My ten yr.old daughter just was released from the hospital having acute abdomin pain. They said she had a muscus block in her upper intestines. But the pain was terrible. They put her on laxatives, yea cf kid on laxatives. Has anyone else had this happen. Does it keep coming back? cf mom
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has anyone else had this happen?
- Thread starter anonymous
- Start date
Hi,my grandson had this happen to him about a year ago and what he went through was so hard to watch.First of all he was born with a blockage this was what lead the Dr's to the cf.We did not have any problems from his intestines until about a year ago,he is now 3yrs old.And like I said it was hard to watch him go through this but one day he was vomiting and complaining of his stomch.We took him to the emergency room in Peroia,for the fact that they seem to have a handle on cf children,and the hospital in our town did'nt.Anyway we found that he had a blockage in his intestines,and was givin some really bad smelling laxative and when I mean bad oh boy when he finally started going my sweet lord it was bad,but it worked.Now they have him on Miralax which keeps him going no matter what.We have'nt had any problems since,but I have noticed that sometimes if he does'nt have his enzymes when he drinks milk or any dairy product he gets stomach cramps so We really make sure that he gets his enzymes even if it is a small amount of dairy.If they continue to have problems ask your dr why and or watch what they eat to see what triggers the pain and you can choose not to feed this to your child or making sure even though a small amount of food give the enzymes.Sandi
Hi,my grandson had this happen to him about a year ago and what he went through was so hard to watch.First of all he was born with a blockage this was what lead the Dr's to the cf.We did not have any problems from his intestines until about a year ago,he is now 3yrs old.And like I said it was hard to watch him go through this but one day he was vomiting and complaining of his stomch.We took him to the emergency room in Peroia,for the fact that they seem to have a handle on cf children,and the hospital in our town did'nt.Anyway we found that he had a blockage in his intestines,and was givin some really bad smelling laxative and when I mean bad oh boy when he finally started going my sweet lord it was bad,but it worked.Now they have him on Miralax which keeps him going no matter what.We have'nt had any problems since,but I have noticed that sometimes if he does'nt have his enzymes when he drinks milk or any dairy product he gets stomach cramps so We really make sure that he gets his enzymes even if it is a small amount of dairy.If they continue to have problems ask your dr why and or watch what they eat to see what triggers the pain and you can choose not to feed this to your child or making sure even though a small amount of food give the enzyme,as for if it comes back well we just keep our fingers crossed and make sure we don't for get those enzymes and his miralax.sandi
Hi,
We had similar problems with my son when he was little. Every six months or so for some three years he would have terrible abdominal pain and vomiting and would end up in the hospital with an intestinal blockage. The diagnosis was "distal intestinal obstruction syndrome" (DIOS), which does occur repeatedly in some people with cf. The whole thing was a nightmare for us, especially since Jordan required two major surgeries for meconium ileus (a severe form of blockage) when he was born, and I was terrified he was going to need more surgery. We tried everything: adjusting his enzyme dose, adding antacids, giving him laxatives and stool softeners, prunes, lots of fluids. The thing that really made the difference, though, was avoiding all milk products. It's not a milk allergy or a lactose intolerance that gives him trouble; it's the milk protein casein, which turns into glue in his intestines. There's a chemical reason for why this is especially likely to happen in the intestines of people with cf, although milk can also cause severe constipation in normal children. (A paper to this effect was published in the New England Journal of Medicine a number of years back). We have to check food labels carefully, since casein is found in foods that are not considered milk products, including soy cheeses and some non-milk dietary supplements.
Anyway, we have had <u>no</u> problems since we removed all casein-containing foods from Jordan's diet, when he was four. The only exception is cultured-milk products (particularly yogurt), which he can tolerate, presumably because the casein in them is partially predigested by the culture bacteria. I have now heard of several other cf families whose kids have had digestive problems with milk. Luckily, there are now many alternative milk-like products available, and Jordan, who is almost sixteen, has become expert at detecting any mention of milk or casein even in the tiniest print on food labels.
Good luck!
Jordan's mom
We had similar problems with my son when he was little. Every six months or so for some three years he would have terrible abdominal pain and vomiting and would end up in the hospital with an intestinal blockage. The diagnosis was "distal intestinal obstruction syndrome" (DIOS), which does occur repeatedly in some people with cf. The whole thing was a nightmare for us, especially since Jordan required two major surgeries for meconium ileus (a severe form of blockage) when he was born, and I was terrified he was going to need more surgery. We tried everything: adjusting his enzyme dose, adding antacids, giving him laxatives and stool softeners, prunes, lots of fluids. The thing that really made the difference, though, was avoiding all milk products. It's not a milk allergy or a lactose intolerance that gives him trouble; it's the milk protein casein, which turns into glue in his intestines. There's a chemical reason for why this is especially likely to happen in the intestines of people with cf, although milk can also cause severe constipation in normal children. (A paper to this effect was published in the New England Journal of Medicine a number of years back). We have to check food labels carefully, since casein is found in foods that are not considered milk products, including soy cheeses and some non-milk dietary supplements.
Anyway, we have had <u>no</u> problems since we removed all casein-containing foods from Jordan's diet, when he was four. The only exception is cultured-milk products (particularly yogurt), which he can tolerate, presumably because the casein in them is partially predigested by the culture bacteria. I have now heard of several other cf families whose kids have had digestive problems with milk. Luckily, there are now many alternative milk-like products available, and Jordan, who is almost sixteen, has become expert at detecting any mention of milk or casein even in the tiniest print on food labels.
Good luck!
Jordan's mom
dear jordan's mom!
i read your letter and i dont know what to say, first of all let me tell you that i have two kids, elder one is a girl and she is allright but my boy who is just 11 months old is having homo cf. i really heared this word first time (cystic fibrosis) i would really like to share my feelings with u bcoz no one want to listen my feellings nobody wants to talk on cf, my baby names Ahmed is really seviour, u wont beleive but once when he was in hospital he got more sick, the oxygen was given on 15 liters but he was still feeling uncomfortable and air hunger. doctors told me that now there is no chance call your husband, it was midnight i called my husband we were really crying bcoz we couldnt do anything for him but fortunately after 4 hours he felt better and doctor said that he is out of order now,
what i would like to know that jordan is now 16 years old mash Allah, so what about his diet, imean to say that i really dont know that what should do ahmed, bcoz he is 11 months old and his weight is just 4.9 kg. yes offcourse im giving him cryon capsule imean that enzymes and i m adding butter in his diet but he is not gaining wait, will u plz guide me plz take my email address, it is FARZEENOVAIS@HOTMAIL.COM
WAITING FOR YOUR REPLY AND ALL CF MOM'S REPLY
i read your letter and i dont know what to say, first of all let me tell you that i have two kids, elder one is a girl and she is allright but my boy who is just 11 months old is having homo cf. i really heared this word first time (cystic fibrosis) i would really like to share my feelings with u bcoz no one want to listen my feellings nobody wants to talk on cf, my baby names Ahmed is really seviour, u wont beleive but once when he was in hospital he got more sick, the oxygen was given on 15 liters but he was still feeling uncomfortable and air hunger. doctors told me that now there is no chance call your husband, it was midnight i called my husband we were really crying bcoz we couldnt do anything for him but fortunately after 4 hours he felt better and doctor said that he is out of order now,
what i would like to know that jordan is now 16 years old mash Allah, so what about his diet, imean to say that i really dont know that what should do ahmed, bcoz he is 11 months old and his weight is just 4.9 kg. yes offcourse im giving him cryon capsule imean that enzymes and i m adding butter in his diet but he is not gaining wait, will u plz guide me plz take my email address, it is FARZEENOVAIS@HOTMAIL.COM
WAITING FOR YOUR REPLY AND ALL CF MOM'S REPLY
To Jordan's mom,
How did the doctor's discover what casein did in Jordans' intestines? Is there a test or procedure they did? I ask b/c I think this might be going on with my daughter. She is 3 and the enzymes just don't seem to be working great. Her belly still gets really big and tight and her doctor says she might have a partial blockage. Her diet consists of a lot of dairy so I might mention this to her doc at her next check up. Thanks in advance for any information you can give me.
PS Before she was diagnosed her pediatrician thought she might be lactose intolerant so we took her off dairy for 2 weeks and she got worse. Now I know she was just starving so maybe should would do better now that she is on enzymes?
Amy
How did the doctor's discover what casein did in Jordans' intestines? Is there a test or procedure they did? I ask b/c I think this might be going on with my daughter. She is 3 and the enzymes just don't seem to be working great. Her belly still gets really big and tight and her doctor says she might have a partial blockage. Her diet consists of a lot of dairy so I might mention this to her doc at her next check up. Thanks in advance for any information you can give me.
PS Before she was diagnosed her pediatrician thought she might be lactose intolerant so we took her off dairy for 2 weeks and she got worse. Now I know she was just starving so maybe should would do better now that she is on enzymes?
Amy
Dear Amy,
The doctors didn't identify casein as the culprit. We took Jordan to three different CF centers and no one could figure out why he kept blocking up. They prescribed lots of laxatives, pugatives and tests, culminating in an upper GI series with barium that aggravated a partial blockage so badly that he almost needed more surgery. For a while, one strategy or another would seem to be helping a little, but a few months later we would be in the hospital with another blockage. Fortunately, one resident mentioned that he thought milk could sometimes be a problem for unknown physical reasons. Because I have scientific training, I started experimenting with milk. We did tests for milk allergy and lactose intolerance, both of which came up negative. I tried whole vs. nonfat milk, but it made no difference. I took Jordan off all milk, and he went longer between blockages, but they didn't disappear. Then I noticed that the soy cheese and the non-milk formula we were giving him contained casein. And I remembered an experiment we had done in ninth-grade science. We took milk, added vinegar (which is acidic), heated the mix, and filtered out the water. The result was a glue that we were told had been produced by physical changes to the casein in the milk (I still have the little piece of paper that I stuck into my notebook with that glue). Now think about the intestines of a person with cf. There's a higher level of acidity than you would typically find in a person w/o cf. And there's a tendency for the intestinal contents to be dehydrated because of the imbalance in salt and water transport that's characteristic of cf. And it's nice and warm in the gut. Bingo: great conditions for casein to turn into glue.
Some doctors were pretty skeptical, and I remember one nutritionist who probably thought I was a bit of a nut. But that changed when the New England Journal of Medicine published an article (vol. 339, pp. 1100-1104, 1998, if your doctor hasn't seen it) showing that even kids without cf can sometimes develop chronic, debilitating constipation from milk. Recently, at a cf education day, one of the speakers was a gastroenterologist who had treated Jordan when he was little. When some parents raised the question of recurrent blockages, the doctor confirmed our experience that milk can contribute to the problem.
Also, I have two friends whose daughters with cf (one a teen and the other aged 20) have suffered from abdominal bloating and discomfort for years. They both tried going off milk products this year, and the bloating resolved within days.
A couple of other suggestions. If your daughter is not on lactulose, you might try that. It's a sugar that helps draw water back into the stool to soften it. Ask your doctor about it -- you need a prescription. In addition if your daughter is on an enzyme other than Pancrecarb, she might need an antacid to help release the enzyme from those little beads when it's needed in the small intestine. We use plain calcium-magnesium capsules (Mylanta or your drug store's generic equivalent -- two capsules per meal), both because they seem the safest choice and because they give Jordan the calcium he cannot get from dairy foods. A 3-year old probably wouldn't be able to swallow such large capsules yet, but I believe you can also get calcium/magnesium supplements in liquid form. I can look into this if you're interested.
I hope at least some of this is useful for you. If there is any other way in which I can help, please let me know.
Take care,
Bambi, Jordan's mom
The doctors didn't identify casein as the culprit. We took Jordan to three different CF centers and no one could figure out why he kept blocking up. They prescribed lots of laxatives, pugatives and tests, culminating in an upper GI series with barium that aggravated a partial blockage so badly that he almost needed more surgery. For a while, one strategy or another would seem to be helping a little, but a few months later we would be in the hospital with another blockage. Fortunately, one resident mentioned that he thought milk could sometimes be a problem for unknown physical reasons. Because I have scientific training, I started experimenting with milk. We did tests for milk allergy and lactose intolerance, both of which came up negative. I tried whole vs. nonfat milk, but it made no difference. I took Jordan off all milk, and he went longer between blockages, but they didn't disappear. Then I noticed that the soy cheese and the non-milk formula we were giving him contained casein. And I remembered an experiment we had done in ninth-grade science. We took milk, added vinegar (which is acidic), heated the mix, and filtered out the water. The result was a glue that we were told had been produced by physical changes to the casein in the milk (I still have the little piece of paper that I stuck into my notebook with that glue). Now think about the intestines of a person with cf. There's a higher level of acidity than you would typically find in a person w/o cf. And there's a tendency for the intestinal contents to be dehydrated because of the imbalance in salt and water transport that's characteristic of cf. And it's nice and warm in the gut. Bingo: great conditions for casein to turn into glue.
Some doctors were pretty skeptical, and I remember one nutritionist who probably thought I was a bit of a nut. But that changed when the New England Journal of Medicine published an article (vol. 339, pp. 1100-1104, 1998, if your doctor hasn't seen it) showing that even kids without cf can sometimes develop chronic, debilitating constipation from milk. Recently, at a cf education day, one of the speakers was a gastroenterologist who had treated Jordan when he was little. When some parents raised the question of recurrent blockages, the doctor confirmed our experience that milk can contribute to the problem.
Also, I have two friends whose daughters with cf (one a teen and the other aged 20) have suffered from abdominal bloating and discomfort for years. They both tried going off milk products this year, and the bloating resolved within days.
A couple of other suggestions. If your daughter is not on lactulose, you might try that. It's a sugar that helps draw water back into the stool to soften it. Ask your doctor about it -- you need a prescription. In addition if your daughter is on an enzyme other than Pancrecarb, she might need an antacid to help release the enzyme from those little beads when it's needed in the small intestine. We use plain calcium-magnesium capsules (Mylanta or your drug store's generic equivalent -- two capsules per meal), both because they seem the safest choice and because they give Jordan the calcium he cannot get from dairy foods. A 3-year old probably wouldn't be able to swallow such large capsules yet, but I believe you can also get calcium/magnesium supplements in liquid form. I can look into this if you're interested.
I hope at least some of this is useful for you. If there is any other way in which I can help, please let me know.
Take care,
Bambi, Jordan's mom
Dear Ahmed's mom,
My heart goes out to you and your family for all you have had to go through this year. I know how awful it is to watch your child suffer when he is so little and vulnerable.
All kids with cf have a hard time gaining weight when they have a lung infection. So it's really important to keep your child's lungs as clear as possible. For Jordan, that has meant taking inhaled medication four times a day and doing chest physiotherapy at least twice -- three times when he's sick. In addition, we (and our doctors) decided it was important for Jordan to avoid people with the flu, colds, or coughs, especially when he was very young and his airways were tiny. I know some people believe that that young kids with cf need to be exposed to germs to "build up their immune systems", but that is not my interpretation of the scientific evidence (more on that in a later post). Right now, at any rate, your son is having a really difficult time, and it seems as though it might be worth being a little overprotective with him until he's bigger and his condition is more stable.
We also had difficulty with Jordan's weight in the first year, especially since his intestines were raw and bled easily from his two surgeries. We couldn't feed him more than a small amount at a time, or he'd hurt and start to bleed all over again. Here are some of the things that worked for us:
First, we fed him mainly a formula called Pregestimil. This is already partially digested and contains a type of oil (MCT) that kids with cf can absorb especially easily. Another formula, called Alimentum, is very similar. They are both expensive, but you may be able to get insurance to pay at least part of the cost if your doctor writes a letter explaining that the supplement is medically necessary. You can also get a bottle of the MCT oil alone, which you can add either to the formula or to Ahmed's food to increase calories.
Second, we fed Jordan small amounts every two hours round the clock, except for a four-hour break at night. This was a really hard on me, but not on Jordan, as he would suck in his sleep. I wouldn't recommend it if you have to get up and go to work in the morning or if it keeps Ahmed from getting his sleep. However, it did help put the weight on Jordan.
Third, when we found that Jordan was unable to digest about one-quarter of the fat he ate, even with enzymes, we started giving him antacids with the enzymes, which cut the amount of fat he was dumping considerably. See my previous post to Amy for more details.
When Jordan got older, we decided to focus on increasing his calories with the healthier fats found in vegetable oils, nuts, and fish; we have tended to avoid much in the way of animal fats or junk foods. But I encourage you to experment to find out what works best for Ahmed and your family. If he continues to have difficulty gaining weight, there is the possiblity of having a feeding tube put in so that he can get nourishment even when he's sleeping. It wouldn't be my first choice, but it has worked well for some people.
Let me know if any of this helps or if you have other questions. I am hoping you will have an easier time in the coming months.
Bambi, Jordan's mom
My heart goes out to you and your family for all you have had to go through this year. I know how awful it is to watch your child suffer when he is so little and vulnerable.
All kids with cf have a hard time gaining weight when they have a lung infection. So it's really important to keep your child's lungs as clear as possible. For Jordan, that has meant taking inhaled medication four times a day and doing chest physiotherapy at least twice -- three times when he's sick. In addition, we (and our doctors) decided it was important for Jordan to avoid people with the flu, colds, or coughs, especially when he was very young and his airways were tiny. I know some people believe that that young kids with cf need to be exposed to germs to "build up their immune systems", but that is not my interpretation of the scientific evidence (more on that in a later post). Right now, at any rate, your son is having a really difficult time, and it seems as though it might be worth being a little overprotective with him until he's bigger and his condition is more stable.
We also had difficulty with Jordan's weight in the first year, especially since his intestines were raw and bled easily from his two surgeries. We couldn't feed him more than a small amount at a time, or he'd hurt and start to bleed all over again. Here are some of the things that worked for us:
First, we fed him mainly a formula called Pregestimil. This is already partially digested and contains a type of oil (MCT) that kids with cf can absorb especially easily. Another formula, called Alimentum, is very similar. They are both expensive, but you may be able to get insurance to pay at least part of the cost if your doctor writes a letter explaining that the supplement is medically necessary. You can also get a bottle of the MCT oil alone, which you can add either to the formula or to Ahmed's food to increase calories.
Second, we fed Jordan small amounts every two hours round the clock, except for a four-hour break at night. This was a really hard on me, but not on Jordan, as he would suck in his sleep. I wouldn't recommend it if you have to get up and go to work in the morning or if it keeps Ahmed from getting his sleep. However, it did help put the weight on Jordan.
Third, when we found that Jordan was unable to digest about one-quarter of the fat he ate, even with enzymes, we started giving him antacids with the enzymes, which cut the amount of fat he was dumping considerably. See my previous post to Amy for more details.
When Jordan got older, we decided to focus on increasing his calories with the healthier fats found in vegetable oils, nuts, and fish; we have tended to avoid much in the way of animal fats or junk foods. But I encourage you to experment to find out what works best for Ahmed and your family. If he continues to have difficulty gaining weight, there is the possiblity of having a feeding tube put in so that he can get nourishment even when he's sleeping. It wouldn't be my first choice, but it has worked well for some people.
Let me know if any of this helps or if you have other questions. I am hoping you will have an easier time in the coming months.
Bambi, Jordan's mom
Dear Bambi,
Thank you so much for your post.....it is very informative and I can't wait to talk to Allie's doctor about it. She has a visit coming up on the 21st. Wish me luck!!!
BTW... by reading all of your posts,you sound like a great mom. I hope I can raise Allie as well as you seem to have Jordan <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thank you so much for your post.....it is very informative and I can't wait to talk to Allie's doctor about it. She has a visit coming up on the 21st. Wish me luck!!!
BTW... by reading all of your posts,you sound like a great mom. I hope I can raise Allie as well as you seem to have Jordan <img src="i/expressions/face-icon-small-smile.gif" border="0">
Yes, I am a 26 yr old patient in Huntington Beach, CA. I have had extensive intestinal problems throughout the duration of my life.... they can reoccur every once in a while, though in my case, they rarely resurface in such a horrendously painful manner. For me, the blockages no longer occur, just the occasional discomfort. Once I hit about 18 or so, the blockages stopped, for the most part. If you or anyone else wants to email me, my email is RenzoHoward@hotmail.com