Update on Dr.visit

tabbycat821 · May 1, 2009

Well so we had our visit yesterday.Our son weighed 9lb 11oz according to the office scale, which is what he weighed last time butthey weren't as concerned,what? They have been pressing for him to gain and now they aren't as concerned,they say he still needs to gain weight but at least other things have improved. They gave me a new recipe for formula so that it's 30cal per ounce since he only drinks about 15oz a day and he still does need to catch up a bit. He has had a cough and allergy symptoms so they put him on cingular and may out him on antibiotics if his throat culture comes back growing anything, which is a good possibility since it always seems to culture staph. My poor baby is on so much it seems for a 3 month old:vitamins, zantac, gas drops, 1 1/2capsules of creon,pregestimil formula w/ salt and prune juice xopenex,pulmozyme,Cingular, and chest pt. The Dr. did tellme I was doing a good job though and that overall he's doing well, that's where my wow comes in because I was very close to changing clinics before yesterday's visit but it's like they changed and are becoming more willing to listen and be more helpful.Oh yea we also finally got to see the newborn screen and results of other tests that the clinic in MI never told us<img src="i/expressions/face-icon-small-blush.gif" border="0">ur son has ddf508, very low pancreas function, and his sweat test was 94. Which can someone tell me what the 94 is, I forgot to ask yesterday with all the people we saw.

tabbycat821 · May 1, 2009

Well so we had our visit yesterday.Our son weighed 9lb 11oz according to the office scale, which is what he weighed last time butthey weren't as concerned,what? They have been pressing for him to gain and now they aren't as concerned,they say he still needs to gain weight but at least other things have improved. They gave me a new recipe for formula so that it's 30cal per ounce since he only drinks about 15oz a day and he still does need to catch up a bit. He has had a cough and allergy symptoms so they put him on cingular and may out him on antibiotics if his throat culture comes back growing anything, which is a good possibility since it always seems to culture staph. My poor baby is on so much it seems for a 3 month old:vitamins, zantac, gas drops, 1 1/2capsules of creon,pregestimil formula w/ salt and prune juice xopenex,pulmozyme,Cingular, and chest pt. The Dr. did tellme I was doing a good job though and that overall he's doing well, that's where my wow comes in because I was very close to changing clinics before yesterday's visit but it's like they changed and are becoming more willing to listen and be more helpful.Oh yea we also finally got to see the newborn screen and results of other tests that the clinic in MI never told us<img src="i/expressions/face-icon-small-blush.gif" border="0">ur son has ddf508, very low pancreas function, and his sweat test was 94. Which can someone tell me what the 94 is, I forgot to ask yesterday with all the people we saw.

tabbycat821 · May 1, 2009

Well so we had our visit yesterday.Our son weighed 9lb 11oz according to the office scale, which is what he weighed last time butthey weren't as concerned,what? They have been pressing for him to gain and now they aren't as concerned,they say he still needs to gain weight but at least other things have improved. They gave me a new recipe for formula so that it's 30cal per ounce since he only drinks about 15oz a day and he still does need to catch up a bit. He has had a cough and allergy symptoms so they put him on cingular and may out him on antibiotics if his throat culture comes back growing anything, which is a good possibility since it always seems to culture staph. My poor baby is on so much it seems for a 3 month old:vitamins, zantac, gas drops, 1 1/2capsules of creon,pregestimil formula w/ salt and prune juice xopenex,pulmozyme,Cingular, and chest pt. The Dr. did tellme I was doing a good job though and that overall he's doing well, that's where my wow comes in because I was very close to changing clinics before yesterday's visit but it's like they changed and are becoming more willing to listen and be more helpful.Oh yea we also finally got to see the newborn screen and results of other tests that the clinic in MI never told us<img src="i/expressions/face-icon-small-blush.gif" border="0">ur son has ddf508, very low pancreas function, and his sweat test was 94. Which can someone tell me what the 94 is, I forgot to ask yesterday with all the people we saw.

tabbycat821 · May 1, 2009

Well so we had our visit yesterday.Our son weighed 9lb 11oz according to the office scale, which is what he weighed last time butthey weren't as concerned,what? They have been pressing for him to gain and now they aren't as concerned,they say he still needs to gain weight but at least other things have improved. They gave me a new recipe for formula so that it's 30cal per ounce since he only drinks about 15oz a day and he still does need to catch up a bit. He has had a cough and allergy symptoms so they put him on cingular and may out him on antibiotics if his throat culture comes back growing anything, which is a good possibility since it always seems to culture staph. My poor baby is on so much it seems for a 3 month old:vitamins, zantac, gas drops, 1 1/2capsules of creon,pregestimil formula w/ salt and prune juice xopenex,pulmozyme,Cingular, and chest pt. The Dr. did tellme I was doing a good job though and that overall he's doing well, that's where my wow comes in because I was very close to changing clinics before yesterday's visit but it's like they changed and are becoming more willing to listen and be more helpful.Oh yea we also finally got to see the newborn screen and results of other tests that the clinic in MI never told us<img src="i/expressions/face-icon-small-blush.gif" border="0">ur son has ddf508, very low pancreas function, and his sweat test was 94. Which can someone tell me what the 94 is, I forgot to ask yesterday with all the people we saw.

tabbycat821 · May 1, 2009

Well so we had our visit yesterday.Our son weighed 9lb 11oz according to the office scale, which is what he weighed last time butthey weren't as concerned,what? They have been pressing for him to gain and now they aren't as concerned,they say he still needs to gain weight but at least other things have improved. They gave me a new recipe for formula so that it's 30cal per ounce since he only drinks about 15oz a day and he still does need to catch up a bit. He has had a cough and allergy symptoms so they put him on cingular and may out him on antibiotics if his throat culture comes back growing anything, which is a good possibility since it always seems to culture staph. My poor baby is on so much it seems for a 3 month old:vitamins, zantac, gas drops, 1 1/2capsules of creon,pregestimil formula w/ salt and prune juice xopenex,pulmozyme,Cingular, and chest pt. The Dr. did tellme I was doing a good job though and that overall he's doing well, that's where my wow comes in because I was very close to changing clinics before yesterday's visit but it's like they changed and are becoming more willing to listen and be more helpful.Oh yea we also finally got to see the newborn screen and results of other tests that the clinic in MI never told us<img src="i/expressions/face-icon-small-blush.gif" border="0">ur son has ddf508, very low pancreas function, and his sweat test was 94. Which can someone tell me what the 94 is, I forgot to ask yesterday with all the people we saw.

sdelorenzo · May 2, 2009

Have you taken your son to a GI dr who sees kids with cf? If not, perhaps your clinic would have a recommendation for you. The GI dr is the expert in helping your son gain weight. The pulmonologists don't specialize in that field, just the lungs. My daughters GI doctor was very helpful in coming up with ideas to help with her weight.

My daughter had a lot of trouble gaining weight when she was an infant. She too would take around 15 ounces of milk a day. It would range from 12-20. It is hard for any baby who takes only 15 ounces to gain weight especially a cf baby. I finally asked for her to be on a ng-tube because she she wasn't gaining and I couldn't stand it. It was incredible to see her gain weight and start to get a little fat on her body. My point - be aggressive in getting help for your baby to gain weight. I would also go to another clinic to see what they advise. I have taken my kids to three other clinics to get advice. It never hurts! Only helps in getting different ideas in how to care for our kids.

94 means he scored above the 60 that is needed for a positive sweat test. It really doesn't describe the severity of the disease, or so they say. My kids got 95 and 101 on their tests.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 3 months no cf

sdelorenzo · May 2, 2009

Have you taken your son to a GI dr who sees kids with cf? If not, perhaps your clinic would have a recommendation for you. The GI dr is the expert in helping your son gain weight. The pulmonologists don't specialize in that field, just the lungs. My daughters GI doctor was very helpful in coming up with ideas to help with her weight.

My daughter had a lot of trouble gaining weight when she was an infant. She too would take around 15 ounces of milk a day. It would range from 12-20. It is hard for any baby who takes only 15 ounces to gain weight especially a cf baby. I finally asked for her to be on a ng-tube because she she wasn't gaining and I couldn't stand it. It was incredible to see her gain weight and start to get a little fat on her body. My point - be aggressive in getting help for your baby to gain weight. I would also go to another clinic to see what they advise. I have taken my kids to three other clinics to get advice. It never hurts! Only helps in getting different ideas in how to care for our kids.

94 means he scored above the 60 that is needed for a positive sweat test. It really doesn't describe the severity of the disease, or so they say. My kids got 95 and 101 on their tests.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 3 months no cf

sdelorenzo · May 2, 2009

Have you taken your son to a GI dr who sees kids with cf? If not, perhaps your clinic would have a recommendation for you. The GI dr is the expert in helping your son gain weight. The pulmonologists don't specialize in that field, just the lungs. My daughters GI doctor was very helpful in coming up with ideas to help with her weight.

My daughter had a lot of trouble gaining weight when she was an infant. She too would take around 15 ounces of milk a day. It would range from 12-20. It is hard for any baby who takes only 15 ounces to gain weight especially a cf baby. I finally asked for her to be on a ng-tube because she she wasn't gaining and I couldn't stand it. It was incredible to see her gain weight and start to get a little fat on her body. My point - be aggressive in getting help for your baby to gain weight. I would also go to another clinic to see what they advise. I have taken my kids to three other clinics to get advice. It never hurts! Only helps in getting different ideas in how to care for our kids.

94 means he scored above the 60 that is needed for a positive sweat test. It really doesn't describe the severity of the disease, or so they say. My kids got 95 and 101 on their tests.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 3 months no cf

sdelorenzo · May 2, 2009

Have you taken your son to a GI dr who sees kids with cf? If not, perhaps your clinic would have a recommendation for you. The GI dr is the expert in helping your son gain weight. The pulmonologists don't specialize in that field, just the lungs. My daughters GI doctor was very helpful in coming up with ideas to help with her weight.

My daughter had a lot of trouble gaining weight when she was an infant. She too would take around 15 ounces of milk a day. It would range from 12-20. It is hard for any baby who takes only 15 ounces to gain weight especially a cf baby. I finally asked for her to be on a ng-tube because she she wasn't gaining and I couldn't stand it. It was incredible to see her gain weight and start to get a little fat on her body. My point - be aggressive in getting help for your baby to gain weight. I would also go to another clinic to see what they advise. I have taken my kids to three other clinics to get advice. It never hurts! Only helps in getting different ideas in how to care for our kids.

94 means he scored above the 60 that is needed for a positive sweat test. It really doesn't describe the severity of the disease, or so they say. My kids got 95 and 101 on their tests.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 3 months no cf

sdelorenzo · May 2, 2009

Have you taken your son to a GI dr who sees kids with cf? If not, perhaps your clinic would have a recommendation for you. The GI dr is the expert in helping your son gain weight. The pulmonologists don't specialize in that field, just the lungs. My daughters GI doctor was very helpful in coming up with ideas to help with her weight.
 
 My daughter had a lot of trouble gaining weight when she was an infant. She too would take around 15 ounces of milk a day. It would range from 12-20. It is hard for any baby who takes only 15 ounces to gain weight especially a cf baby. I finally asked for her to be on a ng-tube because she she wasn't gaining and I couldn't stand it. It was incredible to see her gain weight and start to get a little fat on her body. My point - be aggressive in getting help for your baby to gain weight. I would also go to another clinic to see what they advise. I have taken my kids to three other clinics to get advice. It never hurts! Only helps in getting different ideas in how to care for our kids.
 
 94 means he scored above the 60 that is needed for a positive sweat test. It really doesn't describe the severity of the disease, or so they say. My kids got 95 and 101 on their tests.
 Sharon, mom of Sophia, 7 and Jack, 5 both with cf, Grant, 3 months no cf

tabbycat821 · May 2, 2009