InfantReflux.Org Forums: Living with Sandifers Syndrome

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Gigi Greene
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Posted: 18 November 2003 at 5:39pm

Holly,

First of all, I want to commend you on continuing to breast feed. I know how hard it is to breast feed a refluxer. It lasted all of 2 months for me. All the pulling off the breast and arching became so disheartening. I also tried pumping, but it became too much as I have 2 older children as well, ages 6 and 3. Second, I truly feel for you! Having a refluxer and seeing your baby obviously uncomfortable and not being able to make the discomfort go away is so sad. I can't even imagine how it must be aving the reflux on top of Sandifer's Syndrome (of which I know very little about) or vice versa must be. I know the toll the of JUST reflux has taken on my entire family. My other two children constantly being neglected (thank goodness they are so good natured) and me feeling so bad that I am able to spend very little quality time with them. Thank God my husband is so good about that. I know I can't wait for the reflux to just go away. Although Olivia is doing much better, it is still hard to care for her as she has been accustomed to constantly being held and expects that now all the time. She is very fussy unless I (not anyone else!) am holding her. So, know that you're frustrations are heart felt and my heart goes out to you. It always makes me sad the pain these babies must feel. I am glad that Kirsten has been so helpful to you because there are very few of us who have to deal w/ the Sandifer's on top of the reflux. I honestly had never heard of it until your topic. So hang in there and don't forget to take care of yourself, too!

Kirsten,

Just wondering where you live as well. You mentioned that everyone seems to be on the east coast. I agree. All the nice people I have met through this site have been on the east coast or midwest. I am on the very west coast, California. I'm glad that you are so informed on Sandifer's. It sounds like a scarey thing to go through. Take care.

Gigi
Mom to Olivia born 5/4/03

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Holann
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Posted: 18 November 2003 at 6:26pm

Gigi
Oh thank you so much for your kindness.I am so weepy today..just crying and crying

I even called my husband and begged him to come home early...which is not like me! I cant figure out why Sierra is having such a bad time...I was soooo hopeful about the prilosec. I need a break but feel badly leaving her...its so complex isnt it?? I cant imagine what i wold do if I had two other children...i am already so exhausted....you must be very strong...and have a great husband!

Holly

Holly /Mother to Sierra 7/15/03 /Silent reflux /Sub glottic Hemangioma

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Kayla'sMom
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Posted: 18 November 2003 at 6:30pm

Hi Holly, just wanted to let you know that I read your post and I have been there, I consider myself a very strong person, but I have called my husband many days just crying. It is hard to watch your child be in pain. Good luck and hang in there, everyone keeps saying it will get better so I am hopeful:)

Jennifer-24 Ken-28
Kayla- 8/20/03 (Finally over GERD)
Decatur, AL

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Kirsten
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Posted: 18 November 2003 at 6:36pm

Gigi~

Sandifer's is very rare by awareness of it but I think in all actuality it is just a missed diagnosis because it does seem to go away as the reflux does. By going away I just mean the screaming bout and uncontrolable fits seem to not occur once the reflux is under control. I honestly don't remember the last time Gunnar woke screaming in pain in the middle of the night! And that's a good thing! I still can hear the scream in my head, which a friend of mine whose daughter is now 13yrs did the same thing and back then it was 'just colic' and she still recalls the same scream..not a cry.

Also I think the lack of knowledge and medical info to research is just not out there but after talking with our GI ped and the neuro we took Gunnar to, just being an aware parent and with proper meds...you'd never know the syndrome even existed with your child. BUT...it does get better!!! I remeber days thinking on my way to pick him up at daycare I just want to run away! And that's horrid to think but the stress level is so high I can't even believe the things that went through my mind! And I also now understand the shaken-baby syndrome because there were days where I just put Gunnar in his crib and shut the door and stepped outside where I could not hear him, but he was safe and cried, no bawled!!! Now he's happy, and his sense of humor lights up the room!

Oh, I live north in Coeur d'Alene, Idaho (30 miles east of Spokane, Washington)

Kirsten Nickerson
Coeur d'Alene, Idaho
mother to Gunnar 6/4/01 Sandifer's/GERD

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Gigi Greene
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Posted: 19 November 2003 at 12:29am

Holly,

I still have weepy days. My last one was just over a week ago before Olivia was baptized and I had all this family in town. She had a relapse due to teething I believe. She started spitting up a ton and I could smell the acid in her spit up. I called our ped's ofc. & GI's ofc. in tears. They both thought I needed some counselling. Really all I needed was some sympathy. And an upped dose of Prevacid seemed to help a lot. So I know those weepy days. They still happen but they are farther apart now. At least I hope it is a while if we have another set back and I hope we don't have one. I hope now that Olivia is 6 1/2 months old we are through the worst of it. It does get better and by the sounds of what Kirsten has to say, you will be in a good place, too. I know this is a hard time for you but keep posting because we are all here offer support for one another. When I first started posting I remember how comforting it felt and still feel that there are other people out there feeling the way I do. On another note, you talked about the Tucker Sling.... if you want Sierra to be on somewhat of an incline, there is a wedge that you can put under the mattress that gives it a slight incline and you can still lay Sierra on her side. We use it for Olivia and she is a tummy sleeper. I'm not sure if she even needs it now, but since she sleeps through the night and has since she was 12 weeks old, it is more like a security blanket for me. As you know, these refluxers are very sensitive to everything so I try not to rock the boat. Also, I think Kirsten mentioned a nice warm bath. I think that has worked great for us, too. Olivia loves the bath and I even use lavendar body wash. It really is very relaxing. And last, music has been a godsend for us. As soon as I put the music on, Olivia goes right in to her sleeping position. So if you can make all of those things a routine for Sierra, it might help. When she is fussy, try shhhhhhh her. I think babies in general like that sound. I did that a lot when Olivia would scream from her reflux and it helped to calm her. I still do it now when she is fussy and she really responds to it. One more thing, I know how hard it is to go out with a reflux baby, but try taking her on a walk in the stroller in your neighborhood. It will give both of you a change of scenery and some fresh air. That always helps and it is very relaxing for both you and baby. Give the meds a little more time and keep a diary so when you do talk to your doctors, you don't leave anything out. Keep us posted and I hope things get better for you and Sierra soon.

Kirsten,

Thanks for the information on Sandifer's. You sound to be in good spirits and optimistic so that has to be very positive for Holly. I just can't imagine going through anymore than just the reflux right now. You are so lucky that your doctors are well-informed in both Sandifer's and reflux. As I said, I hope we are through the worst of it. Thanks again.

Edited by Gigi Greene

Gigi
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Kirsten
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Posted: 20 November 2003 at 12:01pm

Gigi & Holly~

It is true that I am in a 'positive' mind frame these days but I would say just in the last few months! My husband keeps saying "it's so nice to have my wife back!".

I just want you both and all the other parents out there going thru everything right now that it DOES get better and you will survive! I think what really helped me is researching all that I could on the medicines prescribed to Gunnar, chatting on these forums and knowing I'm not alone out there! Also, I think what really helped us is getting Gunnar finally with a pediatrician and GI specialist that have compassion and kept reinforcing in my husband and I that Gunnar will be a happier healthier baby and life will be better!

I see alot of parents wonder when their GERD babies will out grow this and honestly when my husband and I relaxed about the 'timeline' questions that's about the time we started having a more positive attitude towards the whole situation. We quit fighting with Gunnar to take his meds and made a game/event each night to take his Prevacid. Also if he choose not to want to eat a meal, the less we pushed he started eating more and therefore food is not a bad thing in his mind.

Sandifer's is scary by description from what I've learned in the past 2.5 years than it really is but the main thing is getting these babies on the PROPER meds and dosage. Prevacid does help in repairing the damage done from the acid burning and both your babies are young enough the damage more than likely is still repairable and keep questioning the doctors...you're the parent!! Video tape episodes if that's what it takes to get your doctors to understand more of what you're telling them!! Hang in there!!!!!

Kirsten Nickerson
Coeur d'Alene, Idaho
mother to Gunnar 6/4/01 Sandifer's/GERD

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Holann
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Posted: 20 November 2003 at 2:44pm

Hi again
I am soooo frustrated today..called ped crying because now Sierra is panting as she buckles forward repeatedly,She strains for a moment and then releases the contraction all the while she is frantic breathing ...I think it is because she is in distress.(has this happened to any one?)

I went to the Dr yesterday because she wouldnt stop panting for three hours...when I got to the Dr she STOPPED! (I am going to video her) I swear they think I am crazy!!!She was happy and smiling and they sent me home. They want to change her med from prilosec(15mg per day) to prevacid liquid form...what do you think? I dont hear many posts about babies on the liquid prevacid.
Drs do not take me seriously because Sierra is "gaining weight and poopng" thats seems to be all they care about.
Some of her GERD symptoms have gotten much better...the number of events,her voice is back,she slept 9 hours last night with only two stirs awake from reflux...but when she gets up for the day and starts eating the panting and doubling up begins. She has done this all along but not as severe and constant as now. It seems that unless Sierra is screamming crying I shouldnt consider her as having trouble....but her life is MISERABLE like this...as is mine.

Am trying to get into a new GI specialist but it seems like Sierra needs to have blood coming out or be dying before they take me seriously! I hope this new person will be more compassionate and help me help my daughter.

thats the best way to describe life in this house today....

Thank you all for "listening" and sharing...I dont know what I would do without this site...I have told everyone about it!
Hope to hear soon
Holly

Holly /Mother to Sierra 7/15/03 /Silent reflux /Sub glottic Hemangioma

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Kirsten
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Posted: 20 November 2003 at 3:03pm

Holly~ The Prevacid with the chocobase really us a 'miralcle drug' at our house but only if compounded at Sierra's age. If someone tries to say packet form or capsule form is the same ..IT"S NOT! But the buckling and crunching that's not right, has she had an upper/lower GI test done? It is the least evasive test to have run on here and will show if there is any blockage also I did have xrays ran on Gunnar at 4 months...not fun but it helps to rule out any blockages.

Hang in there! If I were you I'd call Mayo Clinic and ask who they recommend as a pediatric GI to go to and call them up now...cry on the phone and explain the breathing issues, crunching forward, etc. and demand that you be put on a cancellation list for the first available appt! It will work!!!

Is there anyone that you can call to come over that would atleast be able to supportive and maybe rock with Sierra a bit and give you a break?

Kirsten Nickerson
Coeur d'Alene, Idaho
mother to Gunnar 6/4/01 Sandifer's/GERD

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Holann
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Posted: 25 November 2003 at 9:08am

Laurie
I was wondering if you could describe for me the crunches that Jonah did....did you think they were related to the reflux events at all? Did they get any better when his medicine worked well? Could be as detailed as possible...what did he do and whne and how? We are still trying to figure this out.
Also wondering if Sierra is not crying but is glerking ALOT more does that mean the medicine is not working. She crunches when the glerks happen and I dont know what is happeing first...the glerk or the contraction....
Should the PPIs make the reflux happen a little less often?
I have been talking with Dr Phillip and he think Sierra needs 15mg 3x a day!!!
I am willing to try....cause 15mg once a day isnt enough.

We are finally using the caracream...
I hope I am making sense
I am still going crazy trying to get a DR to work with us!

Hope to hear soon
Holly

Holly /Mother to Sierra 7/15/03 /Silent reflux /Sub glottic Hemangioma

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Gigi Greene
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Posted: 25 November 2003 at 12:35pm

Holly,

I can't answer your questions re the "glerking." I am glad you finally got the CaraCream mix. Just to let you know, though, Dr. Phillips is very generous w/ his dosages. I know you are having trouble finding a doctor who will work w/ you on this, but you really should consult w/ your doctor (not Dr. Phillips) on a correct dose. I've always shared Dr. Phillips' info w/ my ped. and we have always come to a happy medium. I am glad I did not go w/ Dr. Phillips prescribed dose as our ped said it was too high and the dose that we came to (24mg. = 4 mls. 2x per day) has worked fine. The dosage that he prescribed was 5.5 mls. 2x per day. We would be going through the Caracream mix like it was going out of style at that rate. I hope you find a good doctor that will work for you. While Dr. Phillips has great information and has helped a lot of us more than our very own doctors have, I would still defer to Sierra's reg. ped or GI specialist on the correct dose and find a happy medium. Do share w/ your doctors what Dr. Phillips recommends, though. That is how we got to where we are. Good luck!

Gigi
Mom to Olivia born 5/4/03

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Sandifer's Syndrome
InfantReflux.Org Forums : Special Topics : Sandifer's Syndrome

Topic: Living with Sandifers Syndrome
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Gigi Greene Fan Joined: 25 August 2003 Location: United States Online Status: Offline Posts: 249	Posted: 18 November 2003 at 5:39pm
	Holly, First of all, I want to commend you on continuing to breast feed. I know how hard it is to breast feed a refluxer. It lasted all of 2 months for me. All the pulling off the breast and arching became so disheartening. I also tried pumping, but it became too much as I have 2 older children as well, ages 6 and 3. Second, I truly feel for you! Having a refluxer and seeing your baby obviously uncomfortable and not being able to make the discomfort go away is so sad. I can't even imagine how it must be aving the reflux on top of Sandifer's Syndrome (of which I know very little about) or vice versa must be. I know the toll the of JUST reflux has taken on my entire family. My other two children constantly being neglected (thank goodness they are so good natured) and me feeling so bad that I am able to spend very little quality time with them. Thank God my husband is so good about that. I know I can't wait for the reflux to just go away. Although Olivia is doing much better, it is still hard to care for her as she has been accustomed to constantly being held and expects that now all the time. She is very fussy unless I (not anyone else!) am holding her. So, know that you're frustrations are heart felt and my heart goes out to you. It always makes me sad the pain these babies must feel. I am glad that Kirsten has been so helpful to you because there are very few of us who have to deal w/ the Sandifer's on top of the reflux. I honestly had never heard of it until your topic. So hang in there and don't forget to take care of yourself, too! Kirsten, Just wondering where you live as well. You mentioned that everyone seems to be on the east coast. I agree. All the nice people I have met through this site have been on the east coast or midwest. I am on the very west coast, California. I'm glad that you are so informed on Sandifer's. It sounds like a scarey thing to go through. Take care.
	Gigi Mom to Olivia born 5/4/03
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Holann Newbie Joined: 01 November 2003 Location: United States Online Status: Offline Posts: 44	Posted: 18 November 2003 at 6:26pm
	Gigi Oh thank you so much for your kindness.I am so weepy today..just crying and crying I even called my husband and begged him to come home early...which is not like me! I cant figure out why Sierra is having such a bad time...I was soooo hopeful about the prilosec. I need a break but feel badly leaving her...its so complex isnt it?? I cant imagine what i wold do if I had two other children...i am already so exhausted....you must be very strong...and have a great husband! Holly
	Holly /Mother to Sierra 7/15/03 /Silent reflux /Sub glottic Hemangioma
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Kayla'sMom Groupie Joined: 14 October 2003 Location: United States Online Status: Offline Posts: 549	Posted: 18 November 2003 at 6:30pm
	Hi Holly, just wanted to let you know that I read your post and I have been there, I consider myself a very strong person, but I have called my husband many days just crying. It is hard to watch your child be in pain. Good luck and hang in there, everyone keeps saying it will get better so I am hopeful:)
	Jennifer-24 Ken-28 Kayla- 8/20/03 (Finally over GERD) Decatur, AL
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Kirsten Newbie Joined: 31 July 2003 Location: United States Online Status: Offline Posts: 181	Posted: 18 November 2003 at 6:36pm
	Gigi~ Sandifer's is very rare by awareness of it but I think in all actuality it is just a missed diagnosis because it does seem to go away as the reflux does. By going away I just mean the screaming bout and uncontrolable fits seem to not occur once the reflux is under control. I honestly don't remember the last time Gunnar woke screaming in pain in the middle of the night! And that's a good thing! I still can hear the scream in my head, which a friend of mine whose daughter is now 13yrs did the same thing and back then it was 'just colic' and she still recalls the same scream..not a cry. Also I think the lack of knowledge and medical info to research is just not out there but after talking with our GI ped and the neuro we took Gunnar to, just being an aware parent and with proper meds...you'd never know the syndrome even existed with your child. BUT...it does get better!!! I remeber days thinking on my way to pick him up at daycare I just want to run away! And that's horrid to think but the stress level is so high I can't even believe the things that went through my mind! And I also now understand the shaken-baby syndrome because there were days where I just put Gunnar in his crib and shut the door and stepped outside where I could not hear him, but he was safe and cried, no bawled!!! Now he's happy, and his sense of humor lights up the room! Oh, I live north in Coeur d'Alene, Idaho (30 miles east of Spokane, Washington)
	Kirsten Nickerson Coeur d'Alene, Idaho mother to Gunnar 6/4/01 Sandifer's/GERD
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Gigi Greene Fan Joined: 25 August 2003 Location: United States Online Status: Offline Posts: 249	Posted: 19 November 2003 at 12:29am
	Holly, I still have weepy days. My last one was just over a week ago before Olivia was baptized and I had all this family in town. She had a relapse due to teething I believe. She started spitting up a ton and I could smell the acid in her spit up. I called our ped's ofc. & GI's ofc. in tears. They both thought I needed some counselling. Really all I needed was some sympathy. And an upped dose of Prevacid seemed to help a lot. So I know those weepy days. They still happen but they are farther apart now. At least I hope it is a while if we have another set back and I hope we don't have one. I hope now that Olivia is 6 1/2 months old we are through the worst of it. It does get better and by the sounds of what Kirsten has to say, you will be in a good place, too. I know this is a hard time for you but keep posting because we are all here offer support for one another. When I first started posting I remember how comforting it felt and still feel that there are other people out there feeling the way I do. On another note, you talked about the Tucker Sling.... if you want Sierra to be on somewhat of an incline, there is a wedge that you can put under the mattress that gives it a slight incline and you can still lay Sierra on her side. We use it for Olivia and she is a tummy sleeper. I'm not sure if she even needs it now, but since she sleeps through the night and has since she was 12 weeks old, it is more like a security blanket for me. As you know, these refluxers are very sensitive to everything so I try not to rock the boat. Also, I think Kirsten mentioned a nice warm bath. I think that has worked great for us, too. Olivia loves the bath and I even use lavendar body wash. It really is very relaxing. And last, music has been a godsend for us. As soon as I put the music on, Olivia goes right in to her sleeping position. So if you can make all of those things a routine for Sierra, it might help. When she is fussy, try shhhhhhh her. I think babies in general like that sound. I did that a lot when Olivia would scream from her reflux and it helped to calm her. I still do it now when she is fussy and she really responds to it. One more thing, I know how hard it is to go out with a reflux baby, but try taking her on a walk in the stroller in your neighborhood. It will give both of you a change of scenery and some fresh air. That always helps and it is very relaxing for both you and baby. Give the meds a little more time and keep a diary so when you do talk to your doctors, you don't leave anything out. Keep us posted and I hope things get better for you and Sierra soon. Kirsten, Thanks for the information on Sandifer's. You sound to be in good spirits and optimistic so that has to be very positive for Holly. I just can't imagine going through anymore than just the reflux right now. You are so lucky that your doctors are well-informed in both Sandifer's and reflux. As I said, I hope we are through the worst of it. Thanks again. Edited by Gigi Greene
	Gigi Mom to Olivia born 5/4/03
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Kirsten Newbie Joined: 31 July 2003 Location: United States Online Status: Offline Posts: 181	Posted: 20 November 2003 at 12:01pm
	Gigi & Holly~ It is true that I am in a 'positive' mind frame these days but I would say just in the last few months! My husband keeps saying "it's so nice to have my wife back!". I just want you both and all the other parents out there going thru everything right now that it DOES get better and you will survive! I think what really helped me is researching all that I could on the medicines prescribed to Gunnar, chatting on these forums and knowing I'm not alone out there! Also, I think what really helped us is getting Gunnar finally with a pediatrician and GI specialist that have compassion and kept reinforcing in my husband and I that Gunnar will be a happier healthier baby and life will be better! I see alot of parents wonder when their GERD babies will out grow this and honestly when my husband and I relaxed about the 'timeline' questions that's about the time we started having a more positive attitude towards the whole situation. We quit fighting with Gunnar to take his meds and made a game/event each night to take his Prevacid. Also if he choose not to want to eat a meal, the less we pushed he started eating more and therefore food is not a bad thing in his mind. Sandifer's is scary by description from what I've learned in the past 2.5 years than it really is but the main thing is getting these babies on the PROPER meds and dosage. Prevacid does help in repairing the damage done from the acid burning and both your babies are young enough the damage more than likely is still repairable and keep questioning the doctors...you're the parent!! Video tape episodes if that's what it takes to get your doctors to understand more of what you're telling them!! Hang in there!!!!!
	Kirsten Nickerson Coeur d'Alene, Idaho mother to Gunnar 6/4/01 Sandifer's/GERD
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Holann Newbie Joined: 01 November 2003 Location: United States Online Status: Offline Posts: 44	Posted: 20 November 2003 at 2:44pm
	Hi again I am soooo frustrated today..called ped crying because now Sierra is panting as she buckles forward repeatedly,She strains for a moment and then releases the contraction all the while she is frantic breathing ...I think it is because she is in distress.(has this happened to any one?) I went to the Dr yesterday because she wouldnt stop panting for three hours...when I got to the Dr she STOPPED! (I am going to video her) I swear they think I am crazy!!!She was happy and smiling and they sent me home. They want to change her med from prilosec(15mg per day) to prevacid liquid form...what do you think? I dont hear many posts about babies on the liquid prevacid. Drs do not take me seriously because Sierra is "gaining weight and poopng" thats seems to be all they care about. Some of her GERD symptoms have gotten much better...the number of events,her voice is back,she slept 9 hours last night with only two stirs awake from reflux...but when she gets up for the day and starts eating the panting and doubling up begins. She has done this all along but not as severe and constant as now. It seems that unless Sierra is screamming crying I shouldnt consider her as having trouble....but her life is MISERABLE like this...as is mine. Am trying to get into a new GI specialist but it seems like Sierra needs to have blood coming out or be dying before they take me seriously! I hope this new person will be more compassionate and help me help my daughter. thats the best way to describe life in this house today.... Thank you all for "listening" and sharing...I dont know what I would do without this site...I have told everyone about it! Hope to hear soon Holly
	Holly /Mother to Sierra 7/15/03 /Silent reflux /Sub glottic Hemangioma
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Kirsten Newbie Joined: 31 July 2003 Location: United States Online Status: Offline Posts: 181	Posted: 20 November 2003 at 3:03pm
	Holly~ The Prevacid with the chocobase really us a 'miralcle drug' at our house but only if compounded at Sierra's age. If someone tries to say packet form or capsule form is the same ..IT"S NOT! But the buckling and crunching that's not right, has she had an upper/lower GI test done? It is the least evasive test to have run on here and will show if there is any blockage also I did have xrays ran on Gunnar at 4 months...not fun but it helps to rule out any blockages. Hang in there! If I were you I'd call Mayo Clinic and ask who they recommend as a pediatric GI to go to and call them up now...cry on the phone and explain the breathing issues, crunching forward, etc. and demand that you be put on a cancellation list for the first available appt! It will work!!! Is there anyone that you can call to come over that would atleast be able to supportive and maybe rock with Sierra a bit and give you a break?
	Kirsten Nickerson Coeur d'Alene, Idaho mother to Gunnar 6/4/01 Sandifer's/GERD
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Holann Newbie Joined: 01 November 2003 Location: United States Online Status: Offline Posts: 44	Posted: 25 November 2003 at 9:08am
	Laurie I was wondering if you could describe for me the crunches that Jonah did....did you think they were related to the reflux events at all? Did they get any better when his medicine worked well? Could be as detailed as possible...what did he do and whne and how? We are still trying to figure this out. Also wondering if Sierra is not crying but is glerking ALOT more does that mean the medicine is not working. She crunches when the glerks happen and I dont know what is happeing first...the glerk or the contraction.... Should the PPIs make the reflux happen a little less often? I have been talking with Dr Phillip and he think Sierra needs 15mg 3x a day!!! I am willing to try....cause 15mg once a day isnt enough. We are finally using the caracream... I hope I am making sense I am still going crazy trying to get a DR to work with us! Hope to hear soon Holly
	Holly /Mother to Sierra 7/15/03 /Silent reflux /Sub glottic Hemangioma
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Gigi Greene Fan Joined: 25 August 2003 Location: United States Online Status: Offline Posts: 249	Posted: 25 November 2003 at 12:35pm
	Holly, I can't answer your questions re the "glerking." I am glad you finally got the CaraCream mix. Just to let you know, though, Dr. Phillips is very generous w/ his dosages. I know you are having trouble finding a doctor who will work w/ you on this, but you really should consult w/ your doctor (not Dr. Phillips) on a correct dose. I've always shared Dr. Phillips' info w/ my ped. and we have always come to a happy medium. I am glad I did not go w/ Dr. Phillips prescribed dose as our ped said it was too high and the dose that we came to (24mg. = 4 mls. 2x per day) has worked fine. The dosage that he prescribed was 5.5 mls. 2x per day. We would be going through the Caracream mix like it was going out of style at that rate. I hope you find a good doctor that will work for you. While Dr. Phillips has great information and has helped a lot of us more than our very own doctors have, I would still defer to Sierra's reg. ped or GI specialist on the correct dose and find a happy medium. Do share w/ your doctors what Dr. Phillips recommends, though. That is how we got to where we are. Good luck!
	Gigi Mom to Olivia born 5/4/03
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