Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 Maybe he has malabsorption. Sounds like it.. (Pancreatic Insufficiency). Krystena Weight lose Hello: My 2 daughters have a diagnosis of mito & FOD (as well as me). My 1 yr old nephew is now being follow by our metabolic MD as some of the things going on with him sound a lot like mito, but he was born @ 29 wks so it is hard to tell. He was 2 lb 10 oz when he was born and gained weight fine until recently he has not been gaining. He is still eating the same ( a lot ) my sister is adding olive or vegetable oil to his bottles for extra calories. We were able to get him a visiting nurse and she has been weighing him: Mon. 10/11 17 lb 1 oz Sat. 10/16 16 lb 12.5 oz Wed. 10/20 15 lb 12 oz Yes, it is the same scale, it is put in the same spot each time, he is naked when she is weighing him. Has anyone else experience this and so quickly? We had some weight lose and no weight gain with Hailey as a baby, but never anything like this. She was able to get a Nutrition appointment November 9th and we have some calls out to see about getting something earlier. If anyone has any input please let me know. Thanks~ Kerry Hailey 5 yrs. Mito & FOD Brenna 3 yrs. Mito & FODPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 I will have to go look that up ~ thank for the info. Kerry -----Original Message-----From: Krystena s Sent: Wednesday, October 20, 2004 7:51 PMTo: Mito Subject: Re: Weight lose Maybe he has malabsorption. Sounds like it.. (Pancreatic Insufficiency). Krystena Weight lose Hello: My 2 daughters have a diagnosis of mito & FOD (as well as me). My 1 yr old nephew is now being follow by our metabolic MD as some of the things going on with him sound a lot like mito, but he was born @ 29 wks so it is hard to tell. He was 2 lb 10 oz when he was born and gained weight fine until recently he has not been gaining. He is still eating the same ( a lot ) my sister is adding olive or vegetable oil to his bottles for extra calories. We were able to get him a visiting nurse and she has been weighing him: Mon. 10/11 17 lb 1 oz Sat. 10/16 16 lb 12.5 oz Wed. 10/20 15 lb 12 oz Yes, it is the same scale, it is put in the same spot each time, he is naked when she is weighing him. Has anyone else experience this and so quickly? We had some weight lose and no weight gain with Hailey as a baby, but never anything like this. She was able to get a Nutrition appointment November 9th and we have some calls out to see about getting something earlier. If anyone has any input please let me know. Thanks~ Kerry Hailey 5 yrs. Mito & FOD Brenna 3 yrs. Mito & FODPlease contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 Hi, I'm writing in response to your weight loss issues. My son just experienced the same problem. He is 7 months old and lost four pounds in just 7 days. He stopped eating food and reverted to bottle feeding. He is slowly gaining the weight back but just barely ounces over days. Turns out he has gastropareisis and malabsorption issues. Don't know if this helps but just wanted to let you know. --- Kerry Tobin kerry.tobin@...> wrote: > Hello: > > My 2 daughters have a diagnosis of mito & FOD (as > well as me). My 1 yr > old nephew is now being follow by our metabolic MD > as some of the things > going on with him sound a lot like mito, but he was > born @ 29 wks so it > is hard to tell. He was 2 lb 10 oz when he was born > and gained weight > fine until recently he has not been gaining. He is > still eating the > same ( a lot ) my sister is adding olive or > vegetable oil to his > bottles for extra calories. We were able to get him > a visiting nurse > and she has been weighing him: > > Mon. 10/11 17 lb 1 oz > Sat. 10/16 16 lb 12.5 oz > Wed. 10/20 15 lb 12 oz > > Yes, it is the same scale, it is put in the same > spot each time, he is > naked when she is weighing him. Has anyone else > experience this and so > quickly? We had some weight lose and no weight gain > with Hailey as a > baby, but never anything like this. > > She was able to get a Nutrition appointment November > 9th and we have > some calls out to see about getting something > earlier. If anyone has > any input please let me know. > > Thanks~ > Kerry > > Hailey 5 yrs. Mito & FOD > Brenna 3 yrs. Mito & FOD > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 Thanks I will pass the info along to my sister. My nephew is still eating solids and taking his bottles as normal just not gaining. Kerry -----Original Message-----From: Wantuch Sent: Wednesday, October 20, 2004 8:14 PMTo: Mito Subject: Re: Weight loseHi,I'm writing in response to your weight loss issues. My son just experienced the same problem. Heis 7 months old and lost four pounds in just 7 days. He stopped eating food and reverted to bottle feeding.He is slowly gaining the weight back but just barelyounces over days. Turns out he has gastropareisis andmalabsorption issues. Don't know if this helps butjust wanted to let you know. --- Kerry Tobin wrote:> Hello:> > My 2 daughters have a diagnosis of mito & FOD (as> well as me). My 1 yr> old nephew is now being follow by our metabolic MD> as some of the things> going on with him sound a lot like mito, but he was> born @ 29 wks so it> is hard to tell. He was 2 lb 10 oz when he was born> and gained weight> fine until recently he has not been gaining. He is> still eating the> same ( a lot ) my sister is adding olive or> vegetable oil to his> bottles for extra calories. We were able to get him> a visiting nurse> and she has been weighing him:> > Mon. 10/11 17 lb 1 oz> Sat. 10/16 16 lb 12.5 oz> Wed. 10/20 15 lb 12 oz> > Yes, it is the same scale, it is put in the same> spot each time, he is> naked when she is weighing him. Has anyone else> experience this and so> quickly? We had some weight lose and no weight gain> with Hailey as a> baby, but never anything like this.> > She was able to get a Nutrition appointment November> 9th and we have> some calls out to see about getting something> earlier. If anyone has> any input please let me know.> > Thanks~> Kerry> > Hailey 5 yrs. Mito & FOD> Brenna 3 yrs. Mito & FOD> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 Id encourage her to push for an earlier appointment... i cant imagine they would make them wait that long if they were aware of the speed of weight loss, thats alot to lose in 9 days when hes so small to start... (thats more than 10% of his body weight!) I dont know what would cause that, but it should be sending some major red flags with the docs, and i would imagine they would want to get a handle on it asap! I hope you guys get some answers soon! it must be scary! Keely > Hello: > > My 2 daughters have a diagnosis of mito & FOD (as well as me). My 1 yr > old nephew is now being follow by our metabolic MD as some of the things > going on with him sound a lot like mito, but he was born @ 29 wks so it > is hard to tell. He was 2 lb 10 oz when he was born and gained weight > fine until recently he has not been gaining. He is still eating the > same ( a lot ) my sister is adding olive or vegetable oil to his > bottles for extra calories. We were able to get him a visiting nurse > and she has been weighing him: > > Mon. 10/11 17 lb 1 oz > Sat. 10/16 16 lb 12.5 oz > Wed. 10/20 15 lb 12 oz > > Yes, it is the same scale, it is put in the same spot each time, he is > naked when she is weighing him. Has anyone else experience this and so > quickly? We had some weight lose and no weight gain with Hailey as a > baby, but never anything like this. > > She was able to get a Nutrition appointment November 9th and we have > some calls out to see about getting something earlier. If anyone has > any input please let me know. > > Thanks~ > Kerry > > Hailey 5 yrs. Mito & FOD > Brenna 3 yrs. Mito & FOD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 I am not too familiar with the weight loss to that extreme. Grace did have a period of time where she did loose some weight, but not nealry as fast as the child you are discussing. Have you ever thought of adding MCT oil instead of the olive/vegetable oil. It is a prescription and, of course, the doctor would have to make sure it is safe with his particular FOD. We used it for some time with Grace and it really helped. Best wishes. Reply-To: Mito To: mito > Subject: Weight lose Date: Wed, 20 Oct 2004 20:33:51 -0400 Hello: My 2 daughters have a diagnosis of mito & FOD (as well as me). My 1 yr old nephew is now being follow by our metabolic MD as some of the things going on with him sound a lot like mito, but he was born @ 29 wks so it is hard to tell. He was 2 lb 10 oz when he was born and gained weight fine until recently he has not been gaining. He is still eating the same ( a lot ) my sister is adding olive or vegetable oil to his bottles for extra calories. We were able to get him a visiting nurse and she has been weighing him: Mon. 10/11 17 lb 1 oz Sat. 10/16 16 lb 12.5 oz Wed. 10/20 15 lb 12 oz Yes, it is the same scale, it is put in the same spot each time, he is naked when she is weighing him. Has anyone else experience this and so quickly? We had some weight lose and no weight gain with Hailey as a baby, but never anything like this. She was able to get a Nutrition appointment November 9th and we have some calls out to see about getting something earlier. If anyone has any input please let me know. Thanks~ Kerry Hailey 5 yrs. Mito & FOD Brenna 3 yrs. Mito & FOD _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Hi. My son Matt has an FOD where he cant process fats. He stopped gaining weight and did not gain an ounce for over a year and a half. It took us 2 years to get him diagnosed. What about doing the Newborn screen now and see if anything gets picked up? If the money is an issue I can make arrangements to get it done. If you suspect an FOD I would not give any oils right now until you know. We had the same thing, he was eating like a pig and he looked like he was dying. Jill Levy Fisch National Director of Education and Awareness Save Babies Through Screening Foundation SCAD Family Edgemont, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Hi Kerry, My 13 month old son has mito & FOD too. He was failure to thrive within weeks of his birth, and had ongoing weight loss/weight maintenance issues (he has a G tube now, so that has eliminated most of the problems). One big thing we did was up his formula calories from 20 calories per ounce to 28 calories--essentially you just add more of the powder to the water mixture when preparing the formula (my son currently takes 24 calories per ounce when he has formula). If your sister breastfeeds, she can pump bottles and add powdered formula to the breastmilk to increase the calories (we did this for months). I also give my son whole milk now in his bottles (150 calories per cup) and add a few scoops of formula powder to the milk for an extra boost of cals and nutrition. It is basically like a milkshake. He loves it. We also do whole milk yogurt at most meals (120 cals per 4 oz) and lots of buttered noddles as table food. For baby food, we add yogurt to his fruits and sour cream to his vegetables. We don't do much table food yet, but I know there are great ideas out there. Hope that helps! Whitney > Hello: > > My 2 daughters have a diagnosis of mito & FOD (as well as me). My 1 yr > old nephew is now being follow by our metabolic MD as some of the things > going on with him sound a lot like mito, but he was born @ 29 wks so it > is hard to tell. He was 2 lb 10 oz when he was born and gained weight > fine until recently he has not been gaining. He is still eating the > same ( a lot ) my sister is adding olive or vegetable oil to his > bottles for extra calories. We were able to get him a visiting nurse > and she has been weighing him: > > Mon. 10/11 17 lb 1 oz > Sat. 10/16 16 lb 12.5 oz > Wed. 10/20 15 lb 12 oz > > Yes, it is the same scale, it is put in the same spot each time, he is > naked when she is weighing him. Has anyone else experience this and so > quickly? We had some weight lose and no weight gain with Hailey as a > baby, but never anything like this. > > She was able to get a Nutrition appointment November 9th and we have > some calls out to see about getting something earlier. If anyone has > any input please let me know. > > Thanks~ > Kerry > > Hailey 5 yrs. Mito & FOD > Brenna 3 yrs. Mito & FOD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 What is FOD? Thanks! KK Re: Weight lose Hi. My son Matt has an FOD where he cant process fats. He stopped gaining weight and did not gain an ounce for over a year and a half. It took us 2 years to get him diagnosed. What about doing the Newborn screen now and see if anything gets picked up? If the money is an issue I can make arrangements to get it done. If you suspect an FOD I would not give any oils right now until you know. We had the same thing, he was eating like a pig and he looked like he was dying. Jill Levy Fisch National Director of Education and Awareness Save Babies Through Screening Foundation SCAD Family Edgemont, NY Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 We live in Massachusetts and the expaned newborn screening was started here in Feb 1999. My girls had it the test a few time and my nephew had it at birth ~ all were normal. With my girls it is the mito that is causing the FOD and during illness it can show up in the short chain, long chain or very long chain ~ probably anywhere at this point. Someone else asked what FOD meant ~ Fatty Acid Oxidation Disorder (www.fodsupport.org) Kerry -----Original Message-----From: jf2545@... Sent: Thursday, October 21, 2004 12:16 PMTo: Mito Subject: Re: Weight lose Hi. My son Matt has an FOD where he cant process fats. He stopped gaining weight and did not gain an ounce for over a year and a half. It took us 2 years to get him diagnosed. What about doing the Newborn screen now and see if anything gets picked up? If the money is an issue I can make arrangements to get it done. If you suspect an FOD I would not give any oils right now until you know. We had the same thing, he was eating like a pig and he looked like he was dying. Jill Levy Fisch National Director of Education and Awareness Save Babies Through Screening Foundation SCAD Family Edgemont, NY Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Why does the screening pick up primary but not seconary FOD's? has a suspected secondary suspected FOD and is treated by Cohen for it. I don't understand much about the testing and such. My other two are just now being tested (for Mito) and I am trying to understand about the FOD in relation to primary mito etc. Any help would be appreciated. Thanks. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2004 Report Share Posted October 21, 2004 Kerry, In April-May of 2003 andria lost 7 pounds in a month. Heidi Weight lose Hello: My 2 daughters have a diagnosis of mito & FOD (as well as me). My 1 yr old nephew is now being follow by our metabolic MD as some of the things going on with him sound a lot like mito, but he was born @ 29 wks so it is hard to tell. He was 2 lb 10 oz when he was born and gained weight fine until recently he has not been gaining. He is still eating the same ( a lot ) my sister is adding olive or vegetable oil to his bottles for extra calories. We were able to get him a visiting nurse and she has been weighing him: Mon. 10/11 17 lb 1 oz Sat. 10/16 16 lb 12.5 oz Wed. 10/20 15 lb 12 oz Yes, it is the same scale, it is put in the same spot each time, he is naked when she is weighing him. Has anyone else experience this and so quickly? We had some weight lose and no weight gain with Hailey as a baby, but never anything like this. She was able to get a Nutrition appointment November 9th and we have some calls out to see about getting something earlier. If anyone has any input please let me know. Thanks~ Kerry Hailey 5 yrs. Mito & FOD Brenna 3 yrs. Mito & FODPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2004 Report Share Posted October 22, 2004 Fatty Acid Oxidation Disorder www.fodsupport.org Kerry -----Original Message-----From: Kris & Matt Kovalcik Sent: Thursday, October 21, 2004 2:30 PMTo: Mito Subject: Re: Weight lose What is FOD? Thanks! KK Re: Weight lose Hi. My son Matt has an FOD where he cant process fats. He stopped gaining weight and did not gain an ounce for over a year and a half. It took us 2 years to get him diagnosed. What about doing the Newborn screen now and see if anything gets picked up? If the money is an issue I can make arrangements to get it done. If you suspect an FOD I would not give any oils right now until you know. We had the same thing, he was eating like a pig and he looked like he was dying. Jill Levy Fisch National Director of Education and Awareness Save Babies Through Screening Foundation SCAD Family Edgemont, NY Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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