UPDATED - The genetic results on Isaac are in.... not good :-( - UPDATED

W

wanderlost

New member
The genetic results on Isaac are in.... not good :-(

The vas deferns thing sounds very promising. I hope you'll come to find that Isaac will lead a life not even batting an eye at Cf - like if you hadn't had this test maybe one day he would have gotten tested before having his own kids and went "oh, hey, whaddoyaknow?" that kind of Cf diagnosis.

As I said in my PM, anything you need, let me (us) know!

Kiss that baby for me!
 
W

wanderlost

New member
The genetic results on Isaac are in.... not good :-(

The vas deferns thing sounds very promising. I hope you'll come to find that Isaac will lead a life not even batting an eye at Cf - like if you hadn't had this test maybe one day he would have gotten tested before having his own kids and went "oh, hey, whaddoyaknow?" that kind of Cf diagnosis.

As I said in my PM, anything you need, let me (us) know!

Kiss that baby for me!
 
W

wanderlost

New member
The genetic results on Isaac are in.... not good :-(

The vas deferns thing sounds very promising. I hope you'll come to find that Isaac will lead a life not even batting an eye at Cf - like if you hadn't had this test maybe one day he would have gotten tested before having his own kids and went "oh, hey, whaddoyaknow?" that kind of Cf diagnosis.

As I said in my PM, anything you need, let me (us) know!

Kiss that baby for me!
 
W

wanderlost

New member
The genetic results on Isaac are in.... not good :-(

The vas deferns thing sounds very promising. I hope you'll come to find that Isaac will lead a life not even batting an eye at Cf - like if you hadn't had this test maybe one day he would have gotten tested before having his own kids and went "oh, hey, whaddoyaknow?" that kind of Cf diagnosis.

As I said in my PM, anything you need, let me (us) know!

Kiss that baby for me!
 
W

wanderlost

New member
The genetic results on Isaac are in.... not good :-(

The vas deferns thing sounds very promising. I hope you'll come to find that Isaac will lead a life not even batting an eye at Cf - like if you hadn't had this test maybe one day he would have gotten tested before having his own kids and went "oh, hey, whaddoyaknow?" that kind of Cf diagnosis.

As I said in my PM, anything you need, let me (us) know!

Kiss that baby for me!
 
K

Keepercjr

Guest
So sorry Lauren <img src="i/expressions/face-icon-small-sad.gif" border="0">

After I had Logan I realized all the pain and heartache that my parents must have gone through with both their kids having CF. Logan is CF free but I don't know how anyone handles illnesses in their babies (he will always be my baby). It must be SO HARD.

You said he already weighs 16 lbs right? Sounds like he's doing great on mama's milk and doesn't seem to have any malabsorbtion problems! Heck my "healthy" boy only weighed 17 lbs at 13 months. Nobody is to blame for him having 2 mutations. Sometimes things just happen.
 
K

Keepercjr

Guest
So sorry Lauren <img src="i/expressions/face-icon-small-sad.gif" border="0">

After I had Logan I realized all the pain and heartache that my parents must have gone through with both their kids having CF. Logan is CF free but I don't know how anyone handles illnesses in their babies (he will always be my baby). It must be SO HARD.

You said he already weighs 16 lbs right? Sounds like he's doing great on mama's milk and doesn't seem to have any malabsorbtion problems! Heck my "healthy" boy only weighed 17 lbs at 13 months. Nobody is to blame for him having 2 mutations. Sometimes things just happen.
 
K

Keepercjr

Guest
So sorry Lauren <img src="i/expressions/face-icon-small-sad.gif" border="0">

After I had Logan I realized all the pain and heartache that my parents must have gone through with both their kids having CF. Logan is CF free but I don't know how anyone handles illnesses in their babies (he will always be my baby). It must be SO HARD.

You said he already weighs 16 lbs right? Sounds like he's doing great on mama's milk and doesn't seem to have any malabsorbtion problems! Heck my "healthy" boy only weighed 17 lbs at 13 months. Nobody is to blame for him having 2 mutations. Sometimes things just happen.
 
K

Keepercjr

Guest
So sorry Lauren <img src="i/expressions/face-icon-small-sad.gif" border="0">

After I had Logan I realized all the pain and heartache that my parents must have gone through with both their kids having CF. Logan is CF free but I don't know how anyone handles illnesses in their babies (he will always be my baby). It must be SO HARD.

You said he already weighs 16 lbs right? Sounds like he's doing great on mama's milk and doesn't seem to have any malabsorbtion problems! Heck my "healthy" boy only weighed 17 lbs at 13 months. Nobody is to blame for him having 2 mutations. Sometimes things just happen.
 
K

Keepercjr

Guest
So sorry Lauren <img src="i/expressions/face-icon-small-sad.gif" border="0">

After I had Logan I realized all the pain and heartache that my parents must have gone through with both their kids having CF. Logan is CF free but I don't know how anyone handles illnesses in their babies (he will always be my baby). It must be SO HARD.

You said he already weighs 16 lbs right? Sounds like he's doing great on mama's milk and doesn't seem to have any malabsorbtion problems! Heck my "healthy" boy only weighed 17 lbs at 13 months. Nobody is to blame for him having 2 mutations. Sometimes things just happen.
 
W

Wendy

Guest
The genetic results on Isaac are in.... not good :-(

Oh Lauren! I am soo sorry and sad to hear all this news. I only have time to check in once or twice a week lately and I missed this post earlier. My thoughts and prayers are with you and your husband (and of course Isaac).

Please tell me what testing you requested as my kids (both) are scheduled to be tested next week. Like you, we had my husband tested before (back in '02) but it was only the standard 89 mutations test. Lately I have been concerned that we would be in the situation you are experiencing, so I requested a full panel with Ambry at my daughters checkup. My pedi talked to my cf clinic about how to request the tests and gave me a prescription for "lab draw for CF DNA carrier testing". The nurse coordinator at the clinic told me they will send my screening results (my mutations) with my husbands results (negative for the ones tested) along with the kids samples and check that way. She said it is less expensive to narrow down the testing field. I am not worried about the cost and am concerned that this will not catch any unidentified mutations or newer ones if they selectively test. I think I read before that you did not use Ambry (and can't think of the other tester). Who did you use and what was the name of the screen. Also, did you have any problems getting this testing done or with the insurance?

Any advice you have would be appreciated.

Once again, I am sorry to hear of Isaac's results and will keep you in my prayers. <img src="i/expressions/brokenheart.gif" border="0">
 
W

Wendy

Guest
The genetic results on Isaac are in.... not good :-(

Oh Lauren! I am soo sorry and sad to hear all this news. I only have time to check in once or twice a week lately and I missed this post earlier. My thoughts and prayers are with you and your husband (and of course Isaac).

Please tell me what testing you requested as my kids (both) are scheduled to be tested next week. Like you, we had my husband tested before (back in '02) but it was only the standard 89 mutations test. Lately I have been concerned that we would be in the situation you are experiencing, so I requested a full panel with Ambry at my daughters checkup. My pedi talked to my cf clinic about how to request the tests and gave me a prescription for "lab draw for CF DNA carrier testing". The nurse coordinator at the clinic told me they will send my screening results (my mutations) with my husbands results (negative for the ones tested) along with the kids samples and check that way. She said it is less expensive to narrow down the testing field. I am not worried about the cost and am concerned that this will not catch any unidentified mutations or newer ones if they selectively test. I think I read before that you did not use Ambry (and can't think of the other tester). Who did you use and what was the name of the screen. Also, did you have any problems getting this testing done or with the insurance?

Any advice you have would be appreciated.

Once again, I am sorry to hear of Isaac's results and will keep you in my prayers. <img src="i/expressions/brokenheart.gif" border="0">
 
W

Wendy

Guest
The genetic results on Isaac are in.... not good :-(

Oh Lauren! I am soo sorry and sad to hear all this news. I only have time to check in once or twice a week lately and I missed this post earlier. My thoughts and prayers are with you and your husband (and of course Isaac).

Please tell me what testing you requested as my kids (both) are scheduled to be tested next week. Like you, we had my husband tested before (back in '02) but it was only the standard 89 mutations test. Lately I have been concerned that we would be in the situation you are experiencing, so I requested a full panel with Ambry at my daughters checkup. My pedi talked to my cf clinic about how to request the tests and gave me a prescription for "lab draw for CF DNA carrier testing". The nurse coordinator at the clinic told me they will send my screening results (my mutations) with my husbands results (negative for the ones tested) along with the kids samples and check that way. She said it is less expensive to narrow down the testing field. I am not worried about the cost and am concerned that this will not catch any unidentified mutations or newer ones if they selectively test. I think I read before that you did not use Ambry (and can't think of the other tester). Who did you use and what was the name of the screen. Also, did you have any problems getting this testing done or with the insurance?

Any advice you have would be appreciated.

Once again, I am sorry to hear of Isaac's results and will keep you in my prayers. <img src="i/expressions/brokenheart.gif" border="0">
 
W

Wendy

Guest
The genetic results on Isaac are in.... not good :-(

Oh Lauren! I am soo sorry and sad to hear all this news. I only have time to check in once or twice a week lately and I missed this post earlier. My thoughts and prayers are with you and your husband (and of course Isaac).

Please tell me what testing you requested as my kids (both) are scheduled to be tested next week. Like you, we had my husband tested before (back in '02) but it was only the standard 89 mutations test. Lately I have been concerned that we would be in the situation you are experiencing, so I requested a full panel with Ambry at my daughters checkup. My pedi talked to my cf clinic about how to request the tests and gave me a prescription for "lab draw for CF DNA carrier testing". The nurse coordinator at the clinic told me they will send my screening results (my mutations) with my husbands results (negative for the ones tested) along with the kids samples and check that way. She said it is less expensive to narrow down the testing field. I am not worried about the cost and am concerned that this will not catch any unidentified mutations or newer ones if they selectively test. I think I read before that you did not use Ambry (and can't think of the other tester). Who did you use and what was the name of the screen. Also, did you have any problems getting this testing done or with the insurance?

Any advice you have would be appreciated.

Once again, I am sorry to hear of Isaac's results and will keep you in my prayers. <img src="i/expressions/brokenheart.gif" border="0">
 
W

Wendy

Guest
The genetic results on Isaac are in.... not good :-(

Oh Lauren! I am soo sorry and sad to hear all this news. I only have time to check in once or twice a week lately and I missed this post earlier. My thoughts and prayers are with you and your husband (and of course Isaac).

Please tell me what testing you requested as my kids (both) are scheduled to be tested next week. Like you, we had my husband tested before (back in '02) but it was only the standard 89 mutations test. Lately I have been concerned that we would be in the situation you are experiencing, so I requested a full panel with Ambry at my daughters checkup. My pedi talked to my cf clinic about how to request the tests and gave me a prescription for "lab draw for CF DNA carrier testing". The nurse coordinator at the clinic told me they will send my screening results (my mutations) with my husbands results (negative for the ones tested) along with the kids samples and check that way. She said it is less expensive to narrow down the testing field. I am not worried about the cost and am concerned that this will not catch any unidentified mutations or newer ones if they selectively test. I think I read before that you did not use Ambry (and can't think of the other tester). Who did you use and what was the name of the screen. Also, did you have any problems getting this testing done or with the insurance?

Any advice you have would be appreciated.

Once again, I am sorry to hear of Isaac's results and will keep you in my prayers. <img src="i/expressions/brokenheart.gif" border="0">
 
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