctors and pt on how dependable and concerned for your daughter's health you are. If you have them on your side it could go better in court. Just a thought! Good luck, I hope your daughter is doing well.

~Andrea~ :wave:

justine99 05-01-2004 09:01 PM

Re: Father says hurtful things to daughter - any advice
First of all my heart goes out for you and your daughter. I am a mother of three and I don't know what I would do if one of my children were experiencing the type of pain that I am going through. I have RSD of the Right wrist and hand from an injury in Dec.03. You are doing an excelent job. As far as the school your daughter is missing I wouldn't worry about it. Starting in the 6th grade I was dx with polycystic overies and by 16 endometrious and missed months of school each year for surgeries and I still graduated top of my class and a year early. As for your court hearing, My husband is a police officer and had had much experience with custody hearing between partents. My sugestion would to get your daughter medical records and a statement from her Doctor and PT staring her dx andthe severity of the dease process and the treatment plan that is in effect, to help the xourt understand RSD better. The fact that you are a stay at home mother and can devote all your time to help her try with the RSD and hopefully recover from it is GREATLY in your favor. I wish you the best of luck. Keep us posted.

AngeInBoston 05-02-2004 01:29 PM

Re: Father says hurtful things to daughter - any advice
Hi Kimmie :wave:

I'm so sorry your daughter has to deal with such horrible pain at such a young age! As well as all the ignorance surrounding this disease! She truly is VERY lucky to have such a loving and caring Mom taking the time to learn about the disease, and following your intuition not to believe that incredibly ignorant caveman of a Dr!

It absolutely does sound like your daughter's father has not researched about this disease...or if he has, he's going with the outdated, insulting and ignorant stance that it is psychosomatic. I say to tell him off before he inflicts any more damage to your daughter's self esteem! :nono:

I think it's good advice to go to court as well armed as you can...print as much material as you can, including the threads here on this site about the Symptoms of RSD, and the Letter to Friends and Family, which clearly sum up and clarify the disease to Non-RSDers.

Good luck!
~Ange~ :cool:

kshores324 05-02-2004 08:10 PM

Re: Father says hurtful things to daughter - any advice
Hi Kim,
I too am new to this board, but decided to make my first post after reading your story!
My heart goes out to you and your daughter. Have you seen the recent Social Security ruling declaring RSD as a disability? I do not necesarily mean to declare your daughter diasbled, but this could be very valuable information for your court case. The ruling describes and outlines the disease very well. Kristen

kshores324 05-02-2004 08:13 PM

Re: Father says hurtful things to daughter - any advice
I just remembered that there is a very well respected, well versed on RSD doctor in Greenville that you may be interested in, I hope that is not the one you already saw.

Horsie Nutt 05-07-2004 08:30 PM

Re: Father says hurtful things to daughter - any advice
Hi Kim. I've written to you on a couple other posts, but I just saw this one. When is the court date? You have "ammo" against your ex in his mental abuse of Emily. Get her doc to write a note/letter about her condition stating what she should and should not be doing, or if you can, get a deposition from him or serve him with papers to appear in court on your behalf. Do what everyone else has said, print out and bring as much info on RSD as you can to show the judge. Make sure you have some articles that state how some patients go from doctor to doctor being misdiagnosed, being told that the pain is in their head, etc. Very important to have those. Ask Emily is she would mind talking with the judge about her condition. DON'T tell her what to say, but try to get her to understand that she needn't be afraid of the judge. I'm sure the judge will ask Emily about what her father says to her when he calls, and how it makes her feel. Unless you have a cold, uncaring rock as a judge, he/she will know that Emily's father has been mentally abusing his daughter. make a journal of when he calls, what time he calls, what he says, Emily's reaction, how she is after they hang up, etc.

I hope you do the sledge hammer toe thing too. That was the best idea yet.

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