DownSyn Forum

Annieo

I don't often share that John is still in diapers because I don't want new parents to get depressed about what the future holds for their child, but . . . John is still in diapers. This week I decided to do a big potty training push again and have quit half way through day two. I think he may eventually be able to do #2 consistently in the toilet, but he may never be out of diapers or pull-ups. John had a urinary blockage (posterior urethral valves or PUV) that wasn't discovered and removed until he was 5 years old. After my last big potty training push when he couldn't go 30 minutes without wet underwear, we went to the urologist who said there was no anatomical reason why John was leaking urine. I waited six months and tried again this week, but it's the same. He empties or (seems to empty) his bladder at the toilet, I set the timer for 30 minutes and when it goes off and I check him, he's wet. One thing I read today said that up to a third of kids with PUV will experience urinary incontinence. For life? I don't know. How do you potty train a kid who can physically do most of what he needs to do in the toilet but because he has incontinence will always have the protection of a diaper making it really easy to just keep pooping and peeing in the diaper???

Does anyone else have an older child who is not yet potty trained?

_________________

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

Emdad · Posted: August 08 2011, 5:22 PM Post subject:

Yep. Poops in the potty most days, seems to have gotten better at holding the rest in in just the past few weeks. Been a long road. Proud owner of a 14 year old diaper pail - and no, that's not what I call Sam. Rolling Eyes

MatthewsMomsy · Posted: August 10 2011, 1:59 PM Post subject:

Matthew is 8 and not anywhere near potty trained. He knows how to pee on the potty, but he is not cooperative enough to do it. (However, this noncompliance is not limited to the potty.)

_________________
Heather
Matthew 5-21-03 DS, PDD-NOS and Ryan 2-14-01

mellysmom · Posted: August 10 2011, 7:57 PM Post subject:

Melissa is eleven and still not potty trained and I don't think she will be anytime soon. Smile

( That's my "sigh" smile, because what else can I do? LOL ) I don't usually post about what she can and can not do ,because she is so much farther behind than most of the kids with DS. I keep quiet for the same reason you mentioned. I would just hate to discourage other new Moms. Smile

Keep in mind, Melly is also on the Autism Spectrum.

I've been told not to lose hope, that she should be able to use the toilet at some point; that there are kids/adults lower functioning than she is who ARE potty trained. I keep holding onto this.

Hang in there. Don't give up yet.

Praying this won't be permanent for him and that it will simply take time.

Michelle

Michelle

MatthewsMomsy · Posted: August 11 2011, 6:42 AM Post subject:

I get discouraged when I only hear about the kids that are much further ahead. Hiding the problems that some of us face doesn't help the mom that finds herself in similar situation and feels she is the only one.

_________________
Heather
Matthew 5-21-03 DS, PDD-NOS and Ryan 2-14-01

mellysmom · Posted: August 11 2011, 10:19 AM Post subject:

Heather, You are right. I'm sorry. I should be posting about Melissa. I know I would like to hear more about the kids who are progressing at a much slower pace.

When I get the time, I will post Melissa's progress on the brag thread, because she is making progress and we are very proud of her.

Michelle

seansmom · Posted: August 11 2011, 8:23 PM Post subject:

Sean is 9 and still not completely trained as you can tell from my summer regression thread so don't feel bad. Funny as I'm typing this he actually just ran into the bathroom himself. Yay Sean!

At school he is 99% trained but at home only about 80%. And don't even go there for night training. He is improving and I just focus on how far we've come since last year.

It can be very frustrating I know. They all get there eventually.... I hope.

_________________

Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs

lespring · Posted: August 11 2011, 10:05 PM Post subject:

Ann, have you considered having a neurologist about having an MRI done to rule out tethered cord? It can affect continence.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Annieo · Posted: August 11 2011, 10:34 PM Post subject:

Leah, I think about stuff like that all the time, but then I think it just couldn't be some rare, weird thing and the doctors will think I'm nuts. Considering that he's already had several rare, weird things I don't know why he couldn't have this, too. Tim and I were talking yesterday, though, and he reminded me that some nights John is completely dry. This morning he was dry until about 10:00am! Tim didn't take him to the bathroom this morning and when I finally did, his diaper was completely dry and he went and went and went into the toilet! Sooooo weird.

_________________

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

lespring · Posted: August 12 2011, 7:25 AM Post subject:

Well, you know my opinion about Zebras and horses. After all, we have a whole herd of zebras in our house!

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Adens mummy · Posted: August 13 2011, 7:54 AM Post subject:

Adens 5yrs 5mths Aden is in pull ups. He will wee in the toilet sometimes ok when we take him, a few times he has asked I can't see this changing for a long time. There is no chance of poos in toilet the worry him so much. Aden has always been slow going when it comes to gross motor stuff, this is just another I guess.

_________________

burnsun · Posted: August 14 2011, 5:11 PM Post subject:

Annie....one day....after almost 7 and 1/2 years of trying....colin decided that was they day...... potty training I had given up on..... he decided underware..... no pull ups an he never looked back. We had a few issues after he added the insulin with his diabetes last spring (most diabetics get it before the insulin... not my kid but the zebra thing!)....... but at nine and a half he decided it was time.......

and when or if Devon ever decideds to potty train or even relizes he poops and pees...... and has contoll over it..... I WILL RENT A BILLBOARD and possibly a national commercial on abc!!!!! you will all know cause there will be a major earthquake on the new madid fault from all my jumping up and down!!!!! we are goin on 11 and counting~!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

kris10z · Posted: August 14 2011, 11:01 PM Post subject:

Ethan is 10 now and not potty trained. Crying or Very sad

We feel fairly certain that his tethered cord caused nerve damage and that he doesn't even know that he has to go. We are going to try the timing training once I get his Rifton toilet chair.

_________________
Kristen: Wife to Scott, Mama Bear to Ethan
(05/25/01, DS & ALL)
Taking the Step to a Healthier Self with Juice Plus+
www.fillthegap-juiceplus.com

Tom · Posted: August 16 2011, 9:00 PM Post subject:

Mikey was completely out of pull-ups during the day maybe two years ago or so. He was still having accidents every night but that ended about a year ago. Now he is just about accident free.

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

Excalibur · Posted: August 17 2011, 7:18 PM Post subject:

I dont know when, I dont even know why, but one day it all just came together. Daily accidents became weekly accidents, became monthly accidents, became yearly accidents. No training, no fuss, no method just a laid back attitude and belief that things get better, all by themselves. And so they do! just believe in your child Laughing

_________________
There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable.
There is another theory which states that this has already happened.

EAS1971 · Posted: August 18 2011, 10:41 PM Post subject:

Oliver turns 7 next month. He's not there yet. Confused

_________________
--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4

Adens mummy · Posted: August 19 2011, 4:54 AM Post subject:

I have been reflecting back to this thread every day, I' feeling os much better about Aden in Pull ups. not that I was upset... I dont bother him to much ask a few times a day and often dont ask at all. some days he screams at me if I ask so I dont bother.. I know it will happen just nice to read i'm not alone...

_________________

Momtoseven · Posted: August 19 2011, 8:18 AM Post subject:

Ann - were your other boys difficult to train? My sons were all late potty-trainers.Two of my older typical boys wore pull-ups into their 6 and 7th year. My frustration is compounded by a M-I-L who thinks all kids should be potty trained by 2 - UGGH!

Does John have constipation? My typical 6-year old still wears pull-ups and we are in the process of testing to see if it is due to constipation. We are doing miralax for him now and it seems to be helping - during the day only though - he still goes at night.

I have a friend whose typical son wet the bed every night until the day he got married - she said she has no idea what happened after that.

_________________
Maureen - Mom to Daniel(24), Brandon(22), Jordan(16), Thomas(14), Carrie(10), Samuel(7) and Mark (4)
https://www.carepages.com/carepages/MarkEdwardC32708

Adens mummy · Posted: August 19 2011, 11:01 AM Post subject:

my first 2 children were TT by 2yrs day and night
number 3 TT aged 2 as well but still at 7yrs is wetting the bed, not sure he will stop that for a long time, he sleeps deep....

_________________

lespring · Posted: August 19 2011, 11:14 AM Post subject:

For those still dealing with the night-time training issue, you might be interested in this blog post I did a few months ago.

http://gardenofeagan.blogspot.com/2011/02/product-review-bed-alarm.html

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Momtoseven · Posted: August 19 2011, 12:32 PM Post subject:

I'm going to have to break down and spend the money for that alarm. I am so tired of washing bedding and spraying mattresses. I love the idea of having a second set of sheets under the mattress protector!

_________________
Maureen - Mom to Daniel(24), Brandon(22), Jordan(16), Thomas(14), Carrie(10), Samuel(7) and Mark (4)
https://www.carepages.com/carepages/MarkEdwardC32708

Annieo · Posted: August 20 2011, 12:02 AM Post subject:

I just ordered one of the alarms with the sensor that attaches to underwear for John to use during the day. I'm really hoping he might understand what he's doing and be able to stop it.

_________________

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

MommyAngela · Posted: August 21 2011, 10:10 PM Post subject:

Well, Benjamin is only 3.5, but I just *know* that we'll be in diapers/pull-ups for a VERY long time. I can just tell, you know? I'm just glad that it won't be an issue at school, that he can stay in diapers as long as he needs to.

_________________

Angela
Wife to Matthew
Mom to three wonderful sons:
Andrew James--3/24/06
Benjamin Matthew--4/24/08 DS--VSD & ASD repaired 10/3/08, intestinal obstruction repaired 1/13/09, hypospadias & ventral hernia repaired 8/21/09
Thomas Alexander--3/25/10

www.theamicks-angela.blogspot.com

jobell · Posted: August 25 2011, 9:09 AM Post subject:

My 10 year old son is not trained yet. and it can be a bit discouraging.

he has chronic constipation his whole life, the doctor told me not to even try to train him until the stomach issue is resolved, but then never cured it!! my son has little sensation of having to go, so that is one issue, and also he will sit there and 'pretend' to go, but not actually do anything in the toilet. the 2 times i tried him in 'big boy pants' which he loved, he had 8 accidents in 6 hours and never ONCE deposited anything in the toilet, even though i took him to sit every 1/2 hour. if anyone has any good advice on how to move forwards with this... I am SO OPEN TO SUGGESTIONS.
I can't figure out if it is cognitive delay that is hindering progress, or his physical issues, or my poor methodology.

also, how to keep the household damage to a minimum if he does wet all over... my other kids get annoyed! and i am cleaning puddles all day.

LinMac · Posted: August 25 2011, 1:44 PM Post subject:

http://www.downsyn.com/phpbb2/viewtopic.php?p=441310&highlight=#441310

We've had a few discussions about potty training over the years.
I remember one where Jo ( HannahmomUK) posted a booklet produced by her local DS group. I'm posting the link cos there might be some new ideas for new members. Jo's post is a few entries down the thread.
Its a long thread, so you might need to get a cuppa beforehand!
Hope this helps.

I've been watching this thread Ann ....I'm amazed at the number of replies!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

Excalibur · Posted: August 25 2011, 4:29 PM Post subject:

I just go with the flow, cleaning up poo doesnt really bother me that much, but as the years passed, it all faded into history. I don't claim any credit for that, I just think there is no hard evidence that active intervention works any better than passive "wait and see" laisser faire approaches like mine.
That said, I'm glad we havent had an explosive poo episode for over 12 months, because I feel a lot happier letting my son go backpacking around Finland with his teenage supporter if I know he will use the toilet properly. But that said, if he does have an accident, it isnt the end of the world, is it? I mean,. we are all human, we all have accidents, dont we?

_________________
There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable.
There is another theory which states that this has already happened.

momlorac · Posted: August 25 2011, 5:47 PM Post subject:

Abigail just turned 7 and is still in diapers. She has no interest . When I ask her to go she says "no baby". Her diper dry about half the mornings. She will go sometimes if I say I will put the dvd in if she goes. She decided to empty her potty. A few times she just pretended she emptied it .Once I think she put toilet water in the potty and showed me she went.

_________________
Carol mom to Adam 6/17/96 ,Emily 8/7/98, Abigail (DS)8/16/04

jobell · Posted: August 25 2011, 6:05 PM Post subject:

Wow, i just read through that whole old thread and got tons of great ideas. most importantly, i have been way too negative! if he didn't 'get it' in a day or two i figured he was not going to get it, and i gave up! but i see people had to persevere months!

i wonder how you go about your day-to-day business, outings, errands, work, school etc. with an accident prone child? pullups when you are out?

Annieo · Posted: August 26 2011, 8:56 AM Post subject:

Getting John to pee in the morning was a huge priority for us before he had his urethral obstruction removed because he would hold it in and then be writhing in pain later. Our method was unorthodox, but it worked for us and transferred to using the toilet (which he will now do, but only when asked). Every morning after John got up we would strip him naked and put him in the bathtub. Then we'd run the water and pour water over his privates and eventually he'd relax enough to go. We always cleaned the tub afterward, but I still have never told my mother we did this because she's kind of a freak about these things and would be really grossed out!

_________________

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

MommyAngela · Posted: August 26 2011, 9:12 AM Post subject:

Haha--Ann, that's funny. Just the other night, I finished bathing Thomas and Benjamin together (ages 1 & 3). They were washed and rinsed. I walked across the room to get the towel, then reached down to get Thomas. Then I noticed that Benjamin was peeing all over him. haha Story of my life! I just rinsed them both really well and got them out. At least it wasn't poop! We've had MANY poop-in-the-tub incidents that my husband and I would like to forget.
One thing is certain--life is certainly not dull. Smile

_________________

Angela
Wife to Matthew
Mom to three wonderful sons:
Andrew James--3/24/06
Benjamin Matthew--4/24/08 DS--VSD & ASD repaired 10/3/08, intestinal obstruction repaired 1/13/09, hypospadias & ventral hernia repaired 8/21/09
Thomas Alexander--3/25/10

www.theamicks-angela.blogspot.com

seansmom · Posted: August 26 2011, 10:24 AM Post subject:

Still dealing with the poop issue! Grrr

Sean has pooped in the shower twice this week! I make him go to the bathroom first but I swear he saves it for the shower. Ack!

Just when I think we're moving past this.....

_________________

Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs

MommyAngela · Posted: August 26 2011, 10:32 AM Post subject:

Yeah, poop is pretty much my life. My Facebook friends tease me about it all the time. One of them who makes bracelets even made me a poop bracelet. haha (Not made of real poop, just to clarify..it has a cute poop charm on it...errrmmm...hard to describe, lol.)

_________________

Angela
Wife to Matthew
Mom to three wonderful sons:
Andrew James--3/24/06
Benjamin Matthew--4/24/08 DS--VSD & ASD repaired 10/3/08, intestinal obstruction repaired 1/13/09, hypospadias & ventral hernia repaired 8/21/09
Thomas Alexander--3/25/10

www.theamicks-angela.blogspot.com

seansmom · Posted: August 26 2011, 11:39 AM Post subject:

Rotfl! I need one of those!!

_________________

Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs

MommyAngela · Posted: August 26 2011, 11:42 AM Post subject:

Seriously, it is really cute:

http://theamicks-angela.blogspot.com/2010/06/poop-whole-poop-and-nothing-but-poop.html

_________________

Angela
Wife to Matthew
Mom to three wonderful sons:
Andrew James--3/24/06
Benjamin Matthew--4/24/08 DS--VSD & ASD repaired 10/3/08, intestinal obstruction repaired 1/13/09, hypospadias & ventral hernia repaired 8/21/09
Thomas Alexander--3/25/10

www.theamicks-angela.blogspot.com

lcbrownfam · Posted: August 26 2011, 1:15 PM Post subject:

Justin will be 6 in Dec. and we are not there either. Its really been starting to bug me and I am glad to not be alone!

_________________
Carol
Blessed Mom to Kaitlyn 6/92, Andrew 4/95, Aimee 2/98, Hannah 3/01, Stephen 2/03 and Justin DS 12/05

Momof6 · Posted: August 26 2011, 1:16 PM Post subject:

Angela, do you think your friend would make me one of those poop braclets? Very Happy

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 19, Chelsea 16, Connor 14, Logan 9, Cody 6 & Austin 4 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy, 12/16/11 dx with seizure disorder, neurogentic bladder...Monti Cath 11/9/12
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

Annieo · Posted: August 26 2011, 1:41 PM Post subject:

Christine TOTALLY needs a poop bracelet!!!

_________________

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul, and Alice
www.caringbridge.org/visit/johnbremer

MommyAngela · Posted: August 26 2011, 1:57 PM Post subject:

Haha--Christine, you are the QUEEN of poop! I'm just the duchess. lol

_________________

Angela
Wife to Matthew
Mom to three wonderful sons:
Andrew James--3/24/06
Benjamin Matthew--4/24/08 DS--VSD & ASD repaired 10/3/08, intestinal obstruction repaired 1/13/09, hypospadias & ventral hernia repaired 8/21/09
Thomas Alexander--3/25/10

www.theamicks-angela.blogspot.com

Momof6 · Posted: August 26 2011, 4:12 PM Post subject:

Need one with a tiny enema bag and cath on it..lol.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 19, Chelsea 16, Connor 14, Logan 9, Cody 6 & Austin 4 ( DS & Hirschsprungs pull through 12/8/08 ) diagnosis 10/28/10 Colonic Neuropathy, 12/16/11 dx with seizure disorder, neurogentic bladder...Monti Cath 11/9/12
http://www.caringbridge.org/visit/austinpaquin

I think I can, I think I can.
Climb the highest hills in all the land.
(If you think you can, you can.)
He could and he did !

I say CHEESE !

seansmom · Posted: August 26 2011, 6:52 PM Post subject:

I am so excited to hear about fellow poop soldiers in the trenches!

It's a crappy situation but somebody's got to do it!

I love the bracelet!!!!

_________________

Kellie Mom to Sean 10 yrs with DS and Carly 14 yrs