Guest guest Posted May 30, 2003 Report Share Posted May 30, 2003 , Welcome to the group. I am sorry to hear of Shelby's troubles. I do know that Lexi has periodically had high ammonia levels but they hve always gone down. But I'll keep you all in my thoughts today. ruth mom to Mitch (8) and Lexi (5) both mito affected Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Welcome Deb! How old is your son? Scoggins Mom to Shenan and 3 others Grandmother to Riley & Corbin and 11 others suspected mito in family members New to the group > Hello, > > I am new to this group and am looking forward to learning from all > of you! My son has recently been diagnosed as having a mitochondrial > disease, we just don't know which one yet. His symptoms include > major developmental delays, involuntary movements, poor head > control, and cyclic vomiting. Other things also but those are the > main things. Any advice or places to read more would be greatly > appreciated! Thanks and again I look forward to learning more > > Deb > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Hi Deb, Welcome to the group, just sorry Mito has to be the way to meet a wonderful bunch of new people. My name is Kathy. I have a 22 month old granddaughter, Audrey, with Mito, she just happens to be the apple of my eye. She has unspecified Mito. At this time she can barely hold her head up, very poor muscle tone, G-tube feed, seizures, does not speak, trouble focusing with her eyes, developmentally delayed, but we are not sure how much because she is nonverbal, severe reflux, unable to sit up, roll over, or do any of the other things a normal child her age can do. We know that our time with her here is limited and we make the most of everyday. You will get to know many wonderful people on this group. They will laugh with you, cry with you, give you wonderful advice, and just plain be there for you when no one else can possibly know what you are going through. How old is your little boy? When and how was he diagnosed? Where do you live? Do you have any other children? Hope to hear more from you soon. I have been rather quiet lately but I am still out here. I read the posts everyday and pray for all. Kathy, grandma to Audrey, 22 mos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Hi and welcome to this great group. Trust me you will learn more sometimes from this group than most health professionals. Some of the children are very server, and some mildly. The main thing is you have to keep an open mind at all times, or this disease will tear you up. Don't ever think you have a stupid question, the only stupid question is the one that is never asked OK?? Take care and ask away, good luck. Patty Kraynik Josh age 7 Mito Myopathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Welcome to a group everyone wishes they never had to be a part of. This is a great group of people here who have been my life line since my daughter was diagnosed Nov. 2001. Feel free to ask anything, share anything or just vent, we have all done plenty of it all and everyone here understands and does not mind a bit. Look forward to getting to know more about you and your family. Horsley Mom to 13 Brittney 17 , Alabama New to the group Hello,I am new to this group and am looking forward to learning from all of you! My son has recently been diagnosed as having a mitochondrial disease, we just don't know which one yet. His symptoms include major developmental delays, involuntary movements, poor head control, and cyclic vomiting. Other things also but those are the main things. Any advice or places to read more would be greatly appreciated! Thanks and again I look forward to learning more :)DebPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Welcome. The UMDF site is a good place to start along with the Muscular Dystorphy site. Also I found just reading old posts here provided me with a lot of useful information. Post your questions and someone is bound to have an answer or at least experienced what you are. Geri-Anne, Wyatt, Complex I > Hello, > > I am new to this group and am looking forward to learning from all > of you! My son has recently been diagnosed as having a mitochondrial > disease, we just don't know which one yet. His symptoms include > major developmental delays, involuntary movements, poor head > control, and cyclic vomiting. Other things also but those are the > main things. Any advice or places to read more would be greatly > appreciated! Thanks and again I look forward to learning more > > Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Hi Deb and welcome. I was wondering where your son was diagnosed and how old is he? -- New to the group Hello,I am new to this group and am looking forward to learning from all of you! My son has recently been diagnosed as having a mitochondrial disease, we just don't know which one yet. His symptoms include major developmental delays, involuntary movements, poor head control, and cyclic vomiting. Other things also but those are the main things. Any advice or places to read more would be greatly appreciated! Thanks and again I look forward to learning more :)DebPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 , My son has been diagnosed at Children's Hospital of Wisconsin. Well kind of diagnosed considering we don't know exactly what the disease is, just that it is a mitochondrial disease. He had surgery on his eyes on the 23rd of May and at that time another muscle biopsy was done and so I am hoping for more results from that. I saw where there is a doctor in Atlanta Ga that is supposed to be one of the best and if we don't hear anything definite soon we are thinking of going to see him. Zak is 5 but developmentally still an infant, no crawling, talking, sitting, etc and he still eats pureed foods. Thanks for the welcome everyone Deb New to the group Hello,I am new to this group and am looking forward to learning from all of you! My son has recently been diagnosed as having a mitochondrial disease, we just don't know which one yet. His symptoms include major developmental delays, involuntary movements, poor head control, and cyclic vomiting. Other things also but those are the main things. Any advice or places to read more would be greatly appreciated! Thanks and again I look forward to learning more :)DebPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Welcome Deb! How old is your son? Scoggins Mom to Shenan and 3 others Grandmother to Riley & Corbin and 11 others suspected mito in family members Boy this is going to be very confusing! LOL... deb #1...mom to , forever 6 (07.04.96-05.26.03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Hi Deb! Welcome to the group. I have been a part of this group for just a short time and already have learned so much. Every person in this group shares your pain and frustration. I have felt embraced by everyone in this group and I hope you will soon feel the same. Please let us know how your son was diagnosed with his mitochondrial disorder and the process you have taken so far. The United Mitochondrial Disease Foundation website is an awesome way to learn about the disorder. Plus, you will find many knowledgable people within this group. (Unfortunately, I am not one of them...) Again, welcome to the group! Kim - Mom to and Lindsey (20 months Complex I and IV) Delaney (6) and Mason (3). Husband - Matt New to the group Hello,I am new to this group and am looking forward to learning from all of you! My son has recently been diagnosed as having a mitochondrial disease, we just don't know which one yet. His symptoms include major developmental delays, involuntary movements, poor head control, and cyclic vomiting. Other things also but those are the main things. Any advice or places to read more would be greatly appreciated! Thanks and again I look forward to learning more :)DebPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Kathy, Your granddaughter sounds like such a little cutie! Zak has had so many different tests lately, ugh! The one that they are focusing on though is his muscle biopsy where they found long chain fatty acids in the muscle. To be honest I am still trying to learn about this and finding sites that speak in "english" is very hard! He is 5 and actually has improved over time instead of getting worse, not sure if that will continue or not. We're in WI and he is being seen at Children's Hospital of Wisconsin. So far he is our only baby, we adopted him at 2 1/2 months old and at that time his diagnosis was very opposite of what we're finding now, Weaver's Syndrome is what we were told. Then when we got him we finally got a diagnosis of CP and then athetoid CP and now the mitochondrial disease so it has been stressful over the past years. I just want to know what it is that is wrong with my little guy so I know what to do for him. I am so thrilled to be a part of this group...thank you everyone Deb, mom to Zakary, 5 yrs old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2003 Report Share Posted June 9, 2003 Deb, I am so glad to hear that Zakary ios doing better, I hope that is a trend he keeps. Even though the miricale I prayed for Aspyn didnt happen, I still believe in them and hope that the children and adults on this list will start experiancing them. If htere is anything I can do for you please let me know. You can also e-mail me privatly to. I live in North Dakot, not to far from you, just two states you and Zakary will be in my thoughts and prayers. Wayne and BlockMommy and Daddy of Aspyn RemarNovember 14, 2001 to July 15, 2002Unknown Mitochondrial Disease, Lactic Acidosis, and CardiomyopothyPlease visit Aspyn at www.aspynblock.com or www.rememberinghannah.co.uk/aspyn.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Hi , Kathy her, grandma to Audrey, 22 mos. I was just wondering why they tested your younger child and not your son. It sounds to me like there needs to be some investigating done on him. Who is your mito doc? Have they seen your son? Also, welcome aboard. Are you ready for the roller coaster ride of your life? That's OK, none of the rest of us were either. Hang on, it's going to be a very bumpy ride. At least here you have many who are on the same ride so they understand when no one else seems to. Hope to hear from you soon. Kathy, grandma to Audrey, 22 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Has insurances companies been paying for the cooling vest? We were able to get out insurance company to pay for it although they have not payed for a lot of other things (mito cocktail included). It did take an appeal and a letter from the doctor though. Holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Hi Deb: Where in Wisconsin do you live? My name is Nerenhausen and I (or I should say we meaning my husband Sorensen and I) have a 5 year old daughter named Leah who is not officially diagnosed but suspected mitochondrial myopathy possibly gluteric aciduria II. We go to Madison for Leah's stuff except we see a wonderful ped. neurologist in Milwaukee. Ask away with questions. We are all here for you. Nerenhausen mom to Leah, , and ZaksMom wrote: Kathy, Your granddaughter sounds like such a little cutie! Zak has had so many different tests lately, ugh! The one that they are focusing on though is his muscle biopsy where they found long chain fatty acids in the muscle. To be honest I am still trying to learn about this and finding sites that speak in "english" is very hard! He is 5 and actually has improved over time instead of getting worse, not sure if that will continue or not. We're in WI and he is being seen at Children's Hospital of Wisconsin. So far he is our only baby, we adopted him at 2 1/2 months old and at that time his diagnosis was very opposite of what we're finding now, Weaver's Syndrome is what we were told. Then when we got him we finally got a diagnosis of CP and then athetoid CP and now the mitochondrial disease so it has been stressful over the past years. I just want to know what it is that is wrong with my little guy so I know what to do for him. I am so thrilled to be a part of this group...thank you everyone Deb, mom to Zakary, 5 yrs old Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 PLEASE STOP SENDING Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2003 Report Share Posted June 10, 2003 Deb, My name is Anne and I live a bit west of Milwaukee, WI. I have 4 kids age 6, 10, 11 and 16. All have Mito though the 2 boys (6 yr. and 11 yr.) are very medically fragile and the 2 girls are very mildly affected. We live at Children's Hospital of WI - therapy, docs, infusion clinic, and the 4 west nursing unit. The boys also see an awesome endocrine doc at UW in Madison. Who diagnosed your son? Welcome to the group. Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2003 Report Share Posted June 11, 2003 Welcome ! Kathy said it well, hand on its gonna be a long hard ride. But we are all here for you so let us know how we can help. Horsley Re: new to the group Hi ,Kathy her, grandma to Audrey, 22 mos. I was just wondering why they tested your younger child and not your son. It sounds to me like there needs to be some investigating done on him. Who is your mito doc? Have they seen your son?Also, welcome aboard. Are you ready for the roller coaster ride of your life? That's OK, none of the rest of us were either. Hang on, it's going to be a very bumpy ride. At least here you have many who are on the same ride so they understand when no one else seems to.Hope to hear from you soon.Kathy, grandma to Audrey, 22 months Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 Hi Deb my name is Patty Kraynik, we farm for a living and have 4 boy's. It's one of our twins that has Mitochondrial Myopathy, dx from a muscle biopsy done at Children's in Milwaukee, WI. We live in Denmark. Josh was first dx with developmental delay's, then mild CP. then PDD-NOS then some type of a myopathy. It's been quite a ride, and I don't see us getting off it to soon. You've found the right place, these mothers really take some of the mystery out of this disease, so just ask away. Good luck.... Patty Kraynik Josh- age 7 Mito Myopathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2012 Report Share Posted December 4, 2012 I'm new to this group.     I have been told for about six years by my therapist that he thinks my mother has a personality disorder, and more specifically BPD with some narcissism traits. It was only a couple of days ago that I actually " heard " my therapist. It was very horrible and awful to hear, " You are never going to get what you need from your mother. You will have to get it from someone else. She is incapable of giving you what you need not because your expectations are too high but because she can't give those things to you. "  I initially went to therapy because my father died and I had a hard time dealing with it. My mother was drinking heavily at the time and very physically abusive toward me (I was 22 at the time. I don't know why I didn't just leave) and I just felt very confused. I thought there was something seriously wrong with me. I felt confused all the time, felt like I was a bad person. I felt like I wasn't being a good daughter. My mother criticized me, saying that I didn't even love my father so I shouldn't grieve, I shouldn't cry. My mother's moods affected me deeply. My mother and I would have terrible arguments, but afterward she would act almost satisfied, like she was filled to the brim. I, on the other hand, would be devastated and exhausted for at least two weeks, being completely shocked as to what happened but being thoroughly convinced that I was in the wrong, yet not knowing how or in what way.  One time my mother got drunk (which is usually when these fights happen) I had to leave the house and she destroyed practically everything in my room. I got home and was shocked at the state of my room and started to cry. She came in and yelled at me that it was just stuff and why was I crying over stuff, etc. She replaces these things later when she feels bad but they don't feel like they are mine. In fact, they just remind me of what happened. I usually punish myself because I think I did something wrong, but I just don't know what it is that I did wrong.  I never felt nurtured by my mother. I still don't. I feel terrified of her. I feel trapped by her. I feel like I can never rid myself of her. I feel like she won't allow me to grow up and let me live my own life.  I thought my mother's behavior was because my father died. However, talking to my therapist, I have actually started seeing a pattern in her behavior even when I was a child.  One example was when she, my stepfather and I were in a department store getting a TV (or something similar) when I was a kid and her shirt was unbuttoned considerably, very much showing her breasts. I told her about it for her best interest because I didn't think she wanted to be exposed that way. She then became angry with me, acting like I was being rude, that I was being disrespectful and judgmental of her. She said, " So what if I do that? If it gives me a few dollars off of something... " I ended up apologizing to her. I didn't understand what I did wrong.  There are ton of examples where things happened and I just didn't understand what I did wrong. It's only been literally the past couple of days where I have understood that maybe it's not me that's  the problem (yes, maybe. I guess I'm still in denial).  Anyway, I really need as much support as possible as I don't know what to do or how to get away from her or how to protect myself.   Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2012 Report Share Posted December 5, 2012 Again welcome. IT'S NOT YOU IT'S HER. You can get free of her. It just takes time and finding ways to build yourself back up. I used to have such an addiction to the drama and excitement of these maniacs. Now they turn my stomach! I'm starting to think of it as: I've heard people say they were addicted to smoking. It was so hard to quit but now the idea of it disgusts them. I think there's something like that for us children of monsters. The good news is that we can see them and recognize them once we're on the other side. I don't think " normal " people can identify them like we can. > ** > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2012 Report Share Posted December 5, 2012 I just don't know how to get free of her. I'm actually quite afraid of her. When she's angry, she can be quite violent. I know I eventually will have to do this, so I'm trying to prepare myself to separate myself from her. This is definitely easier said than done for me. > > > ** > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2012 Report Share Posted December 6, 2012 I feel for you; I was physically afraid of my nada for a long time, and I was " trauma bonded " to her as well. It shames me to admit it, but if my parents hadn't physically moved away from *me* when I was in my mid-thirties I probably would have remained overly-enmeshed with them until they died. (My parents were virtually my only social outlet.) You are still a young person. (I'm 60; anybody under 40 is a young person to me!) I urge you to take whatever steps you can to start planning your " escape " , your independent adult life, while you still have a chance to have whatever it is you want out of life: a dating partner, a career, a spouse, perhaps children. Whatever your version of a happy life is. Have you started reading some of the books that are available now about borderline pd and about overcoming co-dependency? Knowledge is power, and its empowering. You can change the trajectory of your life, now that you are an adult. You were not born to be your mother's " mommy " , her substitute spouse, or her live-in servant for life. The hardest part for us KOs, seems to me, is overcoming our fear. We've been trained from birth to fear " upsetting " our bpd parent and bringing their wrath down on us, and we are trained to accept without question the heavy load of stinking guilt they shovel on us, that they tell us we are supposed to carry for them. We are trained or conditioned to fear " what other people will think of us " if we displease our bpd parent(s). The parent with bpd destroys her child's self-esteem and belief in their own goodness, their own right to even HAVE a separate, independent adult life, and whether these bpd parents do this subconsciously or deliberately doesn't matter. The fact is that they do this deed for their own benefit: so that you, their child, their possession, will never leave them. My Sister benefitted a great deal from finding a therapist who had had a borderline pd mother himself, so he was able to help my Sister gain a great degree of emotional detachment from our nada WITHOUT GUILT. Therapy helped my Sister push her way out from under the heavy load of misplaced, inappropriate guilt that our nada had shoveled onto her. This allowed Sister to maintain a very limited contact with our nada in a kind of supervisory capacity and with the emotional detachment of a professional care-giver; this healthy emotional detachment was like a shield, deflecting nada's constant stream of criticism and manipulation and emotional " vampirism " . I hope you will begin to take a few small but real, concrete steps toward gaining your own psychological independence from your role as your nada's live-in nanny/servant/whipping boy (or girl.) At the college you attend, I'm betting that there are services there for students that include psychological counseling either for free or at low cost. Each of us deserves the chance to have an independent, responsible, joyous adult life, to make our own relationships and create our own families; we each have our own adventure, our own journey through life to explore: that is the birthright of every child born. Don't let your nada take your birthright away from you. -Annie > > > > > ** > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2012 Report Share Posted December 6, 2012 Hi there. Thank you for responding. Yes, I have started reading books. Actually, I'm in grad school to become a therapist. I was told by my therapist six years ago that he thought my mom had a personality disorder, and when I started my program and we were learning about personality disorders I actually thought my mom sounded a lot like BPD, but dismissed it. It's so easy to see disorders in other people when you're learning about them! Haha. We're always told to make sure to not diagnose people in our lives, so I just dismissed it. Additionally, I just thought she was acting so erratically because of environmental stressors (like Dad's death, my brother going to war, etc.) but it's only been recently that I have had an epiphany. I was sexually assaulted when I was 21. She found out. She says she " dreamed " it, however I'm pretty sure she found it from a blog I was posting on the Internet (which makes me worry about even posting on this board!) and she got mad at me! She got mad that I never told her! She got mad that I wouldn't give her details. I had to comfort HER!! She was yelling at me and I had to leave the house. I thought, " this is crazy! This can't be what mothers would do! " I felt completely violated all over again. And since then, I have day by day realized that there really is something wrong with my mom. I am a little upset, because all this time I thought I was severely messed up, that it was ME who had severe problems (my mom pretty much convinced me I had severe issues. She never stated it, but definitely insinuated it, would never take responsibility for anything she ever did and because she's my mom I just thought that of course it's my fault!). I hate that I have to hide parts of my life from her, but I do. I really want to just pack my bags and drive off and leave her, but I can't really do anything like that until I graduate which is in at least six months. I'm actually really happy I went to grad school for psychology because it has opened my eyes to my mother. It has also opened my eyes to see how much abuse I have actually endured and it just makes me cry. I thought everybody lived this way. The thing is, if I run away she'll chase me down. She'll try to convince me that I can't live on my own. She'll try to make me scared to leave her. When that doesn't work, she'll get violent. But I have to do this somehow. I'll have to leave her. I'm very sorry for rambling, I just feel like I can finally tell people what is happening and they understand because they have been through it. If there was a group therapy class around here I would attend it, but they don't seem to have things like that around. Maybe when I get licensed (and I'm fully away from my mom) I'll start something like that. > > > > > > > ** > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2012 Report Share Posted December 6, 2012 You're still in the early stages of coming to terms with all these new realizations, and it takes time to process all this stuff. So, as our member Doug says, be gentle with yourself as you allow all this new information to sink in and integrate into your " world view. " The book that helped me the most was " Understanding The Borderline Mother. " I also suggest books about overcoming co-dependency. " Toxic Parents " gets recommended here also. Once you are able to incorporate the understanding that its OK for you to even have personal boundaries or rules that protect you from abuse, then it won't matter if your bpd mother " chases you " or ignores you, or whatever. You'll come to understand that you can't change her behaviors at all, but you can change *your* behaviors, and your feelings about your relationship with your bpd mother, and you will experience a " paradigm shift. " You wont see her or relate to her as you have done in the past, as a minor child relates to her mommy. Your perspective will have shifted, you will see her with your newly-opened adult eyes, and you will have a greater ability to relate to your mother as an equal, at eye-level: not looking up at her with fear and awe and a craving for her attention and validation. You will be ready to assume your own adult status and power, without guilt. Also: its actually stated in the description of this Group that you must post anonymously, for your own safety. So, if your nada has access to your computer that would be even more crucial for you to create an anonymous ID and anonymous e-mail address and rejoin the Group using that new identity to protect your privacy. I hope that helps. -Annie > > > > > > > > > ** > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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