GI issues ? and a genetic testing ?

pjspiegle

New member
I am so sorry you are having to go through all of this. I have a pretty good idea how you must feel. They (doctors) have a way of making you feel like some kind of aweful mother because you know deep inside something is wrong, are pretty sure what you think it is, and they keep on insisting you are wrong but can't or won't prove it to you. They tell you how bad things are and that you should not want your child to have "it" but they miss the point, you don't want them to have "it" you just want your child to get the correct treatment even if it means they have "it". Yet, you somehow start feeling how aweful a mother you must be because you believe your child has this horrible thing wrong with them but you are the only one that believes it.

Keep following your instincts and keep being persistant till they absolutely prove you wrong. We know the truth, you are not wishing any harm to your child, you just want them to get better and get the correct needed medical attention to give them the best chance they can have at life. I think doctors get so use to dealing with the kind of parents that don't show much interest or in denial about what is wrong, that they do not know how to deal with those of us who are interested in our children, are not in denial, and have good instincts about our kiddos and are in tune with them enough to know when something just isn't right.

Hopefully you will find a doctor that can put your mind at ease and figure out what is wrong with your little one, whether it is CF or something much simplier and easier to deal with. You just want an accurrate diagnosis.

I feel for you and will keep you and your little one in my prayers.
 

pjspiegle

New member
I am so sorry you are having to go through all of this. I have a pretty good idea how you must feel. They (doctors) have a way of making you feel like some kind of aweful mother because you know deep inside something is wrong, are pretty sure what you think it is, and they keep on insisting you are wrong but can't or won't prove it to you. They tell you how bad things are and that you should not want your child to have "it" but they miss the point, you don't want them to have "it" you just want your child to get the correct treatment even if it means they have "it". Yet, you somehow start feeling how aweful a mother you must be because you believe your child has this horrible thing wrong with them but you are the only one that believes it.

Keep following your instincts and keep being persistant till they absolutely prove you wrong. We know the truth, you are not wishing any harm to your child, you just want them to get better and get the correct needed medical attention to give them the best chance they can have at life. I think doctors get so use to dealing with the kind of parents that don't show much interest or in denial about what is wrong, that they do not know how to deal with those of us who are interested in our children, are not in denial, and have good instincts about our kiddos and are in tune with them enough to know when something just isn't right.

Hopefully you will find a doctor that can put your mind at ease and figure out what is wrong with your little one, whether it is CF or something much simplier and easier to deal with. You just want an accurrate diagnosis.

I feel for you and will keep you and your little one in my prayers.
 

pjspiegle

New member
I am so sorry you are having to go through all of this. I have a pretty good idea how you must feel. They (doctors) have a way of making you feel like some kind of aweful mother because you know deep inside something is wrong, are pretty sure what you think it is, and they keep on insisting you are wrong but can't or won't prove it to you. They tell you how bad things are and that you should not want your child to have "it" but they miss the point, you don't want them to have "it" you just want your child to get the correct treatment even if it means they have "it". Yet, you somehow start feeling how aweful a mother you must be because you believe your child has this horrible thing wrong with them but you are the only one that believes it.

Keep following your instincts and keep being persistant till they absolutely prove you wrong. We know the truth, you are not wishing any harm to your child, you just want them to get better and get the correct needed medical attention to give them the best chance they can have at life. I think doctors get so use to dealing with the kind of parents that don't show much interest or in denial about what is wrong, that they do not know how to deal with those of us who are interested in our children, are not in denial, and have good instincts about our kiddos and are in tune with them enough to know when something just isn't right.

Hopefully you will find a doctor that can put your mind at ease and figure out what is wrong with your little one, whether it is CF or something much simplier and easier to deal with. You just want an accurrate diagnosis.

I feel for you and will keep you and your little one in my prayers.
 

pjspiegle

New member
I am so sorry you are having to go through all of this. I have a pretty good idea how you must feel. They (doctors) have a way of making you feel like some kind of aweful mother because you know deep inside something is wrong, are pretty sure what you think it is, and they keep on insisting you are wrong but can't or won't prove it to you. They tell you how bad things are and that you should not want your child to have "it" but they miss the point, you don't want them to have "it" you just want your child to get the correct treatment even if it means they have "it". Yet, you somehow start feeling how aweful a mother you must be because you believe your child has this horrible thing wrong with them but you are the only one that believes it.

Keep following your instincts and keep being persistant till they absolutely prove you wrong. We know the truth, you are not wishing any harm to your child, you just want them to get better and get the correct needed medical attention to give them the best chance they can have at life. I think doctors get so use to dealing with the kind of parents that don't show much interest or in denial about what is wrong, that they do not know how to deal with those of us who are interested in our children, are not in denial, and have good instincts about our kiddos and are in tune with them enough to know when something just isn't right.

Hopefully you will find a doctor that can put your mind at ease and figure out what is wrong with your little one, whether it is CF or something much simplier and easier to deal with. You just want an accurrate diagnosis.

I feel for you and will keep you and your little one in my prayers.
 

pjspiegle

New member
I am so sorry you are having to go through all of this. I have a pretty good idea how you must feel. They (doctors) have a way of making you feel like some kind of aweful mother because you know deep inside something is wrong, are pretty sure what you think it is, and they keep on insisting you are wrong but can't or won't prove it to you. They tell you how bad things are and that you should not want your child to have "it" but they miss the point, you don't want them to have "it" you just want your child to get the correct treatment even if it means they have "it". Yet, you somehow start feeling how aweful a mother you must be because you believe your child has this horrible thing wrong with them but you are the only one that believes it.

Keep following your instincts and keep being persistant till they absolutely prove you wrong. We know the truth, you are not wishing any harm to your child, you just want them to get better and get the correct needed medical attention to give them the best chance they can have at life. I think doctors get so use to dealing with the kind of parents that don't show much interest or in denial about what is wrong, that they do not know how to deal with those of us who are interested in our children, are not in denial, and have good instincts about our kiddos and are in tune with them enough to know when something just isn't right.

Hopefully you will find a doctor that can put your mind at ease and figure out what is wrong with your little one, whether it is CF or something much simplier and easier to deal with. You just want an accurrate diagnosis.

I feel for you and will keep you and your little one in my prayers.
 

mlejcbs

New member
That is so accurate! Thank you Patty.

I made a visit to the office today to take in the pictures and he did speak with me for almost 2 hours (his lunch break) which made me feel a little better about his level of concern. So for now, we have a referral to the Pulmonologist and a barium test to be done as he thinks the has some rapid transit problem? After all that THEN he says he will do a scope- flat out no way is he doing the Ambry test because he says none of her blood work indicates CF (except possibly her AST levels but he didn't say that, I did) anyway if after all that we still don't have an answer he will refer me to another GI. So- hopefully I will know in the next month if I have to pay for this test myself or not.
 

mlejcbs

New member
That is so accurate! Thank you Patty.

I made a visit to the office today to take in the pictures and he did speak with me for almost 2 hours (his lunch break) which made me feel a little better about his level of concern. So for now, we have a referral to the Pulmonologist and a barium test to be done as he thinks the has some rapid transit problem? After all that THEN he says he will do a scope- flat out no way is he doing the Ambry test because he says none of her blood work indicates CF (except possibly her AST levels but he didn't say that, I did) anyway if after all that we still don't have an answer he will refer me to another GI. So- hopefully I will know in the next month if I have to pay for this test myself or not.
 

mlejcbs

New member
That is so accurate! Thank you Patty.

I made a visit to the office today to take in the pictures and he did speak with me for almost 2 hours (his lunch break) which made me feel a little better about his level of concern. So for now, we have a referral to the Pulmonologist and a barium test to be done as he thinks the has some rapid transit problem? After all that THEN he says he will do a scope- flat out no way is he doing the Ambry test because he says none of her blood work indicates CF (except possibly her AST levels but he didn't say that, I did) anyway if after all that we still don't have an answer he will refer me to another GI. So- hopefully I will know in the next month if I have to pay for this test myself or not.
 

mlejcbs

New member
That is so accurate! Thank you Patty.

I made a visit to the office today to take in the pictures and he did speak with me for almost 2 hours (his lunch break) which made me feel a little better about his level of concern. So for now, we have a referral to the Pulmonologist and a barium test to be done as he thinks the has some rapid transit problem? After all that THEN he says he will do a scope- flat out no way is he doing the Ambry test because he says none of her blood work indicates CF (except possibly her AST levels but he didn't say that, I did) anyway if after all that we still don't have an answer he will refer me to another GI. So- hopefully I will know in the next month if I have to pay for this test myself or not.
 

mlejcbs

New member
That is so accurate! Thank you Patty.

I made a visit to the office today to take in the pictures and he did speak with me for almost 2 hours (his lunch break) which made me feel a little better about his level of concern. So for now, we have a referral to the Pulmonologist and a barium test to be done as he thinks the has some rapid transit problem? After all that THEN he says he will do a scope- flat out no way is he doing the Ambry test because he says none of her blood work indicates CF (except possibly her AST levels but he didn't say that, I did) anyway if after all that we still don't have an answer he will refer me to another GI. So- hopefully I will know in the next month if I have to pay for this test myself or not.
 
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