Bowel movements

Heather - posted on 04/19/2010

Jacob has constipation too. The GI doc says it's because the low muscle tone extends all the way into the GI tract, effecting the involuntarily muscle movements there too. We've tried lactulose too, and it would only work short term. We had to keep on upping it. When we first saw out GI (who is our current one, great dr),he had an abdominal xry done to see how far Jacob was backed up. Based on that, we had to do suppositories for 3 days, and then Jacob went on miralax. It's great stuff! Works like a charm. If he gets stopped up, which doesn't happen much anymore, we stop the Miralax and give him Milk of Magnesia for a day or two and that really gets things moving, then go back to the Miralax. Hope that helps.

Soledad - posted on 04/05/2010

ok so here are the results...so far I am still having to help Lily go. Its been a week since I have been giving her the milk of mag 1 tsp a day. I will add a little more and see if that works now. Wish me luck!

Christy - posted on 03/29/2010

that is funny cause my pedi said "its not good for them"...I use it anyways, lol. & it's working :D

Angie - posted on 03/29/2010

ya christy that is funny huh. olivia's ped dr is the one that told me to give it to her and so far so good and she takes it everynight. it sounds like that would be alot to give if you had to give 25 ml's. they all go to pretty much the same kind of schools to become dr's so i wonder why it is so different

Christy - posted on 03/29/2010

I beleive it's 5ml I was told by many people (docs & such) not to use it on children though cause it's to hard on them.
Im honestly wondering why docs say so many different things depending where you are located :(

Soledad - posted on 03/29/2010

Lily has been having problems again too..Just bought the milk of magnesia but I'm not sure how much to give her?

Christy - posted on 03/17/2010

Well now McKayla is having problems again...i gave her 11mls of the meds this morning when she finally woke up (11am) and by 1230pm she finally went..It was really hard on her & she almost riped a little..nothing in her diet has changed or anything..It almost scares me how hard it is for her :(
Our next pedi appointment isn't till the 26th & when i called today we can't get in any sooner :(

I wish there was something more I could do!!

Stephanie - posted on 02/13/2010

thats good, cross that one off the list,lol. Glad that there wasn't any problems.

Angie - posted on 02/13/2010

stephanie you are funny!!!! ya we had olivia checked out also. they checked her from the time something went into her mouth, watched it go to her tummy, and then waited for it to go to her intestines, and then for it to come out. and she was good to go. lol.

Stephanie - posted on 02/13/2010

Something I meant to mention before but forgot, sorry, is have any of you had your child checked out by a gastroenterologist to make sure there are no structural malformations that may be adding to difficult BM's? We had annie checked out to be on the safe side, from what i've read about angelmans there isn't anything that says their bowels are or can be malformed but i guess anything is possible. And also I buy the pants with the adjustable waist too! LOVE THEM. and like angis said they are well worth the extra money. Annie wore 0-3 mo clothes until she was 6mo, and was almost 2 when she was still wearing 12 mo clothing. I didn't think she was ever gonna grow.

Alexa - posted on 02/13/2010

Gabriel has the same issues with his bowel movements. I make sure I have prunes in baby food at home. Usually if I give him a couple of those, it will take a few hours, but he will go. I hate how he suffers through the pain of being constipated.

Angie - posted on 02/11/2010

you are so lucky that she has that sucking part down. wow i have fought with olivia for 3 years now to get that down. but nope she hasnt yet oh well what do ya do right when olivia was 3-5 months old i think she started teething and it was like she had all her teeth before a year old all of them and she wasnt a bad teether. i think that one of the only things that wasnt difficult with her thank god. olivia still chews on the sippy. i go thru lids for sippy cups like people change their underwear lol.

Christy - posted on 02/11/2010

Old navy carries those pants up here, but not wall mart! I find wall marts shirts are smaller then the tag says on some of them as well :)

Soledad - posted on 02/11/2010

She drinks it from the bottle. Which she just learned to hold on her own!!! So happy about that. Its a dr brown's 4 oz bottle. She was drinking the bottles just fine before the hospital and the she started all of sudden biting on the nipple. This is when she stopped drinking but she also had 3 teeth come out at the same time! A couple days later we were rushing to Texas Children's and then about a week later she started eating again but not so much on the drinking. I had been holding the bottle before so we tried that again. Then the hospital gave us a tiny 2 oz bottle with pedialyte. She held it! So I started putting her milk in there. She was still biting so she wasn't getting much of it. It wasn't until a couple weeks ago that she started sucking again and now she is getting all her Pediasure. She will not use the sippy cup and I had spent tons of money on different cups...so I am just waiting until one day she decides to do it like everything else does.

Angie - posted on 02/11/2010

that is funny about the clothes for lily, dont ya just love those inbetween stages, lol. olivia's upper body is a size bigger that her lower so like if i by like a size 4/5 pant i have to get a size 6 shirt. i have found these pants that have an adjustable waist and i absolutely love them. the extra long legs doesnt bother me as much as not the right fit in the waist. the pants cost a couple dollars more but they are well worth it. i have found them at wal-mart, target (i think), kohls, and maybe sears or jc penny's (i havent checked the last 2, but i am sure they would be in there). does lily take the pediasure in a sippy, bottle or what?

Soledad - posted on 02/11/2010

Yeah thats what I'm afraid of too...someone calling cps or the cops. My family knows her reaction too. Angie I will try that this weekend and let you all know. Thanks for the idea. Lily drinks 3-5 8oz bottles a day. She's 15 months now and wears 12 month clothes. Shirts and onesies I can make work but the pants are what I have a hard time with. 12 month pants are long enough but loose in the waist and 9 month pants fit her in the waist but are too short. HAHA I just make it work.

Stephanie - posted on 02/11/2010

Soledad, I know how you feel when lily tries to go in public. It never fails that Annie will try and generally suceed in going. And she turns bright red and lets out this pericing scream. I feel like sometime someone will call the cops while we're shopping thinking that we are physically hurting her. All our family and close friends know thats her reaction to going and they don't say anything other than occasionaly asking if there is something they can do to help. But I hear ya!

Angie - posted on 02/11/2010

i would try lily on maybe 1/2 tsp- 1tsp of the milk of magnesia. i am not saying that it isnt like a loose stool, if her stools are too runny just lower the amount of milk of magnesia a lil bit at a time. i also give olivia the milk of magnesia everynight. how much of the pediasure do you give lily? i m just curious olivia gets 5 8oz bottles every night. i tell everyone that the pediasure is like miracle grow but for kids. olivia weighs 34-35lbs and she's about 41 inches tall or about 4 ft tall and she is only 3 yrs old and she wears a size 4/5 in girls clothes not the toddler size but in the lil girls dept. crazy huh. hope that the milk of mag helps. let me know either way please, if it doesnt work (but it will lol) we will brain storm and try something else. have an awesome day.

Soledad - posted on 02/11/2010

Thanks Ladies...I too find it weird about what pediatricians say in different places. All of Lily's doctors have her on pediasure because it has the most calories and want her to gain the weight. The day of the genetics appt she weighed 16 1/2 lbs and I was super excited because she has never been there. I think I might try the milk of magnesia. How much do you give? I was also told no fiber or even bananas. To this day I think she has only eaten bananas twice because of what I have to deal with in helping her. She starts screaming bloody murder and when we are somewhere you can't imagine the stares I get. I'm lucky my hubby has no problem helping her as well. At first he use to be squemish but now because he sees what she goes through he helps her. I have to keep her on the pediasure because sometimes that is all she will have. Lily has not wanted any mashed food or meat lately so all she is doing is drinking. I have tried the juice again and she will drink about 3-4 ozs but water she will not touch...I just don't want to give her that medicine anymore because its so messy afterwards.

Angie - posted on 02/10/2010

hey steph i not having trouble with olivia and pooping, cuz i give milk of magnesia (over the counter laxative, that you can get at any pharmacy) i was letting soledad now what we used for olivia, and i think i might have confused people and thought that i meant milk but its a medicine called milk of magnesia. olivia doesnt like anything in her sippy accept water. isnt that funny how they can be so picky. thats really any kid but out of all 3 of mine she is the most stubborn when it comes to eating and drinking. lol

Stephanie - posted on 02/10/2010

I have done research on Angelman Syndrome and yes, constipation is caused by the angelmans. Its another one of those wonderful side effects, just like acid reflux and poor weight gain.
Our pedi has tried a few things with Annie. First when she was in the 4 - 12 mo. range it was baby food prunes. She LOVED them. We had to be careful with how much she got of them because as you can imagine when it did help her relieve herself it would be everywhere. After the baby food we tried prune juice. I tried with out success for two weeks to get her to take it in some form or another. I tried straight prune juice, then i mixed half and half of prune and apple juice. My final attempt was freezing prune juice in an ice cube tray and putting a single cube in with her apple juice sippy's. You may have better luck then I did. Now we buy Miralax, the box with the individual packets. Her pedi told us to get this and give her 2/3 of a packet a day. It was our choice as to when (morning, afternnon, or night). She did say that if we gave it to her at night then by morning she should definately be able to go without straining. A couple moms have mentioned milk and pedisure, these products, even with fiber included, make it easier for our angels to get constipated. Eating aamore fiberous diet may make a slight difference, but our kids need the milk or substitute so there really isn't much lee way. We have decreased the amount or number of sippy cups Annie gets with milk. Her pedi said she doesn't need anymore than two 8 oz cups of milk a day. And I saw Soledad say that her angel doesn't like to drink water or juice. We had this problem too, and maybe my husband and I's way of doing things may seem harsh or mean but we've had good results. We allowed her to have her two milks but anything after that it was apple juice. She didn't like it and refused to drink the juice for a couple days but after those few days she began to realize that no matter how much she fussed we weren't giving in and began drinnking it. Now we don't have any problems with her not drinking applejuice, we can switch it and it doesn't fase her.
Angie- I'm sorry, I don't know much about dealing with a g button. I don't know what can go through it and what can't. So I'm kinda at a loss of any advice I could give you. I hope something I've said can be of use to you. Again, I am so sorry.

Christy - posted on 02/10/2010

An angel is so rare, it makes me wonder if when they get into pre school & school how they will be treated!!!
Yikes, im scared :(

Angie - posted on 02/10/2010

you to huh. you would think that when they are going to med school that the material would be a lil bit the same not as diff as i am finding out things on here. it is kind of scarry. no wonder why we are running into brick walls and there isnt really alot of info or better treatment plans for our angels they cant even get stuff straight in med school. wow. makes you wonder if they ever talk to dr 's in different states, how can they even get medical journals straight ya know.frustrating to say the least

Christy - posted on 02/10/2010

Such a change from where people live! McKayla's doc won't let her have the reg pediasure. I've tryed her on milk, and she's alergic, so it's all about Soy.
Kinda funny how depending on where you live what the doc tells you. Almost makes me think twice about somethings!

Angie - posted on 02/10/2010

hum for some reason olivia's ped dr. says no on the fiber. thats weird huh. when she was a baby we had to give her formula tha we could only get at a pharmacy with a prescription and cost $50-$60 a can. olivia was also on 3 different meds for acid reflux and thats when he put her on milk of mag. he says it does pretty much the same thing as prescription stuff. i dunno olivia has had issues with pooping since she was born, when we run out like just one night she is constipated the next day. i think dr likes the milk of mag cuz it can be controlled a lil bit easier or something. that is really wierd though.

Christy - posted on 02/10/2010

I was told that to much is bad, but McKayla also eats lots during the day unless she's sick (3 meals + snacks).
I do recall a while back when we were having bowel problems that we were to fed McKayla more food with fiber in it. She is curently on Pedia sure with fiber, and so far so good!

Angie - posted on 02/10/2010

um olivia gets 1200 ml of pediasure a day pumped into her stomach. that is her only source of nutrition, because she doesnt eat enough orally to sustain her or gain weight. so i dont think that is the problem. especially if she was already like that before the pediasure. i have always had that problem with olivia and i do think that is a part of the syndrome. my ped tells us to give olivia milk of magnesia, and we have been giving her that since she was 1-2 months old. olivia is 3 now and weighs about 34lbs and we give her 2 tsp a night and its been that dose for over 6months now. i dont know how well she will take it orally. one of the good benefits about having a gi button is that i can just give all olivia's meds threw there in a feeding tube. but i would try that. and i would just start at like 5 ml or 1tsp and they have different flavors too. or ask your ped dr. hope this helps

Crystal - posted on 02/10/2010

I've had the same problem with Tyson since he was an infant. They put him on lactulose when he was in the hospital over Christmas, but because it was going in through an NG tube it worked great, now that he doesn't have the NG tube anymore they told me to put it in his milk but it isn't working at all anymore. Someone told me to try mixing Benefiber in with his water or milk but I haven't tried it yet.

Christy - posted on 02/10/2010

We've had the exact same thing. That med is so gross & messy. I have a hard time getting McKayla to take it!

To much pedia sure isn't good either. I know it's tough to find a happy medium.

Do you have her on Milk yet, or soy? There's certain drinks, & food that do help out. You just can't always find it right off!!