Re: Re: my 3 year old/advocacy

[Guest guest]

Well we talked to her gi today and they are going to schedule a colonoscopy and do a biospy as well. They are concerned about her nerves and well that makes since, she is hypotonic(low muscle tone) and she does have SID so maybe we are on the right track. The bad news is her doctor is not on rotation fro a couple of weeks so we may have to wait until then so in the mean time they want us to do enimea's, milk of mag, and miralax. We are looking for other alternatives. I may try aloe vera juice. Thanks for all the advice I just wanted to give you an update.Faith To: miralax Sent: Thu, February 4, 2010 8:33:04 AMSubject: Re: my 3 year old/advocacy

So true, Tracie!

>

>

> I haven't written anything on here in awhile but thought I might see

> what kind of input I could get. My daughter is now three and was on

> miralax for two years she has been off of it now for about two months.

> There really hasn't been much difference in her bm's. She was backed

> up even on two doses of miralax a day and she is backed up now. We

> had a x-ray on thursday and she was backed up. The GI doc had us give

> her six eniema's in six days and we had a repeat x-ray today and she

> is still backed up. The doc is supposed to call us in the morning and

> let us know what to do next. He was already gone by the time they got

> the results. They have never done any testing of the colon and they

> feel like she is just a kid that has problems with constipation. I am

> curious to know how many parents on here actually know what causes

> their kids constipation? I guess I just feel like they are missing

> something with her but maybe some kids just have these problems with

> no real cause? Any input would be nice.

> From: Barnett <dkbar711yahoo (DOT) com>

> To: miralax@yahoogroups .com

> Sent: Tue, February 2, 2010 5:33:06 PM

> Subject: Re: (unknown)

>

>

>

> Ann, I feel pretty confident that my grandson does feel when he has to

> go now. During the last 5 years he insisted he didn't know he had to

> go. He would have an accident and even act like he didn't know it was

> there. I've read that that's the way many children deal with it.

> When we'd have him sit on the commode after each meal, the accidents

> were pretty well controlled, but he'd still have little ones sometimes

> daily. He knew that it would please us if he said he did feel

> something, but he insisted that he didn't. We were told all that time

> to keep him on the Miralax because his colon was stretched and to go

> back to normal, he had to be cleaned out for 6-9 months. So we

> thought we had no option but to keep giving him something that kept

> him going like that.

>

> Soon after being off Miralax (this past Dec. 14th was the last dose)

> he started having formed BMs again and started saying he did feel when

> he went . Like I said, not one accident since then. He had his first

> overnighter with a friend last week with us not worrying that he'd had

> an accident. I'm hoping that it's not a false sense of security and

> he's not stopped up and getting more stretched out inside. My mom was

> on Miralax as prep for a colonoscopy recently and she had accidents at

> night. She said she didn't know when she had to go in time to get to

> the bathroom and that she'd never take that stuff again. And to think

> these kids take it for years. It's no wonder they have no control.

> Good luck.

>

>

> From: Ann Brown <a9willi@centurytel . net>

> To: miralax@yahoogroups .com

> Sent: Tue, February 2, 2010 7:18:29 PM

> Subject: RE: (unknown)

>

>

>

> ,

> I read what you had to say, and I am wondering if my son can feel when

> he has to go #2.

> He had been on Miralax probably 5 years or more, until I decided it

> was junk. He used Kristalose for a while, and now I give him a dose

> of Benefiber in his water 3 times a day. He goes pretty regularly;

> however, he goes in his pants (we are potty training; he is 7 years

> old, and he has the 'pee' part down, but won't poop in the potty yet.)

> I am not sure if he can feel it or not, or if he is afraid to go in

> the potty. He is diagnosed autistic, so his communication skills are

> lacking. When I say lacking, I don't mean he is nonverbal, I mean it

> is very difficult for him to communicate his needs. Anyway, you said

> your son feels when he has to go now...are you confident he is tell

> you the truth, and how long has he been off Miralax?

> Thanks for any input...I feel like you have experienced what I have

> experienced.

>

>

> Ann Brown

> a9willicenturytel (DOT) net

>

>

>

> (unknown)

>

>

>

> I have questions for those of you seeing good results with Magnesium.

> We've been told by my grandson's gi dr. that he can have cleanouts

> with the bottles of Magnesium Citrate if we think he needs it (she

> said not to do this more often than once a month or his Magnesium

> level could go too high). He's been on Fruiteze and Senokot since Dec.

> 14 with what appears to be good daily bowel movements and not one

> accident since then. He had had accidents almost daily for 5 years

> while on the Miralax. We blamed his encopresis, but now it looks like

> it was the Miralax causing the loss of control and the total inability

> to ever feel the need to go. He says he feels when he has to go now.

> The problem is we don't know if he's really cleaned out or not. We're

> optimistic because he's having no accidents and we were always told

> that when the accidents were occuring he was backed up.

>

> My question is this. Rather than give the bottles of Mag. Citrate,

> should we be giving a daily dose of Mag. Citrate? Is that what the

> Natural Calm you talk about is? If you give this do you need to worry

> about the Magnesium level going to high?

>

> I really appreciate this board and all the input about alternatives to

> Miralax. You all are the ones who got me thinking that 5 years was

> too long for him to be on a medicine when he wasn't showing any

> improvement.

>