Re: Re: miralax side effects - Lactulose dosage

[Guest guest]

Pam,

this isn't the only place you'll find the tics, SID, eye blinking & apraxia

there are many cases on the FDA adverse reactions submitted to the FDA..........maybe your doctor would like to see these? Miralax depletes magnesium so adding magnesium would indeed help...........read and see.............

http://health.groups.yahoo.com/group/miralax/files/---

Subject: Re: miralax side effects - Lactulose dosageTo: miralax Date: Saturday, February 14, 2009, 8:51 AM

Also make sure the dose is correct for lactulose:

Our Ped GI got it wrong - According to published standards on the internet and our Mayo Clinic docs, the right dose should be 1 tsp per 10 pounds child's weight 2-3 times daily...more or less depending on the severity of your starting point and then less later as things normalize for daily maintenance.

Pam

From: pamruetten <pamruettenyahoo (DOT) com>Subject: Re: miralax side effectsTo: miralax@yahoogroups .comDate: Saturday, February 14, 2009, 2:44 PM

Hi,My three year old was on Miralax for 2.75 years and has SID/apraxia. He also has the eye blinks and facial "wink" that you are describing. I have always wondered if the Miralax caused the eye blinking / SID / Apraxia or if it was there from the start as he was born with a few birth defects. He was off the Miralax for 4 months and then we had a severe situation where he HAD to go back on. I can say that there is a correlation in the eye blinking and Miralax use. The blinking was definitely increased while on adult doses of Miralax. The blinking was less when off the miralax and using Magnesium Citrate. Mag Citrate is used by touretts kids to calm these "tics". Every doctor I tell also says they have never heard of that side effect (eye blinking tic), but a Mayo surgeon did tell me that he believes it can happen as no drug "is free" (of side effects) in his words. My

son started the eye blinking "tic" at age 2. He had been on the Miralax for 1.75 years at that point. There are a lot of parents on this Miralax board who report eye blinking tics as a side effect of Miralax. I do believe that most of these kids have special needs already that predate the use of the Miralax...so we still do not know conclusively if Miralax is the cause of the tic. I for one do stongly suspect that it amplifies problems our kids are genetically predisposed to. I have not heard that eye blinking tics go along with constipation issues prior to Miralax as one would expect to hear if Miralax was not a trigger for these eye tics. Eye blinking tics cannot be all that common and the only place I have heard of other kids having eye blinking tics in on this Miralax board. Pam >> My daughter (almost 12 months) was put on miralax for a week after > lactulose was not working. I began to notice strange behaviors in her > after a few days on it (blinking eyes repeatedly, muscle twitches, > irritability, insomnia--up all night crying/fussing, and a general > jumpiness--she would bounce in her crib and when I would hold her). > Anyone had these same effects after less than a week on this drug? The > GI doc took her off (and put her back on lactulose) when I told her of > these side effects but said she had never heard of these before. The > ped was alarmed to say the least, but also said that he has never seen > any side effects of miralax, but now that she has been off for several > days, she seems back to her old self. I can't think of anything else > that

could have caused this. She does have SID-with gross motor skill > delay, but is otherwise fine. Please send me your thoughts and similar > experiences.>

[Guest guest]

Thanks Jeanie,

I have looked those files over before. There is such a large variety of symptoms and drugs being used in many of those cases. I only saw "tic" twice. I did see "tremor" a number of times. "Involuntary muscle movement" was another one that seemed to show up regularly. "Nervous system disorder" is yet another one. It does add some validity to what we are experiencing with our kids. I just think the eye blink tic is especially interesting because it is so unusual and yet I have heard that symptom time and time again from this Miralax group. I am sure that other parents are identifying with other symptoms that we haven't especially had.

I also have brought up the Miralax side effects to about 10 different doctors and doubt very much they gave it a second thought after we left their office. I just don't think doctors see it to be their role to second guess pharmaceutical safety. They are told it safe by some authority and for the masses....it seems to be without the symptoms we are having with our kids. I for one know of at least 6 kids on miralax whose parents absolutely swear it has caused no adverse side effects. My own mother takes it despite our trouble with her Grandson. I report it as a drug allergy everytime we are asked by a doctor/nurse. I have no doubt it causes these side effects for my Son and others. Unfortunately, it does not show up on the accompanying paperwork that you get when you pick it up as a prescription. Perhaps

that would be a win for us to get these side effects listed on the paperwork that comes with Miralax.

Even Tylenol has been known to cause sudden death...I do know of a lawsuit in TN over that right now. Nearly every pharmacuetical commercial on TV lists death as a possible side effect. The trouble is...people do not believe that side effects are real or will happen to them.

I am just rambling now....I am just trying to figure out what to do about this problem. I have reported it to the FDA, I tell all our doctors, I share our personal story to random people to spread awareness. I have considered legal recourse and that does not seem to be realistic either. Especially since my son is now BACK on Miralax because of a very serious health situation that developed from being off for 4 months.

Yes...I am venting....to the only people who probably understand...so THANK YOU!

Pam

From: pamruetten <pamruettenyahoo (DOT) com>Subject: Re: miralax side effectsTo: miralax@yahoogroups .comDate: Saturday, February 14, 2009, 2:44 PM

Hi,My three year old was on Miralax for 2.75 years and has SID/apraxia. He also has the eye blinks and facial "wink" that you are describing. I have always wondered if the Miralax caused the eye blinking / SID / Apraxia or if it was there from the start as he was born with a few birth defects. He was off the Miralax for 4 months and then we had a severe situation where he HAD to go back on. I can say that there is a correlation in the eye blinking and Miralax use. The blinking was definitely increased while on adult doses of Miralax. The blinking was less when off the miralax and using Magnesium Citrate. Mag Citrate is used by touretts kids to calm these "tics". Every doctor I tell also says they have never heard of that side effect (eye blinking tic), but a Mayo surgeon did tell me that he believes it can happen as no drug "is free" (of side effects) in his words. My

son started the eye blinking "tic" at age 2. He had been on the Miralax for 1.75 years at that point. There are a lot of parents on this Miralax board who report eye blinking tics as a side effect of Miralax. I do believe that most of these kids have special needs already that predate the use of the Miralax...so we still do not know conclusively if Miralax is the cause of the tic. I for one do stongly suspect that it amplifies problems our kids are genetically predisposed to. I have not heard that eye blinking tics go along with constipation issues prior to Miralax as one would expect to hear if Miralax was not a trigger for these eye tics. Eye blinking tics cannot be all that common and the only place I have heard of other kids having eye blinking tics in on this Miralax board. Pam >> My daughter (almost 12 months) was put on miralax for a week after > lactulose was not working. I began to notice strange behaviors in her > after a few days on it (blinking eyes repeatedly, muscle twitches, > irritability, insomnia--up all night crying/fussing, and a general > jumpiness--she would bounce in her crib and when I would hold her). > Anyone had these same effects after less than a week on this drug? The > GI doc took her off (and put her back on lactulose) when I told her of > these side effects but said she had never heard of these before. The > ped was alarmed to say the least, but also said that he has never seen > any side effects of miralax, but now that she has been off for several > days, she seems back to her old self. I can't think of anything else > that

could have caused this. She does have SID-with gross motor skill > delay, but is otherwise fine. Please send me your thoughts and similar > experiences.>