Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 I know exactly what you mean by the doctors looking at you like you're from another planet!!! We've had similar experiences with my daughter (who's now 6). When she was a newborn we bottle fed her with great difficulty. She was in and out of the hospital with lots of " experts " (and lots of tests) trying to figure out why she had severe feeding problems. At two months old, she was sent home with an NG tube until at 4 months she had a G-tube put in. During this time she also had problems with formula tolerance. She was treated for reflux even though they weren't really sure that was the problem. I think they didn't know what else to do and they wanted us to feel like they were doing something for her. We were fortunate because when she was older she could drink from a cup and she would eat baby food, then table foods so she had her G-tube removed. But then she started coughing and gagging with certain foods (seems like it was the textures of the food). She would cough so hard that she would sometimes vomit. They did a swallow test which was normal. She seemed to outgrow that problem too except that lately I've noticed her coughing more when she eats. Makes me wonder what's going on. During this time we certainly had our share of " medical professional " who thought we were absolutely nuts!! So I can relate to that. It wasn't until started having cyclic vomiting at age 4 that the possibility of " mito or metabolic " was mentioned. She's been going through testing for over a year now but we still don't know anything. Very frustrating. We have an appt. next week with the metabolic specialist she starting seeing in June. Then she has an appt. with Dr. Cohen on Oct. 29th. Hopefully we'll find out something soon. Sorry for the long story. Just wanted to let you know you're not alone. And I know for a fact that a lot of others on the list can relate to your treatment from the doctors and nurses. You must have had at least one dr. who took you seriously since a mito diagnosis is being pursued. Hang in there. Sharon > My 14 month old daughter has been in and out of the hospital all her > life. We still don't have a diagnosis but they are leaning towards a > Complex IV deficiency. She is relatively normal but is delayed in her > motor development. She is not walking yet but is crawling and pulling > herself up on the furniture. Her feeding and speech is probably the > most delayed. She has no teeth and is still on pureed foods. She ca > not handle lumps and gags. Drinking is another issue. She will not > drink anything from a bottle unless she is sleeping. Is there anyone > out there with a similiar dilemma? Everytime we go to the hospital > and explain this to the doctors and nurses they look at us like we > are from another planet. > > Also would like to hear/share stories of other children with Complex > IV deficiencies. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2002 Report Share Posted October 11, 2002 Have you had a ph probe study done to rule out reflux? When you mentioned that she would only drink from a bottle when asleep, that reminded me of a discussion on a reflux board I was a member of. One of the tricks parents used to feed their reflux babies was to offer the bottle when they were sleeping. Just a thought. I hope you get some answers soon. from Maine Mom to Johanna (7), Jareb (3), and Jessalyn (12 mos) w/unspec. mito, global delays, vision impaired, g-tube, fundo, hypotonia and severe neurological/GI issues Help! > My 14 month old daughter has been in and out of the hospital all her > life. We still don't have a diagnosis but they are leaning towards a > Complex IV deficiency. She is relatively normal but is delayed in her > motor development. She is not walking yet but is crawling and pulling > herself up on the furniture. Her feeding and speech is probably the > most delayed. She has no teeth and is still on pureed foods. She can > not handle lumps and gags. Drinking is another issue. She will not > drink anything from a bottle unless she is sleeping. Is there anyone > out there with a similiar dilemma? Everytime we go to the hospital > and explain this to the doctors and nurses they look at us like we > are from another planet. > > Also would like to hear/share stories of other children with Complex > IV deficiencies. > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 I tried to bring up the article and when I got to Genetic Doctors it says it contains information that can't be used. Any suggestions? Thanks Kathy Grandma to Audrey, 14mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2002 Report Share Posted November 5, 2002 Don't know why that would be the case. I will look into it for you. At present I am experienceing world wide web or ISP based problems of some kind, so I can't access anything other then emails myself!! Regards, Re: Help! I tried to bring up the article and when I got to Genetic Doctors itsays it contains information that can't be used. Any suggestions?ThanksKathyGrandma to Audrey, 14mosPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Marla, does the doctor that did the psyc eval know all the past therapy you've had addressing this? I too was told to lose 28# prior to surgery. It sounded like going to the moon! I knew that no way would I be able to do that....if so, then why did I need the surgery? Well, after 11 months I lost 7#, but it didn't stop the surgery. The reason they recommend 10% is to make the surgery easier and safer....more room to move around inside. Once I understood this, I had more motivation to lose some. I totally relate to your childhood and how it has affected you. Your post is exactly what I would have written about myself. I had 11 years of therapy, that actually began as a weight loss tool. Learned a lot about myself, and changed a lot of coping skills, but certainly didn't affect my weight. That's where my question comes in.....does this doctor know the therapy you've already had? If so, I don't understand his opinion that you need therapy. My psyc eval was done by a psychiatrist that I've been seeing for almost 10 years (thankfully I'm over the hard part of therapy, and now only see him every 4 months), and when I told him, he thought it was a great idea, and supported me totally. He knows what I've done to try to lose weight...and keep it off. The weight clinic wanted to send me to their doctor, but I told them I already had one that knew me and could do it. It didn't need to be a specific doctor. This eval is what the insurance company wants. Do some research about your specific situation and find out if you can use " your " doctor if you still have access to him/her. Or educate the current doctor as to past therapy. Good luck! Joan LAP RNY 11/18/03 Dr. Higa, Fresno, CA 282pre-op/275surg/236/140 Well that is not my reason for writing. My problem,...the doctor that did my psy eval, says I need therapy to deal with my reason for over eating. And he says I need to loose 10% of my body weight before surgery. My weight now is 261, so 10% would be 26 lbs. Have you folks been told the same? I really am new at this, so please give me feed back. A little background. As a child, I was a victim of sexual abuse. He thinks this is my reason for over eating. Yes, it has some to do with the problem. I have been through years of therapy and I still have an eating disorder. When he told me they would not approve the surgery until I went through therapy and lost 26 lbs, first I cried then I ate and gained 10 lbs in 2 weeks! Any information would be greatly appreciated. As a result of the abuse, I also have PTSD. I am no longer a victim, but a survivor, so I know I can survivor this also. Marla Sloan Pre-op Dr. Murr TGH 261/135 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Too bad it's not the other way around. I could gain 10 percent in 3 days or less!!!lol I am sitting here waiting on my mom to pick my kids up so I can go to doctor!! Made my list!! I heard the doctor looked good too! That makes it so much harder!! LOL > Marla, does the doctor that did the psyc eval know all the past therapy > you've had addressing this? I too was told to lose 28# prior to surgery. > It sounded like going to the moon! I knew that no way would I be able to do > that....if so, then why did I need the surgery? Well, after 11 months I > lost 7#, but it didn't stop the surgery. The reason they recommend 10% is > to make the surgery easier and safer....more room to move around inside. > Once I understood this, I had more motivation to lose some. > > I totally relate to your childhood and how it has affected you. Your post > is exactly what I would have written about myself. I had 11 years of > therapy, that actually began as a weight loss tool. Learned a lot about > myself, and changed a lot of coping skills, but certainly didn't affect my > weight. That's where my question comes in.....does this doctor know the > therapy you've already had? If so, I don't understand his opinion that you > need therapy. My psyc eval was done by a psychiatrist that I've been seeing > for almost 10 years (thankfully I'm over the hard part of therapy, and now > only see him every 4 months), and when I told him, he thought it was a great > idea, and supported me totally. He knows what I've done to try to lose > weight...and keep it off. The weight clinic wanted to send me to their > doctor, but I told them I already had one that knew me and could do it. It > didn't need to be a specific doctor. This eval is what the insurance > company wants. Do some research about your specific situation and find out > if you can use " your " doctor if you still have access to him/her. Or > educate the current doctor as to past therapy. Good luck! > > Joan > LAP RNY 11/18/03 > Dr. Higa, Fresno, CA > 282pre-op/275surg/236/140 > Well that is not my reason for writing. My problem,...the doctor > that did my psy eval, says I need therapy to deal with my reason for > over eating. And he says I need to loose 10% of my body weight > before surgery. My weight now is 261, so 10% would be 26 lbs. Have > you folks been told the same? I really am new at this, so please > give me feed back. A little background. As a child, I was a victim > of sexual abuse. He thinks this is my reason for over eating. Yes, > it has some to do with the problem. I have been through years of > therapy and I still have an eating disorder. When he told me they > would not approve the surgery until I went through therapy and lost > 26 lbs, first I cried then I ate and gained 10 lbs in 2 weeks! Any > information would be greatly appreciated. As a result of the abuse, > I also have PTSD. I am no longer a victim, but a survivor, so I know > I can survivor this also. > > Marla Sloan > Pre-op > Dr. Murr TGH > 261/135 > > > > Quote Link to comment Share on other sites More sharing options...
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