Hard to cope sometimes

[anonymous]

<img src="i/expressions/brokenheart.gif" border="0">Hi have been browsing this website for a while. I have a little bubby Benjamin 6 months with CF diagnosed from 4 days old when he had a blocked bowel. He spent the first 6 weeks in hospital after an operation which they removed 20 cm of his bowel. We have been coasting along great for 6 months but had our first trip to the hospital last week. Finally home again with many sleepless nights. He was in hospital for a gastro problem and has been pooing like you wouldn`t beleive. I was just wondering if i should cut back his enzymes to half as i have been advised to do so. Mind you the diarrea problem is not even cf related but because he has a short gut everything is going through. Is there any one out there with the same problem? Benjamin poos about 8 times a day normally and through the night, but since this problem has arisen its about 20 times a day. Was just wondering if anyone could help as his bottom is red raw and bleeding. I have tried every cream you could think of any ideas i would be so grateful. It just breaks my heart to see him suffering like that and i feel like it could have been prevented. Sometimes i have so many different doctors telling me so many different things. Still learning i suppose.

Donna 2 w/o cf 1 w/cf

 

[anonymous]

I am sooo sorry to hear about your plight. What a heartbreak.

Have you ever heard of Aquaphor/maylox?

The aquaphor is like vasaline and puts a protective coating on the bum and the maylox takes the sting out like it would in your belly.

You can make it at home but my dr. writes and RX and they blend it up for me. Kayla really responded well to it when she had bouts of diareah. Not sure it would help you but you could ask your doctor.

Good luck to you

 

[anonymous]

Sorry, forgot to log in

Karen ~ wife to Troy

 

[anonymous]

hi, i belong to another forum that is for parents of little ones with cf and there is always poop talk going on.. lol.. one person mentioned *burnt flour* I have never actually used it, but have heard it works wonders, there is also someone on the forum who has had a portion of their bowels removed.... if you want to look up the posts the link is...


<a target=_blank class=ftalternatingbarlinklarge href="http://health.groups.yahoo.com/group/CF_Infants_Toddlers/?yguid=199756536
">http://health.groups.yahoo.com...lers/?yguid=199756536
</a>



lots of good info for ppl with little ones,


Melissa mom to dylan 7 no cf and caleb 4wcf

 

[Diana]

Is it the CF clinic doctor who told you to cut back the enzymes? Since enzymes help to absorb the fat in food I would assume that cutting back would have an even worse outcome. Of course I am not a doctor though but it does sound strange.

My daughter has significant malabsorption problems which causes diarrea and reducing enzymes even slightly brings on the problem almost immediately.

It is hard when there are so many different opinions. All you can do is become as educated as possible and make sure you are directly involved in all health decisions made.

Sorry I can't help with the cream products as I am in Australia and we tend to have completely different brands to you guys.

 

[anonymous]

I agree with Dee. Cutting back on enzymes would cause even more stooling. Sounds like he is not getting enough enzymes. Do you see a nutritionist? They usually help with the enzyme issues.

Maria (Sami's mom)

 

[anonymous]

For the diaper rash, ask your dr to rx "magic butt paste". Or ask the pharmacist, some don't require an rx, depending on their formulation. It's been years since we've used it so I can't remember what all is in it. I know zinc oxide, I think maybe a small amount of hydrocortisone? and something else that I can't remember but seems like it's something weird?? Maybe someone with a little one will know??? Anyway, it worked wonders for my dd.

 

[anonymous]

My daughter also has "short gut". She had about 33 cm taken out, but she is 7 1/2 years old now and seems to be doing good, except for the psuedemonas.

She used to poop a lot and still does sometimes! Maybe your child should change enzymes. Emily has taken Creon 10 since she was about 4 months old, before she took some enzymes with a powder inside, but she was losing weight with those.

As far as the butt problem, I used the "burnt flour" and it cleared up everything fast! Just take regular flour, brown it in a fry pan (I use to just get it a little yellow), then put it in a shaker bottle (I used a spice bottle), shake it on the butt and it will work like magic.

It is hard to cope sometimes. Emily was hopitalized for 18 days in February due to increased, wet cough. They thought she was allergic to the one medicine that her strain of psuedemonas might be subseptible to, that is why we were in so long.

Last week she started throwing things and yelling about how much she hated CF. She hates to take all her medicines, she hates to do her treatments, and she hates her scar on her stomach because she will "look awful when I wear a bikini". Keep in mind that she is only 7!

Her CF doctor suggested that we try some sort of counseling, but as a single parent of 2 kids (only Emily has CF) it is hard to find the time!

Thanks for letting me vent a little too.

 

[PeterC]

Donna:

I am a 57 year old with CF diagnosed at age eight.

I had a bowel obstruction at birth that required surgery also.
As far as I know they did not remove any of my intestines at that time but I had
another obstruction at age 38 and had surgery that removed about half
of my small intestine. So I may know a little bit about your situation.

Having a shorter digestive system may not be the main cause of the loose stools!
The biggest change should be shorter times between poops. If the gut is healthy
there should be little change in the quality of the poop, in my opinion.

This is a struggle I have had to deal with all my life.

Question...

Does your child take any antibiotics right now? If so it is a good chance that
they may be causing the problem. Antibiotics kill the natural bugs in the gut
needed to digest food. The enzymes being given may not be adaquate to make
up for the loss.

A good way to bring the natural digestive environment back to health would be
to introduce a high quality probiotic to your childs food in the A.M. (better known
as acidophilus) Do this in addition to his enzymes.
It is a natural way to restore the normal flora in the gut that is
so important for good digestion. You can crush it into a powder and add it to his
food. It is completely safe if taken as directed. No prescription needed!
Talk to your Pharmacist and get his opinion.

There are also ways to make the poop get firmer by changing his diet.
There is lots of info on the net about the things you can try.

Hope the discomfort ends soon!!!

Best of luck and let us know how you make out!!

Sincerely:

PeterC 57 / cf
Peter Campanale

 

[anonymous]

Hi Donna,

Sorry to hear that Benjamin is not feeling well at the moment. We went through a similar situation with our now 16mnth old daughter, although she didn't need to have bowel surgery she still had pooing issues.

In responce to your question, i don't think cutting down on his enzymes is a good idea. It might just make things worse ie. he will poo even more, as he will not absorb as much.

As for his sore bottom, i had the same problem with my daughter her bum was soooo red raw, and was bleeding.
I too am from Australia, but i'm certain that they have a cream called <b>Desitin</b> over there.
If that doesn't work try <b>raw egg yolk</b> and let it air dry on his bottom. Also let the air get to his bottom as often as you can, ust leave his nappy off for a few hours in the day. That is the only thing that helepd my daughter in the end, when it got really bad.

I hope this helps, if you have any more questions just ask away.

Reagards Eli (not logged in, my computer won't let me)<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

Something called Triple Paste, applied at every diaper change, to treat or prevent problems, really heped us. This was recommended by his CF doc.
Good luck!

 

[anonymous]

Triple Paste is my recommendation too. I know Walgreens carries it here. A little expensive, but totally worth it. Did you happen to switch formula recently?
This happened with our little guy at about 6 mo. When we went from breastmilk to Enfamil Lipil. They switched him to Pregestimil with no problems. The stuff tastes terrible, but frankly my little guy didn't seem to notice.

 

[anonymous]

hi dee
I am also from Australia guess i should have mentioned that. As far as the enzymes are concerned benjamin has always needed more than they advised anyway so that is why i was confused when i was told to cut them back as well because i thought it would make the problem worse as well. I just get so many conflicting stories, but it wasn`t the clinic who told me to cut back it was my pediatrician. Sometimes i don`t know if they know what they are talking about. As far as the creams are concerned i think i have used every one from the chemist. There is one that i get from the mater hospital but i cant get it at the moment. Just what i need. Thanks for your reply though sometimes it can help

Donna benjamin w/cf 6 months

 

[anonymous]

hi maria
I think i agree with both of you. I guess i`ll just wing it as i feel ben needs more than i have been told. Do you know if it harms them to have more enzymes than they say. Yes i do see a nutritionist but that only advise me to give 1 enzyme to 4 grams of fat. He is on 5000 creons. Thanks for you help though i will put him back to what he should be having

donna
mum to benjamin 6mths w/c/f

 

[anonymous]

hi
good to hear from someone who1s in the same boat as me. Is there ever a time that they don`t poo through the night? and did emily need more enzymes than normal? They have given me a script for the 10 000 creon but haven`t filled it as yet as we were in hospital before i could fill it. Maybe they will work better. Did emily have problems with her chest early or was she a bit older? Sorry bout all the questions but its good to talk to someone with the same problem. I was hoping that ben may not have as much trouble with his chest cause he has more of the bowel problem. Just hoping I suppose. I have 2 older children without cf so ben is my first and i have so many questions
thanks
donna mum to benjamin 6 months w/cf

 

[anonymous]

Peter
thanks for your advice. Yes he has been on an antibiotic at the moment since he has been in hospital. As far as ascidophillas (think i spelt that one wrong) is concerned is that like yoghurts and things like that i asked my diatician and she said ben is too young at the moment but it makes sense to me though. Will definately ask them more questions about what you have said. Thankyou so much for your help peter you don`t know how much all this info helps

Donna mum to benjamin 6 months w/cf.

 

[PeterC]

Donna:

You are dealing with a very serious situation with your little boy. His digestive system is still forming and it is important to get him back to a level of digestive health that will help to insure his future is bright.

In my opinion you will no get good enough advice from a dietitian. There training in nutrition at the cellular level is very minimal. You need to find a well qualified Nutritionist to get a clear picture of what you can do to help your son.

Acidophilus is a very important factor in restoring healthy flora in the gut. You will find it in yogert but only if the yogert has been unadulterated, not heated, nothing added during processing. It has to be live yogert culture. Even so there may not be enough in it to make a big enough difference in a short amount of time.

Acidophilis pills usually have 1,000,000,000 (one billion) live bacteria in them. It seems like a lot but it really is a small quantity compared to what a healthy gut holds. So it is important to give it as a supplement on a daily basis especially during and after a period of taking antibiotics. It should be given several hours after an antibiotic dose is given otherwise it will do no good. The good bacteria will be killed off.

All of the research I have done on the subject has indicated no adverse reactions to taking Acidophilis but you should consult with a Nutritionist and a Pharmacist about it since your child is so young.

You can find a slew of information on the inertnet to help you with your situation!
Just Google "antibiotics, digestion" "childrens digestion, antibiotics" and anything else that might relate to your problem. There are many studies done by prestigious labs around the world having to do with your situation that make their information avaliable on line.

Here is a link that might help...

<a target=_blank class=ftalternatingbarlinklarge href="https://www.keepkidshealthy.com/symptoms/diarrhea.html">Text</a>

Sincerely:
PeterC Peter Campanale 57 / cf
campanaledesign@netzero.net

 

[anonymous]

When DS was 6 months old, our doctor basically told us to feed him whatever we were eating. Just grind it up. He started eating a LOT of yogurt. Was one of his favorite foods. We still gave him formula, but he also got baby food with butter and salt added, ground up casseroles....

DS was put on augmentin last year for a sinus infection and he had really nasty, liquid stools. At that time I bought acidopholus milk and lots of yogurt products. I also UPPED his enzymes by half a capsule. I didn't have to see about probiotics or supplements, because that seemed to do the trick in helping firm up his stools.

Poor little guy also discovered the joys of playing in the sandbox at preschool, so I practically had to hose him off in the tub when he got home instead of changing his diapers. He got at least two or three baths a night to soothe his bottom and I used butt paste -- criticaid by sween (bazaa) was the brand. Think it's commonly used by disabled people with bowel and incontinence problems, so check with your pharmacy or medical supply company. I'd put a thick coating of that on each night and morning and it would protect his skin and help dry/heal it.

Liza aka ratatosk

 

[2005CFmom]

I agree with Peter, check into giving a probiotic. We are currently giving our daughter "Jarro-Dophilus" and it says it is for all ages. She was recently put on antibiotics for her sinuses and her stools became very loose. We started her on the probiotics and they became formed again in only a matter of 1 or 2 days. We were away for the house for a few days and she was not taking the probiotics and they became loose again. It really has done wonders for her. Just don't give the probiotics (pb) and antibiotics (ab) at the same time, otherwise the ab could kill all the good bacteria in the pb.

 

[anonymous]

HI, my daughter now aged one on Saturday was borned with meconium illeus and she also had excatly 20 cm removed from her bowel. They then had to remove some more after she had her illestomy closed. Your child shouldnt really have short gut symptoms as i was told that 20cm is nothing to worry about.
i am from the UK where CF treatment is excellent. I am by no means an expert but from what your saying the soreness and bleeding sounds like too little creon (enyzmes) and 20 poos also sounds like not enough....it certainly doesnt sound like too much. How much does your child weight as roughtly it about 1 kg per micro creon 10,000 tablet. Ruby uses micro granules but im not sure what you use in the US??
I remember when we first started with the creon after Breast feeding (she didnt need it for that) she was pooing and it was yellow and constant and her bum was sooo sore......
You need to work out the correct amount with the size of your baby and the food you are giving. I found that if i spread the dosage throughout the meal her poos are always better..she has 2 and a half tablets with her dinner, pudding and milk..I give one a the beginning, then one at end of savoury meal and then half at the end of pudding..and so on....This makes a massive difference to the texture of her poos. I was giving it all at the beginning but it didnt work as well.
Poos should be brown in colour... If they are yellow, bright orange and oily then there isnt enough creon as the fat is not being absorbed.
Is your child getting tummy ache?? That can also be a sign of not enough creon.

Hope thats helps a bit x x Preciousjewel x