Guest guest Posted December 19, 1999 Report Share Posted December 19, 1999 , Your situation reminds me of something Jeannine said once about Caitlin and her steroid dependency. Try telling the doctor the following and see if she's more open to chelation: " We can have a short and skinny child that's alive or we can have a tall dead child - I prefer the former. " I know it sounds harsh, but it might give her a new perspective. Good Luck. Terri > >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: Hair, TPN >Date: Sun, 19 Dec 1999 15:32:51 -0800 > >Ken, > Hi again. It's me, the bother. lol We are trying to get an appointment >with the metabolic docs at our >hospital again, hoping that they will have a change of heart when they >realize that we do have doctors >with more experience with mito ready and willing to consult on 's >case. Cross your fingers for us. >Also, I took your advice and went to a general peds doc to see if she could >help manage Matt. Looks >promising right now, thanks for the excellent advice. We're going to L.A. >to see Dr. Boles in January to >get Matt's dietary challenges repeated, so we'll have that information >also. > On the down side, our hematologist still does not want to chelate Matt, >even with Dr. Cohen's advice to >do so. She feels that because chelation causes kids to stop growing, and > has just come out of a 4 >month period of no growth and no weight gain, that we should still wait for >him to grow a bit more. It's >all so confusing to me, but I'm putting my money on Dr. Cohen's advice, for >obvious reasons. Now the trick >is to get her to do it, even though she doesn't want to. She also doesn't >want Matt to get a g-tube, and >Dr. Cohen also recommended that. She feels that Matt has so much trouble >with the little amount of formula >he does take by mouth (about 5 oz. a day), that we would have no luck with >a g-tube. I proposed to her a >compromise, like trying an ng-tube and seeing if that helped him before >putting him through surgery to >place a g-tube. I'm still waiting for a response on that issue. > > > > >Ken Hirsch wrote: > > > > > > > Zinc deficiency is a well-known cause for brittle, thin hair. Rhys had > > problems with it and we cautiously supplemented him for a while. It's >just > > one of those nutritional things that must be balanced depending on >anyone's > > own particular issues (with either fat, carbo, protein - or combination > > thereof - intolerances. > > > > -------- > > > > , > > > > Hopefully your docs are checking pyruvate and lactate levels to make >sure > > that there aren't any SIGNIFICANT abnormalities caused by the TPN. Too >bad > > your metabolic docs at the academic center don't want to take charge. > > > > Ken > > > > > Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. > > >------------------------------------------------------------------------ >Brought to you by www.imdn.org - an on-line support group for those >affected by mitochondrial disease. ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 1999 Report Share Posted December 19, 1999 Ken, Hi again. It's me, the bother. lol We are trying to get an appointment with the metabolic docs at our hospital again, hoping that they will have a change of heart when they realize that we do have doctors with more experience with mito ready and willing to consult on 's case. Cross your fingers for us. Also, I took your advice and went to a general peds doc to see if she could help manage Matt. Looks promising right now, thanks for the excellent advice. We're going to L.A. to see Dr. Boles in January to get Matt's dietary challenges repeated, so we'll have that information also. On the down side, our hematologist still does not want to chelate Matt, even with Dr. Cohen's advice to do so. She feels that because chelation causes kids to stop growing, and has just come out of a 4 month period of no growth and no weight gain, that we should still wait for him to grow a bit more. It's all so confusing to me, but I'm putting my money on Dr. Cohen's advice, for obvious reasons. Now the trick is to get her to do it, even though she doesn't want to. She also doesn't want Matt to get a g-tube, and Dr. Cohen also recommended that. She feels that Matt has so much trouble with the little amount of formula he does take by mouth (about 5 oz. a day), that we would have no luck with a g-tube. I proposed to her a compromise, like trying an ng-tube and seeing if that helped him before putting him through surgery to place a g-tube. I'm still waiting for a response on that issue. Ken Hirsch wrote: > > > Zinc deficiency is a well-known cause for brittle, thin hair. Rhys had > problems with it and we cautiously supplemented him for a while. It's just > one of those nutritional things that must be balanced depending on anyone's > own particular issues (with either fat, carbo, protein - or combination > thereof - intolerances. > > -------- > > , > > Hopefully your docs are checking pyruvate and lactate levels to make sure > that there aren't any SIGNIFICANT abnormalities caused by the TPN. Too bad > your metabolic docs at the academic center don't want to take charge. > > Ken > > > 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 December 20, 1999 Report Share Posted December 20, 1999 In a message dated 12/20/99 12:41:35 AM Eastern Standard Time, momalboe@... writes: << Try telling the doctor the following and see if she's more open to chelation: " We can have a short and skinny child that's alive or we can have a tall dead child - I prefer the former. " I know it sounds harsh, but it might give her a new perspective. >> - I just wrote and deleted a post . . . trying to figure out a way to say delicately that (though I am not a doctor) the heme's point of view doesn't seem to make sense to me. (And I know by your post that it doesn't to you either as you say it is all confusing.) What I was struck by is the fact that even though does not have the toxic iron build up that requires chelation, he doesn't grow very well (he is the height of a child half his age) due to his mito problems. Many children with mito have growth difficulty. Maybe even most children with mito. So, even if you don't chelate, he may not grow all that well. He may require other intervention in order to grow (some kids with mito are growth hormone deficient). It seems to be two almost entirely separate issues . . . with the only overlap being that perhaps the chelation will exacerbate an already poor situation for growth. But, the toxicity of the iron seems to be the worse of the rock and the hard space you guys are stuck between. I know how very hard it is to keep discussing issues with the docs, and then going back again to revisit because you disagree . . . I have been there myself. It is a horrible balancing act . . . you are dependent on these docs not getting TOO irritated, yet you have to act as your conscience dictates for your child. What a tremendous responsibility that is. It just seems so unfair. I have noticed that you are very talented at communicating clearly without being confrontational . . . so I bet you are great at that balancing act. (I, personally, tend to boil under the surface and then start to cry. I hate it.) Hope things work out for you guys soon . . . Kathy C mom to (age 8, nda) and (age 3, Complex I and III) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 1999 Report Share Posted December 20, 1999 Terri, My sentiments exactly!! Thank you for backing me up. I don't understand what her reluctance is for, it won't matter how much Matt weighs if he is dead. So thank you. Terri Mason wrote: > > > , > > Your situation reminds me of something Jeannine said once about Caitlin and > her steroid dependency. Try telling the doctor the following and see if > she's more open to chelation: > > " We can have a short and skinny child that's alive or we can have a tall > dead child - I prefer the former. " I know it sounds harsh, but it might > give her a new perspective. > > Good Luck. > > Terri > > > > >Reply-To: Mitoonelist > >To: Mitoonelist > >Subject: Re: Hair, TPN > >Date: Sun, 19 Dec 1999 15:32:51 -0800 > > > >Ken, > > Hi again. It's me, the bother. lol We are trying to get an appointment > >with the metabolic docs at our > >hospital again, hoping that they will have a change of heart when they > >realize that we do have doctors > >with more experience with mito ready and willing to consult on 's > >case. Cross your fingers for us. > >Also, I took your advice and went to a general peds doc to see if she could > >help manage Matt. Looks > >promising right now, thanks for the excellent advice. We're going to L.A. > >to see Dr. Boles in January to > >get Matt's dietary challenges repeated, so we'll have that information > >also. > > On the down side, our hematologist still does not want to chelate Matt, > >even with Dr. Cohen's advice to > >do so. She feels that because chelation causes kids to stop growing, and > > has just come out of a 4 > >month period of no growth and no weight gain, that we should still wait for > >him to grow a bit more. It's > >all so confusing to me, but I'm putting my money on Dr. Cohen's advice, for > >obvious reasons. Now the trick > >is to get her to do it, even though she doesn't want to. She also doesn't > >want Matt to get a g-tube, and > >Dr. Cohen also recommended that. She feels that Matt has so much trouble > >with the little amount of formula > >he does take by mouth (about 5 oz. a day), that we would have no luck with > >a g-tube. I proposed to her a > >compromise, like trying an ng-tube and seeing if that helped him before > >putting him through surgery to > >place a g-tube. I'm still waiting for a response on that issue. > > > > > > > > > >Ken Hirsch wrote: > > > > > > > > > > > Zinc deficiency is a well-known cause for brittle, thin hair. Rhys had > > > problems with it and we cautiously supplemented him for a while. It's > >just > > > one of those nutritional things that must be balanced depending on > >anyone's > > > own particular issues (with either fat, carbo, protein - or combination > > > thereof - intolerances. > > > > > > -------- > > > > > > , > > > > > > Hopefully your docs are checking pyruvate and lactate levels to make > >sure > > > that there aren't any SIGNIFICANT abnormalities caused by the TPN. Too > >bad > > > your metabolic docs at the academic center don't want to take charge. > > > > > > Ken > > > > > > > Brought to you by www.imdn.org - an on-line support group for those > >affected by mitochondrial disease. > > > > > >------------------------------------------------------------------------ > >Brought to you by www.imdn.org - an on-line support group for those > >affected by mitochondrial disease. > ><< text3.html >> > > > 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 December 20, 1999 Report Share Posted December 20, 1999 > On the down side, our hematologist still does not want to chelate Matt, > even with Dr. Cohen's advice to do so. She feels that because chelation causes kids to stop growing, and > has just come out of a 4 month period of no growth and no weight gain, that we should still wait > for him to grow a bit more. , has anyone considered the fact that kids don't grow when they are chronically ill and stressed and that chelating him may well eliminate one of the major stresses in his life and " allow " him to grow. This is something that we have seen time and time again with Caitlin. Also, I really have to wonder what the accumulation of the iron is doing to his mito disease state, not to mention brain cells, as there is already quite a bit of research documenting the ill effects of the accumulation of metals on mitochondrial function. The worse shape he is in metabolically the less he is likely to grow. And while we're on the subject, has the doctor considered the possibility that perhaps the reason he hasn't grown for the past 4 months is that he " needs " the chelation and the accumulation of the iron is interfering with his growth. If it were me, I'd either push really hard, or get another opinion. Our kids don't always go by the rules, and many times with mitochondrial disease, it takes a doc that is willing to look outside the box, so to speak. It's been our experience that going strictly by the books has nearly cost us Caitlin's life. Jeannine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 1999 Report Share Posted December 20, 1999 Kathy, Thanks for your input. I, too, would rather have alive in whatever form that may be, than to have him die from iron toxicity. As hard as Matt has fought for the last year, it seems so silly to have something that we can change or prevent do damage to his health. There is so much about mito and Pearson's that we don't know, it is such a shame to waste what information we do have. Thanks again!! , mommy to Adrienne 7, Grace 2, and 1 on Thursday (Pearson's Syndrome) KCorley309@... wrote: > From: KCorley309@... > > In a message dated 12/20/99 12:41:35 AM Eastern Standard Time, > momalboe@... writes: > > << Try telling the doctor the following and see if > she's more open to chelation: > > " We can have a short and skinny child that's alive or we can have a tall > dead child - I prefer the former. " I know it sounds harsh, but it might > give her a new perspective. > >> > > - > > I just wrote and deleted a post . . . trying to figure out a way to say > delicately that (though I am not a doctor) the heme's point of view doesn't > seem to make sense to me. (And I know by your post that it doesn't to you > either as you say it is all confusing.) What I was struck by is the fact > that even though does not have the toxic iron build up that requires > chelation, he doesn't grow very well (he is the height of a child half his > age) due to his mito problems. Many children with mito have growth > difficulty. Maybe even most children with mito. So, even if you don't > chelate, he may not grow all that well. He may require other intervention in > order to grow (some kids with mito are growth hormone deficient). It seems > to be two almost entirely separate issues . . . with the only overlap being > that perhaps the chelation will exacerbate an already poor situation for > growth. But, the toxicity of the iron seems to be the worse of the rock and > the hard space you guys are stuck between. > > I know how very hard it is to keep discussing issues with the docs, and then > going back again to revisit because you disagree . . . I have been there > myself. It is a horrible balancing act . . . you are dependent on these docs > not getting TOO irritated, yet you have to act as your conscience dictates > for your child. What a tremendous responsibility that is. It just seems so > unfair. > > I have noticed that you are very talented at communicating clearly without > being confrontational . . . so I bet you are great at that balancing act. > (I, personally, tend to boil under the surface and then start to cry. I hate > it.) > > Hope things work out for you guys soon . . . > > Kathy C > mom to (age 8, nda) and (age 3, Complex I and III) > > > 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 December 20, 1999 Report Share Posted December 20, 1999 this reminds me of something said at our care conference Friday. the docs were trying to explain to me why they are reluctant to start uridine on the kids since it is experimental. Finally the VP says to me, " Anne, do you not understand that there could be a bad outcome if we try this? " I looked at him and said " do you not understand that there WILL b a bad outcome if we do not try this " . They're going to go for it now. They just kill me with their tunnel vision sometimes. Anne - home now!!!!!! ---------- > > > Terri, > My sentiments exactly!! Thank you for backing me up. I don't understand what her reluctance is for, it > won't matter how much Matt weighs if he is dead. So thank you. > > > > > > > > " We can have a short and skinny child that's alive or we can have a tall > > dead child - I prefer the former. " I know it sounds harsh, but it might > > give her a new perspective. > > > > Good Luck. > > > > Terri > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 1999 Report Share Posted December 21, 1999 Hi Anne. Have you heard anything about your mtDNA tests?? Just wondering how all of that turned out. Yeah for you for finally getting somewhere. Best of luck with the uridine, I truly hope it turns out well for you. Just incidentally, do you mind if I ask what exactly your doc told you about Pearson's? Thanks. Juhlmann wrote: > > > this reminds me of something said at our care conference Friday. the docs > were trying to explain to me why they are reluctant to start uridine on the > kids since it is experimental. Finally the VP says to me, " Anne, do you not > understand that there could be a bad outcome if we try this? " I looked at > him and said " do you not understand that there WILL b a bad outcome if we > do not try this " . > > They're going to go for it now. They just kill me with their tunnel > vision sometimes. > > Anne - home now!!!!!! > > ---------- > > > > > > Terri, > > My sentiments exactly!! Thank you for backing me up. I don't understand > what her reluctance is for, it > > won't matter how much Matt weighs if he is dead. So thank you. > > > > > > > > > > > > > > " We can have a short and skinny child that's alive or we can have a > tall > > > dead child - I prefer the former. " I know it sounds harsh, but it > might > > > give her a new perspective. > > > > > > Good Luck. > > > > > > Terri > > > > > 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...
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