Miralax Question

H

hmw

New member
I'd mentioned asking the nutritionist about it because in our case, we just added this to our daughter's regimen, and also just adjusted her enzymes. Regarding both, I spoke to the dr but then he told me 'when J(dietitian) comes in after we confer, she'll talk to you more about how she's been eating and discuss what we decide our recommendations are for handling this.'
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<br />So in Emily's case, she would have been completely knowledgeable about the course of action recommended for her and why. She couldn't change what had been prescribed if I approached her later, but she could explain the reasoning behind it, discuss it knowledgeably, if needed talk to the dr and get back to me. I'm also comfortable discussing this stuff with her due to her extensive familiarity with Emily's diet, etc- we get into far more detail about that than I do with her dr (that is what she's there for, after all.)
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<br />I do agree that if you do not agree with a course of action prescribed for your child the dr needs to know about it since only they can change it- but feel there is value including the dietitian in the discussion if she is knowledgeable/you trust her or was involved in the decision to put your child on it in the first place.
 
J

just1more

New member
Harriet, the OP mentioned the nutritionist pushing Miralax, which was my concern/thought...

I 'dietitian' must have a Bachelors Degree, a 'nutritionist' doesn't even have that requirement in many places (though they obviously may).

To be a CF specialist takes BS + Med School (4yrs) + Residency (3-4yrs) + fellowship (1-2yrs).

For general information and things like dosing enzymes, they are fine. When it comes to medication with possible side effects & interactions....I want the 12+ yrs of training personally.
 
J

just1more

New member
Harriet, the OP mentioned the nutritionist pushing Miralax, which was my concern/thought...

I 'dietitian' must have a Bachelors Degree, a 'nutritionist' doesn't even have that requirement in many places (though they obviously may).

To be a CF specialist takes BS + Med School (4yrs) + Residency (3-4yrs) + fellowship (1-2yrs).

For general information and things like dosing enzymes, they are fine. When it comes to medication with possible side effects & interactions....I want the 12+ yrs of training personally.
 
J

just1more

New member
Harriet, the OP mentioned the nutritionist pushing Miralax, which was my concern/thought...
<br />
<br />I 'dietitian' must have a Bachelors Degree, a 'nutritionist' doesn't even have that requirement in many places (though they obviously may).
<br />
<br />To be a CF specialist takes BS + Med School (4yrs) + Residency (3-4yrs) + fellowship (1-2yrs).
<br />
<br />For general information and things like dosing enzymes, they are fine. When it comes to medication with possible side effects & interactions....I want the 12+ yrs of training personally.
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>

My daughter has an order for miralax prn (when needed). We only use it when she is having issues, and haven't used it in over a year. So no I don't think you "have" to. If she's stooling normally and not having belly pain, then I'd think it would be okay to hold off on it. Call your CF nurse and see why they were so insistent on it being a daily thing instead of as needed.</end quote></div>

We were on a small maintenance dose that sometimes caused stools to be too loose, so we switched to a "when needed" dose with our doctor's blessing. The problem is that by the time we knew she needed it, it was kinda too late for how long it takes Miralax to start working, you know what I mean?

DD does have belly pain and infrequent stooling more often than not, so the doc adjusted enzymes downward two months ago. Result has been no need for Miralax, and stooling 2-3 times a day. But she looks skinny to me and is pretty hungry all the time. Will find out at tomorrow's appointment but she looks like she has lost weight to me.

I guess going back to the higher enzyme dose and using a daily maintenance Miralax is the lesser of two evils. It just always seemed counter-intuitive to me to be pushing it through if the real problem was in enzyme dosing. Sigh.
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>

My daughter has an order for miralax prn (when needed). We only use it when she is having issues, and haven't used it in over a year. So no I don't think you "have" to. If she's stooling normally and not having belly pain, then I'd think it would be okay to hold off on it. Call your CF nurse and see why they were so insistent on it being a daily thing instead of as needed.</end quote>

We were on a small maintenance dose that sometimes caused stools to be too loose, so we switched to a "when needed" dose with our doctor's blessing. The problem is that by the time we knew she needed it, it was kinda too late for how long it takes Miralax to start working, you know what I mean?

DD does have belly pain and infrequent stooling more often than not, so the doc adjusted enzymes downward two months ago. Result has been no need for Miralax, and stooling 2-3 times a day. But she looks skinny to me and is pretty hungry all the time. Will find out at tomorrow's appointment but she looks like she has lost weight to me.

I guess going back to the higher enzyme dose and using a daily maintenance Miralax is the lesser of two evils. It just always seemed counter-intuitive to me to be pushing it through if the real problem was in enzyme dosing. Sigh.
 
K

ktsmom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Mommafirst</b></i>
<br />
<br />My daughter has an order for miralax prn (when needed). We only use it when she is having issues, and haven't used it in over a year. So no I don't think you "have" to. If she's stooling normally and not having belly pain, then I'd think it would be okay to hold off on it. Call your CF nurse and see why they were so insistent on it being a daily thing instead of as needed.</end quote>
<br />
<br />We were on a small maintenance dose that sometimes caused stools to be too loose, so we switched to a "when needed" dose with our doctor's blessing. The problem is that by the time we knew she needed it, it was kinda too late for how long it takes Miralax to start working, you know what I mean?
<br />
<br />DD does have belly pain and infrequent stooling more often than not, so the doc adjusted enzymes downward two months ago. Result has been no need for Miralax, and stooling 2-3 times a day. But she looks skinny to me and is pretty hungry all the time. Will find out at tomorrow's appointment but she looks like she has lost weight to me.
<br />
<br />I guess going back to the higher enzyme dose and using a daily maintenance Miralax is the lesser of two evils. It just always seemed counter-intuitive to me to be pushing it through if the real problem was in enzyme dosing. Sigh.
 
H

hsnth2008

New member
kts mom- i'm with you on that sigh!

as far as doc vs nutritionist- both the regular doc that we go to and the second opinion that we went to are a team. the doc and nutritionist converse with each other and back each other on their opinions so asking one is like asking both, but the nutritionist sits and listens and analyzes in more depth with you. and the cf doc is a pulmonolgist and that is his training. he happens to be working with a disease that also has nutritional elements and he gets extra training in that, but i would guess that his 12 plus years have very little to do with nutrition, which is why centers should have a nutritionist. a responsible doc will listen to the nutritionist's recommendation because that is the specialty of the nutritionist. the problem in my case is the nutritionist is lacking CF experience and i can feel it.

just yesterday my daughter said her stomach was hurting so i decided to give only 1 tsp miralax and it worked well. she passed a stool and it was not diarhea. for now, i think that will work for us. so far, the miralax works within 10 minutes. i know some ppl say it could take days, but that has not been the case with her, Thank Gd. so as of now, the case by case, day by day decision for giving miralax in small amount seems good for her.
 
H

hsnth2008

New member
kts mom- i'm with you on that sigh!

as far as doc vs nutritionist- both the regular doc that we go to and the second opinion that we went to are a team. the doc and nutritionist converse with each other and back each other on their opinions so asking one is like asking both, but the nutritionist sits and listens and analyzes in more depth with you. and the cf doc is a pulmonolgist and that is his training. he happens to be working with a disease that also has nutritional elements and he gets extra training in that, but i would guess that his 12 plus years have very little to do with nutrition, which is why centers should have a nutritionist. a responsible doc will listen to the nutritionist's recommendation because that is the specialty of the nutritionist. the problem in my case is the nutritionist is lacking CF experience and i can feel it.

just yesterday my daughter said her stomach was hurting so i decided to give only 1 tsp miralax and it worked well. she passed a stool and it was not diarhea. for now, i think that will work for us. so far, the miralax works within 10 minutes. i know some ppl say it could take days, but that has not been the case with her, Thank Gd. so as of now, the case by case, day by day decision for giving miralax in small amount seems good for her.
 
H

hsnth2008

New member
kts mom- i'm with you on that sigh!
<br />
<br />as far as doc vs nutritionist- both the regular doc that we go to and the second opinion that we went to are a team. the doc and nutritionist converse with each other and back each other on their opinions so asking one is like asking both, but the nutritionist sits and listens and analyzes in more depth with you. and the cf doc is a pulmonolgist and that is his training. he happens to be working with a disease that also has nutritional elements and he gets extra training in that, but i would guess that his 12 plus years have very little to do with nutrition, which is why centers should have a nutritionist. a responsible doc will listen to the nutritionist's recommendation because that is the specialty of the nutritionist. the problem in my case is the nutritionist is lacking CF experience and i can feel it.
<br />
<br />just yesterday my daughter said her stomach was hurting so i decided to give only 1 tsp miralax and it worked well. she passed a stool and it was not diarhea. for now, i think that will work for us. so far, the miralax works within 10 minutes. i know some ppl say it could take days, but that has not been the case with her, Thank Gd. so as of now, the case by case, day by day decision for giving miralax in small amount seems good for her.
 
H

hmw

New member
<div class="FTQUOTE"><begin quote>I 'dietitian' must have a Bachelors Degree, a 'nutritionist' doesn't even have that requirement in many places (though they obviously may).</end quote></div>
In my post, I was referring to the person who is part of the CF team that discusses diet and related concerns, not a run of the mill nutritionist off the street somewhere. I have used the term dietitian and nutritionist interchangeably when referring to the person there with whom I discuss this stuff. I didn't realize the technical difference between the two and the qualifications needed to become an RD, so I will now be careful to use only the term dietitian when that is who I mean. At our center we have a registered dietitian, not a possibly untrained nutritionist.

<div class="FTQUOTE"><begin quote>as far as doc vs nutritionist- both the regular doc that we go to and the second opinion that we went to are a team. the doc and nutritionist converse with each other and back each other on their opinions so asking one is like asking both, but the nutritionist sits and listens and analyzes in more depth with you. and the cf doc is a pulmonolgist and that is his training. he happens to be working with a disease that also has nutritional elements and he gets extra training in that, but i would guess that his 12 plus years have very little to do with nutrition, which is why centers should have a nutritionist. a responsible doc will listen to the nutritionist's recommendation because that is the specialty of the nutritionist. the problem in my case is the nutritionist is lacking CF experience and i can feel it.</end quote></div>
I completely agree with you!! Ours work well as a team too. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I also feel it's essential that the dietitian have knowledge of CF though, since our kids have unique nutritional needs that a run of the mill dietitian won't necessarily be familiar with. Ours is fantastic and has been very good working with Emily. She was out for several months (maternity leave) and WHAT a difference working with her replacement... she tried hard, but the lack of cf-specific knowledge was so apparent. I was so relieved to have *our* dietitian back... she's truly an integral part of the team.
 
H

hmw

New member
<div class="FTQUOTE"><begin quote>I 'dietitian' must have a Bachelors Degree, a 'nutritionist' doesn't even have that requirement in many places (though they obviously may).</end quote>
In my post, I was referring to the person who is part of the CF team that discusses diet and related concerns, not a run of the mill nutritionist off the street somewhere. I have used the term dietitian and nutritionist interchangeably when referring to the person there with whom I discuss this stuff. I didn't realize the technical difference between the two and the qualifications needed to become an RD, so I will now be careful to use only the term dietitian when that is who I mean. At our center we have a registered dietitian, not a possibly untrained nutritionist.

<div class="FTQUOTE"><begin quote>as far as doc vs nutritionist- both the regular doc that we go to and the second opinion that we went to are a team. the doc and nutritionist converse with each other and back each other on their opinions so asking one is like asking both, but the nutritionist sits and listens and analyzes in more depth with you. and the cf doc is a pulmonolgist and that is his training. he happens to be working with a disease that also has nutritional elements and he gets extra training in that, but i would guess that his 12 plus years have very little to do with nutrition, which is why centers should have a nutritionist. a responsible doc will listen to the nutritionist's recommendation because that is the specialty of the nutritionist. the problem in my case is the nutritionist is lacking CF experience and i can feel it.</end quote>
I completely agree with you!! Ours work well as a team too. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I also feel it's essential that the dietitian have knowledge of CF though, since our kids have unique nutritional needs that a run of the mill dietitian won't necessarily be familiar with. Ours is fantastic and has been very good working with Emily. She was out for several months (maternity leave) and WHAT a difference working with her replacement... she tried hard, but the lack of cf-specific knowledge was so apparent. I was so relieved to have *our* dietitian back... she's truly an integral part of the team.
 
H

hmw

New member
<div class="FTQUOTE"><begin quote>I 'dietitian' must have a Bachelors Degree, a 'nutritionist' doesn't even have that requirement in many places (though they obviously may).</end quote>
<br />In my post, I was referring to the person who is part of the CF team that discusses diet and related concerns, not a run of the mill nutritionist off the street somewhere. I have used the term dietitian and nutritionist interchangeably when referring to the person there with whom I discuss this stuff. I didn't realize the technical difference between the two and the qualifications needed to become an RD, so I will now be careful to use only the term dietitian when that is who I mean. At our center we have a registered dietitian, not a possibly untrained nutritionist.
<br />
<br /><div class="FTQUOTE"><begin quote>as far as doc vs nutritionist- both the regular doc that we go to and the second opinion that we went to are a team. the doc and nutritionist converse with each other and back each other on their opinions so asking one is like asking both, but the nutritionist sits and listens and analyzes in more depth with you. and the cf doc is a pulmonolgist and that is his training. he happens to be working with a disease that also has nutritional elements and he gets extra training in that, but i would guess that his 12 plus years have very little to do with nutrition, which is why centers should have a nutritionist. a responsible doc will listen to the nutritionist's recommendation because that is the specialty of the nutritionist. the problem in my case is the nutritionist is lacking CF experience and i can feel it.</end quote>
<br />I completely agree with you!! Ours work well as a team too. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I also feel it's essential that the dietitian have knowledge of CF though, since our kids have unique nutritional needs that a run of the mill dietitian won't necessarily be familiar with. Ours is fantastic and has been very good working with Emily. She was out for several months (maternity leave) and WHAT a difference working with her replacement... she tried hard, but the lack of cf-specific knowledge was so apparent. I was so relieved to have *our* dietitian back... she's truly an integral part of the team.
 
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