Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Darla, From our own personal experience (and this is only with the University Hospital here in Albuquerque) when we were admitted to the hospital (by Maddie's PCP) for dehydration when she was 9mos. old (VERY similar symptoms as Zipporrah/reflux) we had a 4 day stay, but the medical staff there ran almost every blood test possible, and we were able to see specialists that otherwise had a 2 month waiting list. Also had an MRI, renal ultrasound, echocardiogram, etc. It was extensive but thorough. Even though WE didn't receive any answers at the time, it may be possible for you, as you know a little more about what her symptoms are. Back then with Maddie I was still in denial, and didn't have a CLUE. We'll be praying for you all. Holly Rubio Reflux/pain worsening Zipporrah seems to be getting worse with nursing issues. She is content and happy when not eating but when I nurse her she gets very fussy and stiff as a board. And for some reason when I nurse her on my right breast she is much worse. She really gets stiff and arches and screams and fusses through the feeding. Is there a reason for the right side eing worse than the left? I have tried nursing her with her in different positions such as a more upright football hold or even sitting on my lap facing the breast so she is totally upright and this helps some but she wtill is very fussy. It is very frustrating because I don't like to see her suffer and yet can't so anything about it. Hopefully we will do some testing when she sees Dr. Whiteman on February 11th, but that is so far away from now. Is there nothing I can do sooner for her? Going through her pediatrician would take longer because the wait for a GI doctor is about 1-1 12 months plus a week or two more for testing and return visit to the doctor again before getting meds. I know this because Kezia had reflux when she first came to live with us 2 years ago. If she gets much worse with the pain, I don't know what to do. ER probably wouldn't be able to do anything. Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Darla, From our own personal experience (and this is only with the University Hospital here in Albuquerque) when we were admitted to the hospital (by Maddie's PCP) for dehydration when she was 9mos. old (VERY similar symptoms as Zipporrah/reflux) we had a 4 day stay, but the medical staff there ran almost every blood test possible, and we were able to see specialists that otherwise had a 2 month waiting list. Also had an MRI, renal ultrasound, echocardiogram, etc. It was extensive but thorough. Even though WE didn't receive any answers at the time, it may be possible for you, as you know a little more about what her symptoms are. Back then with Maddie I was still in denial, and didn't have a CLUE. We'll be praying for you all. Holly Rubio Reflux/pain worsening Zipporrah seems to be getting worse with nursing issues. She is content and happy when not eating but when I nurse her she gets very fussy and stiff as a board. And for some reason when I nurse her on my right breast she is much worse. She really gets stiff and arches and screams and fusses through the feeding. Is there a reason for the right side eing worse than the left? I have tried nursing her with her in different positions such as a more upright football hold or even sitting on my lap facing the breast so she is totally upright and this helps some but she wtill is very fussy. It is very frustrating because I don't like to see her suffer and yet can't so anything about it. Hopefully we will do some testing when she sees Dr. Whiteman on February 11th, but that is so far away from now. Is there nothing I can do sooner for her? Going through her pediatrician would take longer because the wait for a GI doctor is about 1-1 12 months plus a week or two more for testing and return visit to the doctor again before getting meds. I know this because Kezia had reflux when she first came to live with us 2 years ago. If she gets much worse with the pain, I don't know what to do. ER probably wouldn't be able to do anything. Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Darla, From our own personal experience (and this is only with the University Hospital here in Albuquerque) when we were admitted to the hospital (by Maddie's PCP) for dehydration when she was 9mos. old (VERY similar symptoms as Zipporrah/reflux) we had a 4 day stay, but the medical staff there ran almost every blood test possible, and we were able to see specialists that otherwise had a 2 month waiting list. Also had an MRI, renal ultrasound, echocardiogram, etc. It was extensive but thorough. Even though WE didn't receive any answers at the time, it may be possible for you, as you know a little more about what her symptoms are. Back then with Maddie I was still in denial, and didn't have a CLUE. We'll be praying for you all. Holly Rubio Reflux/pain worsening Zipporrah seems to be getting worse with nursing issues. She is content and happy when not eating but when I nurse her she gets very fussy and stiff as a board. And for some reason when I nurse her on my right breast she is much worse. She really gets stiff and arches and screams and fusses through the feeding. Is there a reason for the right side eing worse than the left? I have tried nursing her with her in different positions such as a more upright football hold or even sitting on my lap facing the breast so she is totally upright and this helps some but she wtill is very fussy. It is very frustrating because I don't like to see her suffer and yet can't so anything about it. Hopefully we will do some testing when she sees Dr. Whiteman on February 11th, but that is so far away from now. Is there nothing I can do sooner for her? Going through her pediatrician would take longer because the wait for a GI doctor is about 1-1 12 months plus a week or two more for testing and return visit to the doctor again before getting meds. I know this because Kezia had reflux when she first came to live with us 2 years ago. If she gets much worse with the pain, I don't know what to do. ER probably wouldn't be able to do anything. Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Darla, Gentry seems to do the same thing, sometimes she fights so hard she starts to perspire. She has checked out good as far as mito, but when I told the doc about the problems we were having she asked if she had thrush. Do you think she could have thrush? The other thing is Gentry gets such bad gas, that when she has to be laid down she cries because the bubble is shifting. Gentry also has a reflux issue and we just started her on Zantac, I don't know if you had mentioned previously (this is the first post I caught) that she is taking anything for the reflux. The doc also checked to make sure she didn't have an ear infection, and made sure her throat wasn't red (all things that could make eating uncomfortable) The other thing I found is that when it seems like it should be time for her to eat I try to feed her, and sometimes she just isn't hungry so she throws a fit because I am trying to feed her when she doesn't want to. I don't know if any of this will help you, I pray that one of these is the issue, and that is not something more serious!! Please keep me posted. 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 Reflux/pain worsening Zipporrah seems to be getting worse with nursing issues. She is content and happy when not eating but when I nurse her she gets very fussy and stiff as a board. And for some reason when I nurse her on my right breast she is much worse. She really gets stiff and arches and screams and fusses through the feeding. Is there a reason for the right side eing worse than the left? I have tried nursing her with her in different positions such as a more upright football hold or even sitting on my lap facing the breast so she is totally upright and this helps some but she wtill is very fussy. It is very frustrating because I don't like to see her suffer and yet can't so anything about it. Hopefully we will do some testing when she sees Dr. Whiteman on February 11th, but that is so far away from now. Is there nothing I can do sooner for her? Going through her pediatrician would take longer because the wait for a GI doctor is about 1-1 12 months plus a week or two more for testing and return visit to the doctor again before getting meds. I know this because Kezia had reflux when she first came to live with us 2 years ago. If she gets much worse with the pain, I don't know what to do. ER probably wouldn't be able to do anything. Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Darla, Gentry seems to do the same thing, sometimes she fights so hard she starts to perspire. She has checked out good as far as mito, but when I told the doc about the problems we were having she asked if she had thrush. Do you think she could have thrush? The other thing is Gentry gets such bad gas, that when she has to be laid down she cries because the bubble is shifting. Gentry also has a reflux issue and we just started her on Zantac, I don't know if you had mentioned previously (this is the first post I caught) that she is taking anything for the reflux. The doc also checked to make sure she didn't have an ear infection, and made sure her throat wasn't red (all things that could make eating uncomfortable) The other thing I found is that when it seems like it should be time for her to eat I try to feed her, and sometimes she just isn't hungry so she throws a fit because I am trying to feed her when she doesn't want to. I don't know if any of this will help you, I pray that one of these is the issue, and that is not something more serious!! Please keep me posted. 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 Reflux/pain worsening Zipporrah seems to be getting worse with nursing issues. She is content and happy when not eating but when I nurse her she gets very fussy and stiff as a board. And for some reason when I nurse her on my right breast she is much worse. She really gets stiff and arches and screams and fusses through the feeding. Is there a reason for the right side eing worse than the left? I have tried nursing her with her in different positions such as a more upright football hold or even sitting on my lap facing the breast so she is totally upright and this helps some but she wtill is very fussy. It is very frustrating because I don't like to see her suffer and yet can't so anything about it. Hopefully we will do some testing when she sees Dr. Whiteman on February 11th, but that is so far away from now. Is there nothing I can do sooner for her? Going through her pediatrician would take longer because the wait for a GI doctor is about 1-1 12 months plus a week or two more for testing and return visit to the doctor again before getting meds. I know this because Kezia had reflux when she first came to live with us 2 years ago. If she gets much worse with the pain, I don't know what to do. ER probably wouldn't be able to do anything. Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Darla, Gentry seems to do the same thing, sometimes she fights so hard she starts to perspire. She has checked out good as far as mito, but when I told the doc about the problems we were having she asked if she had thrush. Do you think she could have thrush? The other thing is Gentry gets such bad gas, that when she has to be laid down she cries because the bubble is shifting. Gentry also has a reflux issue and we just started her on Zantac, I don't know if you had mentioned previously (this is the first post I caught) that she is taking anything for the reflux. The doc also checked to make sure she didn't have an ear infection, and made sure her throat wasn't red (all things that could make eating uncomfortable) The other thing I found is that when it seems like it should be time for her to eat I try to feed her, and sometimes she just isn't hungry so she throws a fit because I am trying to feed her when she doesn't want to. I don't know if any of this will help you, I pray that one of these is the issue, and that is not something more serious!! Please keep me posted. 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 Reflux/pain worsening Zipporrah seems to be getting worse with nursing issues. She is content and happy when not eating but when I nurse her she gets very fussy and stiff as a board. And for some reason when I nurse her on my right breast she is much worse. She really gets stiff and arches and screams and fusses through the feeding. Is there a reason for the right side eing worse than the left? I have tried nursing her with her in different positions such as a more upright football hold or even sitting on my lap facing the breast so she is totally upright and this helps some but she wtill is very fussy. It is very frustrating because I don't like to see her suffer and yet can't so anything about it. Hopefully we will do some testing when she sees Dr. Whiteman on February 11th, but that is so far away from now. Is there nothing I can do sooner for her? Going through her pediatrician would take longer because the wait for a GI doctor is about 1-1 12 months plus a week or two more for testing and return visit to the doctor again before getting meds. I know this because Kezia had reflux when she first came to live with us 2 years ago. If she gets much worse with the pain, I don't know what to do. ER probably wouldn't be able to do anything. Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Darla, Her situation sounds similar to this child's I saw on TV before. You may have seen it on Discovery Health. Her name is Autumn. She had a really severe case of "something" fistula? forgot the technical name but her esphagus was not attached so nothing was going down. Anyway, they corrected it, leaving one side of her vocal cords paralyzed. She also had a narrowing due to scaring from the repair. The paralyzed vocal cord one side caused her to aspirate into her lungs. Her mother noticed that she couldn't nurse on one side, so she found that putting her one side (the side that was NOT paralyzed) let her safely breast feed. Not that she has the exact same thing going on but I just wanted you to know that there indeed may be a REASON why she can't nurse on right. Is she gaining weight and thriving, etc... Let us know what you find out. Krystena s Caden & Carsen GAII Reflux/pain worsening Zipporrah seems to be getting worse with nursing issues. She is content and happy when not eating but when I nurse her she gets very fussy and stiff as a board. And for some reason when I nurse her on my right breast she is much worse. She really gets stiff and arches and screams and fusses through the feeding. Is there a reason for the right side eing worse than the left? I have tried nursing her with her in different positions such as a more upright football hold or even sitting on my lap facing the breast so she is totally upright and this helps some but she wtill is very fussy. It is very frustrating because I don't like to see her suffer and yet can't so anything about it. Hopefully we will do some testing when she sees Dr. Whiteman on February 11th, but that is so far away from now. Is there nothing I can do sooner for her? Going through her pediatrician would take longer because the wait for a GI doctor is about 1-1 12 months plus a week or two more for testing and return visit to the doctor again before getting meds. I know this because Kezia had reflux when she first came to live with us 2 years ago. If she gets much worse with the pain, I don't know what to do. ER probably wouldn't be able to do anything. Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Darla, Her situation sounds similar to this child's I saw on TV before. You may have seen it on Discovery Health. Her name is Autumn. She had a really severe case of "something" fistula? forgot the technical name but her esphagus was not attached so nothing was going down. Anyway, they corrected it, leaving one side of her vocal cords paralyzed. She also had a narrowing due to scaring from the repair. The paralyzed vocal cord one side caused her to aspirate into her lungs. Her mother noticed that she couldn't nurse on one side, so she found that putting her one side (the side that was NOT paralyzed) let her safely breast feed. Not that she has the exact same thing going on but I just wanted you to know that there indeed may be a REASON why she can't nurse on right. Is she gaining weight and thriving, etc... Let us know what you find out. Krystena s Caden & Carsen GAII Reflux/pain worsening Zipporrah seems to be getting worse with nursing issues. She is content and happy when not eating but when I nurse her she gets very fussy and stiff as a board. And for some reason when I nurse her on my right breast she is much worse. She really gets stiff and arches and screams and fusses through the feeding. Is there a reason for the right side eing worse than the left? I have tried nursing her with her in different positions such as a more upright football hold or even sitting on my lap facing the breast so she is totally upright and this helps some but she wtill is very fussy. It is very frustrating because I don't like to see her suffer and yet can't so anything about it. Hopefully we will do some testing when she sees Dr. Whiteman on February 11th, but that is so far away from now. Is there nothing I can do sooner for her? Going through her pediatrician would take longer because the wait for a GI doctor is about 1-1 12 months plus a week or two more for testing and return visit to the doctor again before getting meds. I know this because Kezia had reflux when she first came to live with us 2 years ago. If she gets much worse with the pain, I don't know what to do. ER probably wouldn't be able to do anything. Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Darla, Her situation sounds similar to this child's I saw on TV before. You may have seen it on Discovery Health. Her name is Autumn. She had a really severe case of "something" fistula? forgot the technical name but her esphagus was not attached so nothing was going down. Anyway, they corrected it, leaving one side of her vocal cords paralyzed. She also had a narrowing due to scaring from the repair. The paralyzed vocal cord one side caused her to aspirate into her lungs. Her mother noticed that she couldn't nurse on one side, so she found that putting her one side (the side that was NOT paralyzed) let her safely breast feed. Not that she has the exact same thing going on but I just wanted you to know that there indeed may be a REASON why she can't nurse on right. Is she gaining weight and thriving, etc... Let us know what you find out. Krystena s Caden & Carsen GAII Reflux/pain worsening Zipporrah seems to be getting worse with nursing issues. She is content and happy when not eating but when I nurse her she gets very fussy and stiff as a board. And for some reason when I nurse her on my right breast she is much worse. She really gets stiff and arches and screams and fusses through the feeding. Is there a reason for the right side eing worse than the left? I have tried nursing her with her in different positions such as a more upright football hold or even sitting on my lap facing the breast so she is totally upright and this helps some but she wtill is very fussy. It is very frustrating because I don't like to see her suffer and yet can't so anything about it. Hopefully we will do some testing when she sees Dr. Whiteman on February 11th, but that is so far away from now. Is there nothing I can do sooner for her? Going through her pediatrician would take longer because the wait for a GI doctor is about 1-1 12 months plus a week or two more for testing and return visit to the doctor again before getting meds. I know this because Kezia had reflux when she first came to live with us 2 years ago. If she gets much worse with the pain, I don't know what to do. ER probably wouldn't be able to do anything. Darla: mommy to AsenathPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 Darla, So sorry to hear that Zipporrah is having so many problems. I know it sounds silly to go to the ER,(since we are usually the parents complaining about he healthy looking kids in there) but it is probably the quickest way to get a GI to look at her problems. Plus if she is crying and arching that much she must be in some pain so it is reasonable to go. Someone else had mentioned that maybe your ped can prescribe Zantac until you go to Mayo. That is definately worth a try. I hope things improve and keep us posted as to what is going on. Geri-Anne and Wyatt, Complex I- One other note, Wyatt was exactly like that for the first 6 months. We had him on progestimil, which someone else mentioned. It really seemed to help. When we saw the GI they determined Wy had reflux and a twisted intestine, therefore it was painful to digest the food. Once that was corrected life really started to improve. -- In Mito , " Darla Klein " wrote: > Zipporrah seems to be getting worse with nursing issues. She is content and happy when not eating but when I nurse her she gets very fussy and stiff as a board. And for some reason when I nurse her on my right breast she is much worse. She really gets stiff and arches and screams and fusses through the feeding. Is there a reason for the right side eing worse than the left? I have tried nursing her with her in different positions such as a more upright football hold or even sitting on my lap facing the breast so she is totally upright and this helps some but she wtill is very fussy. It is very frustrating because I don't like to see her suffer and yet can't so anything about it. Hopefully we will do some testing when she sees Dr. Whiteman on February 11th, but that is so far away from now. Is there nothing I can do sooner for her? Going through her pediatrician would take longer because the wait for a GI doctor is about 1-1 12 months plus a week or two more for testing and return visit to the doctor again before getting meds. I know this because Kezia had reflux when she first came to live with us 2 years ago. If she gets much worse with the pain, I don't know what to do. ER probably wouldn't be able to do anything. > > Darla: mommy to AsenathGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Have you tried changing your diet. Sometimes if you cut out certain foods it will help her. With my last two I had to cut out milk totally. This sounds easy, but you will be amazed what all has milk in it, breads almost all processed foods, ect. Read labels diligently. Avoid any whey and lactose. I'm sure if you research it you will find hidden ingredients which include milk. Unfortunately with Grace I had no choice but to stop nursing her. Her GI told me that you nurse because its the best, but if a formula is a better option you have no choice. Maybe you can call your ped. and explain your problems. When Grace had such severe problems she had her into a GI the next day. Also, my pediatrician prescribed the Pepcid for her before she ever saw a GI. There were no tests involved, she went off symptoms. She told me that the stress of the mother on the child is so bad it actually makes it worse. And it is almost impossible to not have stress, when your little baby is screaming all day. My ped is also a lactation consultant so she always tried to make things better. She never wanted the baby or the mom stressed, I guess it actually affects your production and quality of your milk. I am sorry this is so hard for you, talk with your doc. maybe they can help you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 go to the er and demand to see a nerogist specialist and tell them to check her blood for lactic acid levels you really need to have her checked quick dont listen to the ped.. go to the er with her and demand for her to be seen and tell them what is going on with her.... they have to do somthing for her .. i hope things get better for her sorry to hear about all of this ... your freind shannon Quote Link to comment Share on other sites More sharing options...
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