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| Thanks for the info. I don't mind you sharing with your daughter about my daughter...I think that is important so she does know she's not alone. How old is your girl now? Some of the symptoms you describe are similar to my daughter, but other's are different. Like you suggested, my daughter would need to get a nuclear transit test done to determine if she has STC or not. Does the Dr. say if your's daughter's intestine will rebuild itself again over time from using the interferential machine? When your daughter soils, does she say she doesn't feel it? Why do you think she soils the day after she doesn't use the machine? I'm just trying to figure out why my daughter soils some days and not others. She is currently not on laxitives. And I don't believe she is constipated. |
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| Sorry, forgot to say another option is to have the diseased part removed but I doubt they would do this without a trial of the interferential machine first. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| As far as I know, the only treatment is the interferential machine - and that is now all we are doing apart from also having a fairly low fibre diet. We haven't used laxatives since March/April. If we miss one day with the machine then she soils the next day - also after soiling, the psychological demeanor completely changes back to how it was before the machine. Total denial of an accident and "naughty" excitable behaviour. One specialist said "fix the constipation and you'll fix the behaviour" which we have found to be totally correct. I'm pretty sure you have to be born with STC and again, we had absolutely no idea anything was amiss until we tried to toilet train around 2. Then around the age of 3 she started continually vomiting and walking bent over on her tip toes. She was just about to see the surgeon to see if he agreed with the GP that it was appendicitis when he was called away to an emergency. It was then that they did an xray and discovered the constipation. Like I've said it was all soft stool. The doctors can't feel any mass but it's always there on the xray. The best thing to do is to have the nuclear transit study to rule out/in STC. But you need someone who is going to be able to properly "read" the results. Maybe the images can be emailed to the professor in Melbourne? I hope you don't mind but I've talked to my daughter about your girl having the same thing - she always thinks she's the only one. She wants to tell her that she thinks it's really annoying having accidents, that the machine is a bit restrictive but she can watch tv while she's wearing it and you need peel your apple before you eat it. :) | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I have another question for ireadlabels. I'm not completely clear what the treatment is once your child has been diagnosed with STC? What are you doing differently with your children now that you know they have STC? From what I have found on the web...much of the treatment is what we are already doing.... in order to keep the bowels empty. Am I missing something? I know with my daughter there is a behaviour/psychological component as well. Even when she feels the stool, she often ignores the signal and still refuses to go to the toilet on her own...and I need to prompt her. She's much less resistent than she used to be and will often respond to my reminder and go poo. I think it's her way of staying in "control". As she matures, (she is 9) she is getting better and acknowledging that she does have to poo. She is also on medication for ADD, and that helps tremendously because she's way more focused, both at home and at school. Can STC be acquired at any age? Could it be possible that my daughter wasn't born with the condition but acquired it when she was 2 when she started holding her stools. Can STC be acquired once the bowels have been stretched? or is STC something someone is physically born with? Ultimately I know you're not a Dr. and I would find out the answer to my questions if I made an appt with my daughter's pediatrician. But I'm curious and thought you might know some answers as well. Thanks, Looking forward to hearing from you |
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| Hello Joe,that's excellent news! You don't say how old your daughter is or if she had been toilet trained prior? It would still be interesting to have the Nuclear Transit Study done to completely rule out STC as well. It would be dreadful if you did all the laxatives for 12 months only to find that it was STC after all. It's free in Oz but I don't know how your health system works. My children had proper bowel movements after a "flush out" but it always returned to soiling as the system built up again. The other thing about STC is that the stools stay soft even when the colon is completely blocked up ie not the hard rabbit pellets etc. You don't say what your daughters stools were like? I remember being shown a stool chart and being asked to pick which one resembled my childrens stools and I said "none of them" it was always like freshly mixed cement - no form, not liquid, just ooze. But saying that never set off any "light bulb" in any of the multiple specialists that we have seen and we have travelled all over Oz! I hope your child doesn't have STC and that this new regime works for you. I am interested to know what your specialist thought about STC though. It's always amazing to see what some peoples children eat ie no fresh fruit, veges or fibre and they have absolutely no problem. Are you going to find out what the professor thinks about your specialists diagnosis? I wonder what it is in peanut butter that they are concerned about? My kids have that and dairy every day. We have tried no dairy at all - only soy - previously with no luck. But then found out that if you have Fructose Malabsorption you probably also have raffinose malabsorption (which is in soy) so it really is a never ending story! Best Wishes xx | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| And the impaction was not just in the ascending colon. Yes we had leakage, (all the time) but not from the narrow area defined by all the other doctors. Seeing this xray for ourselves, and how much fecal matter was bogging down our daughter was incredible. We never believed the "encopresis" moniker because that protocol never worked, which led us to believe it was something else. Further, we were told specifically to avoid peanut butter, ice cream, dairy, apples, applesauce, bananas and chocolate - all things she had daily. The problem with the dairy is the calcium and the phospherous. The calcium in dairy products cannot be completely digested by many people (this has nothing to do with lactose - lactose free also needs to be avoided) and can lead to significant impaction. It will take 6-12 months for the tissue to return to its normal size, so we have to be vigilant with our mirolax regimen (we are to reduce it back to one a day). What we are essentially trying to do is create stools that are almost diarhea like - no hard stools during this 6-12 month time. We are to try and prevent any more blockagge from occuring. This is day four - she has the urge to defecate and still no accidents. We have been through the worst I have seen on this site and the answer was very simple - it just took someone with some common sense who wasn't blindly following typical protocols in order to give us our daughter back. There is more, but I am running out of space. I hope this helps some of you. If you need more information I will be happy to provide it. |
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| Hello everyone. I've been on this site before looking for answers like everyone else. We had a breakthrough today that I wanted to share. For the last four years we have been to three pediatricians, three pediatric gastro specialists, run all the tests, had all the accidents, lived on the laxatives, had many soiled pairs of underwear everyday during this time. My limit was the full blown accidents at school. I read about STC, contacted John Hutson and was prepared to travel to Australia (we live in the US) to do something. My pediatrician sent me to another gastro doctor to see about a nuclear transit test. After listening to us, and all our "expert" take on the situation, he asked us to define "Encopresis". We did, and included everything we have been told by the medical community and what we have researched on the web. Then he told us we were wrong. This VERY experienced doctor challenged us to look up "encopresis" in ROME II and ROME III (google it). The definitions aren't the same. Then he did what all the other doctors never did - he gave her a digital exam right then. He smiled and simply said "she's impacted." He sent us over to the nearby hospital for a bariatric enema. This is a simple and pain free test that allows an xray to be taken while the fluid is administered. It was over in 15-20 minutes. We were told to give our daughter 3 mirolax drinks a day until we returned to see the doctor in three days. From the minute she walked out of the hospital her whole demeanor changed. She was happy, and talking non stop. She was back!!!. We then experienced three days with NO ACCIDENTS!! First time in 4 years. When we returned for a follow up the doctor showed us the xray. She was impacted from her ascending colon all the way to the end. And all of this tissue was hyper extended so that the neurotransmitters that normally expand to tell us we have to defecate were no longer able to function. More... |
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| Something else that seems to work to encourage a bowel movement is a warm bath. Maybe a warm "hot water bottle" on the tummy for a while would have the same effect. Don't know why this works or if it would only work for STC. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Thanks for your replies. It's definetly nice to know there is a condition that contributes to the encopresis. My daughter is doing extremely well with her encopresis and I want to remain hopeful that her intestine will continue to repair itself. She hasn't taken any laxitive or very little for the past few months and she has a regular bowel movement each day or at least every second day. Structure is critical to her doing well,and during holidays or when there's less structure, she tends to plug up. And it doesn' take much for her to get backed up. I think she has some feeling, but she still tends to hold her stool...which also results in constipation. My daughter sometimes pees her pants as well, but that is primarily because she gets so focused on what she's doing, and doesn't want to stop doing what she's doing. There's is definetly a behavioural piece my daughter hasn't yet outgrown. I don't get mad anymore, however, primarily because when it happens she acknowledges it and changes herself. And because getting mad doesn't ultimately change her behaviours. My daughter doesn't soil at school at all either. She sometimes does when she's active and playing sports, but nothing like she used to, even a year ago. I think because she's not on the laxitive, she's less likely to soil. My daughter hasn't had a pedeatrican apptointment for several months, as she is currently not constipated, but if her situtaion worsens again, I will schedule an appt and talk to her pediatrican about STC for sure. |
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| Also, I totally agree with not punishing and both kids are now attempting to clean themselves and just get me to "check" after. Of course this is much easier with normal toileting rather than a mess from tailbone to belly button and everywhere inbetween! We always have showers after the initial clean to try and avoid UTI's. Our doc has always said that denial of an accident by the kids is completely understandable and a way of coping for them. Good Luck! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I guess now having a proper name for it I can print out info to give to the teachers and they understand that it is an actual disease and are therefore more sympathetic. As for whether or not the machine is repairing the bowel I understand that some kids now don't need to use the machine at all (I don't know how long that took) however my son who has STC mildly now isn't using the machine at all and we now manage his condition with diet only. With regards to their diet considering that they both have Fructose Malabsorption and STC - I am treating the FM more as an avoidance of Fructose rather than excluding it completely. My son has FM more severely so he still doesn't have juice at all but my daughter has say 1/4 cup once a day. I am peeling all their veges and not giving them things like baked beans or legumes/beans/lentils etc in soups. Only white bread (in small amounts due to the FM) no breads with grains or wholemeal etc. By using the machine they are now doing a normal stool in the toilet each day, which after all is what we're all after! So I don't really care at this stage if my daughter has to use the machine for the rest of her life ie even if it's not actually "reparing" anything. It is non intrusive, can be done whilst she's watching tv or doing homework after school and means they aren't drinking all these various laxatives every day. Has anyone else now read up on STC/neuronal intestinal dysplasia. What do you think? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I have to fly interstate today. So will answer over the weekend. But it is definitely something they are born with and for me I had no idea anything was "wrong" until the ages of 2 - 3 when trying to toilet train. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| ireadlabels....does the interfential machine itself rebuild the nerves and muscles in the colon in order to eliminate the abnormal colon, or does it simply move the stool along in order to keep the colon from plugging?...which eventually will lead to a healthier colon. Were your children born with an abnormal colon, or did something else cause the abnormality? When my daughter was diagnosed with encopresis 5 years ago, the pediatrician said she had a "lazy bowel". No further testing has ever been done on my daughter, I think, because prior to age 3, her bowel movements were "normal". I have been taught that the goal has always been to keep the colon empty so the muscle and nerves can strengthen. Even though my daughter hasn't been officially diagnosed with STC, I believe that her colon nerves and muscles are abnormal...and she has very slow motility...which increases the chances of constipation and decreases propulsion to move the stool. I'm wondering if the overall treatment I've been implementing to keep the bowel cleaned out would change much even if I had an official name (STC) for what I believe she has anyways. So since your children have been diagnosed with STC, has their diet changed alot again? Do they now get to eat foods that they weren't before? Are you implementing strategies to get them to take responsibility if/when they do soil? A psychologist told me NOT to focus on being punitive at all when soiling occurs. At the same time, it still happened and like any other accident that is unintentional (ie. spilling milk), it needs to be cleaned up...ideally by the child, so she learns how to clean it up. My daughter is 9...she is very capable. I do think it is better without laxitives, and I agree with your comment about, if the stools are firmer, there is more feeling. The laxitives often make the stool too runny and it slips right out without the child feeling it. |
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| I mean peel all veges not don't eat all veges - well acutally don't eat legumes, pulses, cabbage etc ie stuff that gives you wind. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Also when trials were first done with this machine it was for 30mins a day 3 times per week but it is now recommended to do it daily. If we miss one day then we have an accident the next day. Some kids become completely cured after using the machine for some time but this hasn't happened for us yet - only been about 7 weeks. Purely from our own experience we have found that a "bulkier" stool is easier for them to "feel" which probably makes sense if they have poor nerve sensation ie making the stool even softer with laxatives is possibly making it even easier to just slip through. Obviously if your child really is constipated with hard, painful stools then they must have the laxatives - also you need to be getting the stool out whether or not it makes a mess - this is just what we have found in conjunction with a proper diagnosis AND using the machine. Our children have been medically diagnosed with STC and with the assistance of the machine we have been able to stop using laxatives. DON'T stop any meds without consulting your doctor. All of this information is purely to give you all another possible reason for your childs soiling. We too have done the counselling, bribing, begging, ignoring and hoping they will grow out of it. We have even been told that our children must have been molested in a toilet. Take care of your child and take care of yourself. Keep looking for the answer. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I don't know how much world wide knowledge is out there but the disease was only 1st diagnosed about 15 years ago. As we can't publish names on here I can't really give you much more info. I would print out whatever you find though and take it with you to the doctor. They must have nuclear transit studies though? The interferential machine is called "Ultima IF 4160" manufactured by www.tenscare.co.uk I purchased ours via the internet for about Aus$400. Prior to all this we were using "movicol-half" which contains Macrogol, Sodium chloride, Sodium bicarbonate and potassium chloride. Before using the interferential they need to have one last "flush-out". Other info: Your GP may say STC is extremely rare, however if affects 1 in 2000 babies which I don't think is all that rare. Just because your child passed meconium doesn't mean they don't have it. Low fibre diet means both soluble and insoluble but you don't have to be super strict - peel apples, all veges, no dried fruits, no brans or fibre supplements and nothing that you can see in a stool ie passionfruit seeds, sweet corn, cucumber seeds etc. Now doesn't all this sound completely the opposite of what we've been told to do! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Thanks.... I will definitely do that.. I live in Texas, do you think docs will know the name (it is a universal name)? I have never heard of it until getting on this message board. BTW- have been doing the MiraLax "thing" on and off for what seems forever... Will look up both topics you suggested. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Both my children have tested positive for Fructuse Malabsorption too. Soft stools and swollen belly is a symptom of STC. Having FM was just an additional problem that they have but NOT the primary cause of the soiling. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My daughter is just five, but this has been and is a total struggle for us. For us, I am just not sure I buy the Miralax route for my daughter. It doesn't help, first of all, and secondly she's always had soft stools and the big belly. We've gone off of gluten, which seemed to help to some degree, but not completely. Have you researched Fructose Malabsorption? For those that have a bad case of it, not only must they avoid certain fruits (mainly stone fruits), all juices, honey, high-fructose corn syrup - but may need to avoid wheat and onions as they contain fructans. This is my next avenue to pursue. Another thing to note, as my husband always tells me when there are multiple problems, the issues are always the hardest to diagnose. So, maybe our children have both this severe IBS and at the same time some sensory issues (like sensory integration disorder) that make it so they don't sense things as easily. Be encouraged and be patient. I speak to myself as much as you. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My daughter was in complete denial too. And still denies she has accident if she ever has one now. All this time we have tried everything anyone has ever suggested (except a damn good flogging) only to find out now that it really is a medical condition that they have absolutely no "mental" control over! We've been told to make them clean up their own mess, wash pants, etc. and now I feel so cruel to have done that. If your child still has "encopresis" after 6 months of good diet, plenty of fluids and laxative treatment, then it is NOT encopresis! Even with my daughter having STC severely she still had excellent weeks (who knows why) which probably confused any possible diagnosis. We have been all over Australia from multiple GP's to multiple paed's to specialist gastro paed's and none of them ever said anything about STC. I only found it after sitting down at the pc and thinking "what is the one thing that I know for certain about her condition?". I typed in "constipation" - instead of encopresis. Up came "constipation no longer stuck". I listened to the podcast and it sounded like the professor had lived with our children for the last 10 years and had done a study on them! There is also a support group in Victoria for kids with incontinence issues - research "nid kids". Please look up STC and tell me what you think. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Wow... reading your post was like you stepped into our world. My 9 (almost 10-year-old daughter) is doing exactly what you described your daughter to have done. She is extremely bright, outgoing and talented. Completely capable of overcoming this but choses not too right now. I completely believe it started as a physical problem and digressed into one of mainly behavior as the years have gone on (we are 7 years into this problem now). It is like she could care less. We go through times (several weeks to even months) where she is going great no accidents or problems and then we have slumps where she just does not want bother with it and goes on herself and leaves it until someone notices. Remarkably, noone besides her father and I have ever approached her about it pr said anything ugly regarding it. So, she has not truly been embarrassed by it yet. We have had the same talks over and over... nothing seems to get through. I just pray that one day that light bulb goes off in her head and she figures out she has to stop. It at least helps me to know other children have had the light bulb go off and have overcome this. I just have this fear of her being a teenager and still having this happen.... | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Slow Transit Constipation is caused by an abnormality in the nerves in the colon. This causes the colon to lose it's propulsion to move the stool along. Faeces is often soft unlike how we would normally think of constipation being a hard stool. It's is common with this that babies don't pass the meconium at birth however both my children passed this almost straight after birth and my daughter has severe STC. This is diagnosed by the child drinking a radioactive substance (only a very tiny amount) and then having a series of xrays over 3 days to time how long it takes for the substance to move through the bowel. The xrays aren't as strong as normal ones and the total radioactivity is the same as having 2 normal xrays. The interferential machine is just like using a "tens" machine - works slightly differently but feels the same. ie tingling sensation. I understand this machine was originally used for people with bladder incontinence but it had the side effect of causing diorrhea. It somehow stimulates the nerves of the colon and causes the stool to move along. My daughter has it on for 30 mins every day. No oral laxatives at all! She is currently clean 6 out of 7 days after 10 years of soiling numerous times every day. The effect of the machine for them both was immediate ie feeling the need to go to the toilet - so much for the theory of stretched muscles etc! www.chronicillness.org.au /invisible/stc_a.htm has a lot of information on this disease. The Professor who saw my children said it's the only disease that you can tell a parent that their child has it and the parents are pleased to find out! Damn Right! Especially when for us the "cure" has been so simple after all this time. This professor at the Melbourne Children's Hosp has done a lot of research into consitipation so even if STC is not what your child has he will be able to help. Please also research "constipation no longer stuck". Hug your child and keep searching for the answer. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Can you tell us more about STC. What does the interferential machine do? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| re my earlier message - forgot to say that if your child does have STC then they need to have a LOW fibre diet! All these years I'd been feeding them prunes, bran etc and this just makes their stomach try to do more work when it doesn't "work" properly in the first place. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Some time ago I talked on here about my children both having encopresis and being diagnosed with Fructose Malabsorption. A low fructose diet worked for a while but eventually the problem returned again even with the diet. In January we took both kids to the Melbourne Childrens Hosp and had them tested for Slow Transit Constipation/Neuronal Intestinal Dysplasia. Nuclear xrays showed that both children have this and they are now using an interferential machine daily with outstanding success. Please research this "constipation no longer stuck" For a podcast from the professor at the childrens hospital. Good luck! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
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