Encopresis/megacolon | Autism PDD

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My son is  only 6 but I wanted to post because he went through this.  Aquired megacolon.  It took about a year I think.  He is on a daily probiotic called culturelle.  He still tries to withhold and we have to give him miralax when he does.  He is still not potty trained but will sit on the potty.

Has he had metabolic testing?  Yeast?

My son will sometimes hold it in until he goes to sleep also.  Before he got impacted he had no problem pooping.  His poop problems started a few months after the mmr shot.  He has diarrhea for three months.

I'm looking for parents that can help me, that have older children that went through this when their kids were younger.

You all kid me about being the "queen of poop" (LOL) ...

But I am trying to look forward to the time when this will no longer be a problem.

It was almost exactly a year ago that I realized my child was withholding.  His pediatrician and I tried adding fiber and laxatives to no avail.  It got to the point in December of 2006 that he was able to withhold even by using an enema.  It was at that point I realized there was a much bigger problem going on. I took him to a GI and was told that he had stretched his colon to a point it could get no larger.  He had no feeling, could not control his bowels, and needed to be on a regimine of daily laxatives to keep things loose until his colon began to shrink.

The doctor told me this problem could take 2 to 3 years to fix, but he should regain some feeling within 6 months.

His fear of sitting on the potty is absolutely overwhelming.  He will not sit ... he freaks out.  He will still pee on the potty, but will not sit.  He does not care that he leaks and wears pullups.

I've actually stopped using laxatives, and his poop is still liquid, still happening mostly at night when he sleeps.  I'm starting to thing a possible food allergy?  But his GI did test him for any medical problems ... negative.

I'm taking him back in tomorrow for a followup to see how his colon is now and see if it has shrunk.

Back to my question ... has anyone gone through this hell and seen it through and had success?  What kind of behavior modification did you need to do to get your child over the fear of sitting on the potty?

Hugs (from a regular member ... no longer a mod ... LOL!)

 

zayzer ... he's been tested for so many things ... but I don't honestly know if metabolic or yeast was part of those tests. 

He was completely potty trained over a year ago, then went away for visitation for the summer with his father and came back withholding.  I don't know what happened there ... if he was punished for an accident ... his father and I do not talk.  But that is when all the problems started.  It's been over a year now and he is still not over it.

I'm taking him to the GI in the morning, so if you have any suggestions I should tell the doc to test him for, please enlighten me!

 

My son went through a period of withholding and laxatives as a 2-3 year old, but nothing as serious as you're going through.  Just wanted to say I sympathize! 

Hope more people will have advice for you.

Food allergies would be a good thing to check for. Celiacs disease.  Yeast.  Bowel infections, parasites. Has he had endoscopy(I think that is what it's called). 

The timing of the onset of this with the visitation with his father is very suspicious.  He very well could have been punished for an accident and started withholding in response.  I would ask him what to do about that just incase.  But that does not explaine why he still has diarrhea since you stopped the laxative.  Maybe he picked up some bacteria while there. 

Good luck tomorrow.  I know this is hard on you both.  From that video you posted of him I can see there is something quite amazing about him.  He's a beautiful child!

Just checking in on NYMommy to see how things went today.  I hope you get some answers.Hi NYMommy , I could have written your post. It is exactly what my son was like at the age of 5, he is now 12. We sought help through a child psychiatrist. The toilet phobia was the worst thing we have gone through so far. We ended up medicating out child with risperdal, it worked wonders for the toilet phobia, we also made a cocktail of prune juice, apricot juice, apple juice, and had to potty train all over again at the age of 5. The risperdal made it possible to get him on the toilet and the juices helped with constipation, it does take years to get the colon back to a normal size, but is possible. We also started sitting him on the toilet three times a day just in case he needed to go, but did not realize it and rewards were given  for just sitting on toilet even if he did not go. I must tell you that with our son it would not have been possible without the use of medication for anxiety, phobias. This is a terrible thing to go through. I would talk to a child psychiatrist  as soon as possible. Laxatives did not work for my child either. I will be thinking of you, and hope things improve soon. This is hell. My guy has problems too - but the Miralax & Metamucil wafers have worked great! Hang in there & good luck (I think most of our kids have gut & bathroom issues)

We just got back.  Doctor took an Xray to check for impaction as his colon is still stretched but he is concerned about the "leaking".

He's supposed to call me back in a bit and let me know if the Xray showed anything, but I have a feeling it won't.

Next step is a colonscopy!  A colonoscopy for a 5 year old!  I SO do NOT want him to have to go through this.

 

I just read your message.   I feel terrible for you to have to go through this.

You are in my thoughts.  I hope you get some answers.

My ds went through a period at 3.5 and we ended up with x-rays and a
laxative program. It was not as serious as your ds sounded.
One thing that helped my son get over his fear was that we made a ittle
song about going poo and what happens when you go poo and sing that
to him a lot. Now I would call it a social story in song form since my ds
(like many asd kids) seemed to understand and remember language
better when it was sung. Back than my ds was not diagnosed so we just
called it his potty song.

Adam still has this problem.  I can't help with the fear of the toliet though.  Recently we have had him on Milk of Magnesia.  The doctor told me he may have to be on it for months.  He has been on for two months.  It seems that he goes regularly when he takes it, but withholds when we try to stop.  We have tried a sticker chart to get him to at least sit on the potty and try and go everyday.  He insisits he doesn't have to go.  We had some success switching from the MOM to Benefiber after he was going regularly, but then he for some reason didn't care about the chart and wasn't trying anymore.  So, now we are back to the MOM.  IT has been 2 weeks and still no regular poop. 

I just realized, I haven't given you much hope.  Sorry, But I just wanted to let you know you are not alone    

I had never heard of get up and go cookies before.  In fact, the first time I read Donny's Mom's post, I thought "go cookies" was a euphemism for "go poop".  LOL.

Here's a recipe, for anyone who's curious.

http://www.hospitalreport.ca/projects/QI_projects/IC5_Docs/I C5_Cookies.pdf

My 10 year old still soils almost every day, and he'll happily sit in it forever if
we let him. If someone else produces a smell though... garlic breath even ...
we won't hear the end of it!
I understand that he has little sensation, and not much warning when his
bowels open, I understand that there are those medical issues behind the
accidents. But I don't understand the refusal to get clean when asked. I
wouldn't mind so much if we could just skip the fighting about washing, it
wouldn't be a big deal.I don't know if this will help, or it's something you've tried, but:

I used to support a man with autism, who also had megacolon from years
of withholding. There've been a few other people with megacolon I've
supported over the years, including a woman with Rett Syndrome right
now, as it's a common problem in the developmentally disabled
population, but I think the first man I mention is probably the most
similar to your kiddo in this area.

Anyway, we had a "bowel protocol" for this gentleman. It included being
given lactulose every day (a prescription stool softener), fruitlax every
day, get up and go cookies regularly, and also being on a suppository
schedule. Every day 3 without a bowel movement (which was always the
case, he never went without the suppository), we would give him a plain
glycerin suppository. We would then run him a nice warm bubble bath, as
that was relaxing for him. He'd then have a long soak in the tub, and
wind up, 90% of the time, having a BM in the tub. A bit messy, but easier
to clean than in his pants, and beat the heck out of having him impacted!

The other folks I've supported with megacolon have also had prescribed
laxatives, either lactulose or Docusate Sodium (it's a capusle), along with
either an oral fleet or microlax if they hadn't gone within a certain
number of days. They all eat fruitlax and get up and go cookies.

My little foster son also withholds, and, I am pretty sure has a lazy bowel.
I'm waiting on a nutritionist/dietician consult on his behalf, and for the
doctor to develop a bowel protocol. He's gotten impacted three times in
the last few weeks, and basically it's a constant monitoring o fhim to
make sure things are moving right now (he's not toilet trained at all).
What works for him is lots of fluids, orange juice, and plenty of oils. I just
made a pot of fruitlax tonight, to see if it helps.

FTR, fruitlax is super easy to make, and most kids/people like it. You
take equal parts prunes, raisins, and dates, just cover them with an acidic
juice (cranberry works nice, I used an orange/mango juice tonight). Cook
on med-high until it starts to break down. Keep adding juice to keep it
moist and from sticking, and turn it down to simmer. Keep simmering it
until it's turned into a goopy, mushy muck, lol. Like jam. Let it cool, and
stick it in the fridge. You can add cinnamon and/or cloves while you're
cooking it if you like. It stays good in the fridge for a couple weeks. A
few tablespoons a day keeps most people regular. It's healthy but high in
calories.

If you ever want some tips on healing the gut and addressing yeast
naturally, feel free to PM me - it's made a world of difference to my boys.

Best of luck with your little guy!NNMommyof3... I wish I had more insight/advice for you as to what clicked for Quinn that he started using the toilet for #2 this past June. I wish I knew what made it all click for me when I was 8 years old.

Your last post reminded me of how Quinn was grossed out by poop (even his own) when he was about Nick's age. He told the Dr. at the clinic that we went to that "poop is gross and I do not want to get any on my hands". The doc gave him a bag of disposable rubber gloves to use. They were big on his little hands but they did help.
Maybe be Nick's afraid of of it and or grossed out by it.

My kid is so darn complex ... I don't understand him either with this.  If he was grossed out, why doesn't he care when he goes in his pull-up?  I have to push him to get upstairs and change him because he obviously smells, but he stands quietly while I clean him up.

that's what i couldn't understand about Quinn...he would go into another room and go in his pull-ups...he didn't want to touch it or see it but would sit in it all day if I let him.momof139355.7546296296

Well, just heard from the doctor.

He's impacted.  I've got to triple the laxative dosage for 3 days, double it for 3 days ... and go back next Friday.

 

You'd think that the impaction would make him uncomfortable, but kids with autism are unpredictable that way.  Some of you might be interested in this study which shows that kids with autism can have more severe constipation than their symptoms suggest:

Constipation With Acquired Megarectum in Children With Autism

Nadeem Afzal, MRCPCH*, Simon Murch, PhD*, Kumran Thirrupathy, MBBS*, Leslie Berger, FRCR

* Centre for Pediatric Gastroenterology
Department of Radiology, Royal Free Hospital, Hampstead, London, United Kingdom

Objective. Recent evidence suggests that autistic children may have significant gastrointestinal symptoms. Although constipation occurs in 2% to 5% of healthy children, its clinical diagnosis is often difficult in children with behavioral disorders. We thus aimed to assess the prevalence of fecal loading in autistic children with gastrointestinal symptoms and to identify possible predictors of constipation.

Methods. We studied abdominal radiographs of 103 autistic children (87 boys) who were referred for gastroenterological assessment, in comparison with 29 control radiographs from children who were referred to the emergency department, most with abdominal pain. Radiographs were scored independently, in blinded manner, by 4 pediatric gastroenterologists and a radiologist. The severity of constipation was determined using a validated index. Details of stool habit, abdominal pain, dietary history, and laxative use were obtained from case notes.

Results. The incidence of constipation in the control subjects with abdominal pain was higher than reported for normal children. Despite this, moderate or severe constipation was more frequent in the autistic group than in the control subjects (36% vs 10%). Analysis of rectosigmoid loading showed more striking differences (54.4% of autistic children had moderate/severe loading or acquired megarectum compared with 24.1% of control subjects). Multivariate regression analysis showed consumption of milk to be the strongest predictor of constipation in the autistic group, whereas stool frequency, gluten consumption, soiling, and abdominal pain were not predictive of constipation.

Conclusions. Constipation is a frequent finding in children with gastrointestinal symptoms and autism, particularly in the rectosigmoid colon, often with acquired megarectum. The absence of any correlation between the clinical history and the degree of fecal impaction in autistic children confirms the importance of an abdominal radiograph in the assessment of their degree of constipation.

Source:  http://pediatrics.aappublications.org/cgi/content/abstract/1 12/4/939 

tzoya or anyone else ... where do I go about finding a DAN! doc?

This topic on our forum has some links about finding a DAN doctor.

http://www.autism-pdd.net/forum/forum_posts.asp?TID=18129&am p;KW=DAN+doctor+find

*** New York ***

Ronald Hoffman, M.D.
40 E. 30th St.
New York, NY 10016
ph: 212-779-1744
fax: 212-779-0891

Scott Theirl, D.C.
www.functionalrestoration.com
20 E. 35th St., Ste. 1A
New York, NY 10016
ph: 212-889-4156
fax: 212-889-2905

Rashmi Gulati, M.D.
31 East 28 Street, 6th Floor
New York, NY 10016
ph: 212-794-1520
fax: 212-794-8800

Leo Galland, M.D.
133 E. 73rd Street
New York, NY 10021
ph: 212-772-3077
fax: 212-794-0170

Christina Hift, M.D.
985 Fifth Ave.
New York, NY 10021
ph: 212-988-9011
fax: 914-591-8119

Barry Dublin, MD
75 West End Ave.
New York City, NY 10023
ph: 718-336-3648

Raphael Kellman, MD
304 West 90th St., Spt 4F
New York, NY 10024
ph: 646-675-0785

Morton Teich, M.D.
930 Park Avenue
New York, NY 10028
ph: 212-988-1821
fax: 212-288-9289

Laura I. Mezei, MHA
Blessed Birches Herbal Healing / website: www.blessedbirches.com
Upper East Side of Manhattan
New York, NY 10028
ph: 1-212-879-8292

Judith Chinitz, M.S.
39 Annandale Dr.
Chappaqua , NY 10514
ph: 914-244-3646
fax: 914-244-3646

Christina M. Hift, M.D., F.A.A.P.
See Dr. Hift`s listing in New York, NY for further information
18 Ashford Ave.
Dobbs Ferry, NY 10522
ph: 212-988-9011

Seth D. Pearl, DC, CCN, CNS
Optimal Health & Development Center
141 S. Central Ave., Ste. 305
Hartsdale, NY 10530
ph: 914-428-8004
fax: 914-428-8003

Giuseppina B. Feingold, M.D.
410 Route 6
Mahopac, NY 10541
ph: 845-208-3624
fax: 845-208-3626

Stephen Cowan, M.D.
14 Smith Ave.
Mt. Kisco, NY 10549
ph: 914-864-1976
fax: 914-864-1967

Geri Brewster, R.D., M.P.H., C.D.N.
Center for Health & Healing
39 Smith Ave.
Mt. Kisco, NY 10549
ph: 914-643-8960
fax: 914-244-1103

Renee Simon, MS, CNS
15 Gilbert Street
South Salem, NY 10590
ph: 914-763-9107
fax: 914-763-9104

Joseph S. Wojcik M.D.
525 Bronsville Rd., Ste. 1-G
Bronxville, NY 10708-1132
ph: 914-793-6161

Susan Varsames Young, M.Ed.
Holistic Learning Center
575 White Plains Rd.
Eastchester, NY 10709
ph: 914-793-9100
fax: 914-793-3988

Alan Dattner, M.D.
17 Rodman Oval
New Rochelle, NY 10805
ph: 914-637-0908
fax: 914-636-2503

Jeffrey C. Kopelson M.D.
2 Executive Blvd.
Suite 202
Suffern, NY 10901
ph: 845-368-4700
fax: 845-368-4727

Michael B. Schachter, M.D., C.N.S.
Schachter Center for Complementary Medicine
2 Executive Blvd., Ste. 202
Suffern, NY 10901
ph: 845-368-4700
fax: 845-368-4727

Jay Lombard, M.D.
Brain Behavior Center
42 Bard St.
Nyack, NY 10960
ph: 845-348-4731
fax: 845-348-9005

Geeta Bhattacharya M.D.
New York Medical Group, P.C.
153 Pierre Pont St.
Brooklyn, NY 11201
ph: 718-826-4300
fax: 718-826-4386

Marjorie Ordene, M.D.
2515 Ave. M
Brooklyn, NY 11210
ph: 718-258-7882
fax: 718-258-0262

Christopher Calapai, DO
1900 Hempstead Tpke., Ste. 503
East Meadow, NY 11554
ph: 516-794-0404
fax: 516-794-0332

Mitchell Kurk, M.D.
Lawrence Family Medical Practice, P.C.
310 Broadway
Lawrence, NY 11559
ph: 516-239-5540
fax: 516-371-2919

Richard Seibert, DC
1991 Merrick Ave.
Merrick, NY 11566
ph: 516-867-8585
fax: 616-867-1505

Brian P. Quinn, Ph.D
215 E. Main St.
Suite 207
Huntington, NY 11743
ph: 516-385-7933

Lila Blum, M.S.W.
400 Jericho Turnpike
Jericho, NY 11753
ph: 516-433-1720
fax: 516-433-1720

Lawrence Palevsky, M.D.
220 Fort Salonga Rd., Rte. 25A, Ste. 101
Northport, NY 11768
ph: 631-262-8505
fax: 631-754-2909

Alan Sherr, D.C.
220 Ft. Salonga Rd.
Northport, NY 11768
ph: 631-262-8505
fax: 631-754-2909

Michael Elice, M.D.
www.AutismNY.com
77 Froehlich Farms Blvd.
Woodbury, NY 11797
ph: 516-921-3456

Allan Goldblatt, PA-C
www.AutismNY.com
77 Froehlich Farm Blvd.
Woodbury, NY 11797
ph: 516-921-3456
fax: 516-364-0144

Marvin Boris, M.D.
Allergy and Immunology (www.AutismNY.com)
77 Froelich Farm Blvd.
Woodbury, NY 11797
ph: 516-921-3456
fax: 516-364-1844

Sidney M. Baker, M.D.
71 Ferry Rd.
Sag Harbor, NY 11963
ph: 631-725-9548
fax: 631-725-9549

Arlene Nock, M.D.
PO Box 740
320 Ruhle Rd. South
Round Lake, NY 12151
ph: 518-899-6500
fax: 518-899-2009

Rosemarie Roughton, R.N., N.D.
Alternative Answers for Natural Healing
22 Genessee Ave.
Lake Katrine, NY 12449
ph: 845-336-7526

Steven Bock, M.D.
108 Montgomery St.
Rhinebeck, NY 12572
ph: 845-876-7082
fax: 845-876-4615

Kenneth Bock, M.D.
www.rhinebeckhealth.com
108 Montgomery St.
Rhinebeck, NY 12572
ph: 845-876-7082
fax: 845-876-4615

Michael Compain, M.D.
Rhinebeck Health Center
108 Montgomery St.
Rhinebeck, NY 12572
ph: 845-876-7082
fax: 845-876-4615

Sherry Rogers, M.D.
2800 W. Genesee Street
Syracuse, NY 13219
ph: 315-488-2856

Kalpana Patel, M.D.
65 Wehrle Dr.
Buffalo, NY 14225
ph: 716-833-2213, 716-837-1320
fax: 716-833-2244

Paul Cutler, M.D.
652 Elmwood Ave.
Niagara Falls, NY 14301
ph: 716-284-5140

Paul Cutler, M.D.
1081 Long Pond Rd.
Rochester, NY 14626
ph: 716-284-5140

NY -- My heart goes out to both of you.  I rarely recommend the DAN! protocol, but one segment of the autistic population that that seems to work for are kids with gut issues.  I am NOT saying to go against what the GI doc says, but to add what the DAN! doc says. If the DAN! doc wants to overrule the GI doc, don't do it.  But many of the diets do seem to work with kids who have gut issues. Has your son been tested for celiac disease and also for lactose intolerance?  Mainstream doctors can certainly treat these issues, too.  Anti-anxiety meds might help.  ALL of us have issues pooping if we're anxious about it.  I believe the colonoscopy will be done with your boy asleep.  At least that's a comfort.  Of course, all this attention paid to his behind is going to make him MORE anxious, not less. I'd definitely take him to a child psychiatrist who specializes in autism to see if medication (even short term) can help with the anxiety, etc.  (((HUGS)))

I've been through this with Quinn. He was terrified to sit on the toilet until he was a little over 5 years old. We went to the Pains and Incontinence program at Childrens Hospital here in Boston. We started with a sticker chart to get him to sit on the toilet for a few minutes at first along with Miralax. I tried prizes. I tried telling him that he could have some the money that I was spending Pull-ups to buy a toy.

I don't want to discourage you or anyone going through this, but he just started going in the toilet 3 months ago. I wasn't doing anything special or different that I had done before. it must have been the time for it to click for him. I still have to make sure that he goes atleast every other day. He's good about it now, he calls me into the bathroom to show me that he's gone. I have had to tell him a few times that if doesn't go he can't watch Transformers, but that is only if it's day 3 and he hasn't gone. then all of a sudden he goes.

As a child i suffered with this and didn't finally get it until I was almost 8 years old. My docs then thought it had to do with the fact that I lost my dad when I was 3 yrs old, but i wonder if I would have had this problem anyway.

momof1 ... THANK YOU for posting to me ... I need someone to tell me with a realistic plan of what I am looking ahead to.  The fact that your child is 10 and is finally going at least gives me a true blue look at my future, and that is exactly what I need.

I love my son to pieces ... I will change him and clean him up and do what I have to do as long as it takes.  Rewards do not work with him, as there is just no connection to star charts for him.  I cannot negotiate with him ... he does not have any abstract comprehension whatsoever. 

He also does not seem to care if he poops and smells, although he knows when he has to pee and does continue to use the potty for that, which is a blessing. 

I just worry that this issue is going to keep him from future inclusion in an NT classroom, which is, of course, the obvious goal for all our kids.

He is 5 1/2 and still in pull-ups, and while it is odd to others now, once he is 7 or 8, it can only get worse ... I am somewhat comforted by the fact that he doesn't seem to have a clue that it isn't normal.

I love him so much ... I just want his life to be as normal as possible.

 

A colonoscopy was suggested for my son at one point, but his issues pale in comparison to your sons.  I decided to have him tested for EVERYTHING.  Turns out he had huge yeast and bacterial problems.  He also showed an allergy to milk (blood test, urine AND skin test).  He's on a dairy free diet and a prescription probiotic and antifungal medication.  Things were pretty horrid as his body adjusted, but he's doing much better in the poop department.  Good luck to you.Sorry to hear he is impacted again.  Did the Dr. suggest any other test?

It could be both?  Going through what he has is bound to cause some anxiety.

When my son was impacted he did not want to go pee for fear he would have to poo at the same time.  So we put him in the bath every  2 hours because somehow the water is very calming and relaxing for him. 

I am going through something similiar with Nikolas. I think this started last spring when he started school here and wasn't drinking enough and got constipated, and then it hurt, so he held it in cause it hurt. Also deathly afraid of the toilet cause now he links it with pain. We use the daily laxative now, I'm afraid we may be headed to where you are if something doesn't change and soon. I catch him in his room with his legs crossed fighting it back, even with the laxative. I've started giving him a suppository cause he can't hold that in, at least not yet.  I have told him and told him I don't care if you go in your pants just go. But of course he doesn't really understand. I do have a BIL who is 50 now that has megacolon, he is MR. MIL and I talk about this cause we are going through this with Nikolas. i have no idea how old he was when he was able to indepently use the toliet, but I do know that he still has issues in this department, although they are manageable. She has to remind him to go though or he won't and its only every 3-4 days but he is going. I think some of it probably is psychological. I was also talking to Andrew's aide the other day about Andrew's fear of the toilet, I know its cause he sees Nikolas screaming over the toilet so he is afraid of it too, and she said her son was a premie, 2.5 lbs when he was born, and at age 5 he was only going once a month and ended up in the hospital with impaction. I do not know how old he is now or how that ended or how old he was when he was able to use the toilet, I might ask her next week. She did not say that he had autism, just that he was a premie, but maybe she didn't want to share that.

I've sent an e-mail off to our local autism advocacy group to see if they can help me find someone that is a reputable physician.

He hasn't gone yet today ... even after all the medication.  I'm letting him sleep on the couch and keeping an eye on him, and waiting for it ...

He's been going pretty heavily nearly every night, so if he is impacted, I cannot even imagine what I may be in for when it finally does happen.  Fun Fun Fun!

Oh ... how weird is this ... he had to go "pee" earlier today, so I brought him upstairs.  One of my other boys had gone #2 and had forgotten to flush.  When he looked in the potty and saw the poo there, he screamed and ran away!  After I flushed, he would then go pee.

Is this telling of something more psychological then diet/medical?

 

 

Thanks!  I'll check into the one place on the list that is (somewhat) close ... 1 1/2 hours ..

I love small town living, but  have to travel so far for all doctor appointments.  Even our dentist is an hour away.  Our primary pediatrician is local at least, thank goodness!

Oh NY Mommy...I'm sorry to hear about your ongoing situation...I know I haven't posted much lately, and I've hardly had the time to come and read, but I saw your topic today and read through...

I know about loving your child so much and cleaning them up after.  Andrew does not have a megacolon, but he will not poop in the potty and this has gone on about the same length of time as your son.  We had made progress to the point of pooping near or in the bathroom or even in the bath tub last winter, but after he had influenza, he lost almost all potty skills.  It took a long time to get back to pee-pee in the potty.  Anyway, I do not have the answers, but I wanted to share and lend my support!

In terms of DAN! docs, an MD or DO after the name and board certification in Peds, Family Medicine, Internal Medicine (ideally Med-Peds), Emergency Medicine, Allergy/Immunology (with experience in Peds) all work.  "Board Eligible" also works as these are often docs who recently completed a residency or fellowship in a specialty.  Also, docs who are in the process of recertifying and may have had to take the exam twice...

Our DAN! doc is Dr.Neubrander in Edison, NJ, although I am planning at some point to switch to someone nearby as I'm still in VA Beach.

After seeing Jenny McCarthy on Oprah and Larry King, I bought her book which I plan to read ASAP.  I also decided that an attempt at a GFCF diet is going to be my next goal.  I got "Special Diets For Special Kids" Books I and II by Lisa lewis...I had them in my Amazon Shopping Cart for months!  I'm gathering information first and then will make a plan.  Andrew's self limiting diet is basically PB&J, cereal, bananas, chips, teddy grams, goldfish, and candy (Neccos and Smarties at the moment), with Soy milk and diluted 100% juice as his drinks.  He is on supplements ordered by Dr.Neubrander's office and M-B12 shots nightly.

Hang in there, and Blessings!  PM me at any time...  (For those who are newer, I am a family doc turned SAHM)

Thank you for posting the fruitlax recipe donny's mom. I've been wanting to try something like that with Quinn.

Our son (7) with autism has just started going poo in the potty. I can completely understand your frustration. But one of my typival 11 yr olds has been batling encopresis for a couple of years now. The specialist that I took him to a few weeks ago told me to give him two capfuls of miralax a day for 10 days, then cut back to 1 capful a day. Now I am to call him and tell him how he is doing. It took a couple of days to get him "cleaned out"-he was also very impacted. But he is doing much better now. He is still on one capful a day along with fiber tablets.

Best of luck to you!  

NYMommy - take care when looking for a DAN! doctor.  Make sure that you get someone who is an actual doctor  (no, you don't actually have to be a doctor to be a DAN! doctor) and someone who is board certified (in something at least somewhat relevent for treating children).  Check with the state board to ensure that this person doesn't have an ethics problems - for example, the guy down here in Raleigh had his license suspended for treating non-existent yeast infections with IV peroxide and nearly killing a woman.  You need to be careful with these guys.  DAN!, for whatever reason, has no quality control or oversight of their program, and while I'm sure that many, if not the majority, of DAN! doctors are skilled, ethical professionals, there are quacks and hacks in their midst (for example, the DAN! that killed the little boy with IV chelation due to using the wrong kind of EDTA is still a DAN! in good standing) - there's lots of money to be made off of us, and not everyone hanging the DAN! shingle is doing it for the right reasons.

Anyway, your state board probably has a website where you can check the board certifications and any problems with license suspensions and stuff.  Also, I would do what tzoya suggested and not go against the mainstream doc's judgement - have them collaborate as much as possible and get a second opinion for any treatments that you are considering.

My $ .02.

You might also check with the local Autism Society of America chapter.  DEFINITELY check any physician's credentials. I agree that an actual MEDICAL doctor is called for in this case, but many medical doctors are DAN! doctors.  I would approach the DAN! thing with lots of caution because it's an area that is ripe for quacks, but not all DAN! doctors are quacks.  The truth is, you might be able to get as much help from an allergist, especially one who is familiar with ASD kids.  Has your son been tested for celiac disease or lactose intolerance?  Those things are commonly tested for by non-DAN! doctors, too.Some of them have MD after their name  some don't. Please do be careful and good luck whatever you decide to do.  He was tested for celiac ... he had a whole blood workup and everything came back a-ok.  My 6 year old son has been dealing with encopresis for 3 years now.  He potty trained fine with peeing but always was nervous pooping on the potty.  Then an incident where he flushed too much toilet paper down causing an overflow of the toilet and my reaction to it caused him to be so afraid of pooping.  He would scream and kick if we tried to get him on the potty after that.  I noticed lots of messy undies and talked to my doctor.  He put him on Glycolax and it seemed to help some but we got too confident and took him off thinking he was fine.  The problem was he was not over his fear.  He is just now starting to feel comfortable with flushing and sitting.  My question was what started first, the fear or the constipation.  He visited a pediatric gastric specialist and we did the rectal biopsy and blood work for some other problems like anemia, absorption problems, and wheat allergies.  all came back normal.  I pressed the issue when the solution was more laxatives.  I had him tested by a neuropsychologist and she found him to have high anxiety and that his motor skills were very delayed.  It answered a lot.  He never used utensils, didn't like to color, didn't like sports or throwing balls, he had difficulty with banlance and riding a bike, and he was so messy with eating, plus he didn't even have a dominant hand at age 5 when he was tested.  It answered a lot of questions about his physical body and we started him in Occupational therapy to strengthen this muscles.  This summer we had a motility test and MRI done.  the motility test showed his colon is very weak and the doctor said he sees that when the large muscles are weak so is the colon.  So the solution, more laxatives.  I don't like that, but what choice to we have.  I have really been considering seeing an allergist to see if it something he is eating that could have started all of this.  He had some bowel issues when we began him on solids as an infant but it was unexplained.  Seriously this is the biggest parenting issue we have faced with our 3 childeren.  It is discouraging and with him starting Kindergarten this fall I was scared.  So far he has done a good job of staying clean and his teacher was compassionate about it all.  Our pediatrician said he may deal with this forever but when he gets more mature he may control it better with fear of his peers reaction.  i had the same problem when i was 8 i got really really sick to where anything i'd eat would come back up and out of my mouth i was in and out of the hospital to fix the problem, i'm doing better than i did when i was 8 but i still have to take meds for it from time to time

tie dye lady --

That is so shocking that the doctor wanted to remove your daughter's colon!!! 

As far as girls on the spectrum goes, here's my collection of online articles on the subject.  You might find something helpful there.

http://www.autism-pdd.net/forum/forum_posts.asp?TID=29714&am p;KW=girls

Otherwise, contact your local autism society chapter and see if they can recommend a neurologist or other doctor that is good at identifying high-functioning autism or, better yet, autism in girls.

To prepare for a visit to a new diagnostician or an evaluation through the school, you might want to complete some symptom checklists.  Here are a few to choose from.

Diagnostic checklists - Asperger

http://www.udel.edu/bkirby/asperger/aspergerscaleAttwood.htm l - Australian Scale for Asperger Syndrome, for primary school children

http://www.autismresearchcentre.com/tests/cast_test.asp - Childhood Asperger Syndrome Test (CAST), the screening test developed for the UK.  Available in English, German, Spanish, French, Norwegian, Swedish, Persian, Slovakian and Slovenian. 

Diagnostic checklists from the book "Parenting Your Asperger Child":

http://printables.familyeducation.com/forms-and-charts/skill -builder/51750.html - Part 1, Difficulty with Reciprocal Social Interactions

http://printables.familyeducation.com/forms-and-charts/skill -builder/51751.html - Part 2, Impairments in Language Skills

http://printables.familyeducation.com/forms-and-charts/skill -builder/51755.html - Part 3, Sensory Sensitivities

http://printables.familyeducation.com/forms-and-charts/skill -builder/51752.html - Part 4, Narrow range of interests and insistence on set routines  

http://printables.familyeducation.com/forms-and-charts/skill -builder/51754.html - Part 5 - Cognitive Issues (including mind-blindness) 

 

 

My daughter is 10 yr old.  She was born perfect, apgar 9, with her eyes wide open and holding her head up in the delivery room.  She is incredably beautiful & intelligent.  As a toddler, she never potty trained well for BMs.  She always had (encoprersis)accidents 1-3x week but sometimes went on the toilet.  We were advised by her Dr. and books on potty training that at ages 4, 5 ,& 6  accidents are normal - don't worry.  When she turned 7  (1st time parents) we realized that this was NOT normal.  We took her to the Dr.  who told us absurd things like she was drinking too much water and not eating enough fruits and veggies.  We minitored her diet closely but it didn't help.  We thought it was psychological because she had always been an extremely reistant child.  We made a "accident chart".  If she didn't have one she would be greatly rewarded.  If she had one she would be punished.  I realize now this was the worst thing we could have done.  It made her stop having accidents, but we didn't know that she probably had completely stopped going for about 3 weeks straight, causing megacolon.  We still didn't understand what had happened and the encopreisis continued with a vengence.

At age 8 the school informed us that they thought she had ADD.  We started seeing a nuerologist who agreed.  I thought GREAT, now we knew why she doesn't go on the toilet - she has ADD!  However, the nuerologist insisted that ADD does not cause accidents and referred me to gastroenterologist 

She than saw a gastroenterologist who put her on enough laxatives and stool softners to put down an elephant for about 8 months.  It was compeltely debilitating.. everytime she stood up, it would just pour out of her.  The Dr. had immotility testing done (extremely invasive) on her colon and said her colon did not contract until 15 mg. of laxitives were given (3x the amount for an adult) and that she physically could not have a BM without it.

I knew he was wrong!!  So many things were a contridiction on the test results.  For example, she would often go in her sleep.  She never smells it after she goes, and would sit in it all day unless someone told her to go clean up.  This doctor told us she was lying that she knew when she went and knew when she had to go.  He also said I was a non-compliant parent; when i had bent over backwards to follow his treatment plan.  I knew my daughter was not lying.  She would pray to God at night to please make her be able to go on the toilet.  This doctor finally told me that since her colon didn't work properly, it should be removed.  A cecostomy!  This was not acceptable to me.  We don't even know what's wrong with  her!  He said that there were three children scheduled to have thier colons removed that week.  Why would anyone do that???   We stopped going to that doctor.  We stopped the laxative treatment.  We started a high insoluable fiber diet.  Sometimes she can go a month without laxatives.  Sometimes she needs them every three days.  I knew that Dr. was wrong but he just wouldn't listen to me.

She has also seen a  psychiatrist,  behavioral psychologist, had physical therapy of pelvic floor muscles, and of course still sees her nueroligist.  She has not had a BM on the toilet for over two years.  When she has an accident we have a good system and it is working well.  We keep a bucket of bleach and water in the bathroom.  She puts the soiled underware in the bucket (for me to clean later - she has refused to wear pull ups since she was two) she cleans herself with baby wipes or takes a shower if need.  She is able to do this unassisted.  She never has had an accident at school. 

I have had another child, a boy,  who is now 6.  I knew when he was two that there was something wrong.  Intially, has was also diagnosed with ADHD, but then that was changed Autism NOS. 

My neurolgist says he doesn't know if my daughter has highly functioning autism or not.  He says she has ADD symptoms and she is treated with medication for these.  That doesn't mean she has ADD, only means the medicine works well for her.  He still does not acknowledge that encopresis is a symptom of Autism, but i am working on him and keep insisting.   It is uncommon for girls to have this.  Girls have differrent symptoms than boys.  It has been 6 years since we started and we are still looking for a diagnosis (other than chronic constipation and ADD).  

I was really excited when I read about the 11 yr old boy in Australia.  i feel like this confirms how i feel.   The only difference is that he has a diagnosis of autism and my child does not.  Anyone who has any advise for me,  i would love to hear it.   

One more thing - pull up's are really bad for the enviroment.  even if you use underware and throw it out, it is more biodegradable than a pull up. underware and pull ups cost the same amount of money.  When you take laxatives, unfortunately it becomes really runny and you might occasionally need a pull up.  With a healthy diet, BMs should not be all that messy.  Pull ups are also hard to find and cost more in larger sizes.  if I knew then what i know now about cleaning underware I would have used cloth diapers on both kids.  live and learn.  


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