HEllo Everyone. Well, Zakary had his sweat test done this morning. They said that by evening we would possible know the results. But when the test was over and they were removing the patch of sweat she stated that she felt we were going to have to go to advanced testing because there wasn't enough there. She stated that some children just dont respond well to the test. I was just wondering if this happen to any one else? What is the "Advanced testing"? and does this mean something that he was unable to complete the test the way the hoped? Any thoughts are much appriciated. I just and going crazy now knowing all these anwsers.
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repeating the sweat test.
- Thread starter Zakarymom
- Start date
HEllo Everyone. Well, Zakary had his sweat test done this morning. They said that by evening we would possible know the results. But when the test was over and they were removing the patch of sweat she stated that she felt we were going to have to go to advanced testing because there wasn't enough there. She stated that some children just dont respond well to the test. I was just wondering if this happen to any one else? What is the "Advanced testing"? and does this mean something that he was unable to complete the test the way the hoped? Any thoughts are much appriciated. I just and going crazy now knowing all these anwsers.
HEllo Everyone. Well, Zakary had his sweat test done this morning. They said that by evening we would possible know the results. But when the test was over and they were removing the patch of sweat she stated that she felt we were going to have to go to advanced testing because there wasn't enough there. She stated that some children just dont respond well to the test. I was just wondering if this happen to any one else? What is the "Advanced testing"? and does this mean something that he was unable to complete the test the way the hoped? Any thoughts are much appriciated. I just and going crazy now knowing all these anwsers.
I'm so sorry, bengismom, to hear about your son's diagnosis. It must have been such a shock to you and your family. I can't imagine how relieved you must have felt to have a negative sweat test and then how shocked and confused you must have been to find out it was wrong. Just out of curiousity, what was your son's sweat chloride? Do you know if it was it above or below 30? Was your child breastfeeding or on soy formula? Occasionally soy or breastfed babies can have low sweat chloride as a result of not being able to absorb enough protein. My daughter had one very low sweat chloride when she was 9 months and then 7 months later it was high and she was breastfed so we wonder if that was responsible for the difference in the values (by 15 months she was eating more protein like eggs and meat).
It sounds as if you have great doctors who are working hard to get your child the treatment he needs which is the upside to all of this if there is one at all. I know how hard it can be to not focus on all of the negative things that come with the diagnosis but i encouarage you to love your baby for all the things that make him wonderful since he is still the same amazing person he was before the diagnosis. One thing that continues to surprise me about my daughter is her ability to just continue to be herself in spite of all the health problems.
Again i am so sorry to hear about your child! This is a wonderful community with a lot of other moms and dads who have had similar experiences. I encouarage you to ask as many questions as you need too.
It sounds as if you have great doctors who are working hard to get your child the treatment he needs which is the upside to all of this if there is one at all. I know how hard it can be to not focus on all of the negative things that come with the diagnosis but i encouarage you to love your baby for all the things that make him wonderful since he is still the same amazing person he was before the diagnosis. One thing that continues to surprise me about my daughter is her ability to just continue to be herself in spite of all the health problems.
Again i am so sorry to hear about your child! This is a wonderful community with a lot of other moms and dads who have had similar experiences. I encouarage you to ask as many questions as you need too.
I'm so sorry, bengismom, to hear about your son's diagnosis. It must have been such a shock to you and your family. I can't imagine how relieved you must have felt to have a negative sweat test and then how shocked and confused you must have been to find out it was wrong. Just out of curiousity, what was your son's sweat chloride? Do you know if it was it above or below 30? Was your child breastfeeding or on soy formula? Occasionally soy or breastfed babies can have low sweat chloride as a result of not being able to absorb enough protein. My daughter had one very low sweat chloride when she was 9 months and then 7 months later it was high and she was breastfed so we wonder if that was responsible for the difference in the values (by 15 months she was eating more protein like eggs and meat).
It sounds as if you have great doctors who are working hard to get your child the treatment he needs which is the upside to all of this if there is one at all. I know how hard it can be to not focus on all of the negative things that come with the diagnosis but i encouarage you to love your baby for all the things that make him wonderful since he is still the same amazing person he was before the diagnosis. One thing that continues to surprise me about my daughter is her ability to just continue to be herself in spite of all the health problems.
Again i am so sorry to hear about your child! This is a wonderful community with a lot of other moms and dads who have had similar experiences. I encouarage you to ask as many questions as you need too.
It sounds as if you have great doctors who are working hard to get your child the treatment he needs which is the upside to all of this if there is one at all. I know how hard it can be to not focus on all of the negative things that come with the diagnosis but i encouarage you to love your baby for all the things that make him wonderful since he is still the same amazing person he was before the diagnosis. One thing that continues to surprise me about my daughter is her ability to just continue to be herself in spite of all the health problems.
Again i am so sorry to hear about your child! This is a wonderful community with a lot of other moms and dads who have had similar experiences. I encouarage you to ask as many questions as you need too.
I'm so sorry, bengismom, to hear about your son's diagnosis. It must have been such a shock to you and your family. I can't imagine how relieved you must have felt to have a negative sweat test and then how shocked and confused you must have been to find out it was wrong. Just out of curiousity, what was your son's sweat chloride? Do you know if it was it above or below 30? Was your child breastfeeding or on soy formula? Occasionally soy or breastfed babies can have low sweat chloride as a result of not being able to absorb enough protein. My daughter had one very low sweat chloride when she was 9 months and then 7 months later it was high and she was breastfed so we wonder if that was responsible for the difference in the values (by 15 months she was eating more protein like eggs and meat).
It sounds as if you have great doctors who are working hard to get your child the treatment he needs which is the upside to all of this if there is one at all. I know how hard it can be to not focus on all of the negative things that come with the diagnosis but i encouarage you to love your baby for all the things that make him wonderful since he is still the same amazing person he was before the diagnosis. One thing that continues to surprise me about my daughter is her ability to just continue to be herself in spite of all the health problems.
Again i am so sorry to hear about your child! This is a wonderful community with a lot of other moms and dads who have had similar experiences. I encouarage you to ask as many questions as you need too.
It sounds as if you have great doctors who are working hard to get your child the treatment he needs which is the upside to all of this if there is one at all. I know how hard it can be to not focus on all of the negative things that come with the diagnosis but i encouarage you to love your baby for all the things that make him wonderful since he is still the same amazing person he was before the diagnosis. One thing that continues to surprise me about my daughter is her ability to just continue to be herself in spite of all the health problems.
Again i am so sorry to hear about your child! This is a wonderful community with a lot of other moms and dads who have had similar experiences. I encouarage you to ask as many questions as you need too.
Benjamin is loosing weigth every day and is in bad shape , He has been in the hospital since nov. 6th and has just been going down hill since ,.......(how do you get your daughter to gain weight?) 44 was his sweat chloride and yeah hes on this neocate 27cal formula with mct oils, Yes, i did brest feed him at first.......i guess i cant change the diagnosis, But i will keep faith that he will pull through .... we have found out my 3 year old has cf to...............he had all the same problems that ben has but not as bad ,i guess keeping good track of their hospital care and being their for them will help them pull through this and i hope your daughter is doing well ................................(god bless you)
Benjamin is loosing weigth every day and is in bad shape , He has been in the hospital since nov. 6th and has just been going down hill since ,.......(how do you get your daughter to gain weight?) 44 was his sweat chloride and yeah hes on this neocate 27cal formula with mct oils, Yes, i did brest feed him at first.......i guess i cant change the diagnosis, But i will keep faith that he will pull through .... we have found out my 3 year old has cf to...............he had all the same problems that ben has but not as bad ,i guess keeping good track of their hospital care and being their for them will help them pull through this and i hope your daughter is doing well ................................(god bless you)
Benjamin is loosing weigth every day and is in bad shape , He has been in the hospital since nov. 6th and has just been going down hill since ,.......(how do you get your daughter to gain weight?) 44 was his sweat chloride and yeah hes on this neocate 27cal formula with mct oils, Yes, i did brest feed him at first.......i guess i cant change the diagnosis, But i will keep faith that he will pull through .... we have found out my 3 year old has cf to...............he had all the same problems that ben has but not as bad ,i guess keeping good track of their hospital care and being their for them will help them pull through this and i hope your daughter is doing well ................................(god bless you)
I agree with Amy. Had we received a DNA panel test like Ambrey or Guthrey at 7 weeks when he presented with vitamin K deficiency it would have saved us 7 more weeks of unsuccessful sweat tests and many more complications. It wasn't until the 4th one they finally were able to get a positive and 2 weeks later we were confirmed via DNA testing. Try and push for the DNA testing if you can. I know how hard all of this waiting and testing is...hang in there.
Sincerley,
Sincerley,
I agree with Amy. Had we received a DNA panel test like Ambrey or Guthrey at 7 weeks when he presented with vitamin K deficiency it would have saved us 7 more weeks of unsuccessful sweat tests and many more complications. It wasn't until the 4th one they finally were able to get a positive and 2 weeks later we were confirmed via DNA testing. Try and push for the DNA testing if you can. I know how hard all of this waiting and testing is...hang in there.
Sincerley,
Sincerley,