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Hi Diane—welcome to the board. Give us some more info… obviously she was put on miralax b/c she was constipated, but had constipation been a problem for her for a long time (i.e. from toddlerhood?) or a relatively short period of time? Had she ever had normal stooling patterns in the past? The holding-back thing… it can be a factor for constipated kids, but part of it is, that they hold back BECAUSE their systems

weren’t working right in the first place, i.e. something led to the painful stool, so the child held back. Now, a lot of these kids that we think are holding back purposely, really aren’t—they just really aren’t getting a clear signal, or when they do get the signal, they are not in a place to go ahead and feel comfortable going (i.e. they get an urge while the family is out shopping, and they don’t want to say anything, so they hold it in, and after a while, the body learns to just “ignore” that urge because the child doesn’t act on it anyway, so the body sort of “gives up”). SO how is she acting/behaving on Miralax? Was miralax the

first thing that you/the doc have tried? How are her stools on miralax—has she been having the fissures with the miralax or pre-miralax? My son actually stopped recognizing the urge to go while on miralax—a problem he had NOT had before going on it. If your child seems like they are holding in now, it could be that the miralax has chemically interfered with their ability to recognize when to go. The hypothesis on this board is that the miralax (PEG) interacts with a certain type of bacteria in the gut, and this converts the miralax to oxalates…too much oxalate buildup in the body interferes with the ability to go, along with the bad behavior/neurological changes that some of us have observed in our kids while on miralax. Some things that I would suggest trying would be: If the behaviors have not been noticeably different/bad on the miralax, then I would get some other things in place, and cut the dose in half while substituting in those “other things”. Some of the reasons why kids experience hard stools are—the lack of fiber in combination with water—but some GI tracts are having too many harsh contractions and it dries out the stool, so even though a person started out their day with a good amount of fiber and water, these overactive GI tracts (irritable bowel) are just squeezing it out, so that by the time it gets down to the business end,

it has become pellets. And pellety bm’s result in backup. Imagine that you have a tube sock, and you are putting marbles into it… the marbles ultimately pass by each other and squeeze by each other so that they form a HUGE glob down in the end of the sock…that’s what happens to those who have this problem—the pellets just begin to bunch up, cause a humongous movement, that causes pain and tearing when it actually does come out. Sometimes the pellets are surrounded by softer stool, giving the “appearance” of a normal, but huge, looking stool, but pellets are the root of the problem… the body just forced the softer stool around it, shortly before elimination. Anyway, for these kind of issues, sometimes getting a bit of magnesium in, can help, because magnesium helps the body regulate the GI tract contractions, as it works on smooth muscles. The archives have lots of old messages about magnesium… OxyPowder is one type, Kirkman Labs magnesium citrate powder is another… there are LOTS of varieties out there. In addition to using some magnesium, then I look at adding in some fiber to get some bulk going… can be natural from fruits veggies (like oranges or

celery or…) or it can be supplemental fiber… Fiber Choice chewables are one kind of fiber that kids can chew, almost like candy. Benefiber just made a powdered fiber that actually contains B vitamins—which also help with the GI tract contractions and nervous system, along with Folic acid…so I would give that a try, because it mixes in water the same way that miralax does. Plum Smart juice is one option to add in… ’s Aloe Vera Juice tastes like water, and for some kids, loosens stools. The main thing to remember as you read the archives and Files on our board, and get responses is, this really is a puzzle that you have to solve… what works for one child, might work for yours, but it might not…the point is to keep going. Kathy H. has been at this for a long time and is finally getting SOME success… others find success fairly easily… just keep going… what might not have worked in the past, might work at a later time once you get the old stool out—that’s something else to remember, too… things aren’t necessarily going to work on that first

day… it takes a week or two sometimes to see any “changes”. AND I can’t stress the importance of having a regular sit-time per day, to try to establish a regular bowel habit…even if it involves using babylax liquid glycerin suppositories at first, and then fading out how much you “squeeze in”… the idea is to get the body USED TO a certain time of day and place… THEN over time, they can begin to generalize that to other toilets/places, but it’s in our body’s history to be able to relax and expel at a certain time of day/place. I don’t mean like clockwork, I just mean that our bodies can become used to things, and with these kids who have a difficult time coordinating everything, it helps to provide them with that structure so that they can get successful. p.s. if she likes toast, have you

ever tried Fruit Eze -- it's a prune/jam kind of spread that you can put a thin layer on the toast... WDiane Bond wrote: Hello Everyone! My youngest was put on Miralax a few months ago and I am desparately trying to figure out how to get her off. I am afraid to just stop it for fear we'll be in the same mess that got us here in the first place. A little background, she eats

very healthy - lots of fruits and veggies. Yes, she does enjoy her yogurt and toast. I haven't tried the dairy or wheat elimination. But it seems more like a holding back thing than actual bowel issues. KWIM? She sometimes has blood (not in her stool but from fissures.) Can anyone help me get on the road to her being her normal self? Diane

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Hi Diane,

I'm Kathy H. Wow, has some great answers !

Please I beg of you to stop the Miralax now !! My daughter

is 12 and the GI doc started her on it at age 5 and I just got her

off it about 6 weeks ago ! Of course I tried many, many times

unsuccessfully.........................she would just get impacted and miserable

and I just gave in to the Miralax because nothing else worked !!

She also had severe behavior when off it and also when constipated.

She had a regression at about age 7 and started having reflux and also

regressing in her motor skills which were already very delayed due to

severe hypotonia.

She also was diagnosed with ulcerative colitis at age 9 and I don't know

for sure but I'm betting it could of been from Miralax.

Finally she is off it and I am so very happy. I don't know if she will ever catch

up with motor skills, probably not but at least I know she doesn't have that

toxic crap in her body. She actually went through a difficult detox for about

a month and is just now doing better. We are using 2 tlb. Lactulose at night.

400 mg Kirkman's mag. citrate at bedtime. In the afternoon I give her 9 grams

of fiber plus she is also on Dr. Geiers Lupron protocol so that may play into why

she is doing better, I'm not sure really, but they feel in some kids it is helping the

gut problems.................

Good luck and please I would try to use anything but miralax for your child's

constipation. I'm glad you found this group !!!

Kathy

Re: new to group

Hi Diane—welcome to the board. Give us some more info… obviously she was put on miralax b/c she was constipated, but had constipation been a problem for her for a long time (i.e. from toddlerhood?) or a relatively short period of time? Had she ever had normal stooling patterns in the past?

The holding-back thing… it can be a factor for constipated kids, but part of it is, that they hold back BECAUSE their systems weren’t working right in the first place, i.e. something led to the painful stool, so the child held back. Now, a lot of these kids that we think are holding back purposely, really aren’t—they just really aren’t getting a clear signal, or when they do get the signal, they are not in a place to go ahead and feel comfortable going (i.e. they get an urge while the family is out shopping, and they don’t want to say anything, so they hold it in, and after a while, the body learns to just “ignore” that urge because the child doesn’t act on it anyway, so the body sort of “gives up”).

SO how is she acting/behaving on Miralax? Was miralax the first thing that you/the doc have tried? How are her stools on miralax—has she been having the fissures with the miralax or pre-miralax? My son actually stopped recognizing the urge to go while on miralax—a problem he had NOT had before going on it. If your child seems like they are holding in now, it could be that the miralax has chemically interfered with their ability to recognize when to go. The hypothesis on this board is that the miralax (PEG) interacts with a certain type of bacteria in the gut, and this converts the miralax to oxalates…too much oxalate buildup in the body interferes with the ability to go, along with the bad behavior/neurological changes that some of us have observed in our kids while on miralax.

Some things that I would suggest trying would be:

If the behaviors have not been noticeably different/bad on the miralax, then I would get some other things in place, and cut the dose in half while substituting in those “other things”. Some of the reasons why kids experience hard stools are—the lack of fiber in combination with water—but some GI tracts are having too many harsh contractions and it dries out the stool, so even though a person started out their day with a good amount of fiber and water, these overactive GI tracts (irritable bowel) are just squeezing it out, so that by the time it gets down to the business end, it has become pellets. And pellety bm’s result in backup. Imagine that you have a tube sock, and you are putting marbles into it… the marbles ultimately pass by each other and squeeze by each other so that they form a HUGE glob down in the end of the sock…that’s what happens to those who have this problem—the pellets just begin to bunch up, cause a humongous movement, that causes pain and tearing when it actually does come out. Sometimes the pellets are surrounded by softer stool, giving the “appearance” of a normal, but huge, looking stool, but pellets are the root of the problem… the body just forced the softer stool around it, shortly before elimination.

Anyway, for these kind of issues, sometimes getting a bit of magnesium in, can help, because magnesium helps the body regulate the GI tract contractions, as it works on smooth muscles. The archives have lots of old messages about magnesium… OxyPowder is one type, Kirkman Labs magnesium citrate powder is another… there are LOTS of varieties out there.

In addition to using some magnesium, then I look at adding in some fiber to get some bulk going… can be natural from fruits veggies (like oranges or celery or…) or it can be supplemental fiber… Fiber Choice chewables are one kind of fiber that kids can chew, almost like candy. Benefiber just made a powdered fiber that actually contains B vitamins—which also help with the GI tract contractions and nervous system, along with Folic acid…so I would give that a try, because it mixes in water the same way that miralax does.

Plum Smart juice is one option to add in…

’s Aloe Vera Juice tastes like water, and for some kids, loosens stools.

The main thing to remember as you read the archives and Files on our board, and get responses is, this really is a puzzle that you have to solve… what works for one child, might work for yours, but it might not…the point is to keep going. Kathy H. has been at this for a long time and is finally getting SOME success… others find success fairly easily… just keep going… what might not have worked in the past, might work at a later time once you get the old stool out—that’s something else to remember, too… things aren’t necessarily going to work on that first day… it takes a week or two sometimes to see any “changes”. AND I can’t stress the importance of having a regular sit-time per day, to try to establish a regular bowel habit…even if it involves using babylax liquid glycerin suppositories at first, and then fading out how much you “squeeze in”… the idea is to get the body USED TO a certain time of day and place… THEN over time, they can begin to generalize that to other toilets/places, but it’s in our body’s history to be able to relax and expel at a certain time of day/place. I don’t mean like clockwork, I just mean that our bodies can become used to things, and with these kids who have a difficult time coordinating everything, it helps to provide them with that structure so that they can get successful.

p.s. if she likes toast, have you ever tried Fruit Eze -- it's a prune/jam kind of spread that you can put a thin layer on the toast...

WDiane Bond wrote:

Hello Everyone!

My youngest was put on Miralax a few months ago and I am desparately trying to figure out how to get her off. I am afraid to just stop it for fear we'll be in the same mess that got us here in the first place. A little background, she eats very healthy - lots of fruits and veggies. Yes, she does enjoy her yogurt and toast. I haven't tried the dairy or wheat elimination. But it seems more like a holding back thing than actual bowel issues. KWIM? She sometimes has blood (not in her stool but from fissures.) Can anyone help me get on the road to her being her normal self?

Diane

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WOW! What great information! I will give a little more info to let you know our situation. When Kyra was just under 2, she potty-trained herself (wanted to be like her big sis!). I went with it since she wanted it. About 3 weeks later, she regressed. I didn't keep at it since she was so young. I didn't want to force her into anything. Then about 2 months later she potty-trained herself again. A few weeks later, she regressed. I tried to never force her into using the potty, but full well knew that she had the understanding and the ability. So when the time was right, we dropped the pull-ups and diapers and just went with it. She did fine for awhile and then right after her 3rd b-day check-up with her ped (and her round of vaccinations), she began holding-back her stool. This was the week of Christmas. It was also the week that I miscarried. As well, the week we left for vacation to the beach. (A very hectic week, as you can tell.)

Anyway, by the time we got to the beach, she was a good 5 days backed up. I didn't want things to get bad, so tried to take advantage of all the local fruits and veggies on the island. Still nothing. Finally tried the glycerine suppositories. Worked for the vacation until we got back. All this while, it was torture for us getting her to sit on the toilet. My husband hated taking her into the bathroom in public places since she would scream bloody-murder for an eternity. He was so mortified wondering what strangers might be thinking that he was doing. And it was just awful. All the accidents and all the screaming, all the fighting. We hated it - as did she. So when she asked for a diaper, I gave it to her. But by that point, she just didn't want to ever go again. :( So she held back again. The nurse in her ped's office said, "oh, she sure is controlling, huh? Good luck!" I felt so bad because maybe she was right, but how rude! So we went to the enemas. Now my poor Kyra has such fears. Her ped put her on Miralax and it helped her go consistently. But sometimes she would have a day of diarrhea (4x/day) and then not go for 3 days. She'd wake up screaming at night with stomach pains. Somedays she'd complain her hips hurt. Those were the days that she hadn't gone in awhile. So when she goes a lot, is when she has the fissures. And I have IBS, so I totally get that pain and it's not fair to expect a 3 year old to deal with it!

As far as behavior....that's a toughy - she's a strong-willed 3 year old. I don't have much to compare it to. :) But I wouldn't say that anything out of the ordinary changed. But I realized that this wasn't going to end the day I was talking to a few preschool Moms. They said, "Oh yeah, Miralax - the majority of the boys in the class are all on it." WHAT?!?!?!? How is that okay? I wasn't expecting this to be a long-term thing! I just thought we'd help her get over her fear of BMs and then move on. That doesn't seem to be the case.

Kyra is currently on 1/2 TBL once/day. I want her off it asap and moving on to other things. I haven't had a chance to peruse the archives yet. Would it be a bad thing to just stop it one day and immediately start on other things? Or should I wean her? Any thoughts? THanks for all of the info!!!!

-Diane

Re: new to group

Hi Diane—welcome to the board. Give us some more info… obviously she was put on miralax b/c she was constipated, but had constipation been a problem for her for a long time (i.e. from toddlerhood?) or a relatively short period of time? Had she ever had normal stooling patterns in the past?

The holding-back thing… it can be a factor for constipated kids, but part of it is, that they hold back BECAUSE their systems weren’t working right in the first place, i.e. something led to the painful stool, so the child held back. Now, a lot of these kids that we think are holding back purposely, really aren’t—they just really aren’t getting a clear signal, or when they do get the signal, they are not in a place to go ahead and feel comfortable going (i.e. they get an urge while the family is out shopping, and they don’t want to say anything, so they hold it in, and after a while, the body learns to just “ignore” that urge because the child doesn’t act on it anyway, so the body sort of “gives up”).

SO how is she acting/behaving on Miralax? Was miralax the first thing that you/the doc have tried? How are her stools on miralax—has she been having the fissures with the miralax or pre-miralax? My son actually stopped recognizing the urge to go while on miralax—a problem he had NOT had before going on it. If your child seems like they are holding in now, it could be that the miralax has chemically interfered with their ability to recognize when to go. The hypothesis on this board is that the miralax (PEG) interacts with a certain type of bacteria in the gut, and this converts the miralax to oxalates…too much oxalate buildup in the body interferes with the ability to go, along with the bad behavior/neurological changes that some of us have observed in our kids while on miralax.

Some things that I would suggest trying would be:

If the behaviors have not been noticeably different/bad on the miralax, then I would get some other things in place, and cut the dose in half while substituting in those “other things”. Some of the reasons why kids experience hard stools are—the lack of fiber in combination with water—but some GI tracts are having too many harsh contractions and it dries out the stool, so even though a person started out their day with a good amount of fiber and water, these overactive GI tracts (irritable bowel) are just squeezing it out, so that by the time it gets down to the business end, it has become pellets. And pellety bm’s result in backup. Imagine that you have a tube sock, and you are putting marbles into it… the marbles ultimately pass by each other and squeeze by each other so that they form a HUGE glob down in the end of the sock…that’s what happens to those who have this problem—the pellets just begin to bunch up, cause a humongous movement, that causes pain and tearing when it actually does come out. Sometimes the pellets are surrounded by softer stool, giving the “appearance” of a normal, but huge, looking stool, but pellets are the root of the problem… the body just forced the softer stool around it, shortly before elimination.

Anyway, for these kind of issues, sometimes getting a bit of magnesium in, can help, because magnesium helps the body regulate the GI tract contractions, as it works on smooth muscles. The archives have lots of old messages about magnesium… OxyPowder is one type, Kirkman Labs magnesium citrate powder is another… there are LOTS of varieties out there.

In addition to using some magnesium, then I look at adding in some fiber to get some bulk going… can be natural from fruits veggies (like oranges or celery or…) or it can be supplemental fiber… Fiber Choice chewables are one kind of fiber that kids can chew, almost like candy. Benefiber just made a powdered fiber that actually contains B vitamins—which also help with the GI tract contractions and nervous system, along with Folic acid…so I would give that a try, because it mixes in water the same way that miralax does.

Plum Smart juice is one option to add in…

’s Aloe Vera Juice tastes like water, and for some kids, loosens stools.

The main thing to remember as you read the archives and Files on our board, and get responses is, this really is a puzzle that you have to solve… what works for one child, might work for yours, but it might not…the point is to keep going. Kathy H. has been at this for a long time and is finally getting SOME success… others find success fairly easily… just keep going… what might not have worked in the past, might work at a later time once you get the old stool out—that’s something else to remember, too… things aren’t necessarily going to work on that first day… it takes a week or two sometimes to see any “changes”. AND I can’t stress the importance of having a regular sit-time per day, to try to establish a regular bowel habit…even if it involves using babylax liquid glycerin suppositories at first, and then fading out how much you “squeeze in”… the idea is to get the body USED TO a certain time of day and place… THEN over time, they can begin to generalize that to other toilets/places, but it’s in our body’s history to be able to relax and expel at a certain time of day/place. I don’t mean like clockwork, I just mean that our bodies can become used to things, and with these kids who have a difficult time coordinating everything, it helps to provide them with that structure so that they can get successful.

p.s. if she likes toast, have you ever tried Fruit Eze -- it's a prune/jam kind of spread that you can put a thin layer on the toast...

WDiane Bond <dianebondwideopenwest> wrote:

Hello Everyone!

My youngest was put on Miralax a few months ago and I am desparately trying to figure out how to get her off. I am afraid to just stop it for fear we'll be in the same mess that got us here in the first place. A little background, she eats very healthy - lots of fruits and veggies. Yes, she does enjoy her yogurt and toast. I haven't tried the dairy or wheat elimination. But it seems more like a holding back thing than actual bowel issues. KWIM? She sometimes has blood (not in her stool but from fissures.) Can anyone help me get on the road to her being her normal self?

Diane

Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

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Hi Diane, You have my sympathy. We have BTDT. My DD is 3 also.

>She'd wake up screaming at night with stomach pains. Somedays she'd

>complain her hips hurt. Those were the days that she hadn't gone in awhile. My DD has done that...her hips always hurt when she really needs to go. Actually I think it's just her left hip, which makes sense since that's where her descending colon should be (okay, not in her hip, but near it).

>Kyra is currently on 1/2 TBL once/day. I want her off it asap and moving on to other >things. I haven't had a chance to peruse the archives yet. Would it be a bad thing to just stop it one day> and immediately start on other things? Or should I wean her? Any thoughts? THanks for all of the info!!!!We went off Miralax cold turkey because we changed pediatricians. We had been giving her 1/4-1/2 tsp. once a day. Our new ped is also a chiropractor and very committed to natural methods of healing. He recommended stopping Miralax and switching to an herbal stool softener (he recommended Swiss Kriss, but I can't get that into my DD regularly...it can be made into a tea and added to juice, but my DD won't drink juice). He also told us to add a good source of omega-3 fatty acids (fish oil), and a good probiotic. You'll have to research probiotics and see what seems best to you--there are a wide variety of them out there. You'll find a ton of information about this in the archives. For emergency situations, where there is a mass that really needs to come out quickly, our ped recommends mineral oil. Not everyone is comfortable with mineral oil. But I find that it works faster than other things. Re: tummyaches. We found two things that help: papaya enzymes from GNC, and Gentle Natural's Tummy Soother (ginger/chamomile/fennel). I think this might be the same thing as Gripe Water that many people use with babies. It helps with the bloating and gas pains that sometimes accompany constipation. I have taken to given my DD enzymes with every meal to prevent a tummyache afterwards. They really help. And Tummy Soother kept us out of the emergency room one night. I gave it to her and then phoned our pediatrician. Literally as I was talking to him, she started passing tons of gas and stopped crying...she had been doubled over with pain and it just stopped. Re: probiotics. One thing we've found very frustrating with going off Miralax (actually we also had this problem when she was on it) it that with any stool softening supplement, she ends up going multiple times/day, having supersoft poops that stick to her bottom, and then getting a terrible diaper rash as a result. That's when we get the screaming visits to the bathroom. I actually said to my husband the other day, " Maybe constipation is better than this! " OK, I guess I didn't really mean that. Anyway, if you run into this problem, you may find that probiotics are the solution. (We're in the middle of changing from one brand to another and tweaking the dose...but it seems that when the probiotic is just right, it can actually transform those toxic burning poops into something more gentle.) Re: pain of days-delayed bowel movements. This sounds like such a simple thing, but I find it really helps if I rub my DD's lower back or feet while she's sitting on the potty. It helps so much in calming her down and providing pain relief that I have started to think of touch in the same category as her other supplements! It has some medicinal value...

You mentioned that this episode was preceded by a round of vaccinations. I'm not saying that caused it. But it's something for you to keep in the back of your mind as a possibility if it starts to seem like there's more going on than just withholding. Re: IBS. We sometimes have suspected IBS in my DD's case. I'm still not sure. I was diagnosed with it at one point myself. Anyway, following the IBS diet at http://www.helpforibs.com/news/

does seem to help somewhat.Anyway. Sorry to go on at such length. Hope this is useful, along with everyone else's helpful thoughts...Bonnie

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  • 10 months later...
Guest guest

Hello all, I just wanted to let everyone know I'm so glad I found this

group. I wanted to share my triggers:

- twisting off a bottle cap

- sniffing

- smacking

- chewing, even with mouth closed

- typing

- clanking of spoons in bowls

- scraping of forks

- licking an ice cream cone

- moving feet

- popcorns/napkins in movie theatre

- the words " snack " and " breakfast "

- and many more

Thanks for letting me share :)

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  • 4 months later...
Guest guest

I'll be thinking of you. I know you will do fine. Remember it is not your choice to be this way. Let us know what happens. I'm heading out of town for a few days, so geesh I'm putting the pressure on waiting for your reply... :)

(((((((((((((((hugs)))))))))))

New to group

Hello,

I am new to the group. My name is Debi and I believe my 11 year old son, Elijah, has Sound Sensitivity Disorder. My friend found an article written by Dr. yesterday on the internet and sent it to me. It described my son perfectly. He was fine and then literally woke up one day unable to eat dinner with us or be anywhere near his 6 year old sister. Her lip smacking, chewing, drinking just about anything pushes him to a point that scares us all. Now, he is also fixated on my eating as well.

We don't understand what happened and why. It was as though he woke up a different child one day and we want to help him get back to his old self; if that is even possible.

Can someone help me (and my husband) understand why this happened and give me treatment options? What can we do to help him? He uses ear plugs at the table or just eats in another room on really bad days. He is very bright, does great in school (he's actually starting a new school this fall for gifted children in math and science and technology). He's very excited that he was accepted and I don't want this to affect him there. So far, it's the worst at home with us (even at restaurants with us he goes to a separate booth).

Any help, advice or treatment options are desperately welcomed.

Debi ( & Little Ben)

Shelby Township, Michigan

In a message dated 7/29/2008 8:42:41 A.M. Eastern Daylight Time, vmfcomverizon (DOT) net writes:

>> I'm sorry to say that my mother has always been the root for most of my > triggers. She I first became aware of her snorting, then it went to > everyone else around me. Then it was her talking in german (she's full > german) then it was the computer typing. Now, for the past year or so, > it's just her talking in general!! I mean I can talk to her face to > face, but even then sometimes I say, "Mom, I'm standing right here." > It's mostly a trigger when she's talking on the phone! I think she's > talking soo loud! I can't stand it, I mean most of the time I'll go in > my room and listen to music. But sitting in the car with her talking on > the phone is almost unbareable!! !! Does anyone else have any triggers > like this??>My father was my original trigger. However, my mother became a trigger later on. My mother is

full german also and talkes WAY too loud also. She was a school teacher and I think she just got used to having to project her voice all the time. Anyway, I don't consider her loud talking a trigger so much as just painful. My husband is a loud talker too the difference being that I can make a quiet motion and he will lower his voice for me. The other difference being that if he is talking nearby and I want to go to bed he will move his converation to where I can't hear it. Oh, and my mother talks very very loud on the phone also. When she visits I'm constantly trying to steer her into the fininshed basement when she's on the phone. I don't know why some people feel the need to yell everything they say.I struggle more with the noises of my moms breathing and spit while she is talking though than the talking itself.

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