My toddler son has SID. Potty training problems?

by Melissa
(Santa Clarita, California)


Hi,


My son has been diagnosed with SID. He has had muscle issue since he was a baby. Started Physical therapy at 9 months old (has mild hypotonia), started speech therapy at 2 years, and will now be starting OT. He is very little for his age and delayed in alot of areas about a year. I never realized how many symptoms this syndrome can cause. He does not have any issues with taste, smells or sounds, it effects his balance/coordination, impulses, lack of pain when falling, and HYPERACTIVITY which i am at my wits end with. I don't know what to do to help calm him down. He could stay up for 36 hours straight.

I guess I have two questions. The first is, he just turned 4 and does not seem to even be close to being potty trained. He has gone peepee on the potty a few times when I leave his diaper off (but has also pee'd on the floor when I do this). He will scream and throw a tantrum if I know he is starting to go #2 and try to get him to sit on the potty. Some people have told me I need to get rid of the diapers. Let him pee/poop all over himself until he "get it". I think that is cruel. Is this a common issue with SID children?

Also, he is extremely hyper which my husband says is just being a "BOY". I have lupus and another auto-immune disorder and am very sick right now. He yells and screams alot and I have no idea what to do to calm him down. He has a horrible sleep schedule and a poor diet (he doesn't like to eat many foods but loves sweets). Is there a supplement or special diet he should be on? Any advice would be so greatly appreciated. Being sick myself, I don't have the strength to google all the info on this disorder right now. Im hoping I can get some advice from you until I am well enough to get more info on my own.

Thank you so much for any info.
Melissa, mommy of Ryan

Comments for My toddler son has SID. Potty training problems?

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Sep 18, 2012
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just wait
by: James cryer

I know it's late to. Respond but from my experience of raising children, it's best to wait untill there ready to pottytrain them, what's funny is that my 3 year-old Ryder has the same thing in some perspectives.

Aug 10, 2009
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She just doesn't care
by: Anonymous

My daughter turned 4 in March. We were told she is a "sensory seeker" part of SID. When it comes to potty training, it's like she doesn't care. We have done the rewards thing, wearing nothing but a sun dress, or just panties. Yesterday I went to check on her, she was sitting with poop all up her back, I have no idea how long she was sitting like that, it's like she didn't care she went! She has gone poop in the potty once for me ever, and has never peed. She "knows" that big girls go potty in the toilet and babies go in their pants, but it's like the connection between her mind and her body isn't there. She will be standing next to me and start to pee, it's only when she sees it running down her leg does she realize she was peeing!

I was told by her pediatrician to not worry about potty training her now, that it just won't work until she gets some sort of OT (which we are on the waiting list for). She wants to do all these activities (gymnastics, swimming etc) that require her to be potty trained for her age group and she can't. Any suggestions or is this something we just have to wait out?

May 29, 2009
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Potty Training and Hyperactivity
by: Kelly

I have a son that will turn 4 in July and he is EXACTLY the same way. I have been trying consistently for a year and a half to get him potty trained and he is now to the point he just wears pull-ups at night. He does have bad days where he has multiple accidents, but just keep trying. I battle with him trying to get him to go to sleep every night and it takes a hour and half on any given night just to get him to stay in bed. Nothing seems to calm him through the day and nothing holds his attention more than 2 minutes unless he is riding his scooter, which always lands him in time out because he rides into the street constantly.

I am seeking to find help for him and to help me decide what is SPD and what is a 3/4 year old behavior. He seems so much more over the top than any other kid I have ever seen. Can't offer a lot of helpful information, but just know that you aren't the only one going through this. Actually I am quite pleased to know I am not the only one going through it. Most of what I read is about hypersensitivity and I know my son is hyposensitive.

His high pain tolerance is unimaginable to me most times and I fear he is really going to hurt himself seeking the extra stimulation. Good luck and if you need to email me with any suggestions on things I have tried, please don't hesitate. kelbertsch@yahoo.com

May 29, 2009
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SID and Potty Training
by: Maria

My son just turned 4 and has apraxia of speech and SID. He became potty trained the weekend before his birthday (finally). I can relate to your frustration. I waited until a day when I knew my household would be quiet and loaded him up on alot of juice, chocolate milk (his favorite) and crackers. I started early in the morning when he woke up, took his clothes off from the waste down and set his little potty on the floor. He got it very fast. We're still tweaking "No. 2". But for the most part, he got it. I was mostly concerned about him grasping the feeling of right before he has to go. I am also all about bribery. I told him he could have any toy he wanted if he used the potty all day. Stickers, m&m's, etc. don't work for him.

Another thing I have started him on is a product called "Speak Nutrients". I am attaching their website in case you're interested. He has been on it since March and I've noticed huge improvements in his speech. I would talk to your pediatrician first, though, to make sure he is a good candidate. http://www.speechnutrients.com/?gclid=CNTl9q7c4ZoCFQLixgodLFb3EQ

Good luck.

May 25, 2009
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potty training
by: Anonymous

What I found worked for my daughter was to get her to sit on the pot with her nappy on when she wanted to do #2, then when she became comfortable with this, I loosened the side of the nappy, then later just lined the pot with the nappy and then eventually promised her any toy she wanted in the toy shop if I could remove the nappy, and finally after months of battling success. Patience is certainly a virtue.

Apr 08, 2009
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hang in there
by: Melody

My daughter is 4 and a half. She was potty trained for a while, but has now regressed back to pull-ups. She to will just sit in the poop until I find it (or smell it)... She has also just been diagnosed with SPD. She sounds a lot like your son. Same things as a baby and so on. She didn't crawl until she was 1 and didn't walk until 29 months (with a walker).

We had Early Child Intervention, and she is now mainstreamed in with Pre K. We have been going to OT for about a month now. She has had PT since she was 1 and a half. It's so hard and I understand. I'm a single mom and I also have lupus (thank God it's only mild right now). Just hang in there. I'm told it will get better. (I'm Still waiting :-) ). Then I guess we have to look forward to the teenage years... Just take care of yourself too.

Apr 07, 2009
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I understand
by: char113

I understand , my son Bryson is now five and he just pooped in the pot at 4 1/2 he has SID. When he poops in the pot he does not sit on the toilet seat he lifts the seat and sits on the rim, he also removes all of his clothing. Please be patient with your son, he is beautiful and if it takes him a lot longer to poop in the toilet so be it.

Don't put so much emphasis on his age, as to putting the emphasis on when he's ready he will do it. This obviously is stressing you out, so just focus your energy on getting him on a schedule for sleep. I use a weighted blanket at night and a weighted vest during the day when my son is overactive. The pre K teacher has been doing the same and it has helped tremendously.

Another option is to use a mini trampoline so he can jump on it. I suggest a Bazoongi, this will allow him to work off the extra energy without driving you completely crazy. Hopefully this is helpful. Good luck , A empathetic parent.

Apr 06, 2009
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some thoughts
by: Anonymous

HI, I can imagine how difficult it must be to not have enough energy to keep up. Although I'm not dealing with auto immune I had pneumonia for a couple of months while our son was 4 and home and we had just moved to a new state. I had no one for him to play with and I had no energy. It was terribly difficult. Our son has a lot of sensory issues and is actually being evaluated for Autism Spectrum Disorder. Most people say WHAT? Not Autism. But spectrum disorder is so different than what most people think. Anyway, he went through a period of time just before he turned 5 where he was really uncontrollable. He was hard to do anything with. He would run away from me, he was dart into dangerous places, he was defiant, he threw a chair at me and I was beside myself as to what to do for him. We ended up having a great opportunity in our college town to work with some grad students doing a program with Parent Child Interaction Therapy. The therapy was just as much for us as it was him and it made all the difference in his defiance and some of his more difficult behavior. He still has issues with many things and this current evaluation period is ultimately trying to get him OT through the school system.

As for the potty training, I totally hear you! This has been and still is an ongoing battle. I was paranoid that he would not be potty trained in time to attend kindergarten. I tried the no diaper and for peeing it helped but it took forever and a LOT of messes to clean up. Lots of extra laundry. He is almost 6 and sleeps so soundly I have to wake him two times during the night to walk him in half asleep to pee. It doesn't always work. I still had two loads of bedding from last night. However, the poop part of it was most frustrating for me. He has not had an accident in awhile. I think his sensory issues did not help. He actually liked the feeling of the poo on him. So getting rid of the diapers made no difference. He pooped in his underwear and would sometimes sit in it for a long time before we recognized the problem. It has just been a long haul of consistently praising him and doing everything we can to be positive and not bring negative attention to the issue. He knew no one would help him at school and so I think it forced him into a reality check but so far its much better. Now for the night wetting. I'm not holding my breath.

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