Please help a friend whose boy also has CF

ehtansky21

New member
This my momma is all on her own and seems like no one is really taking this little boys case seriously. I have no experience with constipation, so please if you can help with any suggestions that would be so appreciative. This is what she wrote to me, as to what is going on.

blessings,
missa

Here is a little background of what has been going on. In November/december of last year he started having horrible pain so bad to the point he would just lay on the ground and cry until he finally would poop but once he did the stools were always very soft so I didn't understand I had him in ER and urgent care and they always told me he is probably just coming down with a virus it will pass well it just kept happening. So I took him to urgent care again and finally the Dr said enough is enough lets see if we can find something so she did a stool test and found blood so they did an x-ray and said it looked as if he is completely backed up, so she referred us to get in to see GI immediately so in January we started seeing Dr xxxx and he agreed with the Dr at urgent and also diagnosed milk protein allergy because of a rash he has had for a long time. So he took him off all milk and gluten products and he changed his formula and put him on miralax daily it seemed to be doing well then he started having the pains again so he upped his dose of miralax but it just seemed to be a cycle so then a few months ago they did a blood test and said he grew out of the allergy put him back on everything we need to get his weight up and switched him from the peptimin to boost. then it just seemed to keep getting worse he started having rectal prolapse every once in a while, Well about a month ago I had enough he was in so much pain I took him back to ER and the Dr in the ER did an enema and it caused his prolapse to come all the way out but he was not passing the stools so at that point he decided to admit him and transferred us to the childrens hospital while we were there they did nothing but give him a bunch of miralax and send us home. Well on Saturday night his rectum prolapsed again and do I call 911 and they took him to the hospital by the time we got there it went in on its own so they sent us home then on Sunday it did it again 2 times but I was able to reduce it on my own so I decided not to take him in and I would call Dr xxx on Tuesday, well then Monday it started prolapsing every time he went poop and then started bleeding really bad so I took him back and at this point it was stuck out and would not go back in. They decided to have him admitted so he could see a surgeon asap well long story short they did a bunch of test and determined he was backed up again so they did a completed cleanout with a NG tube in his belly and put him back on miralax 2 times a day and basically told me he is going to have the rectum prolapse and there was not much they can do right now they refused to do surgery because they said it was not permanent and would not last more then a few weeks and he would be back in for another surgery. So that is the gist of things if you have any questions let me know..
 

ehtansky21

New member
This my momma is all on her own and seems like no one is really taking this little boys case seriously. I have no experience with constipation, so please if you can help with any suggestions that would be so appreciative. This is what she wrote to me, as to what is going on.

blessings,
missa

Here is a little background of what has been going on. In November/december of last year he started having horrible pain so bad to the point he would just lay on the ground and cry until he finally would poop but once he did the stools were always very soft so I didn't understand I had him in ER and urgent care and they always told me he is probably just coming down with a virus it will pass well it just kept happening. So I took him to urgent care again and finally the Dr said enough is enough lets see if we can find something so she did a stool test and found blood so they did an x-ray and said it looked as if he is completely backed up, so she referred us to get in to see GI immediately so in January we started seeing Dr xxxx and he agreed with the Dr at urgent and also diagnosed milk protein allergy because of a rash he has had for a long time. So he took him off all milk and gluten products and he changed his formula and put him on miralax daily it seemed to be doing well then he started having the pains again so he upped his dose of miralax but it just seemed to be a cycle so then a few months ago they did a blood test and said he grew out of the allergy put him back on everything we need to get his weight up and switched him from the peptimin to boost. then it just seemed to keep getting worse he started having rectal prolapse every once in a while, Well about a month ago I had enough he was in so much pain I took him back to ER and the Dr in the ER did an enema and it caused his prolapse to come all the way out but he was not passing the stools so at that point he decided to admit him and transferred us to the childrens hospital while we were there they did nothing but give him a bunch of miralax and send us home. Well on Saturday night his rectum prolapsed again and do I call 911 and they took him to the hospital by the time we got there it went in on its own so they sent us home then on Sunday it did it again 2 times but I was able to reduce it on my own so I decided not to take him in and I would call Dr xxx on Tuesday, well then Monday it started prolapsing every time he went poop and then started bleeding really bad so I took him back and at this point it was stuck out and would not go back in. They decided to have him admitted so he could see a surgeon asap well long story short they did a bunch of test and determined he was backed up again so they did a completed cleanout with a NG tube in his belly and put him back on miralax 2 times a day and basically told me he is going to have the rectum prolapse and there was not much they can do right now they refused to do surgery because they said it was not permanent and would not last more then a few weeks and he would be back in for another surgery. So that is the gist of things if you have any questions let me know..
 

ehtansky21

New member
This my momma is all on her own and seems like no one is really taking this little boys case seriously. I have no experience with constipation, so please if you can help with any suggestions that would be so appreciative. This is what she wrote to me, as to what is going on.
<br />
<br />blessings,
<br />missa
<br />
<br />Here is a little background of what has been going on. In November/december of last year he started having horrible pain so bad to the point he would just lay on the ground and cry until he finally would poop but once he did the stools were always very soft so I didn't understand I had him in ER and urgent care and they always told me he is probably just coming down with a virus it will pass well it just kept happening. So I took him to urgent care again and finally the Dr said enough is enough lets see if we can find something so she did a stool test and found blood so they did an x-ray and said it looked as if he is completely backed up, so she referred us to get in to see GI immediately so in January we started seeing Dr xxxx and he agreed with the Dr at urgent and also diagnosed milk protein allergy because of a rash he has had for a long time. So he took him off all milk and gluten products and he changed his formula and put him on miralax daily it seemed to be doing well then he started having the pains again so he upped his dose of miralax but it just seemed to be a cycle so then a few months ago they did a blood test and said he grew out of the allergy put him back on everything we need to get his weight up and switched him from the peptimin to boost. then it just seemed to keep getting worse he started having rectal prolapse every once in a while, Well about a month ago I had enough he was in so much pain I took him back to ER and the Dr in the ER did an enema and it caused his prolapse to come all the way out but he was not passing the stools so at that point he decided to admit him and transferred us to the childrens hospital while we were there they did nothing but give him a bunch of miralax and send us home. Well on Saturday night his rectum prolapsed again and do I call 911 and they took him to the hospital by the time we got there it went in on its own so they sent us home then on Sunday it did it again 2 times but I was able to reduce it on my own so I decided not to take him in and I would call Dr xxx on Tuesday, well then Monday it started prolapsing every time he went poop and then started bleeding really bad so I took him back and at this point it was stuck out and would not go back in. They decided to have him admitted so he could see a surgeon asap well long story short they did a bunch of test and determined he was backed up again so they did a completed cleanout with a NG tube in his belly and put him back on miralax 2 times a day and basically told me he is going to have the rectum prolapse and there was not much they can do right now they refused to do surgery because they said it was not permanent and would not last more then a few weeks and he would be back in for another surgery. So that is the gist of things if you have any questions let me know..
<br />
 

reagansmom

New member
My daughter is almost 3 and she's had rectal prolapse 3 times. The first time I rushed her to the ER and when they opened her diaper it was gone already. At that point her doctor just said to up her enzymes. The next time I took her to the ER again, they tried to put it back and it didn't work so they sent us home and said to follow up with her doctor in the morning. But that night when she was sleeping and relaxed, I was able to get it to go back. The third time I didn't bother taking her in, I just kinda let her be and when she was more relaxed try to put it back. She didn't seem to be in pain from the prolapse though.
Once it starts it's kinda like a domino effect because the muscles become so weak. I found that more enzymes, smaller more frequent meals and LOTS of fluids helped. Good luck!! I know it looks really bad when it happens, but the Dr.'s never freaked out about it like it was a huge deal. I know it is to us Moms though! Hang in there!
 

reagansmom

New member
My daughter is almost 3 and she's had rectal prolapse 3 times. The first time I rushed her to the ER and when they opened her diaper it was gone already. At that point her doctor just said to up her enzymes. The next time I took her to the ER again, they tried to put it back and it didn't work so they sent us home and said to follow up with her doctor in the morning. But that night when she was sleeping and relaxed, I was able to get it to go back. The third time I didn't bother taking her in, I just kinda let her be and when she was more relaxed try to put it back. She didn't seem to be in pain from the prolapse though.
Once it starts it's kinda like a domino effect because the muscles become so weak. I found that more enzymes, smaller more frequent meals and LOTS of fluids helped. Good luck!! I know it looks really bad when it happens, but the Dr.'s never freaked out about it like it was a huge deal. I know it is to us Moms though! Hang in there!
 

reagansmom

New member
My daughter is almost 3 and she's had rectal prolapse 3 times. The first time I rushed her to the ER and when they opened her diaper it was gone already. At that point her doctor just said to up her enzymes. The next time I took her to the ER again, they tried to put it back and it didn't work so they sent us home and said to follow up with her doctor in the morning. But that night when she was sleeping and relaxed, I was able to get it to go back. The third time I didn't bother taking her in, I just kinda let her be and when she was more relaxed try to put it back. She didn't seem to be in pain from the prolapse though.
<br />Once it starts it's kinda like a domino effect because the muscles become so weak. I found that more enzymes, smaller more frequent meals and LOTS of fluids helped. Good luck!! I know it looks really bad when it happens, but the Dr.'s never freaked out about it like it was a huge deal. I know it is to us Moms though! Hang in there!
 

ehtansky21

New member
thanks kari...that helps alot...i already passed the info on to the mama....

keep the comments coming though...i think she needs a lot of reassurance and direction.

blessings,
missa
 

ehtansky21

New member
thanks kari...that helps alot...i already passed the info on to the mama....

keep the comments coming though...i think she needs a lot of reassurance and direction.

blessings,
missa
 

ehtansky21

New member
thanks kari...that helps alot...i already passed the info on to the mama....
<br />
<br />keep the comments coming though...i think she needs a lot of reassurance and direction.
<br />
<br />blessings,
<br />missa
 

crickit715

New member
they put my daughter on lactulose (stool softener) 5ml 2x daily for her constant constipation and belly issues. she hasnt had rectal prolapse, but she would strain horribly. the lactulose really has helped.
 

crickit715

New member
they put my daughter on lactulose (stool softener) 5ml 2x daily for her constant constipation and belly issues. she hasnt had rectal prolapse, but she would strain horribly. the lactulose really has helped.
 

crickit715

New member
they put my daughter on lactulose (stool softener) 5ml 2x daily for her constant constipation and belly issues. she hasnt had rectal prolapse, but she would strain horribly. the lactulose really has helped.
 
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