Severe Constipation and Autism

Do you believe in foreshadowing?

Or some weird twisted version of karma?

When I was 20 I nannied for a 3 year old boy. The family was very wealthy and very, very bizarre. The little boy was strange to say the least. He was very cute but he had violent undertones. And he did really bizarre things. It was a long summer. Looking back I can now safely say that he was autistic. I just didn’t know it. And his parents refused to see it. The would put me in really awkward situations that I know now shouldn’t happen with an autistic child.

Anyway, he held his poop. I didn’t even know holding your poop was a thing. He held it for attention…which he clearly did not get from his parents. At one point he held his poop so badly it forced his intestines up into his lungs. And he struggled to breathe. We would spend hours in the bathroom working on pooping. His reward…1 jelly bean. So odd.

As you can imagine, this was a lot for a 20 year old girl. The summer ended and I literally ran away. Like literally. I never contacted that family again.

So when Cooper started having constipation problems I knew I was in for trouble. I knew what holding poop looked like. And how painful it can be for a child.

I took a few videos of Cooper last night in the tub. He was having a severe bout of constipation. I took these videos because there has to be other kiddos out there that are struggling like this. And parents who can’t get help for it.

I can’t even put into words the feeling of helplessness that I felt.

I don’t believe Miralax is the answer to this problem.

I know I am always talking about what autism looks like. Well, here is the real deal. This is what autism looks like to me. Let me rephrase that. This is what nonverbal, apraxic, sensory processing disorder, autism looks like to me.

These are the moments that crush moms and dads. I couldn’t even function after this hour was over. Hell, I’m still thinking about it. These are the moments that scare kids. And confuse everyone. And leave you so lost and exhausted you don’t know where to turn. These are the moments so stressful that you don’t know if your marriage or family will survive. You feel like you are failing.

And you don’t know what the F to do. You are the mom but you don’t even know how to help your baby. Talk about being paralyzed by fear.

Doctors don’t see these moments. People and family don’t see these moments. This is the real deal.

You want to know why I cry all of the time. And I spend nights awake worrying about the future. It’s this. This exact moment.

Cooper holds his poop. There is no fancy way of saying that. He holds it. He holds is so badly that even a daily dose of a laxative like Miralax won’t work. His poop eventually turns to stone. It gets so hard that I can’t break it with my fingers. That’s gross. I know that. But I am his mom. And that’s what mom’s do.

This is a video of my child begging for help.

And begging for an enema. A nonverbal, autistic 5 year old, begging for an enema. He shouldn’t even know what an enema is.

What you don’t see in this video is me holding his body in the fetal position for over an hour. I sat hunched over the bathtub forcing his legs up to his chest so he couldn’t hold is legs stiff as a board and clench his butt.

You also don’t see him beating his head with a clenched fist in pain.

And you don’t see me fighting with his dad over whose fault this was. Even though it was no ones fault.

And you don’t see a 2 year old brother crying next to the bathtub because his brother is in pain.

You see Cooper crying. I talked him through this for over an hour. At moments he even started to fall asleep. My arms got to the point where they turned to jello.

I watched his butt tear and bleed. Yup. I just had to keep holding him. Waiting for him to finally give in and go.

This is what autism looks like to me.

This is the side you won’t see on a television special. And you probably won’t read about in a book. AND, if you ever have to describe it to someone…they won’t believe you.

This is autism.

Cooper passed out immediately after he finally went to the bathroom. I spent the rest of the evening thinking about doing this for the next 5 years. Or 10 years. Is this my future? I just can’t imagine.

The fear is real my friends.

So, if you have any helpful ideas feel free to send them my way. We’ve tried SO MANY things…ranging from removing dairy, to removing gluten, probiotics, vitamins, chiropractors, etc. There has to be something else we can try though. Thoughts?

 



 

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27 thoughts on “Severe Constipation and Autism

  1. I’m so sorry, this must be heartbreaking. Piper gets constipated too but not this badly. I use pure high quality liquid Magnesium. Not powder or chewables. The high potency liquid and it softens stool in a more natural way than a laxative would. Too much of this stuff and it will turn the poop to liquid so you get the idea. Sending love your way my friend.

  2. My heart just broke for you and super coop while watching those videos. You’re right that medical people don’t see this kind of thing, and that’s a big stumbling block between patients and the professionals who are attempting to help them.

    Autism is incredibly isolating, but I SEE you…you and your sweet boy are not invisible, no matter how much it *feels* like you’re all alone.

  3. Here in the UK, children like Cooper can be referred to the Continence Service. They help children who have toileting issues. Do you have anything similar that you could access? Sorry I couldn’t be of anymore help. I know of other families who have been through similar things. It was heartbreaking watching Cooper in so much pain x

  4. Hi, I found you on Instagram and then found your blog. I find your courage to discuss your challenges inspiring. I have a son with moderate to severe autism who is 5 years old. My focus is on helping with constipation through diet. Although I haven’t read your entire blog, I know you have tried a lot. I hope you look into the diet again. My son is casein and gluten free and border line grain free. Through the diet, I realized his biggest issue is casein so I am a bit more lenient with gluten. Like you, I tried the GF/CF diet at about 2 years old with a focus on gluten instead of casein and never saw results so I stopped. This time around I followed through completely with the diet. I will be approaching 1 year on the diet (you might not see anything for about 6 months) and can see now how much it works. You need to play around with the diet to find the right combination. My focus this time around was to become familiar with ingredients that produce inflammation. I avoid anything with tapioca, corn, soy, and casein (which is almost everything). I took it a step further and eliminated all sugars that were not in a natural form such as fructose, dextrose, sucrose and most importantly maltodextrin. There is no juice in the house and milk is limited to when guests come over (we all gave up milk as I made this a family effort). The focus now is on proteins and a select number of fruits (due to the natural sugar content). I found that when I added a digestive aid, things got a lot better and I was able to reintroduce some foods back into the diet. I also do a high quality probiotic and biotin combination. The key is to find the right timing to give them as some foods ruin the strain. I also think you need to start with a higher dose in the beginning due to the severity of the constipation. I would try a digestive aid at the beginning of every meal, and the probiotic after the meal (there is no taste and it blends well in any liquid). This may lead to a better body response to the magnesium as you start to clean his system up. Also no more antibiotics as they wipe out the good bacteria in the intestines. If you must do antibiotics then you will need to increase the probiotic. The diet takes time but it is so rewarding. Your right, this sucks and it’s not fair but your awesome and this is super Cooper!

  5. My non verbal 7 year old was having severe constipation and after potty training also started holding his no 2s. He still insists on a pull up to do no 2 and I let him because I don’t want what you described to happen anymore. We are making progress to go on the potty. But we started using Restore. From the Restore4life website. It took about a month of use starting out with 1/4 a tsp 3 Xs a day to a 1/2 tsp 3 Xs a day and it’s been like a miracle for us. I haven’t seen a hard stool ever since. He has been on it for about 3 months now and hopefully we will continue to see good results. My son was also a preemie and has many medical emergency etc. so he is on a gluten free diet but that in itself want enough.

  6. Not useful ideas, but a big big hug to poor boy and his mom and family….
    I cried becouse it’s true, this is what really autism looks like and others don’t see…

  7. Aww, I am sooo sorry you and Cooper experience this. 😦 I’m all about using natural things, so here’s my suggestions: 1) Keep doing the probiotics, you may actually want to increase the dose, and/or make sure it has multiple strains. I use Springboard Floraboost (found on Amazon) for my kiddos and it has done wonders for my older son who had lots of issues with constipation. 2) Add digestive enzymes. You may want to give them with every meal. My son loves the chewable Buddy Bear Digest Tablets (on Amazon). 3) I agree with the above comments about magnesium. Epsom salt baths would be an easy way to help with that, as well as magnesium lotion because the body absorbs magnesium topically much better than internally. However, you can also give it in supplement form, magnesium taken internally will definitely help with digestion. I use the Natural Calm powder you can buy on Amazon. 4) Also, and I think I mentioned this before, put a drop or two of peppermint essential oil, diluted in a carrier oil such as almond, olive or coconut oil and rub in a clockwise motion around the belly button. This will massage the intestines and after doing this for my son, he has a bowel movement about 20-30 minutes later. 5) Increase water intake. 6) Figure out what food is causing issues. Continue experimenting with gluten and dairy free diets and with other foods you suspect may cause problems. No fun, I know, but you’ll be glad you do once you figure it out. We tried gluten and dairy free diets for a few months and didn’t see a difference, but I’m glad we tried it. You could also see if you get an appointment with an allergist for blood testing for allergens. We did this with Kiddo which told us he had a banana intolerance and a beef allergy. Kiddo won’t touch beef anyway, he’s such a picky eater, but now we know to never give him any, haha. Kiddo used to eat bananas every morning with his breakfast, but since eliminating bananas from his diet, his constipation has gotten much better and his bloating and stomach cramps have gone away. Insurance didn’t cover much of this test since it wasn’t “medically necessary”, but it was worth every penny to us to know what foods to watch out for and saved a lot of experimentation with diets. I don’t think I would have ever thought to try eliminating bananas, you know? 😉

    Best of luck and hugs to you and Super Cooper. Keep on loving those precious boys, and love yourself too. You are a good mom, Kate!

  8. i dont know if you still having this issue. i have 4 year old son who has consipation and lots medical issues. ive been reading the non medical austism book and her book so far is amazing. ive added the emeymes and probotic to my son diet less juice . we arent consipated as much we have lot more messes but he has been sleeping better, less austic attackes or epsiodes. hes ezema getting better and hes eating more . we have hsd 2 good weeks at school and at home. it tough being austic mom. your right the life is real.

  9. I know our children aren’t one size fits all. Especially our children. So no guarantees.
    My son is higher functioning and 17, but consitpation has always been a problem. We were up all night not two weeks ago with him in pain. Diet helps, some. This helps too. 1/4 cup baking soda, 1 cup warm water, and a few drops lemon juice. The lemon isn’t necessary but it too helps and, more importantly, it means he’ll drink it. Warning: this may be painful. But if he is in that kind of pain, it’s a means to an end and I have been there. I don’t know if it works on stone hard poop. Sorry. Hope this helps!!

  10. Found your blog today. I’m so grateful that you share your stories because I know I’m not alone.
    My 5 year old has struggled with constipation since birth, and like yours he holds his poop. Weve tried everything. I read a book called “The Unprescription for Autism” and the author talks about using digestive enzymes to help with it. Specifically, it must contain DPP IV (4). We buy one at the Vitamin Shoppe called Gluten Defense and give it to our son twice a day. We mix it in his drink and he doesn’t know it’s there. It has helped alot and it was an alternative to going gluten and casein free since there’s only certain things he will eat. I hope you get some answers and will for you and your sweet boy

  11. Hello, this is an old post, I just ran into it on FB. My son who is not autistic, but has special needs suffered from constipation for years, and Juice Plus was the only thing that really helped him. (its just whole fruits and veggies) Not sure of dietary needs etc, but look into it, it helped us immensely! I sure hope he is doing better. And I also just read your blog post about hope, I really can relate, and your words were right on! Not many special needs moms get into the deep stuff and I just loved that about your story. Thank you. I get it, I really get it. Here is the JP site:
    http://www.juiceplus.com/us/en/buy/chewables/juice-plus–orchard-and-garden-blend-chewables–child-serving

  12. So sorry I only saw this now on my FB but my Autistic was given Duphalax enemas and he stayed on the syrup until he could manage. Duphalax is a natural sugar laxative it is non habit forming and is a sweet tasty syrup.. hope this helps

  13. I am reading this a year later. My heart hurts because I have watched my autistic son struggle with similar severity, but not with constipation…other things. My heart aches. Have you found help?

  14. My daughter had the same issues which eventually resulted in mega rectum. In addition to Miralax our Doctor added a Liquid Senna Stimulant which seems to be helping.

  15. My six year old son Abe struggles with constipation. In October 2015 I took him to see a GI specialist at Rush Hospital in Chicago. It was the best thing we have done. The doctor ordered X-rays to only proved how badly Abe was backed up. The doctor put us on a extensive cleaning that required Abe to be out of school for a few weeks. The cleaning did not get everything out, so the doctor gave us another clean-out plan, and that did not get everything out. So the doctor had Abe admitted and ordered a medical cleaning. Abe had a feeding tube put in (this broke my heart) and was given “goflo” . Abe was in the hospital for about 2 1/2 days. He was released once his X-rays came back showing the entire colon cleaned out. When we got home I gave Abe a crushed up enzyme tablet in his apple juice. The enzymes recommended by a doctor at a natural health store. After 10 mins Abe pooped out a pebble! That poop was so hard it was literately a rock! Abe had that sitting in his intestine, but the size of a soft ball before we had the medical clean out. All that to say…That medical clean out was one of the best things we have done for Abe. It’s not an easy thing to go through, however, it was like hitting rest on his colon. I give my son Culturelle probiotics every night before bed. I also give him coconut water in his apple juice during the day. So far we have seen an amazing improvement with the constipation.

  16. Hi, I’m new to your blog and am so happy that I can relate to someone finally! What worked for my little one was FIBER GUMMIES!! Her poop went from rocks to regular stool. Please give it a try! I will keep you both in my prayers…….xoxoxo

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