new to site; would love advice!

[spanishchic]

Hello! I'm a mother of a 2 year old with SB (myelomeningocele) who would appreciate any advice on potty training. Shoot, any advice on having bowel movements would be appreciated! I have done everything the doctor's and nurses have suggested and I'm still trying to work out that magic formula to get my kid to have a BM! I guess I'm frustrated and would like to hear from those of you who have been through this what to expect. I teared up the other day when my daughter asked me if I was going to give her her enema!! How many 2 year olds do you know who know that word!
Do you think I'm starting too early? She'll be 3 in June.
Thanks for any advice!!

[Spokie]

Interesting to note some of the words these kids know from a young age! And the procedures they know by heart!

[kali]

hi and welcome, I also started early with my son, who is 9 yrs old now. I have tried almost everything except toward the operations. bowel washouts are good when the child is constipated. maybe you should look into medication to make the movements looser. It works with my son.

[angel]

My son has severe constipation. He is now 11 years old but when he was 2 years old he got so severly impacted they actually had to do surgery to go in and get out the impaction. I would start with the small stuff first. Try putting a tablespoon of mineral oil in with her macaroni and cheese (all kids love that don't they) You have to mix it in with something like that or you won't get her to take it. Drinking that stuff is just like drinking cooking oil UGH. I have also tried milk of magnesia i usually put that in chocolate milk. Those tricks help when there isn't an impaction but with my son it don't matter what you do he will get impacted at least 4 or 5 times a year. He is on miralax which helps slow the process down for him and a cone enema every other day. These are the steps we take to keep him out of the hospital. His bowels are his worst symptom thus far. There are a million ways to get a child to go. If you need any more suggestions let me know!!!

Angel

[spanishchic]

Thanks for you message. I am doing Miralax and Fiber and it seems to be working most of the time. I will try the mineral oil. I am getting a lot of flack from family members about how to potty train her and how she needs to be on her potty chair and I try explaining to them that she isn't ready for that yet . . . just mentioning the potty chair to her makes her run the other way! What is frustrating is that she knows how to push but she sometimes thinks we are playing a game with her and refuses to do it. I was telling my husband the other day that all her little friends are running to the restroom and I'm still changing her diaper, just since it easier to clean up the mess when she goes. I was a little embarrassed and explained to the other parents out situation because they gave me the funny looks. I'm just trying to figure out what is normal for her . . . and make it normal for us, does that make sense?
Do you use the mineral oil and the Miralax simultaneously? I will give it a try!

[angel]

Thanks for you message. I am doing Miralax and Fiber and it seems to be working most of the time. I will try the mineral oil. I am getting a lot of flack from family members about how to potty train her and how she needs to be on her potty chair and I try explaining to them that she isn't ready for that yet . . . just mentioning the potty chair to her makes her run the other way! What is frustrating is that she knows how to push but she sometimes thinks we are playing a game with her and refuses to do it. I was telling my husband the other day that all her little friends are running to the restroom and I'm still changing her diaper, just since it easier to clean up the mess when she goes. I was a little embarrassed and explained to the other parents out situation because they gave me the funny looks. I'm just trying to figure out what is normal for her . . . and make it normal for us, does that make sense?
Do you use the mineral oil and the Miralax simultaneously? I will give it a try!

I haven't used the mineral oil in a long time because the miralax is working wonders. The mineral oil is something we used when we knew there was an impaction. Now let me warn you it is exactly what the name states OIL!! You want to talk about a mess when you give them that stuff!!!! We made sure we stayed home when we gave him that. But it does work. I would ask my doctor before using them simultaneously!
I got a lot of crap from my family as well about my son. It took him years (we are talking about age 7 or 8) before he got a handle on the bowel control and at the age of 12 we are still having the occasional accident. I started working with him when he was young trying to potty train. I started at the same age the rest of my friends started their kids WITH THE UNDERSTANDING that there was no way he would be able to "get it" as fast as they did if at all. It is just one of those things about SB, you never know the level you child will be able to function in that area.

angel

[smoop]

My daughter will be 3 in a couple of days. We started putting her on the potty at 18 months--with success. But it was because we could sense a BM coming on. We've pretty much put her on the potty daily for the past year or so. At the age of 2 she went thru a phase when she was telling us "gotta go poo-poo" and we would get her on in time to go. That lasted for a few weeks then fell by the way-side. Have no idea why. Even though she went in her diaper we continued putting her on the toilet each day and quite often she would still go. She is totally capable of pushing.. and I assume she can sense it coming on, otherwise how was she able to tell us in the past?

She's been taking Miralax (1/2 capful) since 18 months. I have mixed emotions about it.. it's so hard to get the dosage just perfect. Her BMs tend to be really mushy (yuk!). I just started a bowel program 3 weeks ago. We are doing the Magic Bullet (1/2 daily) and still take the Miralax. I put the MB in right after dinner and it makes her go every time within a few minutes. She has had an occasional accident in her diaper but overall the Magic Bullet is working well.

This whole bowel stuff is hard to understand.. but you have to discover what works well for your child.

[Dodger67]

It took over 20 years for me to find the right solution - at 40 years old I still have an occasional leak. I use a "large volume" water enema twice a week.

[rachiebaby]

Hello! I'm a mother of a 2 year old with SB (myelomeningocele) who would appreciate any advice on potty training. Shoot, any advice on having bowel movements would be appreciated! I have done everything the doctor's and nurses have suggested and I'm still trying to work out that magic formula to get my kid to have a BM! I guess I'm frustrated and would like to hear from those of you who have been through this what to expect. I teared up the other day when my daughter asked me if I was going to give her her enema!! How many 2 year olds do you know who know that word!
Do you think I'm starting too early? She'll be 3 in June.
Thanks for any advice!!

I think it comes with age and feeling I used to be able to just sit on the toilet and cough it out then my parents use to have to help me and occasionally there would be a few times i would feel enough pressure to push it out on my own and lately i've been able to get alot out on my own but it takes some hard pushing sometimes

[angel]

The first year and a half he was on the miralax we had a horrible time finding the right dosage. To much and you have a mess to little he gets impacted. He still had to go to school and he is an older child so his friends wouldn't be so understanding as they would maybe if they were younger. We finally found the right dose and still have to play around with it from time to time.