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We also asked Dr. Spencer about starting using some " head down "

positions with Abby's CPT. She had a slightly positive reflux test

at 5 mos. and was started on Zantac only a few mos. ago because of a

conversation I had with one of the doctors. Precautionary measure.

I don't think she has it now. He said to stop the Zantac and watch

her for signs of reflux 20-30 min. after eating, like arching and

crying for no other reason. If none show then it would be okay to do

some head down. I asked him if there was more reflux in CF'rs and he

said they aren't sure. I'd like to know hear other opinions on this.

I never see any sign of mucous after or during Abby's CPT. When she

had that bad cold a few weeks ago I heard her clear some and swallow

it but it was up high. In other words I want to know if Abby would

be getting any benefit with the head down at her age if reflux was

not a concern. Thanks.

Joe

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Our Abby coughs during CPT. She has severe reflux and takes Zantac

and Prilosec. We do not do the upside down CPT postions. Our

clininc said that they don't think that it matters too much, as long

as we are doing a good job on the upright positions.

Abby had pnuemonia twice before she was 6 months old. The doctors

think that the reflux made her throat raw and caused her swallowing

difficulty. Some of what she swallowed entered her lungs. By the

time that they figured this out, her upper right lobe was too

damaged. She had surgery when she was 6 months old, to remove the

damaged lobe. She has been fine since. We still have to thicken her

liquids, give her the reflux meds and do upright CPT. Abby's a real

trouper.

Gale

> We also asked Dr. Spencer about starting using some " head down "

> positions with Abby's CPT. She had a slightly positive reflux test

> at 5 mos. and was started on Zantac only a few mos. ago because of

a

> conversation I had with one of the doctors. Precautionary

measure.

> I don't think she has it now. He said to stop the Zantac and watch

> her for signs of reflux 20-30 min. after eating, like arching and

> crying for no other reason. If none show then it would be okay to

do

> some head down. I asked him if there was more reflux in CF'rs and

he

> said they aren't sure. I'd like to know hear other opinions on

this.

> I never see any sign of mucous after or during Abby's CPT. When

she

> had that bad cold a few weeks ago I heard her clear some and

swallow

> it but it was up high. In other words I want to know if Abby would

> be getting any benefit with the head down at her age if reflux was

> not a concern. Thanks.

>

> Joe

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Joe,

I don't know if reflux is more common among people with CF but it DOES seem like

it is. My daughter has it. We were told that many people with CF have

it. was diagnosed with CF at 9 months and we have never done PT without

the head down positions- we started PT at Dx. She had the reflux surgery before

she was 2 because she needed a g-tube and they didn't want to place it unless

she had the reflux surgery.

Mom of , 5 with CF

Reflux

We also asked Dr. Spencer about starting using some " head down "

positions with Abby's CPT. She had a slightly positive reflux test

at 5 mos. and was started on Zantac only a few mos. ago because of a

conversation I had with one of the doctors. Precautionary measure.

I don't think she has it now. He said to stop the Zantac and watch

her for signs of reflux 20-30 min. after eating, like arching and

crying for no other reason. If none show then it would be okay to do

some head down. I asked him if there was more reflux in CF'rs and he

said they aren't sure. I'd like to know hear other opinions on this.

I never see any sign of mucous after or during Abby's CPT. When she

had that bad cold a few weeks ago I heard her clear some and swallow

it but it was up high. In other words I want to know if Abby would

be getting any benefit with the head down at her age if reflux was

not a concern. Thanks.

Joe

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We have decided not to use the head down positions for Zach. We

discussed this with Zach's cf doc after I saw this article.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=12567389 & dopt=Abstract

I hope this link works.

Sara

> Joe,

> I don't know if reflux is more common among people with CF but it

DOES seem like it is. My daughter has it. We were told that

many people with CF have it. was diagnosed with CF at 9

months and we have never done PT without the head down positions- we

started PT at Dx. She had the reflux surgery before she was 2

because she needed a g-tube and they didn't want to place it unless

she had the reflux surgery.

>

>

> Mom of , 5 with CF

> Reflux

>

>

> We also asked Dr. Spencer about starting using some " head down "

> positions with Abby's CPT. She had a slightly positive reflux

test

> at 5 mos. and was started on Zantac only a few mos. ago because

of a

> conversation I had with one of the doctors. Precautionary

measure.

> I don't think she has it now. He said to stop the Zantac and

watch

> her for signs of reflux 20-30 min. after eating, like arching

and

> crying for no other reason. If none show then it would be okay

to do

> some head down. I asked him if there was more reflux in CF'rs

and he

> said they aren't sure. I'd like to know hear other opinions on

this.

> I never see any sign of mucous after or during Abby's CPT. When

she

> had that bad cold a few weeks ago I heard her clear some and

swallow

> it but it was up high. In other words I want to know if Abby

would

> be getting any benefit with the head down at her age if reflux

was

> not a concern. Thanks.

>

> Joe

>

>

>

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I tried the link and it didn't work. Here is what it said:

Chest physiotherapy in infants with cystic fibrosis: to tip or not?

A five-year study.

Button BM, Heine RG, Catto- AG, Olinsky A, Phelan PD,

Ditchfield MR, Story I.

Department of Physiotherapy, Royal Children's Hospital, Melbourne,

Australia. b.button@...

There is controversy about the need for postural drainage

physiotherapy in asymptomatic infants with cystic fibrosis (CF). We

aimed to compare the effectiveness of standard postural drainage

chest physiotherapy (SPT) with a modified physiotherapy regimen

without head-down tilt (MPT) in young infants with CF. Twenty newly

diagnosed infants with CF (mean age, 2.1 months; range, 1-4) were

randomized to SPT or MPT. Parents kept a detailed symptom and

treatment diary for the following 12 months. Serial chest

radiographs, taken at diagnosis, 12 months, 2(1/2) years, and 5

years after diagnosis, were assessed using the Brasfield score.

Pulmonary function tests were compared between groups after 5 years.

Of the 20 infants, 16 (80%) completed the review at 12 months, and

14 (70%) at 2(1/2) and 5 years. Patients receiving SPT had more days

with upper respiratory tract symptoms than those on MPT (70 +/- 32.8

vs. 37 +/- 24.9 days; P = 0.04) and required longer courses of

antibiotics (23 +/- 28.5 vs. 14 +/- 11.2 days; P = 0.05). Chest x-

ray scores were similar at diagnosis but were worse at 2(1/2) years

for those receiving SPT (P = 0.03). Forced vital capacity and forced

expired volume in 1 sec (FEV(1)) at 5-6 years was lower for SPT than

for MPT (P < 0.05). In conclusion, MPT was associated with fewer

respiratory complications than SPT in infants with CF. Copyright

2003 Wiley-Liss, Inc.

Pediatr Pulmonol. 2003 Mar;35(3):208-13.

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Joe,

I know that Piper had a lot of reflux issues when she was smaller. Hers was

severe enough that they did a Nissen Fundoplication to correct it, but she is

still on Zantac and Reglan. I don't know if there have been any studies on the

correlation of Reflux and CF, but most of the people that I have met that have a

kid with CF also said that their kids also had reflux.

As far as postural drainage goes, all I know about it is that it is recommended

so that the mucous that is loosened up will drain out and not go back into their

lungs. Piper hasn't really had any mucous come up but I have also heard that

some kids don't really start " producing " mucous until they are a little older.

I hope that this helps!!

Katy

mom to Austin 4 no CF & Piper (almost 16 mos) w/CF

Joe wrote:

We also asked Dr. Spencer about starting using some " head down "

positions with Abby's CPT. She had a slightly positive reflux test

at 5 mos. and was started on Zantac only a few mos. ago because of a

conversation I had with one of the doctors. Precautionary measure.

I don't think she has it now. He said to stop the Zantac and watch

her for signs of reflux 20-30 min. after eating, like arching and

crying for no other reason. If none show then it would be okay to do

some head down. I asked him if there was more reflux in CF'rs and he

said they aren't sure. I'd like to know hear other opinions on this.

I never see any sign of mucous after or during Abby's CPT. When she

had that bad cold a few weeks ago I heard her clear some and swallow

it but it was up high. In other words I want to know if Abby would

be getting any benefit with the head down at her age if reflux was

not a concern. Thanks.

Joe

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

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Here is an article that describes how CPT head down may have negative

side effects.

Published Online: 31 Jan 2003

Copyright © 2003 Wiley-Liss, Inc

Diagnostic and Therapeutic Methods

Chest physiotherapy in infants with cystic fibrosis:

To tip or not? A five-year study

M. Button, Dip Phty, PhD 1 2 *, Ralf G. Heine,

MD, FRACP 3 5, G. Catto-, MD, FRACP 3 5,

Olinsky, MD, FRACP 4, D. Phelan, MD,

FRACP 5, R. Ditchfield, MD, FRANZCR 6, Ian

Story, PhD 2

1Department of Physiotherapy, Royal Children's

Hospital, Melbourne, Australia

2School of Physiotherapy, University of Melbourne,

Melbourne, Australia

3Department of Gastroenterology and Clinical

Nutrition, Royal Children's Hospital, Melbourne,

Australia

4Department of Respiratory Medicine, Royal Children's

Hospital, Melbourne, Australia

5Department of Paediatrics, University of Melbourne,

Melbourne, Australia

6Department of Radiology, Royal Children's Hospital,

Melbourne, Australia

email: M. Button (http://groups.yahoo.com/group/cfparents/post?

protectID=014242250182175134112158203140247016039248015046183239241150

077211)

*Correspondence to M. Button, Department of

Respiratory Medicine, Alfred Hospital, Commercial

Road, Prahran, Melbourne, 3181, Australia.

Funded by:

Royal Children's Hospital Research Foundation,

Melbourne

Physiotherapy Research Foundation of Australia

Keywords

cystic fibrosis . gastroesophageal reflux .

physiotherapy . postural drainage . infant .

aspiration . pulmonary function . treatment

Abstract

There is controversy about the need for postural

drainage physiotherapy in asymptomatic infants with

cystic fibrosis (CF). We aimed to compare the

effectiveness of standard postural drainage chest

physiotherapy (SPT) with a modified physiotherapy

regimen without head-down tilt (MPT) in young infants

with CF. Twenty newly diagnosed infants with CF (mean

age, 2.1 months; range, 1-4) were randomized to SPT or

MPT. Parents kept a detailed symptom and treatment

diary for the following 12 months. Serial chest

radiographs, taken at diagnosis, 12 months, 2½ years,

and 5 years after diagnosis, were assessed using the

Brasfield score. Pulmonary function tests were

compared between groups after 5 years. Of the 20

infants, 16 (80%) completed the review at 12 months,

and 14 (70%) at 2½ and 5 years. Patients receiving SPT

had more days with upper respiratory tract symptoms

than those on MPT (70 ± 32.8 vs. 37 ± 24.9 days; P =

0.04) and required longer courses of antibiotics (23 ±

28.5 vs. 14 ± 11.2 days; P = 0.05). Chest x-ray scores

were similar at diagnosis but were worse at 2½ years

for those receiving SPT (P = 0.03). Forced vital

capacity and forced expired volume in 1 sec (FEV1) at

5-6 years was lower for SPT than for MPT (P < 0.05).

In conclusion, MPT was associated with fewer

respiratory complications than SPT in infants with CF.

Pediatr Pulmonol. 2003; 35:208-213. © 2003 Wiley-Liss,

Inc.

Received: 11 December 2001; Accepted: 1 October 2002

Digital Object Identifier (DOI)

10.1002/ppul.10227 About DOI

References are available in the Enhanced Abstract

> We also asked Dr. Spencer about starting using some " head down "

> positions with Abby's CPT. She had a slightly positive reflux test

> at 5 mos. and was started on Zantac only a few mos. ago because of

a

> conversation I had with one of the doctors. Precautionary measure.

> I don't think she has it now. He said to stop the Zantac and watch

> her for signs of reflux 20-30 min. after eating, like arching and

> crying for no other reason. If none show then it would be okay to

do

> some head down. I asked him if there was more reflux in CF'rs and

he

> said they aren't sure. I'd like to know hear other opinions on this.

> I never see any sign of mucous after or during Abby's CPT. When she

> had that bad cold a few weeks ago I heard her clear some and

swallow

> it but it was up high. In other words I want to know if Abby would

> be getting any benefit with the head down at her age if reflux was

> not a concern. Thanks.

>

> Joe

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO

WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

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Gee I wish I had known the negative effects of the head down positions in kids

with reflux when we were using them for !!!!! Fortunately we use the vest

now and no postural drainage.

Re: Reflux

Here is an article that describes how CPT head down may have negative

side effects.

Published Online: 31 Jan 2003

Copyright © 2003 Wiley-Liss, Inc

Diagnostic and Therapeutic Methods

Chest physiotherapy in infants with cystic fibrosis:

To tip or not? A five-year study

M. Button, Dip Phty, PhD 1 2 *, Ralf G. Heine,

MD, FRACP 3 5, G. Catto-, MD, FRACP 3 5,

Olinsky, MD, FRACP 4, D. Phelan, MD,

FRACP 5, R. Ditchfield, MD, FRANZCR 6, Ian

Story, PhD 2

1Department of Physiotherapy, Royal Children's

Hospital, Melbourne, Australia

2School of Physiotherapy, University of Melbourne,

Melbourne, Australia

3Department of Gastroenterology and Clinical

Nutrition, Royal Children's Hospital, Melbourne,

Australia

4Department of Respiratory Medicine, Royal Children's

Hospital, Melbourne, Australia

5Department of Paediatrics, University of Melbourne,

Melbourne, Australia

6Department of Radiology, Royal Children's Hospital,

Melbourne, Australia

email: M. Button (http://groups.yahoo.com/group/cfparents/post?

protectID=014242250182175134112158203140247016039248015046183239241150

077211)

*Correspondence to M. Button, Department of

Respiratory Medicine, Alfred Hospital, Commercial

Road, Prahran, Melbourne, 3181, Australia.

Funded by:

Royal Children's Hospital Research Foundation,

Melbourne

Physiotherapy Research Foundation of Australia

Keywords

cystic fibrosis . gastroesophageal reflux .

physiotherapy . postural drainage . infant .

aspiration . pulmonary function . treatment

Abstract

There is controversy about the need for postural

drainage physiotherapy in asymptomatic infants with

cystic fibrosis (CF). We aimed to compare the

effectiveness of standard postural drainage chest

physiotherapy (SPT) with a modified physiotherapy

regimen without head-down tilt (MPT) in young infants

with CF. Twenty newly diagnosed infants with CF (mean

age, 2.1 months; range, 1-4) were randomized to SPT or

MPT. Parents kept a detailed symptom and treatment

diary for the following 12 months. Serial chest

radiographs, taken at diagnosis, 12 months, 2½ years,

and 5 years after diagnosis, were assessed using the

Brasfield score. Pulmonary function tests were

compared between groups after 5 years. Of the 20

infants, 16 (80%) completed the review at 12 months,

and 14 (70%) at 2½ and 5 years. Patients receiving SPT

had more days with upper respiratory tract symptoms

than those on MPT (70 ± 32.8 vs. 37 ± 24.9 days; P =

0.04) and required longer courses of antibiotics (23 ±

28.5 vs. 14 ± 11.2 days; P = 0.05). Chest x-ray scores

were similar at diagnosis but were worse at 2½ years

for those receiving SPT (P = 0.03). Forced vital

capacity and forced expired volume in 1 sec (FEV1) at

5-6 years was lower for SPT than for MPT (P < 0.05).

In conclusion, MPT was associated with fewer

respiratory complications than SPT in infants with CF.

Pediatr Pulmonol. 2003; 35:208-213. © 2003 Wiley-Liss,

Inc.

Received: 11 December 2001; Accepted: 1 October 2002

Digital Object Identifier (DOI)

10.1002/ppul.10227 About DOI

References are available in the Enhanced Abstract

> We also asked Dr. Spencer about starting using some " head down "

> positions with Abby's CPT. She had a slightly positive reflux test

> at 5 mos. and was started on Zantac only a few mos. ago because of

a

> conversation I had with one of the doctors. Precautionary measure.

> I don't think she has it now. He said to stop the Zantac and watch

> her for signs of reflux 20-30 min. after eating, like arching and

> crying for no other reason. If none show then it would be okay to

do

> some head down. I asked him if there was more reflux in CF'rs and

he

> said they aren't sure. I'd like to know hear other opinions on this.

> I never see any sign of mucous after or during Abby's CPT. When she

> had that bad cold a few weeks ago I heard her clear some and

swallow

> it but it was up high. In other words I want to know if Abby would

> be getting any benefit with the head down at her age if reflux was

> not a concern. Thanks.

>

> Joe

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO

WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

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  • 2 years later...

Jayne - could not have said it any better - so, I'm not going

to repeat anything. I'm glad you felt comfortable enough to share

your concerns - please make the GI appointment and let us know the

results. Thinking of you lot's.

- H

>

> hi thanks for the thoughts on tube feeding.i feel excactly as you

> described, I feel she doesnt need it then she definatly does. Lily

> started to eat again 2 days ago and then this am she has refused

> everything. I managed to get 15mls of milk down her but she vomited.

> And there was much more than 15mls.she even started shaking her head

> when she saw a spoon and bowl.. Could this be reflux??? she seems to

> not be able to tolerate anything, as if she is full...... I know

that

> RSS is the reason for it most of the time but she has been so eager

to

> eat over the last few days. She has even woke up for the past 2

nights

> and hasnt settled back down til after she has had a 4oz bottle each

> time. The the dramatic change. Is it reflux...??? jayne x

>

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> hi thanks for the thoughts on tube feeding.i feel excactly as

you

> described, I feel she doesnt need it then she definatly does. Lily

> started to eat again 2 days ago and then this am she has refused

> everything. I managed to get 15mls of milk down her but she

vomited.

> And there was much more than 15mls.she even started shaking her

head

> when she saw a spoon and bowl.. Could this be reflux??? she seems

to

> not be able to tolerate anything, as if she is full...... I know

that

> RSS is the reason for it most of the time but she has been so

eager to

> eat over the last few days. She has even woke up for the past 2

nights

> and hasnt settled back down til after she has had a 4oz bottle

each

> time. The the dramatic change. Is it reflux...??? jayne x

>

>

>

>

>

>

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