Re: Asenath/heart rate plus update

[Guest guest]

I am not sure if I have gotten my point across quite well enough so...here goes, her resting heart rate on a normal basis has been about 120 bpm. Dr. Whiteman was the one to inform me that her records showed a consistant tachycardia. But this last time in the hospital, not with dehydration-only fever, her heart rate was between 195 and 206 bpm for many hours. Since that time her heart rate has been about 140-150's at home and doc's office quite frequently, without fever or dehydration. Her breathing in the hospital was quite scary as she was flaring at the nose, sucking in at the neck, and heaving/wheezing in her chest. Her sats were 95-98 though so we weren't worried about that. She still has been breathing fast with an up and down pattern and even seems like her heart beat is somewhat irratic lately with it's beats. No big pauses though. She had been diagnosed with a spot on her left lung in the hospital also and has been coughing tons and flemmy. She threw up both this morning and this afternoon during her tube feedings. I am currently giving her pedialite to increase her fluids and she seems to be tollerating that, at least thus far. She has been sleeping all afternoon since about 1-2 PM and it is 6:40 PM now. Not sure what is going on now. Very frustrated and hoping she isn't starting to not tollerate her tube feedings as she has thrown up quite frequently since the hospital stay and the reinsertion of a new NG-tube. Surgery this coming week looks doubtful even though all the Des Moines doctors think it should be done. I just don't think Dr. Whiteman will want to do it to a child with cronic diahrrea, vomitting, tachycardia, etc. But she really needs that G-tube... Darla Re: Asenath/heart rate The low tone makes the differences I was told. thats pretty interesting...I was going to tell you about the heart rate. was only dehydrated once when he was in the hospital getting his gtube...one dumb resident to blame there, but thats another story. His heart rate started going up to 140-150 while in bed and his sats were a little lower than usual. He had been doing well and then something just changed. The docs there were not concerned (think when they have such a complex kid they get a little lax about these things even when they are new), even tho his heart rate was consistently 90-110. After calling our mito doc in Boston, he was able to figure that was dehydrated and call himself and had them hook the IVs back up and increase his intake and then it corrected itself. If the echo and the EKG are normal and it is ONLY when she is dehydrated, I would chalk it up to that...I believe that would happen to any of your kids if they were dehydrated. If you start taking it at home and you see it is elevated all the time and this is the new baseline, then I would push the cardiologist for another echo. I think Caden and are both testimony's to how quickly the heart problems can start since they both had normal echos just a month or two before a significant finding.deb Please contact mito-owner with any problems or questions.

[Guest guest]

I am not sure if I have gotten my point across quite well enough so...here goes, her resting heart rate on a normal basis has been about 120 bpm. Dr. Whiteman was the one to inform me that her records showed a consistant tachycardia. But this last time in the hospital, not with dehydration-only fever, her heart rate was between 195 and 206 bpm for many hours. Since that time her heart rate has been about 140-150's at home and doc's office quite frequently, without fever or dehydration. Her breathing in the hospital was quite scary as she was flaring at the nose, sucking in at the neck, and heaving/wheezing in her chest. Her sats were 95-98 though so we weren't worried about that. She still has been breathing fast with an up and down pattern and even seems like her heart beat is somewhat irratic lately with it's beats. No big pauses though. She had been diagnosed with a spot on her left lung in the hospital also and has been coughing tons and flemmy. She threw up both this morning and this afternoon during her tube feedings. I am currently giving her pedialite to increase her fluids and she seems to be tollerating that, at least thus far. She has been sleeping all afternoon since about 1-2 PM and it is 6:40 PM now. Not sure what is going on now. Very frustrated and hoping she isn't starting to not tollerate her tube feedings as she has thrown up quite frequently since the hospital stay and the reinsertion of a new NG-tube. Surgery this coming week looks doubtful even though all the Des Moines doctors think it should be done. I just don't think Dr. Whiteman will want to do it to a child with cronic diahrrea, vomitting, tachycardia, etc. But she really needs that G-tube... Darla Re: Asenath/heart rate The low tone makes the differences I was told. thats pretty interesting...I was going to tell you about the heart rate. was only dehydrated once when he was in the hospital getting his gtube...one dumb resident to blame there, but thats another story. His heart rate started going up to 140-150 while in bed and his sats were a little lower than usual. He had been doing well and then something just changed. The docs there were not concerned (think when they have such a complex kid they get a little lax about these things even when they are new), even tho his heart rate was consistently 90-110. After calling our mito doc in Boston, he was able to figure that was dehydrated and call himself and had them hook the IVs back up and increase his intake and then it corrected itself. If the echo and the EKG are normal and it is ONLY when she is dehydrated, I would chalk it up to that...I believe that would happen to any of your kids if they were dehydrated. If you start taking it at home and you see it is elevated all the time and this is the new baseline, then I would push the cardiologist for another echo. I think Caden and are both testimony's to how quickly the heart problems can start since they both had normal echos just a month or two before a significant finding.deb Please contact mito-owner with any problems or questions.

[Guest guest]

Darla,

I am sorry for your frustrations and Asenath's ongoing troubles. I can totally relate.

No one knows your child like you do. A mother knows best. Go on your instinct.

Her heart rate would worry me too. But, even Just a fever, can accelerate the heart rate, without dehydration. How old is she? What does Dr. Whiteman think could be going on? Do you think it could be neurological? A neurological malfunction (common in mitochondrial patients), can cause the heart to have irregular beats and it wouldn't be seen by echo or EKG.

If your like me, you have thought of everything under the sun to be causing her accelerated pulse.

Do you think she could have a pneumonia or aspirated some of her NG feed? I would at least get a chest xray.

Do they say why she is having the chronic diahrrea? Is there anything you can do to help it?

Again, I hope this helps some,

Krystena

Re: Asenath/heart rate

The low tone makes the differences I was told. thats pretty interesting...I was going to tell you about the heart rate. was only dehydrated once when he was in the hospital getting his gtube...one dumb resident to blame there, but thats another story. His heart rate started going up to 140-150 while in bed and his sats were a little lower than usual. He had been doing well and then something just changed. The docs there were not concerned (think when they have such a complex kid they get a little lax about these things even when they are new), even tho his heart rate was consistently 90-110. After calling our mito doc in Boston, he was able to figure that was dehydrated and call himself and had them hook the IVs back up and increase his intake and then it corrected itself. If the echo and the EKG are normal and it is ONLY when she is dehydrated, I would chalk it up to that...I believe that would happen to any of your kids if they were dehydrated. If you start taking it at home and you see it is elevated all the time and this is the new baseline, then I would push the cardiologist for another echo. I think Caden and are both testimony's to how quickly the heart problems can start since they both had normal echos just a month or two before a significant finding.deb Please contact mito-owner with any problems or questions.

[Guest guest]

Darla,

I am sorry for your frustrations and Asenath's ongoing troubles. I can totally relate.

No one knows your child like you do. A mother knows best. Go on your instinct.

Her heart rate would worry me too. But, even Just a fever, can accelerate the heart rate, without dehydration. How old is she? What does Dr. Whiteman think could be going on? Do you think it could be neurological? A neurological malfunction (common in mitochondrial patients), can cause the heart to have irregular beats and it wouldn't be seen by echo or EKG.

If your like me, you have thought of everything under the sun to be causing her accelerated pulse.

Do you think she could have a pneumonia or aspirated some of her NG feed? I would at least get a chest xray.

Do they say why she is having the chronic diahrrea? Is there anything you can do to help it?

Again, I hope this helps some,

Krystena

Re: Asenath/heart rate

The low tone makes the differences I was told. thats pretty interesting...I was going to tell you about the heart rate. was only dehydrated once when he was in the hospital getting his gtube...one dumb resident to blame there, but thats another story. His heart rate started going up to 140-150 while in bed and his sats were a little lower than usual. He had been doing well and then something just changed. The docs there were not concerned (think when they have such a complex kid they get a little lax about these things even when they are new), even tho his heart rate was consistently 90-110. After calling our mito doc in Boston, he was able to figure that was dehydrated and call himself and had them hook the IVs back up and increase his intake and then it corrected itself. If the echo and the EKG are normal and it is ONLY when she is dehydrated, I would chalk it up to that...I believe that would happen to any of your kids if they were dehydrated. If you start taking it at home and you see it is elevated all the time and this is the new baseline, then I would push the cardiologist for another echo. I think Caden and are both testimony's to how quickly the heart problems can start since they both had normal echos just a month or two before a significant finding.deb Please contact mito-owner with any problems or questions.

[Guest guest]

Darla

Lot's of prayers coming your way! Please keep us posted.

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[Guest guest]

Darla

Lot's of prayers coming your way! Please keep us posted.

________________________________________________________________

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[Guest guest]

Hi Darla,

I'm not sure what you are dealing with here, but just in case it is something similar ......s cardiac problems have finally been diagnosed as " autonomic" his heart rate is slow, 60bpm average but when tired becomes very irreg. and at night his rate can drop to 30 bpm. and irreg. we have also just identified b.p. problems also autonomic instability, ( as i understand it the regulatory area in the brain doesn't work properly)

Good luck and i hope you get some answers..

Take care all, Jillian, s mom.

[Guest guest]

Hi Darla,

I'm not sure what you are dealing with here, but just in case it is something similar ......s cardiac problems have finally been diagnosed as " autonomic" his heart rate is slow, 60bpm average but when tired becomes very irreg. and at night his rate can drop to 30 bpm. and irreg. we have also just identified b.p. problems also autonomic instability, ( as i understand it the regulatory area in the brain doesn't work properly)

Good luck and i hope you get some answers..

Take care all, Jillian, s mom.

[Guest guest]

Hi Darla,

I'm not sure what you are dealing with here, but just in case it is something similar ......s cardiac problems have finally been diagnosed as " autonomic" his heart rate is slow, 60bpm average but when tired becomes very irreg. and at night his rate can drop to 30 bpm. and irreg. we have also just identified b.p. problems also autonomic instability, ( as i understand it the regulatory area in the brain doesn't work properly)

Good luck and i hope you get some answers..

Take care all, Jillian, s mom.

[Guest guest]

Darla,

My two cents about the feedings, since the breathing and heart problems are out of my league. When Cameron was on the ng tube feeds, they had to be done very slowly and I had to keep him upright for about 50 minutes after a feed in order to keep him from vomiting. Are you using a pump, if so that is easier to control how slowly the "drip" feed goes. Sometimes these kids just can not tolerate bolus ( several ounces at a time feeds). I have had to take as long as 40 minutes to give him 2 ounces. Now, she is older so she can probably go faster than this, but set the rate slow. If you do no have a pump and are using gravity feeds, hold the syringe lower and just give it time to slowly administer the formula. I hope this makes sense. Also, we read books, watch movies, play play dough or do other quiet activities during a feed. This helps Cameron concentrate on the activity and have patience while waiting for his "dose" to be done. Good lucky, if you have more questions please feel free to contact me personally.

I am praying that the surgery will happen quickly, but feeds may still be slow at first and during illness.

Re: Asenath/heart rate plus update

I am not sure if I have gotten my point across quite well enough so...here goes, her resting heart rate on a normal basis has been about 120 bpm. Dr. Whiteman was the one to inform me that her records showed a consistant tachycardia. But this last time in the hospital, not with dehydration-only fever, her heart rate was between 195 and 206 bpm for many hours. Since that time her heart rate has been about 140-150's at home and doc's office quite frequently, without fever or dehydration. Her breathing in the hospital was quite scary as she was flaring at the nose, sucking in at the neck, and heaving/wheezing in her chest. Her sats were 95-98 though so we weren't worried about that. She still has been breathing fast with an up and down pattern and even seems like her heart beat is somewhat irratic lately with it's beats. No big pauses though. She had been diagnosed with a spot on her left lung in the hospital also and has been coughing tons and flemmy. She threw up both this morning and this afternoon during her tube feedings. I am currently giving her pedialite to increase her fluids and she seems to be tollerating that, at least thus far. She has been sleeping all afternoon since about 1-2 PM and it is 6:40 PM now. Not sure what is going on now. Very frustrated and hoping she isn't starting to not tollerate her tube feedings as she has thrown up quite frequently since the hospital stay and the reinsertion of a new NG-tube. Surgery this coming week looks doubtful even though all the Des Moines doctors think it should be done. I just don't think Dr. Whiteman will want to do it to a child with cronic diahrrea, vomitting, tachycardia, etc. But she really needs that G-tube...

Darla

Re: Asenath/heart rate

The low tone makes the differences I was told. thats pretty interesting...I was going to tell you about the heart rate. was only dehydrated once when he was in the hospital getting his gtube...one dumb resident to blame there, but thats another story. His heart rate started going up to 140-150 while in bed and his sats were a little lower than usual. He had been doing well and then something just changed. The docs there were not concerned (think when they have such a complex kid they get a little lax about these things even when they are new), even tho his heart rate was consistently 90-110. After calling our mito doc in Boston, he was able to figure that was dehydrated and call himself and had them hook the IVs back up and increase his intake and then it corrected itself. If the echo and the EKG are normal and it is ONLY when she is dehydrated, I would chalk it up to that...I believe that would happen to any of your kids if they were dehydrated. If you start taking it at home and you see it is elevated all the time and this is the new baseline, then I would push the cardiologist for another echo. I think Caden and are both testimony's to how quickly the heart problems can start since they both had normal echos just a month or two before a significant finding.deb Please contact mito-owner with any problems or questions.

[Guest guest]

Darla,

My two cents about the feedings, since the breathing and heart problems are out of my league. When Cameron was on the ng tube feeds, they had to be done very slowly and I had to keep him upright for about 50 minutes after a feed in order to keep him from vomiting. Are you using a pump, if so that is easier to control how slowly the "drip" feed goes. Sometimes these kids just can not tolerate bolus ( several ounces at a time feeds). I have had to take as long as 40 minutes to give him 2 ounces. Now, she is older so she can probably go faster than this, but set the rate slow. If you do no have a pump and are using gravity feeds, hold the syringe lower and just give it time to slowly administer the formula. I hope this makes sense. Also, we read books, watch movies, play play dough or do other quiet activities during a feed. This helps Cameron concentrate on the activity and have patience while waiting for his "dose" to be done. Good lucky, if you have more questions please feel free to contact me personally.

I am praying that the surgery will happen quickly, but feeds may still be slow at first and during illness.

Re: Asenath/heart rate plus update

I am not sure if I have gotten my point across quite well enough so...here goes, her resting heart rate on a normal basis has been about 120 bpm. Dr. Whiteman was the one to inform me that her records showed a consistant tachycardia. But this last time in the hospital, not with dehydration-only fever, her heart rate was between 195 and 206 bpm for many hours. Since that time her heart rate has been about 140-150's at home and doc's office quite frequently, without fever or dehydration. Her breathing in the hospital was quite scary as she was flaring at the nose, sucking in at the neck, and heaving/wheezing in her chest. Her sats were 95-98 though so we weren't worried about that. She still has been breathing fast with an up and down pattern and even seems like her heart beat is somewhat irratic lately with it's beats. No big pauses though. She had been diagnosed with a spot on her left lung in the hospital also and has been coughing tons and flemmy. She threw up both this morning and this afternoon during her tube feedings. I am currently giving her pedialite to increase her fluids and she seems to be tollerating that, at least thus far. She has been sleeping all afternoon since about 1-2 PM and it is 6:40 PM now. Not sure what is going on now. Very frustrated and hoping she isn't starting to not tollerate her tube feedings as she has thrown up quite frequently since the hospital stay and the reinsertion of a new NG-tube. Surgery this coming week looks doubtful even though all the Des Moines doctors think it should be done. I just don't think Dr. Whiteman will want to do it to a child with cronic diahrrea, vomitting, tachycardia, etc. But she really needs that G-tube...

Darla

Re: Asenath/heart rate

The low tone makes the differences I was told. thats pretty interesting...I was going to tell you about the heart rate. was only dehydrated once when he was in the hospital getting his gtube...one dumb resident to blame there, but thats another story. His heart rate started going up to 140-150 while in bed and his sats were a little lower than usual. He had been doing well and then something just changed. The docs there were not concerned (think when they have such a complex kid they get a little lax about these things even when they are new), even tho his heart rate was consistently 90-110. After calling our mito doc in Boston, he was able to figure that was dehydrated and call himself and had them hook the IVs back up and increase his intake and then it corrected itself. If the echo and the EKG are normal and it is ONLY when she is dehydrated, I would chalk it up to that...I believe that would happen to any of your kids if they were dehydrated. If you start taking it at home and you see it is elevated all the time and this is the new baseline, then I would push the cardiologist for another echo. I think Caden and are both testimony's to how quickly the heart problems can start since they both had normal echos just a month or two before a significant finding.deb Please contact mito-owner with any problems or questions.

[Guest guest]

Darla,

My two cents about the feedings, since the breathing and heart problems are out of my league. When Cameron was on the ng tube feeds, they had to be done very slowly and I had to keep him upright for about 50 minutes after a feed in order to keep him from vomiting. Are you using a pump, if so that is easier to control how slowly the "drip" feed goes. Sometimes these kids just can not tolerate bolus ( several ounces at a time feeds). I have had to take as long as 40 minutes to give him 2 ounces. Now, she is older so she can probably go faster than this, but set the rate slow. If you do no have a pump and are using gravity feeds, hold the syringe lower and just give it time to slowly administer the formula. I hope this makes sense. Also, we read books, watch movies, play play dough or do other quiet activities during a feed. This helps Cameron concentrate on the activity and have patience while waiting for his "dose" to be done. Good lucky, if you have more questions please feel free to contact me personally.

I am praying that the surgery will happen quickly, but feeds may still be slow at first and during illness.

Re: Asenath/heart rate plus update

I am not sure if I have gotten my point across quite well enough so...here goes, her resting heart rate on a normal basis has been about 120 bpm. Dr. Whiteman was the one to inform me that her records showed a consistant tachycardia. But this last time in the hospital, not with dehydration-only fever, her heart rate was between 195 and 206 bpm for many hours. Since that time her heart rate has been about 140-150's at home and doc's office quite frequently, without fever or dehydration. Her breathing in the hospital was quite scary as she was flaring at the nose, sucking in at the neck, and heaving/wheezing in her chest. Her sats were 95-98 though so we weren't worried about that. She still has been breathing fast with an up and down pattern and even seems like her heart beat is somewhat irratic lately with it's beats. No big pauses though. She had been diagnosed with a spot on her left lung in the hospital also and has been coughing tons and flemmy. She threw up both this morning and this afternoon during her tube feedings. I am currently giving her pedialite to increase her fluids and she seems to be tollerating that, at least thus far. She has been sleeping all afternoon since about 1-2 PM and it is 6:40 PM now. Not sure what is going on now. Very frustrated and hoping she isn't starting to not tollerate her tube feedings as she has thrown up quite frequently since the hospital stay and the reinsertion of a new NG-tube. Surgery this coming week looks doubtful even though all the Des Moines doctors think it should be done. I just don't think Dr. Whiteman will want to do it to a child with cronic diahrrea, vomitting, tachycardia, etc. But she really needs that G-tube...

Darla

Re: Asenath/heart rate

The low tone makes the differences I was told. thats pretty interesting...I was going to tell you about the heart rate. was only dehydrated once when he was in the hospital getting his gtube...one dumb resident to blame there, but thats another story. His heart rate started going up to 140-150 while in bed and his sats were a little lower than usual. He had been doing well and then something just changed. The docs there were not concerned (think when they have such a complex kid they get a little lax about these things even when they are new), even tho his heart rate was consistently 90-110. After calling our mito doc in Boston, he was able to figure that was dehydrated and call himself and had them hook the IVs back up and increase his intake and then it corrected itself. If the echo and the EKG are normal and it is ONLY when she is dehydrated, I would chalk it up to that...I believe that would happen to any of your kids if they were dehydrated. If you start taking it at home and you see it is elevated all the time and this is the new baseline, then I would push the cardiologist for another echo. I think Caden and are both testimony's to how quickly the heart problems can start since they both had normal echos just a month or two before a significant finding.deb Please contact mito-owner with any problems or questions.