Update February 2014:

I waited almost a year to share that Maya “spontaneously” developed control of her bladder. As mentioned below Maya started showing signs of wanting to use the toilet at age 2. It wasn’t until age 6, and over a period of a few weeks, that she developed full control of her bladder. Looking back on this process, and the evolution of her success, not a bone in my body believes her ability to maintain control had to do with motivation or lack of understanding etc. Maya knew what she needed to do, her body just wouldn’t do it! The bladder, and muscles that control it, are no different than other muscles in the body affected by CP. Remember muscles are everywhere and it’s not just someone’s trunk, limbs, head and neck that can be affected and difficult to control. Even though it seems simple to look back and say Maya just needed more time, it was still a process for us to determine what may have been complicating or possibly impeding progress in this area. And it’s very possible that it may be more than one issue making bladder and bowel control difficult. Be sure to look below for more information and details of how we felt and what we thought as we navigated trying to toilet train Maya.

Update May 2013-Weinberg CP Center Conference on Urodynamics:

The Weinberg CP Center Conference on May 18, 2013, had a section devoted to urodynamics. In this lecture there were many issues discussed which helped me to better understand the potential problems of urinary incontinence in CP. We will be taking Maya to a specialist for further insight and evaluation. I have done my best to summarize the information provided in that lecture in another section of the website: Urinary Incontinence“. You may also wish to visit another related section of our website:  “Using a Public Restroom”.

Toilet training Maya:

Potty training is an area of development that has been very challenging for us. For the last three years we have had much confusion about the amount of physical control Maya has over her bowel and urinary tract functions. This has caused us a considerable amount of stress and it is certainly an issue that many other parents of children with CP face. We have had to consider so many variables to assess Maya’s readiness or desire to try to use the toilet. In fact, I waited several months before writing this section because there were many questions I had about her potty learning that I wanted to investigate further before commenting here.

One of the materials we read (from Rifton and linked below) offering guidance about toilet training readiness for special needs children suggests that parents don’t start this process until the child is ambulatory. I am not sure if the reasoning relates to the muscles supporting the body appropriately or if it has more to do with the child being able to access the restroom independently. I happened to read this after we had already started this process. Maya had an interest and even excitement about using the toilet at age 2, and we figured there was no harm in seeing how she did with it. She is five now and though we are still working on toileting issues, she has about mastered using the toilet for bowel movements.

Whereas Maya’s father (Blake) has had much anxiety about this subject, I have had fewer concerns. We each attach varying levels of anxiety to different developmental issues so this is familiar territory for us. I figure she will eventually work through this developmental piece to the best of her ability and whatever she cannot manage we will help her cope with in a dignified way. Dad on the other hand worries that other children will tease her if she has accidents or if they see she still uses diapers.

Regardless of our differing points of view, we have shared frustration, disappointment and even anger over Maya’s ebbs and flows in successfully using the bathroom. If it was something beyond her control we did not want to harm her self-esteem further by pressuring her, but the reasons for her difficulty have not always been clear.

As I am writing this I have been participating in a thread on a CP forum related to potty training. It was started by a mom whose post captured many of the issues we have faced and that we have wondered about for the last few years. Her son is only three but just as Maya has had days and even a week with almost no accidents (and this has been the case for several years now), so has this child. I think this is exactly what is so confusing to parents: How can a child be so close to mastering this task and then have an accident a few days later with no idea that they have wet themselves?

Another parent involved in this thread said her son demonstrated an interest in using the bathroom at age three but did not master this developmental piece until he was ten. She eventually put him on a regular schedule for using the bathroom but still had him in disposable pull-ups. She said her and her husband made a point not to get upset when he had an accident. This reduced the stress of navigating this process. Over time he was having fewer accidents and they eventually weaned him off of the pull-ups and gave him less protection. Can you imagine fighting rather than embracing this process for that many years?

We have gone through phases of backing off, rewarding, following a schedule with timers, becoming angry (when we thought she may have gone in her pants deliberately), rewarding again, using cloth diapers (to increase the awareness of having an accident), and even allowing her to be naked at home so that she can feel if she starts to go right away.

After three years, I am not sure that any of these techniques have helped, and I now know that (for the most part) motivation is not the issue we are facing. There are times when Maya has gone to the bathroom on the toilet but not even realized she has relieved herself until I have shown her. Other times, she insists she needs to go but doesn’t. Over time I have learned that she wants to succeed and she takes pride in using the toilet successfully for bowel movements. If she wasn’t having any success, or if it was remote, we wouldn’t continue to pursue this process. Even so, I have come to accept that this pattern may continue indefinitely for her.

To understand the challenges children with CP may face when controlling their bladder I think about what it’s like when the dentist gives me Novocain and I can’t always feel when liquid is coming out of my mouth after having something to drink. The shifts in muscle tone that come with CP make it tough for these children to always know and feel what is happening with their urinary tracts and intestines. What may appear to be laziness or a lack of motivation may just be another CP related challenge.

For now we keep Maya on a regular schedule of trying to use the bathroom while she is at school and before and after certain activities (out of convenience since she will often ask to be changed if she has an accident). Her caregiver recently started rewarding her since she has had more days where she has been successful staying dry the entire school day. We know it takes effort on her part to think about using the bathroom in addition to managing all of the other challenges associated with her motor control. We have also learned that punishing her by appearing disappointed or angry, or taking privileges away hurts her and this process more. We tried this approach and primarily increased her anxiety and made her afraid of having an accident. If we gained anything, it was that Maya understood that we were taking this issue very seriously and if any part of her was motivated to please us this gave her the opportunity to do so. Perhaps this approach was a necessary stepping- stone for determining what was going on but it was certainly hard for all of us.

I suggest working with your developmental pediatrician (or regular pediatrician) to determine when it is appropriate to begin to work with your child on using the toilet. Our developmental pediatrician said it is important to make sure there are no issues with her urinary tract and/or kidneys since this can obviously affect the child’s ability to be successful through the process of potty training.

As with other areas of development, bring your patience before embarking on this journey and approach it as an experiment where you are learning more about your child in the most non-judgmental manner possible. We have learned to be consistent when we are trying a particular approach, and we are learning to now remove any personal attachment for accomplishing this process within a certain period of time or at all.

Here are some common issues and questions we and other parents have faced:

How do I know if my child is ready to begin trying to use the toilet?

Is there an underlying medical issue that is preventing my child from being successful in using the bathroom?

Constipation (and related issues such as giving Miralax and/or lots of fiber etc.) often makes Maya less successful in managing her bladder functions and often makes it more difficult for her to control her bowel function as well.

Apparently (several parents reported this on a CP forum as well) ability to master bowel function does not always mean that child will be able to master bladder function just as well.

Very often we find that it takes Maya longer to release her bladder. This has been frustrating and difficult for me especially when we are outside of our home and I am balancing her on the toilet while squatting. It’s better now that she is older, but she definitely takes longer to get started then what is typical.

Is there a medication she is taking that is making it harder for her to control her bathroom functions?

If she can hold her urine all night and even ask to go the bathroom, why can’t she do it during the day?

Why is she able to successfully use the toilet for a week and then has difficulty with controlling her bladder and bowels the next week?

Does she not care about having accidents because we change her right away? What if we didn’t?

Why does she have more difficulty controlling her bladder toward the end of the day?

Most of the time she can tell us right away if she has had an accident in her diaper. Why can’t she tell us at the beginning of the accident and let us take her to the bathroom?

Does her positioning and comfort on the toilet help her successfully relieve herself?

Will peer pressure make her more successful?

How do we gain more understanding about whether this is a motivational problem?

If she can often use the toilet when we put her on there how come she cannot tell us more often when she has to go?

Why does she have to urinate more often than most children?

Maya often says she has to go right away at difficult times and after she has been asked if she need to go and given the opportunity to try (before a plane takes off, before it lands, when we are in the car etc.). She doesn’t always go when I make arrangements for her during these times. Will it harm her progress if I tell her to go in her diaper if she can’t hold it?

Some insight from a Nurse Practitioner:

I spoke with Nurse Practitioner Susan Demetrides who works in a CP clinic offering comprehensive care the pediatric CP population. Part of her job involves helping families to assess readiness for potty training. Ms. Demetrides was kind enough to provide some of her personal insight in this area. ***Please consult with your child’s doctors and medical professionals for your unique and individual situation. The following information is for educational purposes only and is not being presented as medical advice. 

First, I assess every child individually.  Toilet training is more complex than most people think.  As you probably know, the child needs to be emotionally and physically ready.

If a child is acting like a 2 year old they likely aren’t ready.  Many children with physical disabilities impacting the nervous system are not ready until after 5 Years. Most children should be at a cognitive level of 3 years (with or without CP before toilet traning should seriously be considered).  There are some children who are ready before then, but unless it is the child really initiating, not the parent, then earlier toilet training often fails.

From a physical perspective, the child needs good trunk support and foot support to even feel comfortable sitting on a toilet.  If positioning is not adequately addressed, the child will be very uncomfortable. Therapists can be very helpful with input regarding positioning.

The most important thing that I have found, has been managing constipation.  A child who has consistently soft stools will have an easier time developing bowel control.  Many parents stop using something like Miralax when they see loose stools too early.  What they are most likely seeing is overflow constipation.  When the stool softener is stopped, the cycle starts again.  It is very important that stool says soft, as if a child develops hard stool, they may associate pain with having a bowel movement. This can result in stool withholding.  I use a picture guide for parents to show me their child’s stool consistency and I would say at least 80 % of the time there is frank constipation.  The rest of the time there is variability. I generally stay away from fiber supplements in young children unless they take adequate fluids.  Taking fiber supplements without fluid can lead to constipation. Fruit-eze  is a natural fiber (fruit) that some children will accept.

I believe that the concept of neurogenic bladder is underestimated in children with cerebral palsy. If you have been working with your child on bladder training for 6 months and they are still having trouble initiating, I usually have parent do bladder tracking sheets and get a renal/bladder ultrasound pre and post void.  This will tell me that the anatomy is fine, there is no hydronephrosis or swelling of the kidneys, and she is able to empty her bladder.  If the child has urinary tract infections, further testing like VCUG and urodynamic studies might be considered.

If your pediatrician thinks that your child has voiding dysfunction, biofeedback (with games) can be helpful in learning coordination. Children usually need to be at developmental level of 6 or 7 yrs to be accepted in a biofeedback program. You could check with a local pediatric urologist to see if this is available in your area.

But again make sure constipation is addressed as it will negatively impact bladder functioning.

Re meds: Medication can effect bladder functioning.  I would check with your pharmacist or doctor about your child’s medications and side effects.

It is normal to have accidents at first.  The most important thing is to get the child comfortable with using the toilet and not giving negative attention to accidents.  Some kids do ok with a pad in their underwear if they have a little leaking.  Because toilet training can take a few months start when the home environment is calm and there are no new changes coming up.

Susan Demetrides, CRNP

Resources

Article on Toilet Training and Multiple Disabilities

Is your child ready?

Here is a wonderful app called Pepi Play for Iphones, Ipads, and Androids that helps your child learn about using the bathroom along with washing her/himself, cleaning clothes and taking a shower. It is quite graphic (lots of real life noises).

Constipation: We have found that constipation often interferes with Maya’s ability to control and sense what is happening with her urinary tract. We started using Fruiteze for constipation with great success. We heard about it from a therapist who said several parents of children with CP were using it successfully for constipation. It does not contain medication, nor herbs, but it is important to consult with your child’s doctor/s to ensure that it is appropriate for your child to incorporate into his/her diet. We tried many regimens (Miralax, fiber, dietary adjustments etc.) with minimal success in regulating Maya’s bowel habits, and this has worked the best. Maya has a bit of an aversion to the taste so we spread it on foods she likes or blend it into a smoothie. *It’s important to check with your child’s doctor/s to ensure their are no underlying medical issues that need to be addressed and may be contributing to your child’s difficulty managing bowel and/or bladder function. 

Just for toddlers: 

Baby Bjorn Potty Chair

Boon Potty Bench

Travel Potty by Cool Gear

More products for children and up:

NEW! 1-12-2015-Review of Rifton’s HTS (replaces the Blue Wave Toileting System)

Our favorite new piece of equipment is…the Rifton HTS!

This is how a piece of equipment should be built!! How often have you heard me say that (hint..almost never). I cannot say enough positive things about how much relief and comfort this flexible use personal hygiene chair has offered our family. Truthfully, I am shocked. I am more often disappointed by our equipment purchases even after intense research and trial, and wonder why products have not been more thoughtfully designed.

Honestly, after several months of use of the HTS I am hard pressed to find the smallest thing wrong with it! Ok, maybe the price point is problematic especially for families who have Medicaid as their only insurance (this would likely not be an option). However, to me this is money well spent and even better if you can justify it to insurance for it’s flexible use (shower, toilet support, bath seat). If you fundraise, I wouldn’t hesitate to throw this into the mix as a possible goal. It minimizes transfers and has been a back saver for us. Best of all Maya is more comfortable in this chair than anything else we have ever used to address her support needs related to hygiene. The other night we even started using it in her bedroom. This was after several years of carrying Maya to the bathroom in the middle of the night because we felt funny about having a toilet chair in her room. We thankfully have gotten over that issue. I ordered the pan accessory and it was easily switched out with the leak guard we use when the chair is rolled over the toilet.

So the highlights are…

1. It’s a rolling shower chair with optional tilt-n-space
2. It can be used as a bath chair-accessory needed
3. It’s a toileting chair that even rolls over our toddler toilet and doesn’t leak with the new guard they created (the old Blue Wave always leaked for us).
4. Maya is sooo comfortable
5. It can be rolled into and out of Maya’s room for nighttime use with the pan accessory.
6. Multiple support options
7. Soft/supportive material that is easy to clean
8. Carry bag and frame (portability kit) available for travel

Rifton Blue Wave Toileting System

Comparison between the old Rifton Blue Wave toileting system and the new Rifton HTS (Hygiene & Toileting System) written directly on the CP Daily Facebook page by Rifton. 

“The Rifton HTS can be placed farther back on the toilet than the Blue Wave. If the Rifton HTS is mounted on a wheeled base, the base can be positioned farther back over the toilet than the old Blue Wave system. This assures that there is no leakage between the adaptive toilet seat and the toilet itself. The new Rifton HTS offers much easier adjustability of the seat depth and seat height. It also has a base with a tilt-in-space option, great for showering (tilted backward) or sit-to-stand transfers (tilted forward). On the old Blue Wave the footrest did not flip up; on the new Rifton HTS it does, plus it is also sturdy enough to be used as a step for transfer. There are four base options that the Rifton HTS can be mounted on, in addition to two types of mounting bars to mount the HTS onto the toilet. There are also two optional accessory bases that can be purchased in addition to one of the primary bases or mounting bars: the tub base which fits in most standard-size tubs, and the portability base which is an easily collapsible frame for temporary use during travel. The portability base comes in a carry-bag which the seat, back and armrests also fit into.”

“The new HTS now offers a butterfly harness, hip guides, a padded abductor and other optional accessories. The mesh backrest of the old Blue Wave system is replaced by optional, removable seat and back padding for easier cleaning and greater comfort. One seat pad option has an opening toward the back to enable hygiene care while the user is seated. In addition, we have a newly designed “splash guard” deflector that maximizes protection. It was designed particularly for boys but it can be used for girls as well if the parent/therapist/caregiver feels it will address a need. The old Blue Wave toileting system did not have a specific headrest while the new Rifton HTS does: a detachable headrest is an optional accessory on the Rifton HTS. The old Blue Wave had a very small anterior support tray; on the new Rifton HTS the anterior tray is padded and much larger. We also heard from some users with low muscle tone that they had trouble with the armrests of the old Blue Wave system where their arms would slide off the armrest toward the back of the chair. To address this, the armrests on the new Rifton HTS are now positioned so that it is unlikely for the child’s arms to slip between the armrests and the backrest, and even more unlikely if the new lateral supports are used. The new lateral supports are independently adjustable vertically and horizontally, similar to the laterals on the Rifton Activity Chair. Additionally, there are other new optional accessories available with the Rifton HTS to keep the user’s feet correctly positioned on the footboard.”

“Check it out and get more information on specific accessories and features here:http://www.rifton.com/…/bathin…/hygiene-toileting-system (Be sure to click on the Features and the Accessories tabs). Please contact us at 800.571.8198 if you have questions about anything we haven’t mentioned here.”

Aquanaut-We have not used this but I would like to know if you have. Please tell us what you think: cpdailyliving@gmail.com.

Leckey Easy Seat Potty Trainer-We haven’t used this one but we have used something similar that is no longer made. It happens to be Maya’s favorite but not mine since I have to clean out the tray. She is most comfortable having her feet on the ground when using the toilet.

Special Tomato Potty Seats (elongated and round available)-great for travel

*A toilet aid that has been designed but not produced that I am very excited about for use outside of the home. The designer will update us with further developments and is currently working on bringing is product to market.

Custom made cloth diaper pull ups with snaps on both sides-Especially helpful when regular diapers and pull-up were not working due to spasticity issues which caused the areas of wetness to be in non-traditional places. Also, cloth diaper pull-ups for helping children feel and look more like they are wearing underwear. All of the people we have purchased our custom diapers from are no longer making them. We do however prefer the Trimsie Trainers so if you know how to sew you may wish to look into them. *We haven’t tried these yet  but  this company offers an adjustable trainer that can be used up to 50 lbs: Sprout Change Training Pants. There are some other companies that are now offering larger sizes and adjustable cloth diapers for older children and a few are listed in the following blog. One of them is Snap EZ and they offer cloth diapers that offer more absorbency than most trainers since you can stuff them with an insert.

If you wish to purse cloth diapering you may wish to purchase a wet/dry bag. I really like this mom’s products and she has worked with me to custom-make bags that fit the back of Maya’s wheelchair. I find them to be more then the more expensive and popular bags on the market for cloth diapering. I like using it even if we are not using our cloth diapers because I can store extra clothes and diapers in it as well as placing soiled/wet clothing in the “wet” section of the bag: She is on facebook, and Hyena Cart.

Here is a small article on cloth diapering and special needs.

Here is a fact vs fiction on cloth diapering.

Cloth 101, and one more cloth 101 resource that discusses types of cloth diapers 

Squishy Tushy (love the name) offers inexpensive ($10.oo at the time I wrote this) online cloth diapering 101 class.

If you are using disposable pull-ups I highly encourage you to use the ones with velcro on both sides. It’s much easier to be able to use a pull-up or diaper that allows you to put it on and take it off without having to remove your child’s clothes and shoes if he/she has an accident.