Re: Re: 8-yr-old son miserable, HELP!

[Guest guest]

Hi DianeMy son was off and on Miralax for 4 years (he is almost 8 now). It really really messed him up for being able to feel urges and for many of the symptoms you described below. The last 2 months we have been doing the Soiling Solutions program. This program was a lifesaver for getting him off of Miralax, but also getting him going with the aid of bottom up meds and stopping his holding behavior (Encopresis). But I felt the need to look further for a more natural method. Very recently I was reading that Extra Pure Virgin Olive Oil is used for relief of constipation. So I decided to have him give it a try. Two nights in a row now, he has been able to go with ease.I dont know if its a

fluke or not, but we are going to continue 2 Tablespoons Olive Oil until I see else wise.Maybe something to think about trying. To: miralax Sent: Monday, May 28, 2012 8:56 PM Subject: Re: 8-yr-old son miserable, HELP!

Hi Diane

My son was on miralax from age 3 to early 4. It's a trial and error to get off of it -- because each kid is different. Please check out the files section (on the left hand naviation side). I posted a doc -What Worked for Us that may help you. Because your son has been on so long, it VERY likely he will have a buildup of calcium oxalate crystals in his system. The best way to deal with them as he detoxes is lots of probiotics. I found prescription strenth VSL worked well (along with the other remedies). If the doc will list IBS as a diagnosis code the VSL will be covered by insurance usually.

HTH.

In case navigating the files proves frustrating, here's the direct link.

http://f1.grp.yahoofs.com/v1/kB_ET61MqJPHOgr4jtyhNpnShZegJVTvENTDynY32Aj8nWTm5njJt2RMuFx0jhxsfYGlatTSlte_8EiGc1yIIP-zaxoKY1TR5Egu/What%20worked%20for%20us.doc

BTW - has he had any UTI's? Irritated urinary tract? It's related to the miralax.

>

> Hi, my name is Diane and I am new to this group (heard about it from the NY Times article). My son is almost nine and has been on an adult daily dose of Miralax since he was 2. At the time, his problem was just constipation, but we couldn't seem to get it controlled any other way, so we finally started the Miralax despite the warning that it was not for kids. I have tried repeatedly to wean him off, but every time we have ended up with a cessation of pooping and a traumatic cleanout before he can poop again!

>

> In the intervening years, his gastro problems have just grown and grown. He spent years having severe intestinal pains, sometimes so bad that I felt like I was comforting a woman in hard labor (without any of the upsides of that!) Lots of painful and explosive gas. Then he developed terrible reflux, which ruined an entire summer, and only then became somewhat controlled by Prevacid. (He recently went off after years of taking it daily and now the reflux is starting to come back.) We seem to go through cycles of things being pretty good for a period of months and then getting bad again.

>

> Currently, our biggest problem symptom is the "need to poop" feeling. He will feel an intense sensation of needing to poop, whether he does or not. I have often wondered whether all these other symptoms are actually side effects of the Miralax, or at least having such runny poops all the time.

>

> He has had all the tests and the doctors say there is nothing physically wrong with him. They say it is "psychological" or "behavioral," and maybe it is, but that doesn't mean he is not really suffering. He is already seeing a psychologist for anxiety and was recently diagnosed as PDD-NOS. The folks at Kennedy Krieger who diagnosed him tell me that gastro problems are extremely common in PDD kids. They couldn't explain why. He does have lots of sensory issues, and I wonder if his gastro problems are essentially a sensory problem? He is supposed to start Occupational Therapy soon, but nobody has ever suggested that it is supposed to help his gastro problems.

>

> His last turn for the worse did coincide with both discontinuing Prevacid and discontinuing probiotics, which he was taking both morning and night. His doctor seemed to think that if he ate yogurt, the probiotics were unnecessary, and they are SO expensive and not covered by insurance or even tax-deductible (being OTC). Now I'm wondering if he should go back on?

>

> I apologize for the length of this post. Please, if anyone has any experience they would be willing to share, I would really appreciate it. Even if you don't have answers or suggestions, it would help just to know that someone else is having similar issues! We are feeling very alone with this.

>

> Thanks so much,

> Diane

>

[Guest guest]

This story is so heartening - such a simple solution and we need good fats like olive oil. Thanks for sharing. Carol

Hi Diane

My son was off and on Miralax for 4 years (he is almost 8 now). It really really messed him up for being able to feel urges and for many of the symptoms you described below. The last 2 months we have been doing the Soiling Solutions program. This program was a lifesaver for getting him off of Miralax, but also getting him going with the aid of bottom up meds and stopping his holding behavior (Encopresis). But I felt the need to look further for a more natural method.

Very recently I was reading that Extra Pure Virgin Olive Oil is used for relief of constipation.

So I decided to have him give it a try. Two nights in a row now, he has been able to go with ease.

I dont know if its a fluke or not, but we are going to continue 2 Tablespoons Olive Oil until I see else wise.

Maybe something to think about trying.

To: miralax Sent: Monday, May 28, 2012 8:56 PMSubject: Re: 8-yr-old son miserable, HELP!

Hi Diane My son was on miralax from age 3 to early 4. It's a trial and error to get off of it -- because each kid is different. Please check out the files section (on the left hand naviation side). I posted a doc -What Worked for Us that may help you. Because your son has been on so long, it VERY likely he will have a buildup of calcium oxalate crystals in his system. The best way to deal with them as he detoxes is lots of probiotics. I found prescription strenth VSL worked well (along with the other remedies). If the doc will list IBS as a diagnosis code the VSL will be covered by insurance usually.HTH.In case navigating the files proves frustrating, here's the direct link.http://f1.grp.yahoofs.com/v1/kB_ET61MqJPHOgr4jtyhNpnShZegJVTvENTDynY32Aj8nWTm5njJt2RMuFx0jhxsfYGlatTSlte_8EiGc1yIIP-zaxoKY1TR5Egu/What%20worked%20for%20us.docBTW - has he had any UTI's? Irritated urinary tract? It's related to the miralax.>> Hi, my name is Diane and I am new to this group (heard about it from the NY Times article). My son is almost nine and has been on an adult daily dose of Miralax since he was 2. At the time, his problem was just constipation, but we couldn't seem to get it controlled any other way, so we finally started the Miralax despite the warning that it was not for kids. I have tried repeatedly to wean him off, but every time we have ended up with a cessation of pooping and a traumatic cleanout before he can poop again!> > In the intervening years, his gastro problems have just grown and grown. He spent years having severe intestinal pains, sometimes so bad that I felt like I was comforting a woman in hard labor (without any of the upsides of that!) Lots of painful and explosive gas. Then he developed terrible reflux, which ruined an entire summer, and only then became somewhat controlled by Prevacid. (He recently went off after years of taking it daily and now the reflux is starting to come back.) We seem to go through cycles of things being pretty good for a period of months and then getting bad again.> > Currently, our biggest problem symptom is the "need to poop" feeling. He will feel an intense sensation of needing to poop, whether he does or not. I have often wondered whether all these other symptoms are actually side effects of the Miralax, or at least having such runny poops all the time. > > He has had all the tests and the doctors say there is nothing physically wrong with him. They say it is "psychological" or "behavioral," and maybe it is, but that doesn't mean he is not really suffering. He is already seeing a psychologist for anxiety and was recently diagnosed as PDD-NOS. The folks at Kennedy Krieger who diagnosed him tell me that gastro problems are extremely common in PDD kids. They couldn't explain why. He does have lots of sensory issues, and I wonder if his gastro problems are essentially a sensory problem? He is supposed to start Occupational Therapy soon, but nobody has ever suggested that it is supposed to help his gastro problems.> > His last turn for the worse did coincide with both discontinuing Prevacid and discontinuing probiotics, which he was taking both morning and night. His doctor seemed to think that if he ate yogurt, the probiotics were unnecessary, and they are SO expensive and not covered by insurance or even tax-deductible (being OTC). Now I'm wondering if he should go back on?> > I apologize for the length of this post. Please, if anyone has any experience they would be willing to share, I would really appreciate it. Even if you don't have answers or suggestions, it would help just to know that someone else is having similar issues! We are feeling very alone with this.> > Thanks so much,> Diane>

[Guest guest]

how are you giving it to him? are you putting it into something? To: "miralax " <miralax > Sent: Tuesday, May 29, 2012 10:57 AM Subject: Re: Re: 8-yr-old son miserable, HELP!

Hi DianeMy son was off and on Miralax for 4 years (he is almost 8 now). It really really messed him up for being able to feel urges and for many of the symptoms you described below. The last 2 months we have been doing the Soiling Solutions program. This program was a lifesaver for getting him off of Miralax, but also getting him going with the aid of bottom up meds and stopping his holding behavior (Encopresis). But I felt the need to look further for a more natural method. Very recently I was reading that Extra Pure Virgin Olive Oil is used for relief of constipation. So I decided to have him give it a try. Two nights in a row now, he has been able to go with ease.I

dont know if its a

fluke or not, but we are going to continue 2 Tablespoons Olive Oil until I see else wise.Maybe something to think about trying. To: miralax Sent: Monday, May 28, 2012 8:56 PM Subject: Re: 8-yr-old son miserable, HELP!

Hi Diane

My son was on miralax from age 3 to early 4. It's a trial and error to get off of it -- because each kid is different. Please check out the files section (on the left hand naviation side). I posted a doc -What Worked for Us that may help you. Because your son has been on so long, it VERY likely he will have a buildup of calcium oxalate crystals in his system. The best way to deal with them as he detoxes is lots of probiotics. I found prescription strenth VSL worked well (along with the other remedies). If the doc will list IBS as a diagnosis code the VSL will be covered by insurance usually.

HTH.

In case navigating the files proves frustrating, here's the direct link.

http://f1.grp.yahoofs.com/v1/kB_ET61MqJPHOgr4jtyhNpnShZegJVTvENTDynY32Aj8nWTm5njJt2RMuFx0jhxsfYGlatTSlte_8EiGc1yIIP-zaxoKY1TR5Egu/What%20worked%20for%20us.doc

BTW - has he had any UTI's? Irritated urinary tract? It's related to the miralax.

>

> Hi, my name is Diane and I am new to this group (heard about it from the NY Times article). My son is almost nine and has been on an adult daily dose of Miralax since he was 2. At the time, his problem was just constipation, but we couldn't seem to get it controlled any other way, so we finally started the Miralax despite the warning that it was not for kids. I have tried repeatedly to wean him off, but every time we have ended up with a cessation of pooping and a traumatic cleanout before he can poop again!

>

> In the intervening years, his gastro problems have just grown and grown. He spent years having severe intestinal pains, sometimes so bad that I felt like I was comforting a woman in hard labor (without any of the upsides of that!) Lots of painful and explosive gas. Then he developed terrible reflux, which ruined an entire summer, and only then became somewhat controlled by Prevacid. (He recently went off after years of taking it daily and now the reflux is starting to come back.) We seem to go through cycles of things being pretty good for a period of months and then getting bad again.

>

> Currently, our biggest problem symptom is the "need to poop" feeling. He will feel an intense sensation of needing to poop, whether he does or not. I have often wondered whether all these other symptoms are actually side effects of the Miralax, or at least having such runny poops all the time.

>

> He has had all the tests and the doctors say there is nothing physically wrong with him. They say it is "psychological" or "behavioral," and maybe it is, but that doesn't mean he is not really suffering. He is already seeing a psychologist for anxiety and was recently diagnosed as PDD-NOS. The folks at Kennedy Krieger who diagnosed him tell me that gastro problems are extremely common in PDD kids. They couldn't explain why. He does have lots of sensory issues, and I wonder if his gastro problems are essentially a sensory problem? He is supposed to start Occupational Therapy soon, but nobody has ever suggested that it is supposed to help his gastro problems.

>

> His last turn for the worse did coincide with both discontinuing Prevacid and discontinuing probiotics, which he was taking both morning and night. His doctor seemed to think that if he ate yogurt, the probiotics were unnecessary, and they are SO expensive and not covered by insurance or even tax-deductible (being OTC). Now I'm wondering if he should go back on?

>

> I apologize for the length of this post. Please, if anyone has any experience they would be willing to share, I would really appreciate it. Even if you don't have answers or suggestions, it would help just to know that someone else is having similar issues! We are feeling very alone with this.

>

> Thanks so much,

> Diane

>

[Guest guest]

You are welcome. This last 4 years have been so hard for him and us dealing with his Encopresis. I hope that all of you find a Solution to your childrens problems as well.I know he is not cured yet, but I feel very confident that we are on the right path now :-) Today is day 3 on the Olive Oil and he just came in here a little bit ago and told me to come look.He had another successful stool! So I think we are onto something with him that may work :-) To: miralax Sent: Tuesday, May 29, 2012 11:00 AM Subject: Re: Re: 8-yr-old son miserable, HELP!

This story is so heartening - such a simple solution and we need good fats like olive oil. Thanks for sharing. Carol

Hi Diane

My son was off and on Miralax for 4 years (he is almost 8 now). It really really messed him up for being able to feel urges and for many of the symptoms you described below. The last 2 months we have been doing the Soiling Solutions program. This program was a lifesaver for getting him off of Miralax, but also getting him going with the aid of bottom up meds and stopping his holding behavior (Encopresis). But I felt the need to look further for a more natural method.

Very recently I was reading that Extra Pure Virgin Olive Oil is used for relief of constipation.

So I decided to have him give it a try. Two nights in a row now, he has been able to go with ease.

I dont know if its a fluke or not, but we are going to continue 2 Tablespoons Olive Oil until I see else wise.

Maybe something to think about trying.

To: miralax Sent: Monday, May 28, 2012 8:56 PMSubject: Re: 8-yr-old son miserable, HELP!

Hi Diane My son was on miralax from age 3 to early 4. It's a trial and error to get off of it -- because each kid is different. Please check out the files section (on the left hand naviation side). I posted a doc -What Worked for Us that may help you. Because your son has been on so long, it VERY likely he will have a buildup of calcium oxalate crystals in his system. The best way to deal with them as he detoxes is lots of probiotics. I found prescription strenth VSL worked well (along with the other remedies). If the doc will list IBS as a diagnosis code the VSL will be covered by insurance usually.HTH.In case navigating the files proves frustrating, here's the direct link.http://f1.grp.yahoofs.com/v1/kB_ET61MqJPHOgr4jtyhNpnShZegJVTvENTDynY32Aj8nWTm5njJt2RMuFx0jhxsfYGlatTSlte_8EiGc1yIIP-zaxoKY1TR5Egu/What%20worked%20for%20us.docBTW - has he had any UTI's? Irritated urinary tract? It's related to the miralax.>> Hi, my name is Diane and I am new to this group (heard about it from the NY Times article). My son is almost nine and has been on an adult daily dose of Miralax since he was 2. At the time, his problem was just constipation, but we couldn't seem to get it controlled any other way, so we finally started the Miralax despite the warning that it was not for kids. I have tried repeatedly to wean him off, but every time we have ended up with a cessation of pooping and a traumatic cleanout before he can poop again!> > In the intervening years, his gastro problems have just grown and grown. He spent years having severe intestinal pains, sometimes so bad that I felt like I was comforting a woman in hard labor (without any of the upsides of that!) Lots of painful and explosive gas. Then he developed terrible reflux, which ruined an entire summer, and only then became somewhat controlled by Prevacid. (He recently went off after years of taking it daily and now the reflux is starting to come back.) We seem to go through cycles of things being pretty good for a period of months and then getting bad again.> > Currently, our biggest problem symptom is the "need to poop" feeling. He will feel an intense sensation of needing to poop, whether he does or not. I have often wondered whether all these other symptoms are actually side effects of the Miralax, or at least having such runny poops all the time. > > He has had all the tests and the doctors say there is nothing physically wrong with him. They say it is "psychological" or "behavioral," and maybe it is, but that doesn't mean he is not really suffering. He is already seeing a psychologist for anxiety and was recently diagnosed as PDD-NOS. The folks at Kennedy Krieger who diagnosed him tell me that gastro problems are extremely common in PDD kids. They couldn't explain why. He does have lots of sensory issues, and I wonder if his gastro problems are essentially a sensory problem? He is supposed to start Occupational Therapy soon, but nobody has ever suggested that it is supposed to help his gastro problems.> > His last turn for the worse did coincide with both discontinuing Prevacid and discontinuing probiotics, which he was taking both morning and night. His doctor seemed to think that if he ate yogurt, the probiotics were unnecessary, and they are SO expensive and not covered by insurance or even tax-deductible (being OTC). Now I'm wondering if he should go back on?> > I apologize for the length of this post. Please, if anyone has any experience they would be willing to share, I would really appreciate it. Even if you don't have answers or suggestions, it would help just to know that someone else is having similar issues! We are feeling very alone with this.> > Thanks so much,> Diane>

[Guest guest]

Amazingly enough he just takes it in a Tablespoon. After he swallows it, we follow it up with something sweet to mask the taste :-)He is a super trooper about it and he is enjoying his new found freedom of no medications. Its important to give it before your child eats in the morning and before supper at night.Its also important to make sure your child is cleaned out so the oil can provide the mostbenefit possible. My son was on the Soiling Solutions protocol for 2 months before trying the Olive Oil. So I knew he was cleaned out. That is when we decided to then trythis natural alternative. So far

its working great. Im holding out high hopes after 4 years of this struggle! To: "miralax " <miralax > Sent: Tuesday, May 29, 2012 11:23 AM Subject: Re: Re: 8-yr-old son miserable, HELP!

how are you giving it to him? are you putting it into something? To: "miralax " <miralax > Sent: Tuesday, May 29, 2012 10:57 AM Subject: Re: Re: 8-yr-old son miserable, HELP!

Hi DianeMy son was off and on Miralax for 4 years (he is almost 8 now). It really really messed him up for being able to feel urges and for many of the symptoms you described below. The last 2 months we have been doing the Soiling Solutions program. This program was a lifesaver for getting him off of Miralax, but also getting him going with the aid of bottom up meds and stopping his holding behavior (Encopresis). But I felt the need to look further for a more natural method. Very recently I was reading that Extra Pure Virgin Olive Oil is used for relief of constipation. So I decided to have him give it a try. Two nights in a row now, he has been able to go with ease.I

dont know if its a

fluke or not, but we are going to continue 2 Tablespoons Olive Oil until I see else wise.Maybe something to think about trying. To: miralax Sent: Monday, May 28, 2012 8:56 PM Subject: Re: 8-yr-old son miserable, HELP!

Hi Diane

My son was on miralax from age 3 to early 4. It's a trial and error to get off of it -- because each kid is different. Please check out the files section (on the left hand naviation side). I posted a doc -What Worked for Us that may help you. Because your son has been on so long, it VERY likely he will have a buildup of calcium oxalate crystals in his system. The best way to deal with them as he detoxes is lots of probiotics. I found prescription strenth VSL worked well (along with the other remedies). If the doc will list IBS as a diagnosis code the VSL will be covered by insurance usually.

HTH.

In case navigating the files proves frustrating, here's the direct link.

http://f1.grp.yahoofs.com/v1/kB_ET61MqJPHOgr4jtyhNpnShZegJVTvENTDynY32Aj8nWTm5njJt2RMuFx0jhxsfYGlatTSlte_8EiGc1yIIP-zaxoKY1TR5Egu/What%20worked%20for%20us.doc

BTW - has he had any UTI's? Irritated urinary tract? It's related to the miralax.

>

> Hi, my name is Diane and I am new to this group (heard about it from the NY Times article). My son is almost nine and has been on an adult daily dose of Miralax since he was 2. At the time, his problem was just constipation, but we couldn't seem to get it controlled any other way, so we finally started the Miralax despite the warning that it was not for kids. I have tried repeatedly to wean him off, but every time we have ended up with a cessation of pooping and a traumatic cleanout before he can poop again!

>

> In the intervening years, his gastro problems have just grown and grown. He spent years having severe intestinal pains, sometimes so bad that I felt like I was comforting a woman in hard labor (without any of the upsides of that!) Lots of painful and explosive gas. Then he developed terrible reflux, which ruined an entire summer, and only then became somewhat controlled by Prevacid. (He recently went off after years of taking it daily and now the reflux is starting to come back.) We seem to go through cycles of things being pretty good for a period of months and then getting bad again.

>

> Currently, our biggest problem symptom is the "need to poop" feeling. He will feel an intense sensation of needing to poop, whether he does or not. I have often wondered whether all these other symptoms are actually side effects of the Miralax, or at least having such runny poops all the time.

>

> He has had all the tests and the doctors say there is nothing physically wrong with him. They say it is "psychological" or "behavioral," and maybe it is, but that doesn't mean he is not really suffering. He is already seeing a psychologist for anxiety and was recently diagnosed as PDD-NOS. The folks at Kennedy Krieger who diagnosed him tell me that gastro problems are extremely common in PDD kids. They couldn't explain why. He does have lots of sensory issues, and I wonder if his gastro problems are essentially a sensory problem? He is supposed to start Occupational Therapy soon, but nobody has ever suggested that it is supposed to help his gastro problems.

>

> His last turn for the worse did coincide with both discontinuing Prevacid and discontinuing probiotics, which he was taking both morning and night. His doctor seemed to think that if he ate yogurt, the probiotics were unnecessary, and they are SO expensive and not covered by insurance or even tax-deductible (being OTC). Now I'm wondering if he should go back on?

>

> I apologize for the length of this post. Please, if anyone has any experience they would be willing to share, I would really appreciate it. Even if you don't have answers or suggestions, it would help just to know that someone else is having similar issues! We are feeling very alone with this.

>

> Thanks so much,

> Diane

>