Re: granddaughter's reaction to Miralax

[Guest guest]

Kay, I'm so sorry for what happened, this is just aweful and is exactly what happened to us. Hang in there...........as far as the bladder issues, we found a woman who posted something about lemon juice I wanted you to read. This was the only thing that gave our dd some relief, antibiotics made it worse. Fresh lemonade helps break down the oxalate crystals as I'm sure she's experienced pain or stinging while trying to urinate. I'll post it after this...........From: Kay

To: miralax Sent: Thu, February 23, 2012 11:53:08 AMSubject: granddaughter's reaction to Miralax

My four-year-old granddaughter was put on a daily dose of Miralax because she had become impacted and it was causing bladder issues. Within a few days, she had her first "fit," displaying behaviors we had never seen. As the weeks went by, the "fits" became regular occurrences. She would grimace and clench her fists, throw her toys, knock books off her shelves, yell at her parents, scratch her mother or herself, pull out chunks of her hair, sometimes scream and cry, laugh a maniacal laugh...really, she just became a little person we didn't recognize (like she was possessed.) She also did some babblings and a sort of repetitive spitting motion, almost like a tick. Being a retired teacher, I have seen similar behaviors from children who have been through major traumas like abuse, but our little one had never experienced anything but love.

My daughter is a hairdresser, and she mentioned these episodes to a nurse who works at a hospital with pediatric psychologists and psychiatrists. When my daughter told her about Miralax, the nurse immediately told about a current study regarding the ill effects of Miralax on children. What my daughter described was no surprise to the nurse who advised us to get my granddaughter off the Miralax immediately.

It's been a few days, and she is still having meltdowns, though not as frequently. I wonder if she will ever be our sweet little girl again. During this time, she became extremely oppositional, refusing to follow the simplest of instructions--and she would be very verbal about it--NO, I'm not going to...I'm just going to do this or that....You can't make me--I will do it if I want to...and so on. She just opens the fridge and says, I want a snack--and she starts to help herself. She wants her demands met "right now." Also, if we refused anything, this would trigger the meltdowns. Today, she did a little better when I refused to let her get her way, but I'm worried. We spend every day on pins and needles just waiting for the next major tantrum. We never know what will start it or how long it will last. We have had to carry her countless times to her

room kicking and screaming--totally out of control. We tell her to stay there until she can be nice to everyone and she sometimes emerges after a few minutes like the episode never happened. Sometimes, she doesn't realize how she has been.

Will some of these effects be permanent? Is there any other internal damage that might have been done to her while she was on Miralax for several months? Can we expect her behavior to return to normal? How long will it take? I'm so upset that this could be happening when we were told by her pediatrician that the Miralax would not harm her and that it was safe for her to be on it long term. Why don't doctors know about these side effects? How many children have had similar effects? I feel so angry. Is the company that makes this medicine aware of the problem with kids, if so, why haven't they sent out mass warnings to pediatricians throughout the country. THIS IS NEGLIGENCE!

I would appreciate any and all information I can get on this subject.

Kay (Texas grandmother)

[Guest guest]

Kay,

My heart goes out to the three of you. My daughter, 9, was on a daily dose of

Miralax for two and a half years. Her fits of rage started after about a year.

We thought they were contributed to the frustration and anger she was feeling

because of her enco. We have been taking her to a psychologist because she

hated herself and her life so much. We were WRONG! After a particularly bad

day, I let me husband know that if there was even a minute chance that Miralax

could be causing this, I could not give it to her anymore. It has been about a

week and a half and we now have OUR daughter back. It was about three days

before the behavior went away and we still have small setbacks, mostly because I

think she was used to acting a certain way when she didn't get her way. We will

now have to remind her of what is appropriate way to deal with her frustration.

We are a gazillion percent sure that the Miralax was behind her behavior. She

is 9, so we let her know. She just looked at me and said, " I'm so happy to know

that! " . Tears, tears and more tears, from me. I feel so guilty about poisoning

my child for so long, but am so happy to have calm and peace in my house once

again. (So are the neighbors) I am in the process of writing letters to her

pediatrician, and both of her GI doctors. The FDA will be notified of her " side

effects " also.

I can only let you know about our experience. She has an appt. with her

pediatrician next week. It will be an interesting conversation. Hang in there.

She will return to her once happy self! But, I also am fearful of long term

effects that the doctors are apparently not aware of.

Tamara

>

>

>

>

>

>

> My four-year-old granddaughter was put on a daily dose of Miralax because she

had become impacted and it was causing bladder issues.  Within a few days, she

had her first " fit, " displaying behaviors we had never seen.  As the weeks went

by, the " fits " became regular occurrences.  She would grimace and clench her

fists, throw her toys, knock books off her shelves, yell at her parents, scratch

her mother or herself, pull out chunks of her hair, sometimes scream and cry,

laugh a maniacal laugh...really, she just became a little person we didn't

recognize (like she was possessed.) She also did some babblings and a sort of

repetitive spitting motion, almost like a tick.   Being a retired teacher, I

have seen similar behaviors from children who have been through major traumas

like abuse, but our little one had never experienced anything but love. 

>  

> My daughter is a hairdresser, and she mentioned these episodes to a nurse who

works at a hospital with pediatric psychologists and psychiatrists.  When my

daughter told her about Miralax, the nurse immediately told about a

current study regarding the ill effects of Miralax on children.  What my

daughter described was no surprise to the nurse who advised us to get my

granddaughter off the Miralax immediately. 

>  

> It's been a few days, and she is still having meltdowns, though not as

frequently.  I wonder if she will ever be our sweet little girl again.  During

this time, she became extremely oppositional, refusing to follow the simplest of

instructions--and she would be very verbal about it--NO, I'm not going to...I'm

just going to do this or that....You can't make me--I will do it if I want

to...and so on.    She just opens the fridge and says, I want a snack--and she

starts to help herself.  She wants her demands met " right now. "   Also, if we

refused anything, this would trigger the meltdowns.  Today, she did a little

better when I refused to let her get her way, but I'm worried.  We spend every

day on pins and needles just waiting for the next major tantrum.  We never know

what will start it or how long it will last.  We have had to carry her countless

times to her room kicking and screaming--totally out of control.  We tell her to

stay

> there until she can be nice to everyone and she sometimes emerges after a few

minutes like the episode never happened.  Sometimes, she doesn't realize how she

has been.

>  

> Will some of these effects be permanent?  Is there any other internal damage

that might have been done to her while she was on Miralax for several months? 

Can we expect her behavior to return to normal?  How long will it take?  I'm so

upset that this could be happening when we were told by her pediatrician that

the Miralax would not harm her and that it was safe for her to be on it long

term.  Why don't doctors know about these side effects?  How many children have

had similar effects?   I feel so angry.  Is the company that makes this medicine

aware of the problem with kids, if so, why haven't they sent out mass warnings

to pediatricians throughout the country.  THIS IS NEGLIGENCE!

>  

> I would appreciate any and all information I can get on this subject.

>  

> Kay (Texas grandmother)

>

[Guest guest]

Tamara,

Thank you so much for sharing your story. I hope that your daughter has no permanent side effects or damage from this medicine. We are seeing improvements, but like you said, she got so used to throwing fits that she has to learn a new way to deal with not getting her way. Our pediatrician didn't think Miralax could affect the brain, but we are urging her to research so that she doesn't prescribe it anymore.

K

Subject: Re: granddaughter's reaction to MiralaxTo: miralax Date: Friday, February 24, 2012, 12:21 PM

Kay, My heart goes out to the three of you. My daughter, 9, was on a daily dose of Miralax for two and a half years. Her fits of rage started after about a year. We thought they were contributed to the frustration and anger she was feeling because of her enco. We have been taking her to a psychologist because she hated herself and her life so much. We were WRONG! After a particularly bad day, I let me husband know that if there was even a minute chance that Miralax could be causing this, I could not give it to her anymore. It has been about a week and a half and we now have OUR daughter back. It was about three days before the behavior went away and we still have small setbacks, mostly because I think she was used to acting a certain way when she didn't get her way. We will now have to remind her of what is appropriate way to deal with her frustration. We are a gazillion percent sure that the Miralax was behind her behavior. She is

9, so we let her know. She just looked at me and said, "I'm so happy to know that!". Tears, tears and more tears, from me. I feel so guilty about poisoning my child for so long, but am so happy to have calm and peace in my house once again. (So are the neighbors) I am in the process of writing letters to her pediatrician, and both of her GI doctors. The FDA will be notified of her "side effects" also.I can only let you know about our experience. She has an appt. with her pediatrician next week. It will be an interesting conversation. Hang in there. She will return to her once happy self! But, I also am fearful of long term effects that the doctors are apparently not aware of. Tamara>> >

> > > > My four-year-old granddaughter was put on a daily dose of Miralax because she had become impacted and it was causing bladder issues. Within a few days, she had her first "fit," displaying behaviors we had never seen. As the weeks went by, the "fits" became regular occurrences. She would grimace and clench her fists, throw her toys, knock books off her shelves, yell at her parents, scratch her mother or herself, pull out chunks of her hair, sometimes scream and cry, laugh a maniacal laugh...really, she just became a little person we didn't recognize (like she was possessed.) She also did some babblings and a sort of repetitive spitting motion, almost like a tick. Being a retired teacher, I have seen similar behaviors from children who have been through major traumas like abuse, but our little one had never experienced anything but love. > > My

daughter is a hairdresser, and she mentioned these episodes to a nurse who works at a hospital with pediatric psychologists and psychiatrists. When my daughter told her about Miralax, the nurse immediately told about a current study regarding the ill effects of Miralax on children. What my daughter described was no surprise to the nurse who advised us to get my granddaughter off the Miralax immediately. > > It's been a few days, and she is still having meltdowns, though not as frequently. I wonder if she will ever be our sweet little girl again. During this time, she became extremely oppositional, refusing to follow the simplest of instructions--and she would be very verbal about it--NO, I'm not going to...I'm just going to do this or that....You can't make me--I will do it if I want to...and so on. She just opens the fridge and says, I want a

snack--and she starts to help herself. She wants her demands met "right now." Also, if we refused anything, this would trigger the meltdowns. Today, she did a little better when I refused to let her get her way, but I'm worried. We spend every day on pins and needles just waiting for the next major tantrum. We never know what will start it or how long it will last. We have had to carry her countless times to her room kicking and screaming--totally out of control. We tell her to stay> there until she can be nice to everyone and she sometimes emerges after a few minutes like the episode never happened. Sometimes, she doesn't realize how she has been.> > Will some of these effects be permanent? Is there any other internal damage that might have been done to her while she was on Miralax for several months? Can we expect her behavior to return to normal?

How long will it take? I'm so upset that this could be happening when we were told by her pediatrician that the Miralax would not harm her and that it was safe for her to be on it long term. Why don't doctors know about these side effects? How many children have had similar effects? I feel so angry. Is the company that makes this medicine aware of the problem with kids, if so, why haven't they sent out mass warnings to pediatricians throughout the country. THIS IS NEGLIGENCE!> > I would appreciate any and all information I can get on this subject.> > Kay (Texas grandmother)>

[Guest guest]

Kay,

I'm so sorry for what your granddaughter is experiencing. If your family hasn't already done so, I urge you to file a report with the FDA Adverse Event Reporting System. It will help all parents if everyone contributes their experiences.

http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/Surveillance/AdverseDrugEffects/default.htm

Carol

Tamara,

Thank you so much for sharing your story. I hope that your daughter has no permanent side effects or damage from this medicine. We are seeing improvements, but like you said, she got so used to throwing fits that she has to learn a new way to deal with not getting her way. Our pediatrician didn't think Miralax could affect the brain, but we are urging her to research so that she doesn't prescribe it anymore.

K

Subject: Re: granddaughter's reaction to MiralaxTo: miralax Date: Friday, February 24, 2012, 12:21 PM

Kay, My heart goes out to the three of you. My daughter, 9, was on a daily dose of Miralax for two and a half years. Her fits of rage started after about a year. We thought they were contributed to the frustration and anger she was feeling because of her enco. We have been taking her to a psychologist because she hated herself and her life so much. We were WRONG! After a particularly bad day, I let me husband know that if there was even a minute chance that Miralax could be causing this, I could not give it to her anymore. It has been about a week and a half and we now have OUR daughter back. It was about three days before the behavior went away and we still have small setbacks, mostly because I think she was used to acting a certain way when she didn't get her way. We will now have to remind her of what is appropriate way to deal with her frustration. We are a gazillion percent sure that the Miralax was behind her behavior. She is 9, so we let her know. She just looked at me and said, "I'm so happy to know that!". Tears, tears and more tears, from me. I feel so guilty about poisoning my child for so long, but am so happy to have calm and peace in my house once again. (So are the neighbors) I am in the process of writing letters to her pediatrician, and both of her GI doctors. The FDA will be notified of her "side effects" also.I can only let you know about our experience. She has an appt. with her pediatrician next week. It will be an interesting conversation. Hang in there. She will return to her once happy self! But, I also am fearful of long term effects that the doctors are apparently not aware of. Tamara>> > > > > > My four-year-old granddaughter was put on a daily dose of Miralax because she had become impacted and it was causing bladder issues. Within a few days, she had her first "fit," displaying behaviors we had never seen. As the weeks went by, the "fits" became regular occurrences. She would grimace and clench her fists, throw her toys, knock books off her shelves, yell at her parents, scratch her mother or herself, pull out chunks of her hair, sometimes scream and cry, laugh a maniacal laugh...really, she just became a little person we didn't recognize (like she was possessed.) She also did some babblings and a sort of repetitive spitting motion, almost like a tick. Being a retired teacher, I have seen similar behaviors from children who have been through major traumas like abuse, but our little one had never experienced anything but love. > > My daughter is a hairdresser, and she mentioned these episodes to a nurse who works at a hospital with pediatric psychologists and psychiatrists. When my daughter told her about Miralax, the nurse immediately told about a current study regarding the ill effects of Miralax on children. What my daughter described was no surprise to the nurse who advised us to get my granddaughter off the Miralax immediately. > > It's been a few days, and she is still having meltdowns, though not as frequently. I wonder if she will ever be our sweet little girl again. During this time, she became extremely oppositional, refusing to follow the simplest of instructions--and she would be very verbal about it--NO, I'm not going to...I'm just going to do this or that....You can't make me--I will do it if I want to...and so on. She just opens the fridge and says, I want a snack--and she starts to help herself. She wants her demands met "right now." Also, if we refused anything, this would trigger the meltdowns. Today, she did a little better when I refused to let her get her way, but I'm worried. We spend every day on pins and needles just waiting for the next major tantrum. We never know what will start it or how long it will last. We have had to carry her countless times to her room kicking and screaming--totally out of control. We tell her to stay> there until she can be nice to everyone and she sometimes emerges after a few minutes like the episode never happened. Sometimes, she doesn't realize how she has been.> > Will some of these effects be permanent? Is there any other internal damage that might have been done to her while she was on Miralax for several months? Can we expect her behavior to return to normal? How long will it take? I'm so upset that this could be happening when we were told by her pediatrician that the Miralax would not harm her and that it was safe for her to be on it long term. Why don't doctors know about these side effects? How many children have had similar effects? I feel so angry. Is the company that makes this medicine aware of the problem with kids, if so, why haven't they sent out mass warnings to pediatricians throughout the country. THIS IS NEGLIGENCE!> > I would appreciate any and all information I can get on this subject.> > Kay (Texas grandmother)>

[Guest guest]

Kay, I'm Tamara's husband, and I can't tell you how much our lives have changed for the better. It was like someone flipped a switch when we took our daughter off the Miralax. The clincher for me was that both of her older sibs commented on her change in behavior without prompting from us. When my wife first asked my daughter if she noticed anything different (before telling her about our suspicions), her answer was gut-wrenching -- " I'm smiling again. " Unfortunately, now we have to deal with the physical fallout of 2+ years of Miralax dependency. She essentially needs to retrain her body how to have a normal bm. It's going to be challenging, to say the least.SteveSent from my Verizon Wireless Phone

[Guest guest]

Thanks for the encouragement. We put her on daily probiotics, and she eats a prune every morning. Yesterday and today she had normal movements. Today, she is singing and playing so happily. I live next door to her so I see her every day. I think we are getting our little girl back again. She has had a couple of events this week, but they are getting fewer by the day. I feel horrible about the events of the last few months. She has been punished so many times, and she lost half her toys--permanently. Whenever she did anything harmful to herself or others, she was spanked. To know that none of it was voluntary, makes us feel guilty. I prayed so hard last week for divine intervention, and it was only a day later that our nurse friend told us to get her off Miralax. God is

good. I will pray for your daughter for complete healing. God bless you,KaySubject: Re: granddaughter's reaction to MiralaxTo: miralax Date: Saturday, February 25, 2012, 11:20 AM

Kay, I'm Tamara's husband, and I can't tell you how much our lives have changed for the better. It was like someone flipped a switch when we took our daughter off the Miralax. The clincher for me was that both of her older sibs commented on her change in behavior without prompting from us. When my wife first asked my daughter if she noticed anything different (before telling her about our suspicions), her answer was gut-wrenching -- "I'm smiling again."Unfortunately, now we have to deal with the physical fallout of 2+ years of Miralax dependency. She essentially needs to retrain her body how to have a normal bm. It's going to be challenging, to say the least.SteveSent from my Verizon Wireless Phone

[Guest guest]

Your nurse friend? Is there any science she can provide that can support our movement to get this off the market for kids? She must have some knowledge or she wouldn't have said anything.

Thanks for the encouragement. We put her on daily probiotics, and she eats a prune every morning. Yesterday and today she had normal movements. Today, she is singing and playing so happily. I live next door to her so I see her every day. I think we are getting our little girl back again. She has had a couple of events this week, but they are getting fewer by the day. I feel horrible about the events of the last few months. She has been punished so many times, and she lost half her toys--permanently. Whenever she did anything harmful to herself or others, she was spanked. To know that none of it was voluntary, makes us feel guilty. I prayed so hard last week for divine intervention, and it was only a day later that our nurse friend told us to get her off Miralax. God is

good. I will pray for your daughter for complete healing. God bless you,KaySubject: Re: granddaughter's reaction to MiralaxTo: miralax Date: Saturday, February 25, 2012, 11:20 AM

Kay, I'm Tamara's husband, and I can't tell you how much our lives have changed for the better. It was like someone flipped a switch when we took our daughter off the Miralax. The clincher for me was that both of her older sibs commented on her change in behavior without prompting from us. When my wife first asked my daughter if she noticed anything different (before telling her about our suspicions), her answer was gut-wrenching -- "I'm smiling again."Unfortunately, now we have to deal with the physical fallout of 2+ years of Miralax dependency. She essentially needs to retrain her body how to have a normal bm. It's going to be challenging, to say the least.SteveSent from my Verizon Wireless Phone

[Guest guest]

I haven't had a chance to talk to her yet. She's out of town, but as soon as she's back, I plan to talk to her and find out how she knew about it, who is doing the study and any other info I can get. Bear with me for a few days and I'll report back as soon as I know something.

K

Subject: Re: granddaughter's reaction to MiralaxTo: miralax Date: Saturday, February 25, 2012, 11:20 AM

Kay, I'm Tamara's husband, and I can't tell you how much our lives have changed for the better. It was like someone flipped a switch when we took our daughter off the Miralax. The clincher for me was that both of her older sibs commented on her change in behavior without prompting from us. When my wife first asked my daughter if she noticed anything different (before telling her about our suspicions), her answer was gut-wrenching -- "I'm smiling again."Unfortunately, now we have to deal with the physical fallout of 2+ years of Miralax dependency. She essentially needs to retrain her body how to have a normal bm. It's going to be challenging, to say the least.SteveSent from my Verizon Wireless Phone

[Guest guest]

My daughter gives my granddaughter probiotics (one tablet) and she eats 4-5 prunes with shredded wheat cereal for breakfast. She is doing much better and her behavior is improving too.KSubject: Re: Re: granddaughter's reaction to MiralaxTo: "miralax " <miralax >Date: Monday, February 27, 2012, 7:49 AM

My daughter has encopresis and has been taking a cap of mirilax a day for almost a year. Per the doctors order. I'd like to give her a different medecine but not sure what to switch too.

Jen

Sent from my iPhone

[Guest guest]

We've had great success with Nature Calm, mixing it in with PlumSmart. I started off with a high dose (3 or 4 times the amount listed on the bottle) and backed off from there. Was great! We also use JuicePlus gummies.

My daughter has encopresis and has been taking a cap of mirilax a day for almost a year. Per the doctors order. I'd like to give her a different medecine but not sure what to switch too.

Jen

Sent from my iPhone

[Guest guest]

adverse events file - if not there already - like all of these, please disregard if you have in that file.

My four-year-old granddaughter was put on a daily dose of Miralax because she had become impacted and it was causing bladder issues. Within a few days, she had her first "fit," displaying behaviors we had never seen. As the weeks went by, the "fits" became regular occurrences. She would grimace and clench her fists, throw her toys, knock books off her shelves, yell at her parents, scratch her mother or herself, pull out chunks of her hair, sometimes scream and cry, laugh a maniacal laugh...really, she just became a little person we didn't recognize (like she was possessed.) She also did some babblings and a sort of repetitive spitting motion, almost like a tick. Being a retired teacher, I have seen similar behaviors from children who have been through major traumas like abuse, but our little one had never experienced anything but love.

My daughter is a hairdresser, and she mentioned these episodes to a nurse who works at a hospital with pediatric psychologists and psychiatrists. When my daughter told her about Miralax, the nurse immediately told about a current study regarding the ill effects of Miralax on children. What my daughter described was no surprise to the nurse who advised us to get my granddaughter off the Miralax immediately.

It's been a few days, and she is still having meltdowns, though not as frequently. I wonder if she will ever be our sweet little girl again. During this time, she became extremely oppositional, refusing to follow the simplest of instructions--and she would be very verbal about it--NO, I'm not going to...I'm just going to do this or that....You can't make me--I will do it if I want to...and so on. She just opens the fridge and says, I want a snack--and she starts to help herself. She wants her demands met "right now." Also, if we refused anything, this would trigger the meltdowns. Today, she did a little better when I refused to let her get her way, but I'm worried. We spend every day on pins and needles just waiting for the next major tantrum. We never know what will start it or how long it will last. We have had to carry her countless times to her room kicking and screaming--totally out of control. We tell her to stay there until she can be nice to everyone and she sometimes emerges after a few minutes like the episode never happened. Sometimes, she doesn't realize how she has been.

Will some of these effects be permanent? Is there any other internal damage that might have been done to her while she was on Miralax for several months? Can we expect her behavior to return to normal? How long will it take? I'm so upset that this could be happening when we were told by her pediatrician that the Miralax would not harm her and that it was safe for her to be on it long term. Why don't doctors know about these side effects? How many children have had similar effects? I feel so angry. Is the company that makes this medicine aware of the problem with kids, if so, why haven't they sent out mass warnings to pediatricians throughout the country. THIS IS NEGLIGENCE!

I would appreciate any and all information I can get on this subject.

Kay (Texas grandmother)