Guest guest Posted April 21, 1998 Report Share Posted April 21, 1998 Ken, How frustrating to be on the other side trying to help people and they won't let you! S. Frustration >From: mitodad@... > >Doc Hirsch needs some help, > >Last year I vented about a patient that didn't seem to want to follow what I felt was a reasonable plan. Well, now I'm having problems with my suspected mito family. Pt has a definite acquired microcephaly due to malnutrition and has been on a proverbial rollercoaster with regards to wt. I strongly feel that pt needs tube feedings to optimize whatever brain growth we can get beyond the age of 2 yrs (she had her 2nd birthday about a month ago). > >Grandparents feel that she's going to become a guinea pig and therefore, should find a new doctor - being very non-helpful/supportive. I spent 6 hours on phones last week trying to get NG feeds going and a parent has refused this. I had a conference with the parents today, and explained why I felt that we need to be as aggressive as possible. Willing to see about trying things depending on wt next week (down 7 ounces last week, up 9 ounces this week, and if not doing very well next week will go with NG). I also said that I'd understand being frightened about the situation, etc, so we'll see how things go. I realize that others may not see the urgency in finally getting a diagnosis (yeah or nay), but hope that things will start becoming more of a team effort. Family is definitely starting to feel the " strange looks " from immediate family, so who knows what they're getting from the outside world, too. > >Thanks for listening. > >Ken > > >------------------------------------------------------------------------ >Did you know that ONElist hosts some of the largest lists on the Internet? >http://www.ONElist.com >Our scaleable system is the most reliable free e-mail service on the Internet! >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 1998 Report Share Posted April 23, 1998 , what a wonderfully innovative idea, hooray for you! S. Re: Frustration >From: Arrants@... > >Hi, Ken -- > >Sometimes it helps for family members, individually and/or as a group, to be >able to talk over their fears and concerns with someone not directly involved >with the medical decisions. These fears may be rooted in more than the >immediate medical situation. If there are some therapists in the area that >you'd feel comfortable suggesting to the family, they might be of help. > >A lot of people are hesitant to go to a therapist for any reason ( " I'M not >crazy!! " ), but sometimes the way the idea is presented can make a lot of >difference -- for instance, the observation that this kind of consultation >has been found useful for patients' families facing difficult decisions. A >therapist who's already on their insurance plan's provider list might be a >good bet, too, because then therapy likely would be more affordable for a >family already in crisis and apparent denial. That way, too, the therapist >will have had to present sufficient credentials. > >A counselor's perspective -- > > > > > >------------------------------------------------------------------------ >Show mom you love her. Check out our great Mother's Day Gifts! >14K Gold and gemstone jewelry, leather and cloth wallets and purses, >gardening, gourmet, kitchen, more! Free Shipping in the US! > http://www.onelist.com/ad/shoptheglobe5 >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 1999 Report Share Posted April 21, 1999 In a message dated 99-04-20 22:32:28 EDT, you write: << I also said that I'd understand being frightened about the situation, etc, so we'll see how things go. I realize that others may not see the urgency in finally getting a diagnosis (yeah or nay), but hope that things will start becoming more of a team effort. Family is definitely starting to feel the " strange looks " from immediate family, so who knows what they're getting from the outside world, too. Thanks for listening. Ken<< Dear Ken: I feel your pain, so to speak! It must be hard to watch this happend and be helpless to do anything beyond what the parents are authorizeing. I'm truly srry you have to experence this frustration! You might want to let them talk to others who's children have gone through this by refering them to the MitoList. They might feel more comfortable and less like their child is a gunie pig knowing that others are in their same boat! If they have no computer access they might use your office email with the aid of your secretary or nurse. I know this seems time consumeing and beyond what might be considered average duty, but if you can educate the parents rather than trying to assume that just because you have a doctors degree they should trust you, you may find them trying, in turn, to educate their extended family - and everyones happy! Again, so sorry you must go through this So nice to see the obvious concern you have for this child and their family! Lynnie Wife, Mother, Advocate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 1999 Report Share Posted April 21, 1999 Dear Ken For what its worth, as a mito mommy I strongly feel that we left it much too late to start NG feeds with Angus. We procrastinated for two years, continuously battling to keep his weight stable and to push through the appetite failure which is such a common and potentially dangerous feature of mito. For all that time FOOD was a huge and traumatic issue in our house. We were too afraid to make the decision because it felt like another big step downwards. I understand this family's hesitation, but feel free to use our experience as an example of 'how not to handle the problem' if it will help. We were forced into NG feeds a year ago when Angus suffered oro-facial seizures that temporarily knocked out his swallow and gag. The benefits of good quality, consistent nutrition were immediately apparent, but we lost a lot of ground before we learned that lesson. We've continued the NG feeds since that time and I honestly don't think he would have survived his dose of Influenza A last year if we hadn't had NG feeding well-established. He has gained several pounds and grown several inches. We'd also have benefited from a doc who was prepared to be more pro-active about giving us information, support and advice. Have you talked to this family about getting net access? I think the varied experiences on these lists would be persuasive for them, as it was for me a year ago. Lynne (Mummy of Angus, nearly 7, oxphos disorder, and Ally, forever 4 in heaven, due to depakote toxicity) ______________________________ Reply Separator _________________________________ Subject: Frustration Author: mitodad@... at SMTPGateway Date: 22/4/1999 2:26 From: mitodad@... Doc Hirsch needs some help, Last year I vented about a patient that didn't seem to want to follow what I felt was a reasonable plan. Well, now I'm having problems with my suspected mito family. Pt has a definite acquired microcephaly due to malnutrition and has been on a proverbial rollercoaster with regards to wt. I strongly feel that pt needs tube feedings to optimize whatever brain growth we can get beyond the age of 2 yrs (she had her 2nd birthday about a month ago). Grandparents feel that she's going to become a guinea pig and therefore, should find a new doctor - being very non-helpful/supportive. I spent 6 hours on phones last week trying to get NG feeds going and a parent has refused this. I had a conference with the parents today, and explained why I felt that we need to be as aggressive as possible. Willing to see about trying things depending on wt next week (down 7 ounces last week, up 9 ounces this week, and if not doing very well next week will go with NG). I also said that I'd understand being frightened about the situation, etc, so we'll see how things go. I realize that others may not see the urgency in finally getting a diagnosis (yeah or nay), but hope that things will start becoming more of a team effort. Family is definitely starting to feel the " strange looks " from immediate family, so who knows what they're getting from the outside world, too. Thanks for listening. Ken ------------------------------------------------------------------------ Did you know that ONElist hosts some of the largest lists on the Internet? http://www.ONElist.com Our scaleable system is the most reliable free e-mail service on the Internet! ------------------------------------------------------------------------ Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 1999 Report Share Posted April 21, 1999 Ken, do you think they are on they list and see you posting about them? Cheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 1999 Report Share Posted April 21, 1999 In a message dated 99-04-21 08:16:25 EDT, you write: << Basically, the ball is in the parents' court so to speak, I've done everything that I can to help them with their predicament. Ken >> Dear Ken: Then you should feel good that you have done all you can! Again, Ken I think from what you have told us, that you have done a great job. The ball, and the consiquences, are in the familie's court! Job well done, Lynnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 1999 Report Share Posted April 22, 1999 Hi, Ken -- Sometimes it helps for family members, individually and/or as a group, to be able to talk over their fears and concerns with someone not directly involved with the medical decisions. These fears may be rooted in more than the immediate medical situation. If there are some therapists in the area that you'd feel comfortable suggesting to the family, they might be of help. A lot of people are hesitant to go to a therapist for any reason ( " I'M not crazy!! " ), but sometimes the way the idea is presented can make a lot of difference -- for instance, the observation that this kind of consultation has been found useful for patients' families facing difficult decisions. A therapist who's already on their insurance plan's provider list might be a good bet, too, because then therapy likely would be more affordable for a family already in crisis and apparent denial. That way, too, the therapist will have had to present sufficient credentials. A counselor's perspective -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 1999 Report Share Posted April 25, 1999 Just want to thank everyone for your input. I'll keep you posted as to what happens next Tuesday when the family comes back in. Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Hi Rita. I'm so sorry! I'm not familiar with your history, but have you been ttc for 4 months or just doing FAM for the last 4 months and ttc longer? Anyway, I hope your doctor helps! Good luck. Tara BU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Hi Rita. I'm so sorry! I'm not familiar with your history, but have you been ttc for 4 months or just doing FAM for the last 4 months and ttc longer? Anyway, I hope your doctor helps! Good luck. Tara BU Quote Link to comment Share on other sites More sharing options...
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