HS for kids

K

ktsmom

New member
Our doc said he "wants to discuss Hypertonic Saline" at our next appointment, which is coming up next week! I have read everything I can get my hands on. I saw the recent post in the adult section and it reminded me that I needed to ask you guys if any of your kiddos are on it.

I'm all for it as a successful therapy, but since there seems to be side effects I am VERY concerned if the doc wants to put Katy on it right now. She is 3. She won't be able to tell me specifics about if it hurts her, etc. She is not junky in her lungs at all. She cultured PA once but her last culture was clear.

What do you guys think? What age did you start your children on it? Did you have to supplement with albuterol? Any other thoughts?

Thanks as always for your input.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
K

ktsmom

New member
Our doc said he "wants to discuss Hypertonic Saline" at our next appointment, which is coming up next week! I have read everything I can get my hands on. I saw the recent post in the adult section and it reminded me that I needed to ask you guys if any of your kiddos are on it.

I'm all for it as a successful therapy, but since there seems to be side effects I am VERY concerned if the doc wants to put Katy on it right now. She is 3. She won't be able to tell me specifics about if it hurts her, etc. She is not junky in her lungs at all. She cultured PA once but her last culture was clear.

What do you guys think? What age did you start your children on it? Did you have to supplement with albuterol? Any other thoughts?

Thanks as always for your input.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
K

ktsmom

New member
Our doc said he "wants to discuss Hypertonic Saline" at our next appointment, which is coming up next week! I have read everything I can get my hands on. I saw the recent post in the adult section and it reminded me that I needed to ask you guys if any of your kiddos are on it.

I'm all for it as a successful therapy, but since there seems to be side effects I am VERY concerned if the doc wants to put Katy on it right now. She is 3. She won't be able to tell me specifics about if it hurts her, etc. She is not junky in her lungs at all. She cultured PA once but her last culture was clear.

What do you guys think? What age did you start your children on it? Did you have to supplement with albuterol? Any other thoughts?

Thanks as always for your input.

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
A

anonymous

New member
Sean is on it. We started a couple of months ago. I haven't noticed anything one way or the other; no side effects, no benefits.

Of course, there is a down side, it's another treatment and adds about 10 minutes to the regimine. Sean does it in the morning after his albuterol and in the evening after his albuterol/pulmozyme.

Claudette (aka CFHockeymom)
 
A

anonymous

New member
Sean is on it. We started a couple of months ago. I haven't noticed anything one way or the other; no side effects, no benefits.

Of course, there is a down side, it's another treatment and adds about 10 minutes to the regimine. Sean does it in the morning after his albuterol and in the evening after his albuterol/pulmozyme.

Claudette (aka CFHockeymom)
 
A

anonymous

New member
Sean is on it. We started a couple of months ago. I haven't noticed anything one way or the other; no side effects, no benefits.

Of course, there is a down side, it's another treatment and adds about 10 minutes to the regimine. Sean does it in the morning after his albuterol and in the evening after his albuterol/pulmozyme.

Claudette (aka CFHockeymom)
 
R

Ratatosk

Administrator
Staff member
We asked about it last spring, shortly before DS turned 3. Both his local doctor and CF doctor indicated he wasn't a candidate because he didn't have anything to cough up. The CF doctor also said that he wanted to see more studies done on it -- most of the studies he'd seen were with people who had more lung involvement and who showed marked improvement.
 
R

Ratatosk

Administrator
Staff member
We asked about it last spring, shortly before DS turned 3. Both his local doctor and CF doctor indicated he wasn't a candidate because he didn't have anything to cough up. The CF doctor also said that he wanted to see more studies done on it -- most of the studies he'd seen were with people who had more lung involvement and who showed marked improvement.
 
R

Ratatosk

Administrator
Staff member
We asked about it last spring, shortly before DS turned 3. Both his local doctor and CF doctor indicated he wasn't a candidate because he didn't have anything to cough up. The CF doctor also said that he wanted to see more studies done on it -- most of the studies he'd seen were with people who had more lung involvement and who showed marked improvement.
 
T

tammykrumrey

Guest
Kayla had tried HS back in May. Our clinic, as I would assume they all do, had her try it in the PFT lab. She blew PFTs, then she did the HS treatment and we waited about 10 minutes and then she blew PFTs again. Her PFTs went from 68% prior to the HS down into the 30s% after the HS. Therefore her doctor said that he did not want her on it because it seemed to irritate her lungs too bad. Instead she was put on daily pulmozyme and does great with that.

My guess is that your 3 year old doesn't do PFTs, so I wonder how they would monitor a test to see how she would handle it. Maybe someone else has a younger one than myself who could help in that sense.
 
T

tammykrumrey

Guest
Kayla had tried HS back in May. Our clinic, as I would assume they all do, had her try it in the PFT lab. She blew PFTs, then she did the HS treatment and we waited about 10 minutes and then she blew PFTs again. Her PFTs went from 68% prior to the HS down into the 30s% after the HS. Therefore her doctor said that he did not want her on it because it seemed to irritate her lungs too bad. Instead she was put on daily pulmozyme and does great with that.

My guess is that your 3 year old doesn't do PFTs, so I wonder how they would monitor a test to see how she would handle it. Maybe someone else has a younger one than myself who could help in that sense.
 
T

tammykrumrey

Guest
Kayla had tried HS back in May. Our clinic, as I would assume they all do, had her try it in the PFT lab. She blew PFTs, then she did the HS treatment and we waited about 10 minutes and then she blew PFTs again. Her PFTs went from 68% prior to the HS down into the 30s% after the HS. Therefore her doctor said that he did not want her on it because it seemed to irritate her lungs too bad. Instead she was put on daily pulmozyme and does great with that.

My guess is that your 3 year old doesn't do PFTs, so I wonder how they would monitor a test to see how she would handle it. Maybe someone else has a younger one than myself who could help in that sense.
 
C

charl72

New member
Now that you mention HS, I mentioned it to our daughter's Consultant a few months back, and he didn't think it would be any real benefit to her.
 
C

charl72

New member
Now that you mention HS, I mentioned it to our daughter's Consultant a few months back, and he didn't think it would be any real benefit to her.
 
C

charl72

New member
Now that you mention HS, I mentioned it to our daughter's Consultant a few months back, and he didn't think it would be any real benefit to her.
 
D

DEES4

New member
I talked to my sons doc about it and he really does not want him on it until he is old enough to do PFTs. He is only 2 (will be 3 in Dec.). He does not think it will benefit him at this point.
Carrie
 
D

DEES4

New member
I talked to my sons doc about it and he really does not want him on it until he is old enough to do PFTs. He is only 2 (will be 3 in Dec.). He does not think it will benefit him at this point.
Carrie
 
D

DEES4

New member
I talked to my sons doc about it and he really does not want him on it until he is old enough to do PFTs. He is only 2 (will be 3 in Dec.). He does not think it will benefit him at this point.
Carrie
 
R

Rebjane

Super Moderator
I also asked our pulmo about HS. He did not want to put maggie on it yet til he saw more info about it. I don't think he puts his patients on it yet. However, I think the Cf doc at clinic that has adult patients uses it and they benefit from it.
 
R

Rebjane

Super Moderator
I also asked our pulmo about HS. He did not want to put maggie on it yet til he saw more info about it. I don't think he puts his patients on it yet. However, I think the Cf doc at clinic that has adult patients uses it and they benefit from it.
 
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