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Allergies???

C

Cherylwithone

Guest
Hi, Iam still new to this site. My daughter who is 15 has CF. We have been trying to get her tested for allergies the last year and a half. Everytime we went they would say it is her autoimmune attacking. Well, yesterday she saw her ENT doctor because her sinuous were giving her trouble. He did a CT scan one of many and asked what she uses for her allergies. We told him she was never tested and that they would only do the RASS test. He informed us of what we already new that she has allergies. He fired off an email to the other doctor and she is now being tested. Why does it take so long for them to test these kids. Mean while they suffer for nothing. I feel they should have a guide like to go by. If you test positive for CF then this, this and this test must be done. If for nothing else but a base line. Don't they get it that if your sinuous are draining while sleeping this is not a good thing! Does anyone else have this problem getting some of the test.

Cheryl mom to Malora 15yrs old w/CF
 
C

Cherylwithone

Guest
Hi, Iam still new to this site. My daughter who is 15 has CF. We have been trying to get her tested for allergies the last year and a half. Everytime we went they would say it is her autoimmune attacking. Well, yesterday she saw her ENT doctor because her sinuous were giving her trouble. He did a CT scan one of many and asked what she uses for her allergies. We told him she was never tested and that they would only do the RASS test. He informed us of what we already new that she has allergies. He fired off an email to the other doctor and she is now being tested. Why does it take so long for them to test these kids. Mean while they suffer for nothing. I feel they should have a guide like to go by. If you test positive for CF then this, this and this test must be done. If for nothing else but a base line. Don't they get it that if your sinuous are draining while sleeping this is not a good thing! Does anyone else have this problem getting some of the test.

Cheryl mom to Malora 15yrs old w/CF
 
C

Cherylwithone

Guest
Hi, Iam still new to this site. My daughter who is 15 has CF. We have been trying to get her tested for allergies the last year and a half. Everytime we went they would say it is her autoimmune attacking. Well, yesterday she saw her ENT doctor because her sinuous were giving her trouble. He did a CT scan one of many and asked what she uses for her allergies. We told him she was never tested and that they would only do the RASS test. He informed us of what we already new that she has allergies. He fired off an email to the other doctor and she is now being tested. Why does it take so long for them to test these kids. Mean while they suffer for nothing. I feel they should have a guide like to go by. If you test positive for CF then this, this and this test must be done. If for nothing else but a base line. Don't they get it that if your sinuous are draining while sleeping this is not a good thing! Does anyone else have this problem getting some of the test.

Cheryl mom to Malora 15yrs old w/CF
 
C

Cherylwithone

Guest
Hi, Iam still new to this site. My daughter who is 15 has CF. We have been trying to get her tested for allergies the last year and a half. Everytime we went they would say it is her autoimmune attacking. Well, yesterday she saw her ENT doctor because her sinuous were giving her trouble. He did a CT scan one of many and asked what she uses for her allergies. We told him she was never tested and that they would only do the RASS test. He informed us of what we already new that she has allergies. He fired off an email to the other doctor and she is now being tested. Why does it take so long for them to test these kids. Mean while they suffer for nothing. I feel they should have a guide like to go by. If you test positive for CF then this, this and this test must be done. If for nothing else but a base line. Don't they get it that if your sinuous are draining while sleeping this is not a good thing! Does anyone else have this problem getting some of the test.

Cheryl mom to Malora 15yrs old w/CF
 
C

Cherylwithone

Guest
Hi, Iam still new to this site. My daughter who is 15 has CF. We have been trying to get her tested for allergies the last year and a half. Everytime we went they would say it is her autoimmune attacking. Well, yesterday she saw her ENT doctor because her sinuous were giving her trouble. He did a CT scan one of many and asked what she uses for her allergies. We told him she was never tested and that they would only do the RASS test. He informed us of what we already new that she has allergies. He fired off an email to the other doctor and she is now being tested. Why does it take so long for them to test these kids. Mean while they suffer for nothing. I feel they should have a guide like to go by. If you test positive for CF then this, this and this test must be done. If for nothing else but a base line. Don't they get it that if your sinuous are draining while sleeping this is not a good thing! Does anyone else have this problem getting some of the test.
<br />
<br />Cheryl mom to Malora 15yrs old w/CF
 
P

pjspiegle

New member
Can relate on the testing of stuff, not with allergies, but with other stuff.
Nathan also has allergies but his are in excellent control with Allegra and Zrytec and sinus surgery yearly.
I had to fight for over a year though to get him tested for diabetes. It was so frustrating! Especially knowing how cheap this test actually is compared to other tests. I finally got my PCP to order a meter and some strips and based off random numbers, he finally got diagnosed in Dec. 2004 and treatment began in Jan 2005.
Our newest battle, getting an insulin pump. I got the insurance to finally approve one, and its being delivered today. Then there was the battle of getting him into the stupid classes we have to do before we can start using the pump, most of which never applies to us because he has CFRD not Type 1. I finally got my schedule rearranged so that we can go to the 3 four hour each long classes on April 4, 14, and 21. I am going to nursing school and only go on Mondays and Wednesday and wouldn't you know that is the only days they offer the classes. Kaiser approved for us to get the training through the company itself but the Barbara Davis Center won't allow that, you HAVE to do your training with them. It is so crazy because they drag it out for so long. I am sure that if you had type 1 it would make sense and be worth it but I know that a lot of it will be a waste of time for us.

Sorry to go on about this on your post! I know the frustrations! You would think that after 14 and 15 years respectfully, it would be easier! I often worry about the new moms who don't know what to ask for, what to push for, and when to let it go and when not to let it go, and yet, we still have a lot of the same issues now that we did then.

LOL,
Patty
 
P

pjspiegle

New member
Can relate on the testing of stuff, not with allergies, but with other stuff.
Nathan also has allergies but his are in excellent control with Allegra and Zrytec and sinus surgery yearly.
I had to fight for over a year though to get him tested for diabetes. It was so frustrating! Especially knowing how cheap this test actually is compared to other tests. I finally got my PCP to order a meter and some strips and based off random numbers, he finally got diagnosed in Dec. 2004 and treatment began in Jan 2005.
Our newest battle, getting an insulin pump. I got the insurance to finally approve one, and its being delivered today. Then there was the battle of getting him into the stupid classes we have to do before we can start using the pump, most of which never applies to us because he has CFRD not Type 1. I finally got my schedule rearranged so that we can go to the 3 four hour each long classes on April 4, 14, and 21. I am going to nursing school and only go on Mondays and Wednesday and wouldn't you know that is the only days they offer the classes. Kaiser approved for us to get the training through the company itself but the Barbara Davis Center won't allow that, you HAVE to do your training with them. It is so crazy because they drag it out for so long. I am sure that if you had type 1 it would make sense and be worth it but I know that a lot of it will be a waste of time for us.

Sorry to go on about this on your post! I know the frustrations! You would think that after 14 and 15 years respectfully, it would be easier! I often worry about the new moms who don't know what to ask for, what to push for, and when to let it go and when not to let it go, and yet, we still have a lot of the same issues now that we did then.

LOL,
Patty
 
P

pjspiegle

New member
Can relate on the testing of stuff, not with allergies, but with other stuff.
Nathan also has allergies but his are in excellent control with Allegra and Zrytec and sinus surgery yearly.
I had to fight for over a year though to get him tested for diabetes. It was so frustrating! Especially knowing how cheap this test actually is compared to other tests. I finally got my PCP to order a meter and some strips and based off random numbers, he finally got diagnosed in Dec. 2004 and treatment began in Jan 2005.
Our newest battle, getting an insulin pump. I got the insurance to finally approve one, and its being delivered today. Then there was the battle of getting him into the stupid classes we have to do before we can start using the pump, most of which never applies to us because he has CFRD not Type 1. I finally got my schedule rearranged so that we can go to the 3 four hour each long classes on April 4, 14, and 21. I am going to nursing school and only go on Mondays and Wednesday and wouldn't you know that is the only days they offer the classes. Kaiser approved for us to get the training through the company itself but the Barbara Davis Center won't allow that, you HAVE to do your training with them. It is so crazy because they drag it out for so long. I am sure that if you had type 1 it would make sense and be worth it but I know that a lot of it will be a waste of time for us.

Sorry to go on about this on your post! I know the frustrations! You would think that after 14 and 15 years respectfully, it would be easier! I often worry about the new moms who don't know what to ask for, what to push for, and when to let it go and when not to let it go, and yet, we still have a lot of the same issues now that we did then.

LOL,
Patty
 
P

pjspiegle

New member
Can relate on the testing of stuff, not with allergies, but with other stuff.
Nathan also has allergies but his are in excellent control with Allegra and Zrytec and sinus surgery yearly.
I had to fight for over a year though to get him tested for diabetes. It was so frustrating! Especially knowing how cheap this test actually is compared to other tests. I finally got my PCP to order a meter and some strips and based off random numbers, he finally got diagnosed in Dec. 2004 and treatment began in Jan 2005.
Our newest battle, getting an insulin pump. I got the insurance to finally approve one, and its being delivered today. Then there was the battle of getting him into the stupid classes we have to do before we can start using the pump, most of which never applies to us because he has CFRD not Type 1. I finally got my schedule rearranged so that we can go to the 3 four hour each long classes on April 4, 14, and 21. I am going to nursing school and only go on Mondays and Wednesday and wouldn't you know that is the only days they offer the classes. Kaiser approved for us to get the training through the company itself but the Barbara Davis Center won't allow that, you HAVE to do your training with them. It is so crazy because they drag it out for so long. I am sure that if you had type 1 it would make sense and be worth it but I know that a lot of it will be a waste of time for us.

Sorry to go on about this on your post! I know the frustrations! You would think that after 14 and 15 years respectfully, it would be easier! I often worry about the new moms who don't know what to ask for, what to push for, and when to let it go and when not to let it go, and yet, we still have a lot of the same issues now that we did then.

LOL,
Patty
 
P

pjspiegle

New member
Can relate on the testing of stuff, not with allergies, but with other stuff.
<br />Nathan also has allergies but his are in excellent control with Allegra and Zrytec and sinus surgery yearly.
<br />I had to fight for over a year though to get him tested for diabetes. It was so frustrating! Especially knowing how cheap this test actually is compared to other tests. I finally got my PCP to order a meter and some strips and based off random numbers, he finally got diagnosed in Dec. 2004 and treatment began in Jan 2005.
<br />Our newest battle, getting an insulin pump. I got the insurance to finally approve one, and its being delivered today. Then there was the battle of getting him into the stupid classes we have to do before we can start using the pump, most of which never applies to us because he has CFRD not Type 1. I finally got my schedule rearranged so that we can go to the 3 four hour each long classes on April 4, 14, and 21. I am going to nursing school and only go on Mondays and Wednesday and wouldn't you know that is the only days they offer the classes. Kaiser approved for us to get the training through the company itself but the Barbara Davis Center won't allow that, you HAVE to do your training with them. It is so crazy because they drag it out for so long. I am sure that if you had type 1 it would make sense and be worth it but I know that a lot of it will be a waste of time for us.
<br />
<br />Sorry to go on about this on your post! I know the frustrations! You would think that after 14 and 15 years respectfully, it would be easier! I often worry about the new moms who don't know what to ask for, what to push for, and when to let it go and when not to let it go, and yet, we still have a lot of the same issues now that we did then.
<br />
<br />LOL,
<br />Patty
 
C

Cherylwithone

Guest
Patty, At least I know Iam not losing my mind. Thanks for sharing your story with me. It helps knowing that other moms are going through the same thing. I do alot of pushing for things that Malora needs. The way I look at it. If we don't do it, who will? Malora is checked for CFRD. The CF Clinic in Boston is great! I can get testing they need right away. It's some of the others that don't get CF. They don't understand you DO NOT mess around with CF. I know what you mean about the young moms. I think about them alot. Maybe on a site they should have a CF 101 guide. Well, we are off to Children's again today.
Hope to hear from you again and thanks!!!!

Cheryl mom to Malora (CF, 15)
 
C

Cherylwithone

Guest
Patty, At least I know Iam not losing my mind. Thanks for sharing your story with me. It helps knowing that other moms are going through the same thing. I do alot of pushing for things that Malora needs. The way I look at it. If we don't do it, who will? Malora is checked for CFRD. The CF Clinic in Boston is great! I can get testing they need right away. It's some of the others that don't get CF. They don't understand you DO NOT mess around with CF. I know what you mean about the young moms. I think about them alot. Maybe on a site they should have a CF 101 guide. Well, we are off to Children's again today.
Hope to hear from you again and thanks!!!!

Cheryl mom to Malora (CF, 15)
 
C

Cherylwithone

Guest
Patty, At least I know Iam not losing my mind. Thanks for sharing your story with me. It helps knowing that other moms are going through the same thing. I do alot of pushing for things that Malora needs. The way I look at it. If we don't do it, who will? Malora is checked for CFRD. The CF Clinic in Boston is great! I can get testing they need right away. It's some of the others that don't get CF. They don't understand you DO NOT mess around with CF. I know what you mean about the young moms. I think about them alot. Maybe on a site they should have a CF 101 guide. Well, we are off to Children's again today.
Hope to hear from you again and thanks!!!!

Cheryl mom to Malora (CF, 15)
 
C

Cherylwithone

Guest
Patty, At least I know Iam not losing my mind. Thanks for sharing your story with me. It helps knowing that other moms are going through the same thing. I do alot of pushing for things that Malora needs. The way I look at it. If we don't do it, who will? Malora is checked for CFRD. The CF Clinic in Boston is great! I can get testing they need right away. It's some of the others that don't get CF. They don't understand you DO NOT mess around with CF. I know what you mean about the young moms. I think about them alot. Maybe on a site they should have a CF 101 guide. Well, we are off to Children's again today.
Hope to hear from you again and thanks!!!!

Cheryl mom to Malora (CF, 15)
 
C

Cherylwithone

Guest
Patty, At least I know Iam not losing my mind. Thanks for sharing your story with me. It helps knowing that other moms are going through the same thing. I do alot of pushing for things that Malora needs. The way I look at it. If we don't do it, who will? Malora is checked for CFRD. The CF Clinic in Boston is great! I can get testing they need right away. It's some of the others that don't get CF. They don't understand you DO NOT mess around with CF. I know what you mean about the young moms. I think about them alot. Maybe on a site they should have a CF 101 guide. Well, we are off to Children's again today.
<br />Hope to hear from you again and thanks!!!!
<br />
<br />Cheryl mom to Malora (CF, 15)
 
C

Cherylwithone

Guest
I am staying away from hospitals with her. She had two appointments never made it to the second one. Her heart had been racing since her lungs and GI track took hits during Dec, Jan, into Feb. I thought ok infections are all cleared heart should calm back down. NO! It is still racing. When she stands her blood pressure drops, heart goes even faster then what iit is doing now. Should have passed out. She is taking fluid on board also. Has this ever happend with your child? I can see the allergies. That is fine can deal with that. They have her on two heart monitors to record her heart. I thought I new every side effect of CF. Never in a million years did I give her heart a second thought. Any insight would be helpfull.
We go back next week for even more testing. We were suppose to have a week off from the hospital.

Cheryl mom to Malora (15, CF)
 
C

Cherylwithone

Guest
I am staying away from hospitals with her. She had two appointments never made it to the second one. Her heart had been racing since her lungs and GI track took hits during Dec, Jan, into Feb. I thought ok infections are all cleared heart should calm back down. NO! It is still racing. When she stands her blood pressure drops, heart goes even faster then what iit is doing now. Should have passed out. She is taking fluid on board also. Has this ever happend with your child? I can see the allergies. That is fine can deal with that. They have her on two heart monitors to record her heart. I thought I new every side effect of CF. Never in a million years did I give her heart a second thought. Any insight would be helpfull.
We go back next week for even more testing. We were suppose to have a week off from the hospital.

Cheryl mom to Malora (15, CF)
 
C

Cherylwithone

Guest
I am staying away from hospitals with her. She had two appointments never made it to the second one. Her heart had been racing since her lungs and GI track took hits during Dec, Jan, into Feb. I thought ok infections are all cleared heart should calm back down. NO! It is still racing. When she stands her blood pressure drops, heart goes even faster then what iit is doing now. Should have passed out. She is taking fluid on board also. Has this ever happend with your child? I can see the allergies. That is fine can deal with that. They have her on two heart monitors to record her heart. I thought I new every side effect of CF. Never in a million years did I give her heart a second thought. Any insight would be helpfull.
We go back next week for even more testing. We were suppose to have a week off from the hospital.

Cheryl mom to Malora (15, CF)
 
C

Cherylwithone

Guest
I am staying away from hospitals with her. She had two appointments never made it to the second one. Her heart had been racing since her lungs and GI track took hits during Dec, Jan, into Feb. I thought ok infections are all cleared heart should calm back down. NO! It is still racing. When she stands her blood pressure drops, heart goes even faster then what iit is doing now. Should have passed out. She is taking fluid on board also. Has this ever happend with your child? I can see the allergies. That is fine can deal with that. They have her on two heart monitors to record her heart. I thought I new every side effect of CF. Never in a million years did I give her heart a second thought. Any insight would be helpfull.
We go back next week for even more testing. We were suppose to have a week off from the hospital.

Cheryl mom to Malora (15, CF)
 
C

Cherylwithone

Guest
I am staying away from hospitals with her. She had two appointments never made it to the second one. Her heart had been racing since her lungs and GI track took hits during Dec, Jan, into Feb. I thought ok infections are all cleared heart should calm back down. NO! It is still racing. When she stands her blood pressure drops, heart goes even faster then what iit is doing now. Should have passed out. She is taking fluid on board also. Has this ever happend with your child? I can see the allergies. That is fine can deal with that. They have her on two heart monitors to record her heart. I thought I new every side effect of CF. Never in a million years did I give her heart a second thought. Any insight would be helpfull.
<br />We go back next week for even more testing. We were suppose to have a week off from the hospital.
<br />
<br />Cheryl mom to Malora (15, CF)
 
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