potty training a child with mild CP (and/or a child with Noonan syndrome)

[devon]

My little guy is 32 months old.  He's my 3rd DS, so I've potty trained 2 other boys successfully.

This little guy has a mild case of cerebral palsy, as well as a genetic condition called Noonan Syndrome.

He has absolutely no cognitive delays.  He has some gross motor delays but is a walking, climbing, dancing toddler.  He can't do things like taking off his clothing yet but will try to help.

The Noonan Syndrome makes it so that he has low muscle tone, as well as prone to constipation.

The CP is hemiplagic (right sided) and we originally thought it was hypotonic CP, but are now wondering if it is in fact mild hyPERtonic CP (hidden by the fact that he is low toned due to the Noonan's Syndrome).

He's confounding me with his potty training.  We've done naked 'boot camp' approach for the last 3 days - naked all day except for naptime/bedtime, lots of juice and salty snacks, and staying around at home most of the day.

The first day, he woke up at 6:30a.  Had an accident around 8:30, then nothing.  Took a nap around 12:30 and peed (not surprising and I'm totally fine with him continuing to wear a diaper for nap/bed even when potty trained).  Woke up around 3:00.  Peed in the potty around 5:00.  Went to bed at 6:30.

The second day, more of the same - one accident and one succesfull potty time, plus a wet diaper at nap.

Today, more of the same.  Dry all morning, wearing underpants at church, from 7:00 till 12:00.  Had an accident while at store (but also wearing clothes/underpants) at 12:00.  Went down for a nap around 1, woke up around 4 with wet diaper.  Stayed dry from 4-7p.

I can't get how he can hold his pee for SO long but cannot pee in the potty easily.  We're plying him with LOTS of drinks so you'd think he would be going more, either accidents or on the potty.  We're taking him often and he's asking to go but he's not able to pee.

Could this be related somehow to the CP or Noonan's?  Our other boys had more accidents but also were able to pee in the potty somewhat regularly.  He's not having tons of accidents at all, but also not going hardly at all for the amount of liquid he is intaking. 

TIA!

Devon

[mamarhu]

Are you sure he is ready to use the toilet? It sounds like he either doesn't sense a full bladder/bowel, or does not have the muscular control to hold or release on cue. I know this isn't what you hoped to hear, but I would drop the whole subject for now, and revisit it in 6-12 months. As a foster parent, I have potty-trained many kids with various special needs. For me, it never worked to  try to push the issue too hard. When he is a little older, maybe you and he will be able to talk frankly about what it feels like to "need to go" and how to use which muscles. That sounds pretty abstract to do with a not yet 3 year old. I would think urine/bowel control totally could be complicated by the CP (I have some experience there, none at all with Noonan's).

Good luck and be patient, Mama. There is plenty of time. Hugs.

[KCMichigan]

Originally Posted by mamarhu 

Are you sure he is ready to use the toilet? It sounds like he either doesn't sense a full bladder/bowel, or does not have the muscular control to hold or release on cue. I know this isn't what you hoped to hear, but I would drop the whole subject for now, and revisit it in 6-12 months. As a foster parent, I have potty-trained many kids with various special needs. For me, it never worked to  try to push the issue too hard. When he is a little older, maybe you and he will be able to talk frankly about what it feels like to "need to go" and how to use which muscles. That sounds pretty abstract to do with a not yet 3 year old. I would think urine/bowel control totally could be complicated by the CP (I have some experience there, none at all with Noonan's).

Good luck and be patient, Mama. There is plenty of time. Hugs.

I agree. Not quite three is young yet.

Both my DDs have/had mild CP and other preemie issues (dont have any experience w/ Noonans). One PT just shy of age 4 and the other is not yet PT due to bowel/bladder complications(preemie).

We revisited it every 4-6 months from age 2.5- now. At a month shy of 4, for one DD she went from no success to totally success (day/night). Somehow she had trouble sensing when she had to go due to the CP, it was not until she was older did it just work out.  She, too, could hold it FOREVER. Dr said her bladder tone was low so she was able to hold a lot of urine for a long time before sensing it at all! It just took some time to coordinate when/how/what for her.

Dr say sometimes it takes longer for that system to mature w/ CP. Just a thought!

[Kellym9999]

My daughter has Noonan syndrome as well. I will tell you that she could hold her urine for a surprisingly long time. We called her the camel. It took her a while to potty train as compared to my other kids. So I would be patient, it sounds like he is getting the hang of it. It did turn out that Grace (our daughter) had a duplex kidney. This is a very big kidney, so we joked that was why she could hold it so long. Don't think that was the reason,but who knows. Grace is 11 years old now and is doing great. Good luck with potty training your son.

Kelly in Colorado

Mom to Rose 20, Jack 13, Grace 11 ns, Daniel 9, Michael 8, Maggie 6 and foster baby D two months

[devon]

Kelly - I recognize you from the Noonan group - I think we might have met at the conference?

Thanks for all the replies.  We ended up going and kept working with him and overall, it's going great!  He figured out how to let it go and pee on the potty.  It is taking a lot longer overall (for instance, within a week, our other boys picked it right up), but he is still making great progress and I love not having to buy diapers!  He was completely dry today and even went potty at the store!

I'm glad I followed his cues and kept working with him - I probably could have waited until he was older and perhaps he would have PT'd in a week like his brothers, but there is so much pride and achievement in his little face now, and feeling like his 'big brothers' - which is his goal in life :)

[Kellym9999]

Small world huh LOL.  Yes, I am on the list serve and facebook group.  I wonder where the next conference will be.  Grace had such a good time. It was her first conference.

I am glad to hear that potty training is going well.  It took Grace a little while, but she got.  It is nice to be out of diapers.