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Post by PaigesMom on Mar 1, 2005 10:16:09 GMT -5
I am really glad I came here with this. I appreciate all of the thoughts - I am not feeling any better with all of this, but maybe a little more 'at ease' with the fact that there might be some other things out there to help her.
Like I said in some of my other posts (and some of you have concurred with) - I dont doubt that she might not have the muscle tone or the cognitive ability to work the muscles she needs to in order to go, but I dont buy (and probably wouldn't buy it with any kid with DS) that "she doesnt know how to go" - to me that is more of a cognitive realization than an issue with not understanding how to make it happen. I hope you understand what I am trying to say - I am not in some sort of denial about the MR aspect of DS, I just think the issues are different.
I dread, and I'm being honest here, hoping no one takes offense, that I am going to have to 'teach' her how to go to the bathroom. I do believe since she'll be 5 in a couple of months that some of the behavior might be learned or just what she is used to and doesn't know any different, now..........it just seems so exhausting at times, but somehow, we'll find an answer.
I hate the fact that she has so many medical issues. None of which are 'serious' (well this is) or 'life threatening' (maybe that's what I should say), thank goodness, but just tons of different issues requiring different specialists seemingly all of the time. There is never a week where I'm not in the dr.'s with her somewhere. Ahhh,
Well thanks again, sorry for my dump, sorry for bailing on this board, some of which was related to me, some the board itself (which may or may not have been founded), but I cant do this all myself (my husband is great, but the medical stuff and school stuff is pretty much on me), so I'll be around more.
Thanks again, Debbie
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Post by PaigesMom on Feb 28, 2005 12:49:52 GMT -5
Laura, Thank you for that site!! It is awesome, encouraging, but discouraging because in the yellow box you were talking about, Paige has both symptoms that point to disease (from birth) and not functional retention - she has NONE of those symptoms, only the other two. I am going to call the dr. to see what he says about this colon manometry test - it is the only thing left and I'm wondering why he didn't suggest it, we'll see what he says. The pseudo obstruction thing sounds very possible also - lack of nerve and muscle coordination - they just didn't say how to 'fix' it other than the laxatives which she already takes.
You are funny when you say I sound upbeat ---- I am a total stress ball, especially right now. This has been going on for way way to long and I'm tired of it. I just cant accept "she doesn't know how to poop, it's a cognitive thing"........she knows what poop is and the feeling her body give when she has to go......I will accept that she can not coordinate the sensations and the muscle contractions - I think this is where the bowel RE training comes in and you are right, for Paige it would be bowel Training, not retraining.
Do you mind if I ask what you entered in search to get that article? I've entered about every combination of words possible for this.
Thanks for all of you help, everyone.
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Post by PaigesMom on Feb 27, 2005 10:03:13 GMT -5
Ladies, I really want to thank all of you who replied for your suggestions and thoughts, it means alot to me. We have been going thru it with Paige and lots of different things, mostly this and her ADHD/Impulsive Disorder - she is challenging most people, including her teachers.
Anyway - she has NEVER had a bowel movement on her own, including meconium - they stimulated her with a thermometer. When she was an infant, I had to stimulate her with a thermometer and excavate her, I know, to much info. Sometimes I still have to excavate her. After that it was simply Lactulose, a sugar based 'laxative', which is not really a laxative, per se and thermometer or finger stimulation. Then it was Senekot - senna - and lactulose, then it was suppositories, then enemas, then regular fiber from the store, now it's Mirilax, which is a bulking prescription formula. If any of you know about Mirilax, Paige takes TWO whole capfuls a day or 34 grams (an adult dosage is 17 grams) and she takes 2 teaspoons of Senekot liquid as well every day. Every 10th day she gets 3 enemas - one mineral oil, then half hour later, a whole adult Fleet, then in another half hour another whole adult Fleet, then I do 'infant massage' the I Love You technique on her belly, about 45 minutes later, then she starts to go, no she doesnt push, it just 'comes out' liquid and she panicks - she starts to jump up and down and scream 'mommy, mommy, yucky, yucky, I need my diaper changed' - It's verbatim every time, and she cries.
She goes about 6 times in a row, the first two times being extremely constipated, and water from the enemas and the next few times just diarreah, explosive.
This is well above the 'constipation problems' our kids have, that is why I have always thought she had a physical problem. But I have now been dismissed by the last dr. with the theory that it is not physical as demonstrated by tests, but the lack of cognitive ability to either 'know' what the sensation means, or the lack of ability to 'know' what muscles to use or how to coordinate it.
Her rectum is in a chronically dialated state, constantly open, so dilation wouldnt' help, but it was a great thought. I am going to check out the article meghans mom posted on bowel retraining and mix some of what MB had to say about putting her on the potty (I do not talk to her about pooping or even tell her she is getting meds to go, I simply put it in her food, however, she very well could be picking up on my fears somehow, especially on the 10th day when we do enemas) . And she does know what is going to happen to her, as soon as she sees the box she starts screaming. She is strong, my husband and I have to do this together. I have to sit backwards on her with her arms between my lets or she punches my back to death and my husband holds her legs up in the air. I am sooooooo afraid I am going to hurt her with the enema applicator tip.
Again, I really do appreciate all of your responses, and I agree with MB that hearing all of the different ideas and suggestions is wonderful. I backed away from all message board a few months ago, I just have so much going on with her and I am so involved with being the VP of our local very large group and taking care of my family and working full time that I sort of get lost in this DS 'thing' sometimes.
I am so totally confused on this and I just want someone to 'fix it'. It is NOT good for her - the pain, the throwing up when she eats and drinks and the enema cleanout - and it's definately wearing on me!
ANYMORE responses or follow up replies would be greatly appreciated. Thank you.
Debbie
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Post by PaigesMom on Feb 25, 2005 18:06:49 GMT -5
I am feeling stumped and overwhelmed with this, and I really need to hear other MOMS AND DADS opinions here. A forewarning, this is probably going to be long for some of you to read so I'll be as to the point as I can be. This subject you will see in the end, is not really about a 'health issue', but more about a cognitive issue so that is why I placed it in this forum.
Here we go:
Paige has NEVER gone poop on her own since birth. We have been on a long road of laxatives and enemas. She is going to be 5 years old soon. She is fighting the hell out of me for enemas, laxatives dont work to make her go, she takes them every day and every 10 days I have to do enema cleanouts on her.
She's had upper and lower GI's, gastric emptying scans (also known as milk scans), she's been biopsied for Celiac Disease, she's been RAST tested for all food allergies, she's been biopsied for Hirschprungs disease at 4 months of age and most recently, yesterday, we had an ano-rectal manometry test, which also detects the possible presence of Hirschprungs Disease by measuring rectal pressures and the body's response to stimuli - anotherwards, does her body feel stool and the urge to push. THANKFULLY, all of these tests over the last 4 years have been NEGATIVE.
So, why doesn't she poop??? I've been to 3 well renound childrens hospitals here, have seen specialists and have actually been to a clinic and she has her own 'bowel management program' - similar to something a person would have after they had a pull thru operation for whatever reason. It involves food and laxatives.
Yesterday, after the manometry test, not that I *wanted* it to be Hirschprungs at all, but I was upset at the fact that another test showed NOTHING. Another anesthesia for nothing and nothing to help my poor girl whom this visibly affects - she stops eating, she begins to throw up, etc.
So now since you all know the basics, here is my question...........The dr. comes out and says to me that she has had everything done known to mankind for this type of problem, and very cautiously starts to talk to me about cognition/mental retardation - and he has NEVER gone there before. I respect him, alot, and I feel he has done his best job to figure out what is wrong with her. He told me that he is beginning to believe that Paige doesnt 'know how' to poop. That she feels the urge, but that her brain is not connecting the sensation with the physics of it, and it is not telling her 'hey, that sensation means you have to poop so push!'. He says that he believes she DOES feel the urge/sensation but that she cognitively 'ignores' it - not in a deliberate sense - but doesn't do anything when she feels it and might even be confused by what she is feeling - ie. not knowing what it means to feel that urge. Then it snowballs, she doesnt go, stool sits in there, hardens, requires enemas, laxatives to keep it soft only and THIS is the reason that the laxatives do not work to make her go, again same reason, she feels it, but doesn't act on it......he says her body will eventually have to expel some just in order to function, but it is her mind that has to make the connection.
Now, I dont know if i CAN or SHOULD accept that, but what else can I do? I mean, there is nothing physically wrong with her.....but how can her brain NOT tell her to push, how can she NOT recognize that signal.........and will she ever??? He says with maturity, in a few years, but geez, she'll be 8 years old by then. He also says that this has been her pattern since birth and that could also play a factor....she's never recognized the sensation and she'll be five..........HOW do I TEACH her to recognize that sensation.
I am looking for other 'moms and dads' opinions on this. Do you really believe cognition can have anything to do with this?? Be Honest. Paige functions WELL, but of course some areas and concepts are better than others.
Thanks for any help anyone would offer.
Debbie
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Post by PaigesMom on May 22, 2005 8:23:32 GMT -5
Ok, here is my two cents, lol. Again, I dont think they meant any harm, but it does come down to appropriate touching, etc. ---- That being said, in my mind there are different appropriate touches, there are the touches themselves and then there are WHO we CAN touch at all, KWIM?
So the fact that he was holding hands is not in itself a bad touch, but an inappropriate touch with the other little boy.
This is why I would recommend the Circle of Friends program - do you know what that is? You can make it yourself, easily, and it is an instructional tool on WHO we can touch, and HOW we can touch them - ie. we can kiss our mom and dad, sisters, etc., but we can not kiss kids at school, things like that. We can shake hands with strangers, but we can not hug them. The closer to the inside of the circle, the more affectionate we can be, the farther away from the circle, the less affectionate we can be.
If you want, I can tell you exactly what I did for Paige - she'll be 5 (cognitively shes about 3.5-4) and she gets the general concept. It hangs on my refrigerator and she can look at it daily and we talk about it daily.
Let me know.
Debbie
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Post by PaigesMom on May 22, 2005 8:26:31 GMT -5
Super Claire, that is so awesome!!! I'm glad it went good for you and that everyone was so receptive.
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Post by PaigesMom on Feb 21, 2005 22:24:01 GMT -5
Oh, lol, I was reading the form like "does he do these things" - if not, we'd work on them in MT, not, does he do them when he listens to music. That just does not make any sense to me, OF COURSE he would do those things when he listens to music, any kid would, wouldn't you think? I'm glad to know I'm not the only nutball out there singing songs about toothbrushes......maybe we should compare songs "mine goes brushing, brushing, brushing and STOP.....then we laugh and I go, ready, set, go, brushing, brushing, brushing and STOP" .......LOL, kind of incorporated stop and go into that little personal hygiene lesson, lol. Debbie
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Post by PaigesMom on Feb 21, 2005 19:08:22 GMT -5
This is a hard thing to 'talk' about via typing, because there is SO MUCH to say.
Music therapy is about interacting and engaging with others in appropriate play as well as improving cognitive ability. Music is motivating - motivating to the point where if a child 'feels' a rythm they will attempt to do things that they might not have ordinarily attempted to do.
It's not just about 'teaching' fingerplays - yes, they do learn them, but it's about what goes on in the brain as they are learning - Itsy Bitsy Spider (and I'm only using this as an example b/c it's been used here already) is just the 'song itself' - there is so much more, its hand movements, it's fine motor skills, eye hand coordination, cognition (ie. what did the spider do next, and even rain can wash him away, the sun dries the rain, etc.), speech - it's not really about a spider climbing a waterspout . MT is very interactive and fun, which motivates our kids to learn and to do things. I guess that is the best way I can explain it. Everything listed on that checklist is something that is worked on in MT. I would say that the more NO's you give, the more likely he is to get the service. If he's doing alot of those things then they 'on paper' wont see the need.
When Paige was a baby EVERYTHING I did with her was soooooooo overly animated, I mean, sooooooooo animated. I did everything to make her try to imitate me, make sounds, move, etc. regardless of what it took (and what a fool I looked like doing it). And I mean even in public places. I would do things like "ooooooooohh, oooohhhhhhhhhhh, oooooooooohhhhhh, Paige, Paige, Paige, look, look, look, there's a cow, cows say mooooooooooooooo, mooooooooooooooooooooooo, mooooooooooo, see the cow, see the cow - and then I would MAKE UP a song about cows right away, "The cow is in the field, the cow is in the field, Hi, Ho, the farmer Oh, the cow is in the field- the cow eats the hay, the cow eats the hay, etc. .........." You get it, I'm sure.
My husband thought and still thinks I'm a complete nut,and he wouldn't be caught dead making up songs, but it works and music is a definate motivating factor for her.
If you want to fill out the form, I would be more than happy to help you 'give answers' . Music isn't for everyone, but I think it's worth a shot.
Hope this helps, Paiges Mom, the singing fool, Debbie
P.S. And OMG, my 3 year old son, he just thinks I'm hysterical making up funny songs and jumping up and down pointing and singing about things like toothbrushes and shoes - he loves music as well.
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Post by PaigesMom on May 21, 2005 12:56:38 GMT -5
Oh boy, I'll probably start a ruckus here - not my intention. I agree that you can look at this from many different perspectives, BUT in MY OPINION, it comes back to what 'appropriate touching' is. Whether they meant any harm or not, to me is irrelevent - 12 year old boys dont hold hands (and this has nothing to do with being gay). If he was 8 or 9 or *maybe* 10, then I would say ok, but no older than that. There are various reasons I feel this way, but mostly:
A. I would wonder if he understood (and if he didn't, a first step in teaching could be this situation) who was allowed to touch him - there is a program called Circle of Friends for our kids if you're interested - so that he doesn't allow it from everyone.
B. AND, sadly, our kids already have enough to overcome, putting himself in that position, again, in my opinion, only leads people to think differently of our kids (even though Chris would not understand that now)
So, AT THE TIME, I probably would have done nothing, OR, after a few minutes I might have asked him to come back and sit with me, maybe. But after the program was over and the friend was gone, if it was Paige, I definately would sit her down and talk to her about appropriate touching, and maybe find a teaching tool to use together - a social story, this program Circle of Friends (which you can actually make yourself).
Debbie
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Post by PaigesMom on May 20, 2005 17:13:31 GMT -5
Hi Jessie -
I can tell you what my experience has been with extra speech therapy for Paige. Our insurance company (which at the time was an HMO), and I think most of them do, have a provision for a certain amount of speech therapy - sort of like the psych. part of the provision - they will pay for so many free, then the next so many cost you so much out of pocket, etc., until you use up your alotment - and it usually is a lifetime alotment of like 30 visits.
After that was used up we went thru Paiges secondary insurance, which is also an HMO, but since she's considered disabled, they pay for extra services 100% with a dr.'s prescription and for a dr. in the PPO organization. That was our problem, the place we were taking her did not accept the secondary insurance because they paid such a low portion of the bill.
That is when we stopped. So I'm thinking you might get 'some' from Aetna, but you will get more from Jasons secondary insurance if he has it.
Good luck, hope that made sense.
Debbie
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Post by PaigesMom on Feb 20, 2005 10:16:41 GMT -5
Same here, prayers your way. It's tough enough knowing what is wrong and not being able to help, let alone not knowing. Hope she's better soon!
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Post by PaigesMom on Feb 20, 2005 10:12:04 GMT -5
A. - lol,
No, I know, I just wanted to make sure that you didn't miss what *I* was saying about Paige's music therapy. I know some of the other responses were just about Music in the cirriculum, and not about music therapy, per se.
I'd be glad to help you or at least look at the form. It's crazy that they're making you jump thru hoops like that, and for the life of me I cant understand *WHY* they wouldn't think Russell qualified based on not only the DS, but his other diagnosises as well. Hmmmmmmm...
Anyway, I PM'd you my email.
Debbie
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Post by PaigesMom on Feb 19, 2005 19:35:24 GMT -5
A. Paige DOES have Music Therapy - it IS above and beyond any school cirriculum. This is her music therapists website: www.beckydegansongs.comDebbie
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Post by PaigesMom on Feb 18, 2005 16:53:15 GMT -5
Paige has "music therapy". She goes once per week. She had it once per week when she was in home based Early Intervention. She'll be 5 in a few months. When she went to preschool I requested it verbally, just as I requested continued PT, OT, speech. They wrote it into her IEP. There were no questions - she learns well through music and they said it could continue thru early intervention until she went to Kindergarten. I am keeping her in pre K preschool thru age 5-6, so she'll start Kindergarted @ 6 1/2 and then once in the school district, it would have to be paid for by me as they dont offer it. ( I guess just a simple music class - although I'm sure it's not exactly the same)
What do they do in class? They learn with song. They sing, they do fingerplays, they learn body parts, pronunciation of words, different concepts (hot/cold, big/little,) pronouns, etc. by songs that emphasize those things. Some are 'real' songs, most are made up by the music therapist. They also learn listening skills (ie. one song is about marching, they sing "marching marching marching and STOP" - everyone has to stop - then when the music starts they start marching or jumping or whatever the music therapists says to do) They play duck duck goose - it's very interactive, working on social skills as well as cognitive function - IEP goals.
I think it is fabulous.
Let me know if you have any more questions, I can post a song if you wish so you can 'see' kind of what I mean - it's hard to explain in words - hope this helps.
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Post by PaigesMom on May 21, 2005 12:59:04 GMT -5
YAY Susan, way to go, I am happy to hear that. You will definately be on my consult list come IEP time!!!
Deb
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