Toileting

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Sallie-Over and over again I have seen type 1 kids have trouble like high heart rate and even fever because of constipation.  That is where I would always start when trying to figure out a mystery. The Doctors will probably tell you that it couldn't be that. Ignore them. It could. Take my word for it. If they are not having a good BM daily give them a fleet Baby Lax and see if that helps. Sometimes they can even be having a bowel movement a day and still have a blockage that is causing a problem. And this is one of those kind of things that you just have to say, "What could it hurt to give them the baby lax and see if the heart rate goes down?"  

(I know, I must seem obsessed with this) But no doctors that I know of are even aware of how seriously constipation affects SMA children. When Kalair was about 4 months old, she had been having bowel movements but they were not what was normal for her, we knew that she was a little constipated.  So one morning, she spiked a fever and her respirations were VERY high.  We panicked and thought that she must have contracted an infection of some kind.  We took her to the hospital where they poked and prodded her (had we mentioned to you how hard it is to find a vein on an SMA child?) and x-rayed her etc., only to come up with nothing.  We even asked the doctor if it could possibly be related to the constipation and he said "Oh no, my boy went for 13 days without a BM once and he was just fine.”  Poor kid.  Therefore, in desperation, we stopped on the way home and got some suppositories and used one. She had a big BM and immediately her respirations returned to normal and her temperature disappeared. Since then, we have talked to many other parents and heard about many dramatic side effects from constipation.  Two of our close friends have had serious urine retention caused by constipation (to the point of requiring catheterization) and we have heard of others. And with attention to the issue of constipation, these problems go away. So, if your child just does not seem quite right to you, or is having even more dramatic, unexplained symptoms. Even if you think that they are pretty regular, try a Fleet Baby Lax and see if there might be more of a blockage than you think. 

Stephanie Varney- Matthew has a Rifton potty chair and we love it. He is strapped in with 2 straps and has a tray also. He really doesn’t tell me much when he has to go. I just put him on 15-20 minutes after he eats. I usually put him on 2-4 times a day. He goes poo poo 1-2 times every day. I ask him if he went and he says I want to try later. So I take him off and there it is poo poo in the toilet. I think it may be hard for him to feel down there.

Melissa-  (adult SMA) My Freshette came with 2 tubes, one that was about 5-6" that you could use if you were peeing into something close by.  And the second tube was at least a couple of feet long, so you could cut it to whatever length was good for you.  I used the long one, and figured out how long I would need it to be if I were sitting in front of a toilet, letting the tube hang over the edge of the toilet into the bowl. The tube is pretty flexible, but not overly so (you couldn't pinch it closed very easily). It has enough flexibility that I was able to roll it up though, to keep it (and the Freshette) in a baggy in the backpack on my chair. What I meant by dribbling, is that I felt like I had to pee sort of slowly, because the Freshette itself would fill quickly...I was using it sitting up though...it might be different laying down.  But yes, i felt like the pee backed up if I went too fast. I never used the bags, so I don't know how well they work at all...sorry. As for stopping drinking in the evening...I guess it would depend on what time you go to bed ;-)  I go to bed early, because Robert and I have to get up so darn early, so I start limiting what I drink at about 6PM. One thing that I have really noticed over the last few years too is, some beverages will get me up at night, and other's rarely do.  I used to drink diet Coke a lot, and that seemed to make me have to "go" more at night.  Then I switched to drinking bottled water only, and that has really helped, drinking that (even right before I go to bed) rarely gets me up at night.

Jeni- Annah had an obstructive bowel. The seepage that came around it made it seem more like she had small amounts of overly loose stool. We tried everything -- suppositories, MOM, even 3 enemas. What finally broke it loose was Chinese food. The Myrolax does work really well. I just actually had to STOP giving it to Annah because it was working too well. We'll be praying that it's just severe constipation and the Myrolax knocks it out in a couple of days!!

Tracy- They gave us lactulose and it doesn’t work at all!!

Nadine- Lactulose isn't exactly the same as Myrolax, I don't believe, as far as makeup. We chose not to use that because I was not comfortable with it. It is a big thing here now, (Myrolax) there are many kids on it since it has come out, because it is very effective. It is new though, maybe just within the past year. The Myrolax kicks in but I admit the drawback is that when you first get it you're already in trouble and it takes 2-3 days and sometimes it's already too late. We did 1/2 cap twice a day in the beginning. If that doesn't work and you're concerned in the hospital, they gave Jarred Golytely solution. Talk about a mess! It really cleans you out. However since she won't drink it that might not work either. They gave it to Jarred by NG tube before the g-tube. I don't know how I ever got by without a g-tube I'd recommend it to anyone!

Kenya- Myrolax can take up to 4 days for it to kick in and I would up the dose once to half a cap if it hasn’t kicked in yet but only for one or two days. Another important side note is that she has to drink lots of fluid with this. Adam said that most people forget the water part but it very important to push lots of fluid while taking the Myrolax. With Aschdon when we first started using it, we gave him 1/4 cap every day for a week and then once he started having regular ones we do every other day. Then I have gotten to where we do it about every three days and sometimes I have to start over or I just give him 1/2 cap and it works. One weekend when my in laws where watching Aschdon she miss read my note and she gave Aschdon a 1/4 of a cup!! Boy did that clean him out!! Try the trick I use with my kids to get the fluids down, have her drink it out of a medicine dropper or syringe. DO it in small doses, an ounce at a time every 15-20 minutes.

That will help even if you can get her to drink 7-up or something. Let me know if you need any help as I have had to be ingenious when getting my kids to drink.

Brenda- MJ stood for years with pretty bad contractures in her knees and hips. You can just set the stander to adjust to the contracture.....by adding padding behind the knees, etc.  When Emma was alive, it was the only way we could get her regular.  She had a BM every time she stood.  It never failed. MJ quit standing right before her surgery.  It was getting too hard to get her up standing because they didn't have these cool standers back then. 
We had a homemade one that didn't support her really well, so her hips dislocated whenever she stood.

Kristal- We mix our Myrolax with 4 oz of Kool-aid. Our doctor told us it didn't really matter what you mixed it with and that 4 oz was okay.

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