Topic : 08/25 Extreme Food Obsessions

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Created on : Friday, October 28, 2005, 02:17:57 pm
Author : DrPhilBoard1

(Original Air Date: 11/03/05) What if you were so obsessed with eating that it almost killed you, or craving food so badly that you yelled, kicked and screamed when you couldn't get enough. Nichelle's 6-year-old daughter has Prader-Willi Syndrome and constantly wants to eat. She once threw a fit so loud, the neighbors called the police. Can Nichelle learn to control her own temper when her daughter has a tantrum? Then, Dr. Phil follows up with Kathy, an anorexic whose condition was so severe, she weighed only 68 pounds. She spent three months in treatment, but her struggle is not over yet. Can her family learn the difference between supporting her and enabling her? Talk about the show here.

 

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November 4, 2005, 12:00 pm PST

Prader-Willi syndrome

I am a parent of a young child with PWS. I am horrified that there are parents out there who HAVE a diagnosis for their childs problem and DO NOTHING. I am glad that this parent was give information to help with her daughter. Someone on this message board said something about wondering how many people there are out there who dont know they have it. Current estimates are that 80% of the PWS population are currently undiagnosed. Another question was what happens to these people when they grow up. Unfortunately without proper medical care, and guidance from thier parents to help them control their behaviors the majority of them will end up in some type of assisted living facility. BUT there are people who have been able to live what looks like a normal life. There is a girl in my town who is 25, has PWS, works, and lives mostly on her own. There is so much that can be done, but so much more to do. Unfortunatly the only time slots that PWS gets in shows like this focus on the negative aspects. I do think that Dr. Phill did a fairly good job of focusing on the mothers problem, and not the negatives of PWS though. I feel that it is vitally important to get the message out there to people who either arent sure of their dx, or how dont even have one. THERE IS HOPE! There are things that can help with ALL aspects of your childs syndrome, or even YOURS! Everyone who suspects this is in their life MUST go see a geneticist, or someone else who can help them find their proof positive. I would like to see Dr. Phill do a follow up show to show the things that can be done, and so that MAYBE just maybe the medical community will take this seriously. Prader- Willi Syndrome is THE single most common genetic defect. (non-inherited, its not the same as say Downs Syndrome.) One in 15,000 people has this!! Thats HUGE! In my small town that means there are over 20 people who have it! And yet not one single Dr. we saw at the begining had ever seen this in a patient. Get answers, and someone please let the world know that this does not have to be the terrible thing that it is portrayed as once it finally gets air time.
 
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November 4, 2005, 12:13 pm PST

Dangers of PWS

Quote From: animalcat

Couldn't something such as this , if it does not get controlled, could this endanger Savannah? 

  

This can kill a person who does not have the help or controlled environment needed. They will eat wood, metal, coins, their hair, anything they can. To the point of rupturing their stomachs. Which leads to a very painfull death if someone isnt there to stop them, or treat them AS SOON AS it happens. I hope and pray that now that someone as big as Dr. Phill has done this people will keep asking questions, and start going to pwsausa.org to get the information. If one person finds out that they or someone they know has this, and they get the REAL help they need anything negative that went along with this will be worth it.
 
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November 4, 2005, 12:38 pm PST

11/03 Extreme Food Obsessions

Quote From: merganthe

Obviously, you were not paying attention to the true circumstances of Nichelle's daughter.  Nichelle's Age as a parent has a lot to do with it because she does not have any years of experience as an adult to know WHERE & HOW to ask questions regarding this very rare condition that her daughter has.  She doesn't have time or background to pickup workable discipline techniques.  Also as a single parent, there is no one else to fall back on so that she can take the time to make numerous phone calls, appointments, and research or even just have a moment to think on her own.   

  

Comparing her life to yours is like apples and oranges, especially when you lay this all on the issue of discipline & self-control.   Children who are physically or mentally challenged are unable to see the world as your healthy normal kids do.  Her daughter does not learn as easily as your babies do.  When she does learn, she has a much more difficult time with situational applications.   You have NO CLUE about what you are talking about in this situation regarding a special  needs child with this or any disorder.   

  

Cause and effects of misbehavior to this child are much different than for your 1 & 2 year old.  Tantrums can rage for hours and feed on themselves with non-special needs children.  My brother is deaf and I remember the nightmare he put my very strong & firm parents through with his physical tantrums.  They would last for hours... not just a couple, I"m talking about 8-10 hours.  Furniture & people were broken.   My mother had pictures of the bruises he inflicted when he was only 6 years old.  He never ever learned that screaming would get him nothing.  Even as a teenager, he was having them.  As an adult, people still give into him than risk his wrath.  Oh, he's a charmer when things go his way.  At least now he just cuts you out of his life when you say something he doesn't like.  Years go by without words from him.  But he's what my parents truly wanted for him -- a fully functioning independent adult member of society.   I'm not saying that his life is what ALL challenged individuals are like, but this world is so completely different than yours, that you cannot even fathom it.  By stating that all she needs is self-control & discipline, you minimize what her daughter must face to survive.   

   

 In the 1960s there was no one to help my mother through her day.  She had to drive long hours for him to be educated.  Raising a deaf child back then was equated to 5 children at one time.  Everyone told her to institutionalize him.  I"d hate to think what Nichelle goes through.  Despite abhoring her mindset that her daughter will learn not to overeat, comprehends 'pushing buttons,' and will be self sufficent despite mental retardations, I have to admire her willingness to be the scapegoat on national tv for everyone else who is mishandling their own situation.  I cringe at what she was doing, especially losing her temper at her child for losing hers.   With the right help & tools, I believe that her household environment will get better.  It can only improve :) 

  

 Stating your experience of dealing with your one and two year old children are complete successes at such an early age (theirs) is nothing but arrogance on your part.  It's much too soon to tell if your techniques actually work.  Remember, child rearing is not a sprint, but a marathon.  Let us know when they're 22 & hopefully independent how things work out :)   

  

My own daughter is 26 months old and she knows very well that tantrums are usually just ignored.  She'll end up talking to me or wandering off to do something else.  Right now, things are really good, but who knows what paths our lives will take.  I just know from the environment I was raised in, that her having no disabilities is so much easier than what my parents endured.   She is such a blessing no matter how strong willed, contrary, and moody her actions are.   

There is nothing obvious about her circumstances to me. I am not condemning or condoning anything. BUT I am a single mom of three, and I am only 26 years old. My oldest is 23 months old. My son with Prader-Willi has a twin sister. They are 9 months old. I dont have people to fall back on. I dont have someone to come and take care of the kids while I clean, or cook, or try to take a shower. But my kids ARE THE MOST IMPORTANT THING!! Ands my son has a to quote the medical info I was given when he was diagnosed "lifelong and life threatening condition". To me this means that every moment I have, when the kids are napping, or playing where I can watch them, or after they go to bed, I am right here. I am a member of 4 different PWS groups online. I am a member of PWSA-USA, If you cant afford it they give it to you free. I am also a member of the California PWS support group and Foundation. I get information in the mail from them periodicaly, I have an enormous amount of resources at my fingertips, even if I didnt have a computer I would be able to get in contact with many many people who can get all this information for me. Also If you join on of these groups they have a support group of parent mentors who whill contact you and help you through anything you need. Medical information, support through surgeries, or just someone to talk to when you are having a day when all you want to do is sit and cry. My situation seemed very hopeless and bleak when I got the news, but I pulled myself up and called the phone number I was given and found my hope, not to mention the greatest group of parents in the world. I am sorry, but someone can not say this person is young and alone and didnt have the resources. It is a great falisy in our society that we are owed something. If you want something you have to get it yourself is what I say. It is out responsiblity to learn what we can. Every community in our country has some type of free service that a parent can get some type of literature on what their child has. There is no excuse for negligence. I will say that this mother had sever denial issues, and that is the reason she did what she did. But the information was there, the help was there, it did not take 6 years and getting up infront of the nation for that help to be there. And the mother needs self control and discipline. I think that she needed help with issues in herself before she ever should have had children. I know that is not always possible, but it becomes your responsibility to change things, and work on yourself if you are thrown into that situation. I know I have had to deal with things in myself that I did not want to face yet. But I have kids, I have their futur to nurish now as well as my own. If I can do it in equally, if not harder circumstances, then no one should tell her that its to hard. Everything is hard, you have to pick the things you want to do. I dont go shopping, I dont put makeup on, I dont hang out with my friends. I devote my time and energy to making sure my son has the medical and emotional care he needs. He is in therapy twice a week, and averages 6 (yes it really is 6) Dr. appts. a month since birth. I know the behavior issues to come, and am trying to prepare myself for them. I am not saying I wont make mistakes. Or that anyone else wont. But please lets stop buying into what our society is selling and take some responsibility for our own action, or lack there of. Own what you have done, who you are. Dont be someones victim. Dont blame your past, or your parents ('cause trust me I could use that one), or the guy that doesnt want to be your husband, or your teachers for not getting you into college. Own who you are. I am F***ed up, single, angry, and do certian things that may make some people not like me. But I know it. And it WILL NOT be apart of my kids lives. They will have a happy mom who loves them, and does everything she can to give them tools to be happy well adjust adults who dont have to worry about turning out like their parents.
 
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November 4, 2005, 12:49 pm PST

11/03 Extreme Food Obsessions

Quote From: pwmommy

This is the first time I find myself inclined to write to a talk show, but, given that I have a very personal connnection with the issue, I suppose it is not surprising.  Watching Michelle's pain come through was horrific - I don't condone the coping techniques - but she clearly stated that she wanted help.  I found out my daughter had PW when she was three and my reaction was to take a garbage bag and empty the entire contents of my kitchen into it!  I have not always coped well, but I did get help from some amazing professionals.  My daughter is now 23 and is 125 pounds.  She is awesome.  Although I realize that Dr. Phil was probably trying to shock treat Michelle by showing her Mirabelle's story, I was pretty angry that he could did not take the trouble to find a different scenario to show her, to give her hope.  I was just as distressed seeing Mirabelle's tape as I was seeing Michelle's.  Although I have no doubt that the family love Mirabelle, I did not see alot of evidence that she had been given many coping strategies or that her environment was very encouraging for other's to see.  Believe me, that is NOT the way it has to be. 

  

Michelle, please know that your daughter does NOT have to be obese, she can be taught to react appropriately and she can find her place in society.  But, it does require compassion, patience and love on your part.  It does require that you realize that she may hear what you say, may seem to even understand your rules, but that does not stop the impulses.  You have to teach her ways to cope that are realistic and you have to give her an environment that lends itself to helping her use her coping strategies.  She will require constant supervision, a group home environment when she is older - but she can have a great life and so can you. 

  

In all of this, please don't forget about your other child - of which little was said.  They too, deserve compassion, love and patience and they too, need to learn to cope with and love their sibling. 

  

Take heart, this is the beginning.  It was indeed brave of you to come forward, but the world is now watching to see where you will go from here.  I would love to find a way to help you.  I certainly would never presume to judge you - especially since we only knew you for 30 minutes. 

  

Diane 

 Diane;

OMG, you and your daughter are my heroes!!   I've been in PWS hell since I found out about this show and read this msg board.  See, I am the father of a 4 year old girl with PWS.  Some days are OK, but some days are like these past 2 when I think about Mirabelle and 300 lb 13 yr olds and how it must feel to be hungry ALL THE TIME. 

But there have been some hopeful messages on this board too - and yours tops the list.  Your daughter is 23 and weighs 125 lbs!  That's amazing.  Ever since my daughter was diagnosed I've been searching for what I call 'PWS succes stories'.  And I've found they are few and far between.  One I recently learned about is a young woman about the same age as your daughter who has recently graduated college with a dual major!!  This gal struggles with her weight for sure, has had lots of support from family and friends, but she is a hero to me. 

I hope to be able to talk to you off line to see what your 'secrets' are.  If u haven't written a book yet, it's time to get out the word processor!  There are lotsof parents out here ready to read it.

My best to you and your daughter.
 
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November 4, 2005, 1:25 pm PST

Dear A.S. Mom,

Quote From: happyfool

My Daughter has Angelman Syndrome, another genetic disability on the same area of the same gene as Prater Willies, some behaviors are similar, she is a food thief and is so sneaky!!!  As I look at life I sometimes think that God must have dropped some coffee on my leger page, sometimes enough is enough, but we always get by, so that proves...? Anyhow, no one should abuse another, all we need in life is the golden rule, and remember "first do no harm". Smile, laugh, be kind and keep dancing through life....

I couldn't agree more.  You gotta laugh to keep from crying.  As a Christian, I know God gives me specific skills for specific tasks.  Sometimes I don't always know what that is, but the purpose eventually comes to light.  I don't always like the task asked of me, but who am I to say "NO"?    I am so sad for my mother-in-law.  She had such a difficult life & didn't quite understand "why me"?  But she did the best she could with what she had at the time, and believe me....in the 1950's there wasn't a whole lot of protocol going around.  Her mother constantly reminded her that her conception was not only an accident, but that she was also a living abortion.  Fast forward to marriage at age 16, and 5 childbirths in rapid succession left her with:
 

  1. Son#1 born in 1951 with Prader-Willi Syndrome & Freulich Syndrome.
  2. Daughter#1 born in 1952 with extra fingers, toes & a brain tumor on her optic nerve.  She died in 1953 at 9 months old during unsuccessful brain surgery.
  3. Son#2 born in 1954 with extra fingers, toes & cerebral palsy.
  4. Son#3 born in 1955 physically normal, but gay (I'm not going there).
  5. Son#4 born in 1957 physically normal (my ex-husband).
  6. Mother died in November 1979 of long term terminal cancer.
  7. Husband died in Jan 1980 at age 51of complications suffered in a fall that left him quadriplegic for 6 weeks.
  8. Son#1 died in the summer of 1996 of heart disease brought on by Prader-Willi Syndrome.
  9. Mother-in-law died in 2001 of no known cause.

We never know what's next in our lives.  But I agree that not only should we live the golden rule, but help out where ever we can.  It's not going to kill us to babysit once in a while so that any parent (single or otherwise) of a child with lifelong health challenges can have a break.  I thank God everyday for the life he's given me & the things that he's shown me.  Now it's time to pay it forward.  Thank you for writing.  I'll keep you in my prayers too.
 

 
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November 4, 2005, 1:55 pm PST

I agree with you

Quote From: pistol05

This mother, by going on national T.V. and admitting that she is overwhelmed to the point of abusing her child, is making a step in the right direction.  It's the mother that can't admit she is out out of control and hides the fact that is a real danger to her children.  This mother wants help and is willing to receive it.  Good for her.  She is to be commended for her honesty. 

  

You are correct that violence from one's parent has a life-long lasting affect.  It has for me. 

  

My mother never admitted she was an abusive parent and denies to this day that she ever hit me with a belt, extension cord, hair brushes, etc., or was so destructively verbally abusive, and I wasn't mentally handicapped and a challenge like this woman's daughter is, although no excuse justifies taking out your frustrations on a child.  I so hated my upbringing that I do not use corporal punishment with my child nor do I call him names.  Part of being a parent and an adult is making choices.  I have made a choice not to react in anger and strike another.  I will admit that it is hard to do at times, but ultimately I am the one that is in control of my emotions.  I think this mother is on the right track just by admitting she has a problem, and I wish her well in getting help. 

I totally see what you are saying and agree 150% that this woman needs HELP. However, if she does not follow thru with the help Dr. Phil has offered or slips up. Then she needs to lose this gift that God has given her. I do know full well the frustrations, anger, and guilt that come from a child with special needs. For 15 years instead of taking them out on my son I have used that energy to help him, and made sure that I had a VERY VERY good support system around me. Now I am happy to say that he is not "normal" but he is in 80% mainstreamed classes!!! Which for him is a big deal. It has been a long bumpy road but after while you get use to the bumps and see them coming and just deal with them. Again I hope and Pray that this child will be OK and her Mom will get the help she so desperately needs. I will also say a prayer for you I too know what it is like to grow up with an abusive, non connected mother. I recently went back to school at the age of 34.Instead of congratulations or something supportive she said and I quote "Why can't you find a nice guy to take care of you and the kids." She was very physically abusive growing up and I guess that is why I have zero tolerance for abuse. Again I wish you and all well.
 

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November 4, 2005, 1:57 pm PST

What about food accessible to child?

What about the food that this Mother makes accessible to this child?  Isn't this a BIG part of her frustration?  The child wants to eat ... she grabs junk ... and there seems to be no other options for her.  If the household were filled with only healthy choices -- fruit, vegetables, etc., then neither the Mother or child would be gaining as many excess pounds!!  I entirely agreed with what Dr. Phil said regarding the Mother's expectations of this child to obey every order given, but she isn't able to discipline herself -- obeying what she should.  I've always said that I shouldn't expect my small children to never have to be reminded of things I've told them to do, if after 40 years, I still don't follow all the rules either.  We need to keep in mind how small these little ones are ... how much learning is taking place ... and how much patience our God gives us when we fail.  No doubt it's tough, but we need to extend that same grace and patience to those around us! 
 
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November 4, 2005, 2:05 pm PST

fat

wow how this episode angered me. I am 18 years old and i hate the way i look. I dont want to be anorexic and i dont think that with my bone structure i could be, but i dont wanna be fat either. i have people that tell me im not fat and that im just fine the way i am, but wow how they are wrong. i hate going to the doctor because you have to get weighed first. That is ridiculous and i know that. and i also know that be being fat is something that i can control. but i just dont have the motivation. i dont know what my problem is. i dont have a job so that doesn't really help anything cause im not doing anything. i sit around all day.. all i have to say is im glad i dont have ppl telling me im fat and things like that, cause that would crush me.
 
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November 4, 2005, 2:18 pm PST

Another PWS success story

Quote From: heyjewel

 Diane;

OMG, you and your daughter are my heroes!!   I've been in PWS hell since I found out about this show and read this msg board.  See, I am the father of a 4 year old girl with PWS.  Some days are OK, but some days are like these past 2 when I think about Mirabelle and 300 lb 13 yr olds and how it must feel to be hungry ALL THE TIME. 

But there have been some hopeful messages on this board too - and yours tops the list.  Your daughter is 23 and weighs 125 lbs!  That's amazing.  Ever since my daughter was diagnosed I've been searching for what I call 'PWS succes stories'.  And I've found they are few and far between.  One I recently learned about is a young woman about the same age as your daughter who has recently graduated college with a dual major!!  This gal struggles with her weight for sure, has had lots of support from family and friends, but she is a hero to me. 

I hope to be able to talk to you off line to see what your 'secrets' are.  If u haven't written a book yet, it's time to get out the word processor!  There are lotsof parents out here ready to read it.

My best to you and your daughter.
My brother has PWS and is 37 years old.  He is currently 4'10" and 140 lbs.  That is not "skinny" but it is healthy.  Jon has been in his own apartment living "independently" for over 10 years.  I go to Jon's apartment about 2-3 times a day to set out his meals which are in a locked fridge.  I do all of his money management and food shopping, of course.  Jon is happier than he ever has been and I know fully functioning people who aren't as successful as Jon is at living independently.  He is one of the most inspirational people I know and even though there is a "team" of people helping Jon to live on his own, Jon is the one ultimately determining his success.  A supportive, loving family is key to these individuals...and most importantly, PATIENCE!!!  Prader-Willi people can be successful when given the right tools.   Jesland
 

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November 4, 2005, 2:22 pm PST

Bothered by Mother's Reaction to Child's Behavior

After watching the show yesterday, I felt compelled to write to the show.  I have never had the instinct to write to a show before, but something told me that this was something that needed attention.  I am currently a special education teacher in Kansas and I have a student with PW in my classroom.  He is definitely not the typical person that I have met with PW.  Although I find that each individual with disability is exactly that, an individual. 

It made me very uncomfortable to watch Nichelle's behavior as she dealt with her child.  Savannah does demonstrate a lot of behaviors that need to be addressed.  Although, there should be support coming from somewhere.  As a special educator, I am constantly giving parents support in their everyday lives.  A lot of help with discipline starts at the school.  If the school could give her support in ideas that might work, she might find that things might start to improve.  There isn't a cure all for everybody, but there are definitely strategies that can be used.  If there is a seamless transition form school to home, then Savannah will definitely be given the chance to thrive.  The most difficult part of this whole episode to me was that Nichelle was abusing her daughter in my eyes.  Nichelle definitely has anger issues which need to be addressed because whether her daughter is "normal" or has special needs, I believe she would react the wrong way to any behaviors demonstrated.  I understand that parents go through denial when their child is diagnosed with a disability, but the best thing they can do for their child and themself is to tackle it head on and it could be a world of help.  I hope that Nichelle takes the initiative to help herself as well as Savannah. I wish her the best of luck in the future. 

 

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