Topic : 08/25 Extreme Food Obsessions

I believe that Nichelle did the right thing by contacting Dr. Phil to get help.  Every parent wants their child to be "normal" whatever that means.  I have a daughter that is mentally retarded with intermittent explosive disorder (15).  One min. she's happy, the next she's not...it could be something small that triggers it or nothing at all.  When I first heard her diagnosis, I was shocked, then I cried, then I told myself, "ok, now we can move forward to get her the help she needs and I find support."  There's a acceptance or realization of the disability/disorder, then grieving process and then you can move on to get support/help & educate ourselves.  We all also reach frustration levels especially when we are tired, so we have to take a step back, take a deep breath and then go back to your child.  We are human.  I'm grateful that Nicelle looked for and is getting help.  Lots of love and patience and reminding yourself that your child is a gift and there's a lesson to be learned...not a burden.  I know my daughter won't be independent and I've come to accept that but she has taught me so much...she's my angel...plus I have 2 other teenagers too!  Instead of saying what comes to your head...think before speaking even if you're really angry or frustrated.  Best of luck.  My thoughts and prayers are with you and your daughter. 

Hello, all... 

In watching Dr. Phil's show on Thursday about PWS there were a few things I agreed with and disagreed with.  I have a 10 year old step daughter who was diagnosed with PWS at 3 months old.  In dealing with her on a daily basis, there are similarities to the 6-year old.  She throws tantrums, but only at her mother's house.  Our home is very structured and we have a motion detector alarm system on our kitchen that has to be turned off with a code.  She knows her routine and rarely varies from it.  She also rarely throws tantrums at our house.  However, at her mother's home where they are less structured and disciplined, she throws tantrums often over very small changes in the process of getting food.  For example, if someone different than who she is used to is going to feed her, she will throw a fit.  I do not agree with Dr. Phil saying that a retarded child should never be spanked.  Spanking has been the only thing that her kept my step daughter in check.  She does not have tantrums, she is losing weight, not gaining.  She is sweet and does not talk back.  My husband only spanks her for very severe things such as lying and stealing.  When the mother of the 6-year old said that her daughter KNOWS the rules and still does the opposite anyway, I can completely relate with that.  It is hard to remember that the mental disability that these children have keeps them from knowing right from wrong when you can ask them a hundred times what the rules are and they can repeat them back to you with ease, showing that they know and understand.  How do you deal with someone who cannot even concentrate on you long enough to understand you explaining what they did wrong and why it is wrong?  Look at Maribel, the 23 year old.  Her parents did NOTHING to discipline her and look how she turned out.  She is a terror, screaming and throwing fits.  I'm sorry but just giving them all your love is not enough for these children.  Where do we stop blaming their misbehaviors on mental retardation? 

Heather 

Seattle, WA 

Nichelle, I would like to think your apology was sincere, but I'm having a hard thinking it was.  Your behavior on the show showed me what kind of person you are, a very ANGRY young girl.  I hear a lot of whining from you; you don't know what it's like, walk in my shoes, she makes me so mad, etc.  Well, I DO know what it's like, I DO walk in your shoes, and yes, my son makes ME angry as well.  He is 17 now, do you think it has been a easy road?  We got his dx when he was 5.5 yrs old, and at that time, I didn't know where to turn to.  I didn't have a computer, I felt all alone.  Did I even once THINK about hitting him?  Calling him names??  Thinking he could change his genes and be "normal"??  NO to all the above.  I figured at that time that since pws was going to be in my life, I better educate myself to know what I was dealing with.  I have learned so much, and with that knowledge, I have had to educate not only family, friends, but also teachers and even Dr's.  There is so much with pws besides the food seeking and behavior, there is the skin picking, lack of vomiting, not running a temp when sick,among other things.   

You say you went on the show because you needed help, and couldn't deal with her.  What I saw from your behavior was a attitude.  I believe you wanted everyone to feel sorry for you that your daughter was so out of control.  I think when you realized that wasn't how the audience or even Dr. Phil was going to see you, you didn't know what to do.  The tears were a nice touch, but I'm sorry, I didn't buy it for a second.  If that was me, and I really wanted help as much as you claim you did, I would of said, HELP ME, PLEASE, I don't know what to do!!  I wouldn't of made excuses as you did.  Your first post on here, before the show even aired showed me you STILL have a attitude, and this was after you had been on the show and was offered help.  Could it of been the reason you contacted the Dr. Phil show to be a guest was the free trip they offered to California?  One only wonders. 

I hope you contact Carolyn Loker.  I know her personally and she is a wonderful person.  Her daughter is a doll, and you might be able to see what/how other pws kids can be, with love and understanding.  I might run into you sometime at a meeting if you ever go to the Michigan meetings, as I live in Michigan as well.  I sincerely hope you get the help you so badly need. 

Structure is very important to kids with PWS. I commend you for providing that for your stepdaughter. However I disagree with spanking her for things such as "lying and stealing"....you DO know that it's part of the syndrome don't you? There's no difference in that and what the Mom on the show is doing -- your stepdaughter is being spanked for something that she has no control over. You said "how do you deal with someone who cannot even concentrate on you long enough to understand you explaining what they did wrong and why it is wrong" . Do you think that she makes the connection between being hit for something she already did if she can't make the connection when you explain it to her?  

Sorry, I have a child who has PWS also and I wouldn't dream of hitting him. The behavior just has to be dealt with in a different manner than with kids who don't have a genetic predisposition to do these things. 

 The police came to my house a few years ago when my daughter , then 3, screamed and cried for 3 hours and more. She was angry and after the police left my house and refused to take her with them (ha ha)and frustrated to the point that she started to pull hair out of her own head in clumps. I held her and cried and sobbed the rest of the evening. 

 That incident happened almost 3 years ago and today Sandra is a  mostly happy girl. She was diagnosed with a genetic Syndrome but the doctors had no real answers about how to deal with her.After many phone calls and me going from doctor to agency to agency and back to the doctor again, I found help that would benefit any parent or caregiver. I decided I needed some respite care for my daughter and was refereed to a  local agency called MORC.  

 The first time the workers from MORC came to our home they used the phrase "to feel safe and loved" many times and immediately I adopted this as my goal for Sandra. That first day My little girl hid in her room as soon as she saw these workers and cried if they even looked at her. Over the last year they introduced me to a man named John McGee(gentleteaching.com). He teaches that to feel safe and loved is the most important thing in anyones life and to give this gift to special people  sometimes takes some special training and work.  

 Today Sandra enjoys meeting new people and many social activities that would have triggered absolute panic in her before. She tries to say "I love you" and gives hugs and kisses regularly. i know she feels like I am her safe place to fall now and that helps her to overcome some of her "behaviors and helps me to look at all of Sandra with loving eyes. 

Nichelle please look at gentleteaching.com and get the help you need because The Creator entrusted you with that girls so that you could learn from her.    

YES! You said this very well; I absolutely agree. My family thinks that I am well because I gained weight, they say how much better I look now- this is causing me to relapse. People cannot just keep their mouths shut on this topic.  I think about weight all day long- it will not leave me. I am sitting here, still underweight, and feeling like the most worthless slob in all the world. And for those that continue to think that we are sinning, maybe we are- but don't you see that this is a battle, that we don't choose for this to be how we survive? I mean, I am not trying to kill myself or commit suicide.  Eating is just difficult and full of shame. Do you condemn those that cry for relief, that are depressed? Our feelings manifest into physical problems.  Unfortunately, we cannot hide our scars, and so the world takes this opportunity to throw stones at us.  No one with anorexia is happy!  

    Thank you so much for the great feedback I got on my post.I do not justify what Nichelle says and does sometimes.I am not in denial.I see the whole picture though.THE WHOLE picture.Do we raise our children differently? Yes.Do we akknowledge this? Yes. Does Nichelle call me and ask advice when she is at wits end? Yes. Is she taking the help Dr. Phil is offering? Hell yes she is. Is she in tears often because of all of this? Yes. Do I feel for her? Yes. Do I want to help her? Yes. Will I ever turn my back on someone who I love? No. This NIchelle I know made me watch "If these walls could talk" WHen I considered abortion when I was pregnant at 15 and helped me cope and I love my boys so much , I couldn't have imagined having made the other choice.This NIchelle I know saved my life a few times over these many years, and I would do the same for her. 

    I know as well as she does what she does wrong, as I am aware of my shortcomings, though different then hers, we ALL have problems.I ache for her because I would do anything to help.I will continue to do so. Am I living in denial? No. I see the whole situation for what it is A woman lost and alone in her own world and looking for her safe place. One she can then give her daughters (both wonderful, beautiful girls) the stability and peace she says with all her heart they deserve. 

    Thanks sooo very much to everyone who stood by my post.Also to anyone who would like to talk about our special with gifts children let me know ! MISSYP618@yahoo.com.... 

    We are all very lucky to have the kids we have.They make us better.When my son smiles I know its because he means it. When he does something most kids can do but takes longer for him he holds so much pride in himself that I can't help but glow myself.Our children are our blessings. Don't think Nichelle doesn't know that. 

I never heard  of such a thing like that before. My goodness.  

There is an area of research that has determined that uncontrolled eating from brain disorder is a result of a particular protein being absent from the human body.   

The research has been able to isolate the specific protein - Neuropeptide Y (NPY), a 36-amino-acid peptide.   

The protein to suppress brain disorder appetite is now available in injection and patch form but is available only through prescription.  The research website ( www.phoenixpeptide.com ) has an outstanding amount of technical information regarding this research.   

This direct link to the specific information to which I am referring is somewhat long but very well worth the typing and the visit  to the website :   www.phoenixpeptide.com/Catalog%20Files/NPY%20Section/PYY.htm   

This protein became available to the public only within the past year.  

Hope it helps!