Malabsorption pain

[lovemygirl]

My daughter is 5 and has severe disgestive issues (that is how she was diagnosed). We have just increased the enzymes doses to try and stop the constant tummy pains and malabsorption but it doesn't seem to be working. My question is.....what do people do to relieve their pain? Is there something I can do to make the stomach pains go away. I gave her a warm bath tonight and that seemed to work, but it may have just been distracted.
Any tips would be appreciated.

 

[julie]

Is she eating all completely solid foods (not as in baby food/real food-but as in NON-liquid foods)? My husband use to have a lot of problems until he started putting more "liquid" meals or snacks into his diet. Now he pretty much eats one meal solid, one meal liquid, one meal solid, one meal liquid.... and so on. His "liquid meals" are Boost Plus shakes or some sort of other supplement shake (weight gainer/body building, I would NOT recommend it for a young child!).

Maybe try something like this?

 

[cheynne]

Hey,
I had severe digestive problems till the age of about 7. I frequently missed in excess of 2 or 3 days of school a week. I found that high protein milkshakes significantly made a difference. They are already partly hydrolised, so it's less work to break down and absorb, and are also great for putting on weight. If I remember correctly, there was a milkshake designed specifically for younger people...Ensure, i think. or Vital.

A warm bath definatly helps with stomach aches - or invest in some buscapan (sp?), a weak but effective painkiller.

Right now I use Extreme Care, Vital, and everything from caramel, marmite and mayonaise in my feed. Actually makes it kinda fun to mix it - I never know what i'll find in the fridge =P

 

[JazzysMom]

An increase in enzymes isnt always the answer. For me an increase can cause constipation. Sometimes a change in the type of enzymes is needed or an adjustment to the amount according to the type of food she eats each time she takes them. She might have a problem like lactose intolerance or acid reflux. Does her problem seem to be when dairy is included or all the time & does she take any type of antacid? In addition just keeping enough water/liquids in her to keep things moving well can be the simple solution. My daughter (non CF) always has tummy aches. She takes after her father (non CF) who has had surgery for blockage. I always ask if its heartburn, cramp, feels like gas or poop is stuck. We have been pretty good about distingushing the problems. Maybe because I know what is like with the digestive issues so I know what it feels like & can direct the ??? accordingly. Until we can alleviate the actual problem, I rub my daughters stomach & lower back to ease the pain. I have even done this while she is sitting on the toilet which only a Mother can do let me tell you. LOL. Heat & a light massage will help it pass whether it be from gas, poop or just general discomfort. I hope you get some help for her with our advice.

 

[lovemygirl]

She eats mostly solids and I do have trouble getting her to drink as much as I would like. Now that she is in school I have even less control, and I hate to ask the teacher since she is dealing with 25 kids and there are others with "issues" as well.
I have tried homemade shakes and she doesn't like them much. She is not a big sweet person, and dislikes chocolate so that limits the store bough shakes (I think). She does have acid reflux and is on prevacid, and the increase in enzymes is not doing the trick.
I will discuss lactose intolerance with the team at next clinic because there are a lot of people on my husbands side with lactose intolerance, so it could be an issue.
Thanks for the input.

 

[Mayasmom]

My daughter is having the same problem. It started about three weeks ago. We tried to flush out the "sludge" by giving her a laxative, Miralax, prescribed by her doctor. It made her poop runny but the stomachache didn't stop after the dose was completed. Now we are trying Prevacid to rule out acid reflux. I really don't think that's what it is. The doctor also suggested that it may be lactose intolerance but can that be developed all of a sudden? She's been drinking milk for 7 years and gets a significant amount of her daily calories from milk and yogurt. I tried giving her Lactaid milk yesterday but she hated it --even with chocolate syrup in it. Our doctor said it would also be adhesions from previous surgeries (she had meconium illeus when she was born) or it could also be Distal Intestinal Obstruction Syndrome (DIOS). I am making an appointment with a GI doctor. It is so hard, there's nothing that I can do to help her and sometimes she looks like it really hurts. Any suggestions?

 

[anonymous]

My son is only 15 months and doesn't seem to have tummy aches, at least that I can tell. One thing we have done since he was 3 months old is probiotics (acidophilus). These are the beneficial bacteria we are suppose to have in out guts to help digestion, among other things. I swear by it for my non-cf daughter as well when she had a tummy virus or pain. Culterelle is a clinically proven brand and all you need to do is sprinkle a capsule on a non-acidic food or if she can swallow pills have her take one daily. She may need 2 daily at first to help get things under control.

You may also want to try Omega 3 supplementation. We give our son 1/4 to 1/2 tsp a say of Nordic NAturals citrus flavored oil. Omega 3 can help break the inflamation cycle tremendously and may help calm her GI tract down a bit. What is her diet like? We have found dairy to be a huge irritant to his GI tract as well as too much non-Omega 3 oils (ie vegatable, palm, cottonseed). Often, cutting out dairy for awhile in conjuction with the acidophilus and Omega 3 can do the trick. [we have non-cf friends who have tried these things for other inflammaory problems like IBS and joint pain with amazing results] The Omega 3 Diet is a great book to read. If you are concerned about calories without dairy, soy products have come along way and we add olive, walnut, canola, and MCT oil to his dishes to get calories in there. There is also a great tasting Rice Protein powder out there for high calorie smoothies.

For acute pain, have you tried camomile tea with honey or agave nectar? 2-3 times a day maybe. It can really calm things down as well.

Jody mom to Ben 15 months w/ cf; Julia 5 1/2 w/o CF
jody@meta4tech.com

PS I am not a doctor, this is just mommy experience

 

[anonymous]

There are lots of different kinds of tummy aches we have and differing causes for them. Unfortunatly she's young and might not be able to distinguish them all quite yet. I suggest taking time to figure out the different aches she has and give them names so she can tell you what's going on. I know gas feels different than colon pain which is different than forgetting to take my enzymes, ect...

Keeping an eye on her stools will give you more info on what to do. If they are very greasey and bulky, the increase in enzymes is good and maybe lower the grease in her diet. If they are well formed, it may just be gas. If she is constipated, a spoonful or two of milk of magnesia (sp?) will bring quick relief. Some of us take laxitives regularly to keep things moving.

I also think the sugestions on diet are really good. I know it can be easy to forget about variety of healthy food when your just trying to pack in as many calories as possible, but make sure she's getting the fiber she needs.

Debbie
24 w/ CF

 

[anonymous]

There are lots of different kinds of tummy aches we have and differing causes for them. Unfortunatly she's young and might not be able to distinguish them all quite yet. I suggest taking time to figure out the different aches she has and give them names so she can tell you what's going on. I know gas feels different than colon pain which is different than forgetting to take my enzymes, ect...

Keeping an eye on her stools will give you more info on what to do. If they are very greasey and bulky, the increase in enzymes is good and maybe lower the grease in her diet. If they are well formed, it may just be gas. If she is constipated, a spoonful or two of milk of magnesia (sp?) will bring quick relief. Some of us take laxitives regularly to keep things moving.

I also think the sugestions on diet are really good. I know it can be easy to forget about variety of healthy food when your just trying to pack in as many calories as possible, but make sure she's getting the fiber she needs.

Debbie
24 w/ CF

 

[lovemygirl]

It has been a few days since she had the tummy pain, but I thought I would write again because of some of the postings. She is already on prevacid for reflux and it seemed to help in the past with weight gain. She went off it once and then lost some weight so they put her back on. She is also taking probiotics three times a day.
The dietician has suggested a mild case of DIOS as well but we can't get an appointment with the gastro for various reasons (you have to love our medical system... Canada).
Our daughter says the pain is right behind the belly button. I know when she is malabsobing it is usually on the sides, but the pain at the belly button has me wondering. I have been trying to give her more liquids and so far so good.
Generally speaking, she is not on the high fat diet because she doesn't do well and will malabsorb all the time. She eats a very healthy diet, but we also allow for treats.

 

[JazzysMom]

Right behind the belly button could be the area of a hernia also. Remember we do an awful lot of coughing so anything is possible. I know some hernias show a bulge, but I dont know if all do. I dont think so because my Mom had one which was painful to the touch, but didnt protrude out. Just a thought!

 

[anonymous]

My 4 year old seems to have more belly probelms than lung right now, about 3 times a year he will get an obstruction and not beable to have a stool, then he can't eat and he is in severe belly pain and vomits alot, you can actually hear his belly. He is normally on laxatives daily (lactulose 2 tsp twice a day and Miralax every day). We have found out that he can't eat popcorn, corn, peanuts, grapes(peels). When he gets like this we have to give him enemas(with mucamyst) until we get it passed thru. He also had the bowel obtruction at birth and I sometimes wonder if something is not put together in there right. He just had one of these obstructions last week, he is such a good sport. I wish he didn't have to go thru all that pain!

 

[anonymous]

Have you tried Zantac? This helped my daughter.<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/rose.gif" border="0">

 

[anonymous]

I'm glad that you explained that she's not on a high fat diet, that was going to be one of my questions.
My other thing is to reiterate what someone else mentioned, possibly an umbelical hernia? I always had an outie belly button & just thought I was unique. Turns out it was an umbelical hernia that they didn't catch until adulthood when I had surgery for another hernia and they repaired the umbelical one at the same time.
One other reach.....has she had stomach surgery at birth or any other time? I wondered if it could be pressure from scar tissue?

 

[Mayasmom]

Thanks for the suggestions. Maya started Prevacid last week and it did the trick! The belly aches are gone and she's eating better too. She has been on Culturelle once daily for several months. I think I'll read the Omega 3 book and perhaps try that too. I read up on it a while back and asked her CF doc about it. He said that there were no findings that it helped in CF children, but that it wouldn't hurt to try. I never did because I couldn't find capsules that are small enough to swallow. The liquid won't fly with her...
Thanks so much; its great to have other parents to talk to!

Lucy (mom to maya 7 w/ CF and Nina 4 w/o CF)

 

[anonymous]

Gotta tell you my story, since I struggled with my sons stomach aches for YEARS before FINALLY finding resolution. Step 1: First we discovered at age 3 that he has cf. We thought the stomach problems would subside, they did NOT. Even after much experimentation and changing of enzymes. Step 2: We finally thought he was lactose intolerant and INSISTED on having the test run. Well, the test showed that he was NOT lactose intolerant, BUT that he did have bacterial overgrowth of the bowel. Step 3: He started taking an anitbiotic to clear up the bacterial overgrowth (1 week of Flagyl) and a daily probiotic (cuturelle to replenish "good" intestinal bacteria). He remained on the probiotic for almost a year. I still give it to him occasionally.

Probiotics may not be the answer alone (as I see another poster suggested using probiotics), but in combination with something to kill the bad bacteria you may find resolution.

For the longest time my son could not drink milk. It was such a struggle. The signs of bacterial overgrowth can mimic the signs of lactose intolerance so my son could not handle milk (he could however handle other dairy products).
Good luck!
Jena

 

[anonymous]

Lovemygirl,

I am 33, and was diagnosed at birth with CF. My first and only manifestation of CF for the first 6 years of my life, despite all efforts, was malnutrition, though nowadays I serve as a standard for CF symptoms and problems. However, regarding your issue, ever since I can remember, I have had the seemingly random stomach/liver cramps, which get to be so painful that they leave me bent-over double, sweating, not being able to breath. They sometimes are brief, 7 seconds (straight), other times they have lasted as long as 35 minutes (straight without allaying). The only thing that seems to help with resolving the pain/cramp is a heat source in the form of a very warm/hot heating pad/heated sand-seed bag, and or sometimes a warm liquid with something like saltine crackers. For lack of a better explanation, the food it seems gets my digestive system to remember that it is there to digest and not cramp.

I am not sure if your child's experiences are the same, but I hope this helps. Best of luck.

Lance

 

[lovemygirl]

Lance,
Thank you for the reply. I read your posting and my gutt (pardon the punn) says that this is probably the best solution for my daughter. She had some pain last night but it seemed to pass quickly so I didn't pay too much attention to it. Next time it is more painful I will try your advice, and I will go out and get a heating pad (or something similar) that she will like and it can be her own.

Thanks again!

 

[JennifersHope]

Believe it or not in spite of my many, many lung infections I was dx when my pancreas became insufficient.. The pain I felt was so horrible, I was bent over in half... and I lived in the bathroom....

What helped me was the enzymes.. I was put on Pancrease Mt 20 and it made all my pain go right away.... When I don't take enough enzymes or when I think that I don't really need them.... the pain comes back pretty fast... What helps me during that pain is hot baths, hot packs and any heat source....

I would also consider probiotics/acidophilis because also you can have an overgrowth of bacteria in the belly like the other poster said... I have had the WORST stomach pains when I have had this.. Cramps so bad... I am just getting over an other episode of this and what worked was Flagyl, and Proboitcs...

Hope your daughter feels better soon,

Jennifer
33 w Cf and Addisons