Thoughts on how to deal with chronic constipation and mild cerebral palsy

My son is 7-years-old and was diagnosed with mild cerebral palsy and epilepsy when he was 5. He was slightly developmentally delayed but nothing drastic until after he was potty trained and having frequent accidents. After many tests and many doctor visits he was diagnosed with epilepsy and cp. Since being diagnosed it seems to have been a downhill battle. They figured he was having accidents as a result of the seizures. He has silent seizures so it is sometimes hard to know when he has had one. He is on medication for the epilepsy and it seems under control. However, he is still having accidents of both kinds. After being sent to more specialists we found that he is having trouble with chronic constipation and I have been given many different thoughts on this subject. The one doctor is saying that it is because the muscles are not working properly due to the cp and the other is saying they are not related. I am told that the pee accidents are caused from pressure from him being constipated. We are no closer to a solution now than we were 2 years ago. The biggest problem is that now he is in 2nd grade and is having accidents in school. I get phone calls from the school all the time addressing the problem and I am always doing research and visiting doctors. Can anyone give me some advice on this? Is there a specialist out there that we haven't been to that can help? As a mother it kills me to see him having these difficulties. He is the sweetest kid and would do just about anything for anybody and his teachers have nothing but good things to say other than these concerns. He is on the verge of not being able to ride the bus home because of these problems. He has almost an hour bus ride home and often does not make it home without having an accident and the school keeps calling me because of this. Please help me help him!

[nicky1973]

my daughter is also 7 and in year 2 in mainstream school.  she is a spastic quad quite severe.  we also have endured 7 years of chronic constipation.  i have taken her off most of the stuff that was prescribed for her and have stuck with micro-lax enemas only given 1 per week and diluted prune juice. at school she is being time trained on the toilet and is getting quite good so now when they put her on nearly every time she goes.  she is in nappies but that doesnt bother me. it is a constant battle to get her to drink enough fluid but we have got to 2 cups of coridal per day.  try getting him to drink more water or mix with weak cordial, could try benefibre but he has to drink sufficient fluid ,enemas, and PRUNE JUICE (its the best) she was on parachoc but system got used to it so we went to another liquid laxative but she got used to that as well so we stoped it .  prune juice diluted is best.  if he is in pants at school you could try pull ups for school.

hope this helps

nicky1973

[atwitsend2]

Thank you so much for response. Sometimes I feel like I am losing my mind. Until I found this site I have not been able to connect with anyone going through the same issues. My son has been in the hospital for a clean out of the intestines which was not a pleasant experience for either one of us. It was awful watching what he had to go through for that. They were hoping that miralax would keep him going afterwards but that did not work. He is currently on lactulose which sometimes seems to work ok but other times not so well so we too usually have to use the enemas. I am going to try getting him to drink prune juice again and see what happens. I have decided after reading through this site and what others have to say that we are going on a search for a new neurologist. Everything I have read here is the complete opposite of what his neurologist has told us. For example he tells me my son's bowel and bladder problems have nothing to do with his cp. He seems to deal pretty well with his epilepsy but not at all with his cp. Anyway, thanks again. It was helpful just connecting with someone who is dealing with the same things. You and your daughter will be in our prayers.

atwitsend2

[eagle51]

I have mild spastic CP (32 yrs old). I agree with the pullups idea, I think that will help him a lot until he can get it under control. Timing bathroom breaks also helps. Limiting food/drink intake helps a little.

This is a bit embarrassing. I don't know how it is for most people, but from my own personal experiences, I can tell you that when my upper legs tighten up more often and I start to get uncomfortable feeling in my stomach or lower backside or walk a bit stiffer than normal, that is when I know I have to go. I seem to feel it more in my legs and walking quicker than I feel it in my bladder or rear end. If I ignore those feelings and wait until I feel it in my bladder or rear end that I have to go pee or poop, it is already at the point of the "UH-OH" stage and I have to make a bee-line/run for the restroom. For some reason, there seems to be a lack of sensitivity needed to recognize the signs, so alternative methods needed to be found and used and usually they work.

As for the constipation, here are a few tricks I have found that work for me.
1. Have him lay down in bed on his back, feet/lower legs hanging over the side of the bed. Just lay there for a while until the tightness in his abdominals goes away and relaxes a little. A variation is that after the abs relaxes, lift knees up and then lower. Repeat a few times. (stretches and relaxes upper/lower abs)
2. Laying down on the back (floor or bed is fine), stretch out legs parallel to the floor (let ab's rest a little), then bend the knees and lift the knees to his chest (or as far as he can go). Lower legs to floor again. Repeat a couple of times. (stretches and relaxes upper/lower abs)
3. Laying down on back, knees pointing towards ceiling, feet on/near floor, then twist legs/hips to his left side, then return to original position, then to right side, original position again. Repeat a few times. (stretches and relaxes side abs)
4. You sit in chair, he sits on the floor with his back on your lower legs against a pillow. Hold his arms over his head while he sits with his back and stomach upright. Do for a few minutes. (I usually stand and use the upper door jamb for this exercise). (Stretches and relaxes side abs).

These help me when I am constipated and it gets the abdominal muscles working and loosened up enough to go more easily. Fruit juices also help a little but don't give him too much or he will get the runs and that is much more painful to deal with.

Teach your son to try to recognize the signs of when he feels he has to go potty so that he can get a better idea of when he should/needs to go. Teach him to "try to" go to the restroom (even if he doesn't feel the need to) before school, before and after all classes, before the bus (if enough time is allowed), and immediately as soon as he gets home. If he is not in class, he needs to at least go to the restroom and make the effort to try whether or not he thinks that he "might" have to go. Make the bathroom a priority for him in his eyes at all times. If you go to the store, have him use the restroom before leaving home, once you get to the store, before leaving the store, and when you get home. He needs to make the connection between needing to go, wanting to go, when to go and when not to go. And the only way for him to do that is to try to go.

[holly_moline]

I just want to say that as you see in the grocery stores they have organic foods out now. I have had to change my son's diet because of alot of stuff i noticed made him irritable and fussy and many other. If you look up on the internet my mother told me the long words that are on the back of the cans or whatever you will find out that all them are mainly chemicals and hurting our bodies. I know that it is expensive but in your case you will see that won't be constipated or having troubles. Everyone is going organic cause the companies are the ones killing us with what we eat and drink cause of all the **** they put in it. so try that and let me know what you think. I hope everything goes good for but at least try it for a month and they will have more energy and everything else to help.

[hesmysugarbug]

I also have a 7 year old that is having the symptoms you describe with using the bathroom.  We are having the same problems with the school. My son was diagnosed at 2 with CP, Epilepsy, and a Global Cognitive Delay.  At the time he did not even talk.  He now talks very well but is still having problems with his small motor in his left hand due to a brachial plexus injury he had at birth. With the bathroom issue the doctor has never told me he has constipation problems even though I have suggested it.  They just keep saying he is old enough to control it.  My old doctor told me he could not help it because of his cp, but we had to move and this one seems to ignore it because he is not totally disabled with it(no offense meant to those that are :(..)  I am so confused as to what to do.  I have changed doctors and this seeks to be the best where I live.  He has been taken off his seizure drugs because they said he has seizures no more.  Whether that is true or not I cannotsay  because he had absence seizures.  But that is what is neurologist did.  On top of it he battles with agression that one specialist said is because he has a form of Autism.  Another said he does not and that he has Sensory Disorder, and another said that he has them puzzled. I feel like pulling out my hair...He cannot even go outside by himself because he does not remember to look for cars before coming across the street from our park and I am less than 50 feet from it.  So if i can not go out with him he cannot go and that breaks my heart because all the neighborhood kids ask him to come out and he cannot.Okay this was meant to be a comment to you and not a ramble about me.  My heart goes out to you and your son.  I wish you the best and I hope that he has a wonderful year of school and that you can find a way to help him.  I am going to try some of the suggestions you were given and see if they help.  Thank you for posting.  

[Dr San Miguel]

Hi. Children with cerebral palsy can have a variety of bowel and bladder related conditions. Among the prevalent are incontinence, urinary tract infections and constipation. Seizures brought about by cerebral palsy may also cause loss of bladder and bowel control. If a child with CP has normal cognitive function and having difficulty with toilet training with no physiological reasons, other factors like psychological issues (e.g. fear of falling off the toilet and hurt themselves), low fiber and water intake, lack of exercise, gastrointestinal disorders and side effects of medications should be considered. Similarly, accidents may also indicate gait abnormalities due to hip or foot disfigurement that warrant orthopedic evaluation and management. Hope this helps.

[msg152]

I posted this on another conversation, maybe it will help...
I have found something that works very well for us!

All - son has CP as well, is 5, and has dealt with constipation since birth.  We have done miralax, enemas, diet...  About 2 weeks ago I started making smoothies daily with CHIA SEEDS!  It works.  He has pooped every day!

Here is the key - DAILY!
My smoothies - apple juice, frozen strawberries, frozen blueberries, frozen pineapple, sometimes yogurt, sometimes a kiwi and chia seeds.  We put 3 heaping tablespoons in, but are making smoothies for 2-3 people.

When I started I did miralax in a juice during the day and also a smoothie for breakfast.  My goal was no more enemas.  After a few days I eliminated the miralax.  What my doctor has said is that his colon is enlarged due to the constant constipation.  It will take a few months for the colon to return to its normal size.  Right now he can not control his poops, aka, poop in the potty.  So, we are using pull ups for awhile.  But, it is not diarrhea, more like play doh.

I get my chia seeds at Whole Foods.  But, you can get them online and at other health food stores.  I also use black chia seeds.

GOOD LUCK!
Martha