Anyone else have this GI issue with their child with autism?

Discuss getting a diagnosis, educational help & electronic devices and apps for autism.

Moderator: ModeratorBill

luvpiggy
Posts: 105
Joined: Tue Feb 10, 2009 12:59 pm

Anyone else have this GI issue with their child with autism?

Postby luvpiggy » Wed Oct 25, 2017 1:27 pm

Hi,

I know that there are many others who have children that struggle with constipation. My son who has severe autism and non verbal definitely has struggled with constipation his entire life. However, it was not until he was almost a teenager that we had times where he had to be hospitalized from agitation caused by the constipation that we were not sure he had because we didn't know what was normal for him regarding how many bowel movements to have etc. In addition, certain treatments would be hard to do for him and appeared to make him more agitated, so for a few years we basically tried to feed him a healthy enough diet with lots of beans and apples, etc., and we gave him an occasional enema when needed. It seemed to work and he seemed to feel the best ever for two years, and then the bottom fell out when he was 16. After that, we started to try other interventions that made him have at least a daily bm, but he had this underlying constant agitation. We took him to a GI who was basically scared at the results of a marker test that showed pounds of feces sitting at the top of his colon. The GI said we could never allow him to be constipated again because he was afraid our son was at risk for a toxic megacolon. We then pursued an intensive constipation regimen. However, it did not include a high fiber diet since the GI agreed that in our son's case the fiber was bulking up the stool and it was getting caught at the top of his colon. The interventions included 2 doses of daily Miralax, a daily fleets enema, and an occassional Miralax cleanout when needed.

We moved to another part of the country and our son returned to full time school. We noticed that he was holding in his bowels while at school, but he had his enema at home and at least had a daily bowel movement. A few months later, we were shocked when he became agitated and could not sleep and acted as if he were constipated. We gave him a Miralax clean out, and he seemed to run clear fast and be fine. Then the same thing happened the next night. The next morning we took him to an ER and asked if he could have an x ray because it seemed he could have a blockage and stool running around it. They said that his stool burden was mild. We left the ER not knowing what was wrong, were worked into a GI that was rude, and then returned home with our son getting worse. We finally drove to another supposedly "world class" hospital where our son became violent, and the ER immediately found constipation on an exam and x ray. Before he was discharged the physician told us the amount of constipation was definitely painful for our son.

We were just shocked because he was on so much and became constipated. We then were assigned a GI from the hospital thinking that they were the ones that witnessed how difficult it was to keep our son unconstipated. I should have paid attention when she said "We don't really know that constipation causes him agitation." I just looked at her funny and told her that any time he had ever been hospitalized for severe uncontrollable agitation, he was always found to have severe constipation. I don't know why we continued on with her for two years because it was mainly me directing the situation. I think we stayed because the hospital found the constipation when the other hospital had not and I was hoping the GI would prevent another hospitalization.

I didn't mean to direct the situation. What I know about my son is that it is not just constipation that bothers him though it looks like he has way too much stool in him for all that he is on even if it does not always count as constipation. It makes him feel uncomfortable and causes agitation. In addition, having bm's make my son extremely upset and agitated. The best my husband and I knew how to do was make the bm's as comfortable and easy to pass for him as possible. We noticed over the past two years we had to keep going up on the Miralax, do scheduled monthly clean outs, keep the daily enemas, and also we requested the addition of Linzess. That was over a year ago, and our son seemed the most comfortable of his life with bms and just started to do so much better. However, at the end of May, we noticed it stopped having the same affect regarding consistency. Our son got unexpectedly agitated again with us seeking ER treatment. Eventually, the same hospital that found the constipation two years ago said he was not constipated and it was probably from an impacted wisdom tooth. However, their specialized unit that deals with autism thought it was enough to make him uncomfortable and gave a clean out. He was in the hospital a few days after the clean out, and the nurses that were responsible for his treatments wondered if he needed all that he was on such as the enemas because he had so much stool come out of him. The treatment team did an x ray and they said that they were shocked that he already had a moderate stool burden after having two clean outs in a row and with some of the same stool barely moving in him after the second clean out. It was during this time that we realized how much our GI was not on our side. The behavioral unit requested two consultations with GI asking them to increase his Linzess and do more. The GI consulting team was definitely dismissive after the first consult and first x ray saying that everything looked great. It was confusing. After the second x ray, we were told that GI was no longer dismissive. However, the still would not increase any treatments and behind our backs told the hospital unit that he had a lot of stool in him because he was on too much treatment and that our son needed more psychotropic medications not really believing there is a link between his constipation and agitation.

We know that the aggressive treatment is not the cause of the large amount of stool in him because whether he is on treatment or not, x rays always show a large amount of stool in him. If anything at least it is softer instead of pounds of hard feces sitting at the top of his colon. So, our son produces a large amount of stool but then is extremely sensitive and uncomfortable having bowel movements. Right now, I feel that he is beyond hope, and I know that if something is not done to help him, he is going to continue to have an extremely low quality of life. I just didn't know if anyone else on here had a child who struggles so much with their bowels-not just constipation but the entire process of having this bodily function.

Thanks for listening.

luvpiggy

Grandmother
Posts: 59
Joined: Tue Jun 21, 2016 7:47 pm

Re: Anyone else have this GI issue with their child with autism?

Postby Grandmother » Mon Nov 13, 2017 2:26 pm

luvpiggy, hopefully, someone else in your situation will chime in.

Besides reducing fiber, what else are you doing for the input end of his digestive system?  Have you tried the SCD diet, yeast treatment, digestive enzymes, etc.?

luvpiggy
Posts: 105
Joined: Tue Feb 10, 2009 12:59 pm

Re: Anyone else have this GI issue with their child with autism?

Postby luvpiggy » Mon Nov 13, 2017 8:07 pm

Hi,

Thank you. Three years ago when a GI said that he had severe constipation and was afraid he would have to do a colon removal, the GI did not advise me regarding the input. I remember that I had even purchased enzymes, and he said it would not help with constipation. Now, I have recently been reading "The Unprescription" and I see that the author believes that enzymes are extremely important to try first to treat constipation. We are in the process of getting our son into a new GI that serves the autism population and who will also give us some more guidance in trying different treatments such as enzymes. So, no we basically done nothing regarding the input except for low residue, gluten free, and lactose free.

Grandmother
Posts: 59
Joined: Tue Jun 21, 2016 7:47 pm

Re: Anyone else have this GI issue with their child with autism?

Postby Grandmother » Tue Nov 14, 2017 9:58 am

Luvpiggy, my granddaughter had severe and painful constipation at the beginning, which prompted me to respond, but I can't imagine it going on for years.  Now that I think about it, her doctors didn't give any input advice either.

Her nutritionist advised to go completely organic, to eliminate gluten, casein, corn, soy, and all food additives, and to add probiotics and digestive enzymes.  Oh, and no food from a can, give Epsom salt baths, and "green" the house.  This was her standard autism protocol and grandchild's autism not only improved, but this protocol also healed her constipation within weeks.  I don't want to give you false hope since your son has had constipation for so long and every child is different, but you might want to try this protocol.  Give digestive enzymes with every meal and snack.  How awful that a doctor told you not to bother with digestive enzymes.

My daughter continued on to the SCD diet and added cod liver oil, Nystatin, and methyl B12, seeing more improvements with each.  Hopefully your new doctor will be able to guide you as to whether yeast might be a problem, etc.  Here are some links to the SCD diet:
http://www.breakingtheviciouscycle.info ... -problems/
http://www.breakingtheviciouscycle.info ... k-chapter/
http://www.breakingtheviciouscycle.info/legal/listing/

Does your child also have a bloated and distended belly?

luvpiggy
Posts: 105
Joined: Tue Feb 10, 2009 12:59 pm

Re: Anyone else have this GI issue with their child with autism?

Postby luvpiggy » Tue Nov 14, 2017 4:18 pm

Hi,

Thank you so very, very much for responding, and I was leaning towards trying some of the tips you have provided. Today I was reading through my son's GI medical records again, and it just looks like they have never seen a case of constipation this severe where the person is still constipated while having multiple bowel movements on this much intervention and without a more obvious reason being the cause such as Hirschsprung's. I just know it can impact his behavior so much, and yes, I really hope the new GI will still take our son's case after reading his medical records and also will help give us more direction regarding treatments including ones you have such as you have suggested. Regarding the enzymes, he definitely has undigested food in his stools frequently so the enzymes should at least help with that.

Yes, there are certainly times in which my son's stomach is distended and bloated. :(

Thank you so much!

sco_100
Posts: 1
Joined: Tue Nov 04, 2014 5:03 pm

Re: Anyone else have this GI issue with their child with autism?

Postby sco_100 » Wed Nov 15, 2017 1:18 am

My daughter has severe constipation problem too. It impacts behavior and sleep. Some info is here: https://www.tacanow.org/family-resources/the-poop-page/ .
We recently consulted with one of the doctor mentioned in that link. Also planning to do SCD.
You can also search in this forum how other parents treated. Many of them may not be active in the forum now.

luvpiggy
Posts: 105
Joined: Tue Feb 10, 2009 12:59 pm

Re: Anyone else have this GI issue with their child with autism?

Postby luvpiggy » Wed Nov 15, 2017 6:08 pm

Thank you sco....we have visited the link before, and although we cannot get into one of the GI's listed, we are trying to get into one of his colleagues that other parents of TACA in our state recommended. The GI said that he would even do an initial video conference appointment when we had to cancel because our son is too aggressive to travel the drive to the appointment. However, I am scared after reading our son's medical records from our son's current GI that we do not look well as parents. Our son's current GI does not believe that his constipation has ever caused his aggression, and throughout the medical records she will say "Parents believe", even things we do not believe. So, I hope this GI will be understanding. We really did think that we had a good working relationship with our son's current GI and that we were collaborating over treatments. We didn't find out she was so against them and blamed everything on us until recently. :(

The other GI in Long Island doesn't take insurance and does all medical procedures in Houston. We surely cannot make it to Houston. :( We probably could still do the consultation and maybe an in person visit because it is closer, but I really would like for our son to have all necessary tests. He's never been scoped.

Thank you. The TACA website is at least validating. I just hope somehow we can get help from a specialized GI in this area.

Take care!

Grandmother
Posts: 59
Joined: Tue Jun 21, 2016 7:47 pm

Re: Anyone else have this GI issue with their child with autism?

Postby Grandmother » Thu Nov 16, 2017 5:31 am

Luvpiggy -  The constipation alone could be causing your son's behaviors, but since he's on Miralax, it also could be due to the Miralax.  There have been a lot of complaints about it and it's being investigated.  I had read about it a couple of years ago so thought I'd find some links for you.
http://abc7chicago.com/news/update-more ... s/1777380/
http://abc30.com/health/parents-say-ove ... -/1756425/
Doctors have been recommending it off-label to children and for longer than a week.  I haven't even looked up Linzess yet.  Did your child seem to get worse on Miralax? Or after you increased the dosage?

While you're waiting for that special doctor, you might want to try to get an appointment with a nutritionist who treats children with autism.  Insurance should cover it.

Sco - That is so great you found a doctor.  Please share anything you learn and keep us posted as to how she's doing.  Just a tip about SCD, skip the intro diet.  Some have had problems with the lead in bone broth. 

Best wishes to both of you.

luvpiggy
Posts: 105
Joined: Tue Feb 10, 2009 12:59 pm

Re: Anyone else have this GI issue with their child with autism?

Postby luvpiggy » Thu Nov 16, 2017 10:17 am

Grandmother,

Thank you. Yes, we have seen evidence where Miralax can impact our son's behavior. In 2010, we put our son on Miralax, and we did see some information about it causing behavioral issues. In 2011, we ran out of it for a few days, and we noticed our son did better behaviorally so we treated his constipation with just a healthy diet and Fleets enemas when needed. In 2013, he got severely constipated again, and we then found a new GI who treated our son's constipation more seriously. We were trying dietary interventions after that including high fiber, fiber supplements, more Fleets enemas, mag citrate, etc., and the GI was very understanding of our reluctance to use Miralax and did not endorse laxatives either. However, the GI did a marker test on our son, and he said that what he saw shocked him. He said our son had pounds of feces sitting at the top of his colon that would not move, and he believed that if we did not treat his constipation aggressively that he could have to remove our son's colon to prevent a toxic megacolon. Our son did better on a Miralax clean out instead of a Magnesium Citrate clean out which seemed to cause him more pain and work less effectively. Therefore, the GI stated that Miralax was better than the alternative of colon removal. However, we moved to another state for better autism services, and our son got constipated despite the aggressive regimen. Since then, we have had to increase Miralax substantially for the past three years, with not really a lot of help from his current GI who just says that he should not be on so much without any plan to help him really. So he's constipated now sometimes requiring hospitalization on all this intervention, but we should back off, and then what? She just doesn't care and chooses to believe that the constipation doesn't cause him pain and aggression. Her hospital is involved in the research about Miralax and aggression so perhaps she knows something that we do not know, but will not be direct about it. He was hospitalized in her hospital, and she was very hands off when other medical staff said that he was constipated and needed more intervention. So, I have never really wanted my son on this Miralax-just didn't want his colon removed, do not think his previous GI thought that we would have to keep increasing his Miralax this much to provide relief, and yes, I do not think it helps his behavior overall. It's hard to tell because he just hates having bowel movements no matter what, and backing off would provide him with initial relief, but he would quickly become constipated again now and probably become so severely aggressive that he would be back in the hospital. :(

Now, his psychiatrist wants to increase his Risperdal substantially. I told her that although his dosage isn't working, it will cause a bottomless pit appetite in him, increase his intake which will increase his stools and constipation. I'm just a nervous wreck right now and feel paralyzed with how to go forward with helping my son. :( I just want more specific direction for my son's unique case from a physician who knows what they are doing and hope to get that soon.

I do really, really appreciate you responding to my post and helping to get others to respond too. It means a lot.

Grandmother
Posts: 59
Joined: Tue Jun 21, 2016 7:47 pm

Re: Anyone else have this GI issue with their child with autism?

Postby Grandmother » Fri Nov 17, 2017 8:51 am

Luvpiggy, my daughter had a lot of good luck that led her right into biomedical for my grandchild and a lot of support, so I'm paying it forward. And it sounds like you need all the help you can get.

You're in a real dilemma with Miralax.  Perhaps the Miralax controversy may be the reason the doctor seemed to blame things on you, fear of getting sued perhaps.  I wonder why a hospital, where the doctors have recommended it, was chosen to do a study on it.  Seems like the fox guarding the henhouse.

Found out Lizness can cause abdominal pain.  Now I just read that side effects of Risperdal are constipation, aggression, agitation, etc.  Sigh. Are his current doctors keeping track of this and coordinating?

Of course you need a special autism doctor who can medically help your son, but it sounds "iffy" or not happening very soon. So I still suggest you consider a nutritionist who works with these children in the interim, assuming insurance will cover it.  Depending on where you live, you may even find one who will come to your house.  The purpose will be not only to give you tips on helping your son, but also to give you support while you're waiting to see a doctor.  The office of the doctor you're trying to see may be able to give you some names. 

I'll be sending you a private message with a list of "greening" tips.  This will give you something to do that will help your son while you're waiting for that doctor's appointment.  He does not need extra environmental toxins.  While you're waiting, you should also go organic, no one needs to consume glyphosate.  And eliminate food additives, no one needs them either.  Here is a youtube shopping video about Dr. Katherine Reid, a biochemist who cured her child by eliminating free glutamate and started a non-profit.  She explains the gluten/dairy connection with these children and where free glutamate is. 
https://www.youtube.com/watch?v=7jJj9W4uF_4
Read labels carefully since grandchild regressed after accidental ingestion of free glutamate.  If you then decide to go on to the SCD diet, you'll be almost there.

Best wishes.

luvpiggy
Posts: 105
Joined: Tue Feb 10, 2009 12:59 pm

Re: Anyone else have this GI issue with their child with autism?

Postby luvpiggy » Fri Nov 17, 2017 9:50 am

Thank you for all of your help. I really appreciate it.

Grandmother
Posts: 59
Joined: Tue Jun 21, 2016 7:47 pm

Re: Anyone else have this GI issue with their child with autism?

Postby Grandmother » Wed Nov 22, 2017 1:24 pm

Luvpiggy, if your son isn't already taking magnesium, you might want to ask his doctors or a nutritionist about it.  See the posts by ArchitectDad:
https://www.healingwell.com/community/d ... 6&m=472549
While Epsom salt baths are a good way to absorb magnesium, it's possible that your child may need more due to the Miralax.

Another thought is to ask his psychiatrist if there is something else other than Risperdal, especially since it doesn't seem to be helping anyway.  It just seems like your son may be on a medical merry-go-round and that one thing may be causing the other.

And it seems that nothing currently is helping and that no one is even trying to find the cause of his painful constipation, so I hope you get an appointment with a special doctor soon.  Keep us posted.  I care.  And I'm sure all the other readers also care.
 
Best wishes.

luvpiggy
Posts: 105
Joined: Tue Feb 10, 2009 12:59 pm

Re: Anyone else have this GI issue with their child with autism?

Postby luvpiggy » Thu Nov 23, 2017 11:29 am

Thank you. Unfortunately, last Thursday and Friday, he was home sick with what appeared to be a cold with a severe cough and he was extremely self injurious and aggressive so we felt we had to seek emergency treatment. It's a horrible story of what we had to go through to finally get help with him being aggressive, unable to transport, and with two hospitals not seeing him as having an emergency or even being a psychiatric case because his aggression subsided after waiting to seek help when his nightly meds kicked in thinking that would be the safest option. But anyway, he is in the hospital where they are upping his Risperdal but are also treating him for sinusitus and are giving him multiple Miralax clean outs, will add some dulcolax and will try some mineral oil enemas as well. He just keeps a moderate stool burden with the clean outs. There's some improvement in the moderate range, and he is being allowed to eat so I don't know what to think. Is my son "really" constipated and is this really the cause of his struggles lately?

Our appointment with the GI who hopefully understands is on Wednesday via teleconference. So, again, I feel like I don't know if my son is constipated or not. At two ED's that did x rays the report was that even though there was stool throughout, his x rays are "unremarkable". A children's hospital with a medical behavioral unit given the context that he is on so much intervention and still has moderate stool burdens at least say that they think it could be bothering him.

We're being told to look at residential options for him and that it is probably his "hormones" and being a young man now (He'll be 20 in a few weeks) and it is probably just that his autism has gotten worse. I guess that's possible.

Thank you for all of your suggestions and help. I feel like I am losing my son. I am trying not to feel that way, but I just don't know what is wrong with him right now, and I just want the truth and wish I knew what to do to help him and how much of this really is related to GI.

Grandmother
Posts: 59
Joined: Tue Jun 21, 2016 7:47 pm

Re: Anyone else have this GI issue with their child with autism?

Postby Grandmother » Fri Nov 24, 2017 4:32 pm

Luvpiggy, my heart goes out to you.

I think it is very significant that this crisis started with an infection, so keep that in mind for your notes on his medical history.  I'm convinced that these children have a problem with their immune systems, so when something else is going on such as a cold or infection, their immune systems are dealing with that and can't deal with their original problem of an inflamed digestive system, overgrowth of bad bacteria and/or yeast, viruses in their guts, etc., and the "autism" gets worse.  During her recovery, grandchild regressed with every minor cold.  Her immune system couldn't both fight the virus and heal her "autism" at the same time, so the "autism" got worse.

I also know that constipation can cause severe pain.  In your son's case, was it pain from the constipation, or was it fighting the new infection that caused his immune system to be unable to also keep the "autism" in check, or both?

"Modern" medicine only treating the symptoms and/or blaming the patient reminds me of the ulcer treatment fiasco.  Patients were blamed for their lifestyle or genetics instead of "modern" medicine believing the doctor in Australia who discovered ulcers were caused by a bacteria and could be healed by antibiotics.  That went on for about 15 years, with surgeons unnecessarily cutting out pieces of patients and calling this Australian doctor a quack.  I think when enough people flew to Australia and came back healed, too many for the medical establishment in this country to keep claiming that they must have never had ulcers in the first place, the simple antibiotic treatment was finally "discovered" to work instead of being quackery. 

My hope is that someday all doctors work to heal these children instead of just treating symptoms.  I do hope the new doctor offers some real help.  Your child deserves better than what he's been going through.

Best wishes.

luvpiggy
Posts: 105
Joined: Tue Feb 10, 2009 12:59 pm

Re: Anyone else have this GI issue with their child with autism?

Postby luvpiggy » Fri Nov 24, 2017 7:07 pm

Thank you so much for your response. It was very right and very kind of you. I absolutely do feel like the medical profession is in the "dark ages" regarding autism. I just don't want my son to suffer so much anymore. I too am clinging to hope that the new GI will help.


Return to “Autism Support/Education/Technology”