8 month old signs of Malabsorption

[anonymous]

Our grandson was diagnosed with CF shortly after he was born. (bowel obstruction) He had surgery and was in the hospital for the first 5 weeks of his life. The main concern has been weight gain. He has gained weight every month, (not alought) the CF team has been positive up untill this months check-up. Sometimes, however they do not appear to "be on the same page" His lung function is good. He had some liver problems but for now is much improved. At almost 8 months he is only at 16lbs. Again, not to complain about his care, but the gastro doctor was not as positive as he has been in the past, or at least that was my son-inlaws perception. The enzyme dosage was not changed. The doctor did however, take him off Raglin, and put him on Previcide. He thought too much acid in the stomach was effecting the quality of the enzymes?? My daughter has given him his enzymes in applesauce since coming home from the hospital. At 5-6 weeks old I could not believe he would take them this way! Anyway, I know that applesauce is acidic, and will help the small beads. But, could too much applesauce (acid) cause a problem? From what I read our grandson is suffering from Malabsorption. He seems to have all the symptoms, poor weight gain, frequent stools (4 a day) gas.He was also started on solid foods last month, and bottle twice a day with a suppliment called Reliv. I know these are questions for the doctors. And the gasto-doc is suppose to be very good. My wife and I are very active in our grandsons care. We are part of the team. However our kids seem to want to go it alone when it comes to the doctor visits? We do not want to be "too pushy" So any comments? i.e. weight gain in infants, etc.
Also, P.S. What I meant by 'not being on the same page. Last weeks visit one of th CF care team doctors asked if our grandson has had his RSV shots. He has had all of his immuinizations the pediatrician has perscribed also a two stage flu shot. They did not know of this one??? The CF doctor seemed shocked and said he needs these shots, given by a home health nurse (coming to the house) from November- April every month. My daughter is now trying to find out WHO is going to come give these shots??? They seem frustrated.

Concerned Grandpa of 8month old wcf.

 

[babyjaden2004]

It is great your a big part of his life. Jaden who is 16 months weights in at 21 lbs right now. She takes Zantac to help with the stomach acids to better help her enzymes. I have been told to use apple sauce as well, but for a change I buy jarred baby food fruits, like pears and she takes them that way as well, gives her a change from always having applesauce. Jaden also drinks pediasure for now and it has helped a great deal. Have they told them to add butter and things to his foods? Jadens enymes have been adjusted a few times. Is his stools oily? I'm no expert and still learning lots myself but if you ever want to talk give me a hollar. Ya can email me anytime. Let us know how things go. BTW Welcome, this place has loads of info and I'm sure someone can offer you more help then me.

 

[anonymous]

DS was diagnosed at birth because of a bowel obstruction and once we started enzymes, I was terrified. One there was a crabby old nurse who'd always scare me by warning about tissued breakdown because of too many enzymes. So we applied lots and lots of butt paste. We started off with one half capsule of pancreacarb on baby food bananas. And he still had lots of loose stools. We'd ask how do we know if we give him enough enzymes and we'd get told -- you'll know -- Heck DS was a poop machine and I had no idea what I was looking for. He's 2 1/2 and I still feel somedays that I don't have a clue.

As for the RSV shot. DS's CF doctor in the City mentioned it. The local pediatrician didn't feel it was needed. We went round and round 'cuz DS was in daycare and we didn't want to risk lung damage or a lengthy hospital stay if he got RSV. Turns out CFers weren't on the "list of approved" recipients of the shot according to blue cross. Mostly it's for preemies or children with heart defects. So our attorney wrote a letter, we got approval for the shots within hours. The shots are like gold -- $3000 a month. We had to go to the clinic every month, they'd weigh DS, figure out how much vaccine he neede, wait 20 minutes for them to mix it up and then they'd shoot him. This went on from November to April.

I think the most annoying part of dealing with this disease and the medical community is that there are CF doctors, then there are the uninformed regular doctors who don't know anything about CF, then the nurses, dieticians, respiratory therapist -- everyone has a different opinion on treatment, feeding, medications... Drives me NUTS! My main fear when DS was diagnosed was finding a good local doctor -- I have yet to do so.

 

[HD]

One thing about the enzyme dosage is that it is based on weight, at least unitl the new enzymes come out. That means if he has not gained enough to go up on a dose, he is stuck at that dose. The applesauce won't cause the acidity (I'm a Family Nurse Practitioner as well as a mom with a 5 year old with CF. We also use katchup. Very handy going out becasue you just collect packets at restraunts then throw them in the bad with a spoon. Does your grandson see the nutritionist each time? Sometimes they can give better explanations than the doc even if the doc is good. We also have a pediactric nurse practitioner that sees us each visit in addition to the nutritionist, gastro and respiratory doc. Whew! It's up to the team to give you the information you need! Push them unitl they do! Your grandson is lucky to have you on his team!

 

[anonymous]

I have lots of empathy for your post! But first, what a lucky child to have such involved grandparents. My son is 9 months old tomorrow (7 weeks premature) and weighed in this morning, at 15lb 13oz... so I know what you're thinking! He also had surgery for meconium illeus, so that seems similar too. However, it seems that his docs have responded a little differently. I'll let you know what they did and maybe it will help you in your situation!

First, I would ask to see how his weight gain looks a growth chart... my son is below the third percentile... but he was a preemie, so it is somewhat to be expected, but only got worried his curve looked like he was falling even further behind. So, perhaps you could ask them to help you create a line on the growth chart that shows how the trend line looks... and see how it compares. That might help... it did for us, so we understand how he was doing relative to others over time.

His weight gain was very poor at our Nov. check up and they boosted him up to 2 enzymes (Ultrase) per 6-8oz bottle and that did the trick! He has gained almost a pound this month! Compared to less than half a pound the month before... so I would push it with the docs. Our doctors don't dose the enzymes based on weight. Instead they do it based on amount of intake per bottle. And what the stoles are looking like. The dietician said as a rule of thumb they counted 1 Utlrase capsule for each 4 oz. bottle... and then adjusted from there. In our last visit the doc. also said that pancreatic insufficiency usually worsens at about 6 months with infants.. perhaps they were producing a few of their own enzymes previously, but now there's probably very little getting into the digestive track... so more enzymes are often needed at this point in time. Our CF Pulmonologist is sometimes more knowledgeable about the enzymes than our GI specialist, who doesn't work with CF too often.

As for malabsorbtion... when I couldn't breastfeed anymore we switched to formula (Enfamil Lipil). He started having 10 - 12 tiny stools a day and really straining... then he started looking bloated as he was very fussy... and his weight gain was bad. When we went back to the doc they switched the formula to Enfamil Pregestimil... and everything turned around. So... for us it was very clear when it was malabsorbtion... now he has 2 - 4 stools per day and is hardly fussy.

Finally on the applesauce. Our dietician gave us a list of foods and brands that had the appropriate ph for the enzymes. Did you get one of these? Apparently the ph of applesauce is very good for enzymes.

Good luck... keep asking those questions.... over and over again if you have too!

Stacy
Mom of Maren and Berne - 9 month old twins with CF.

 

[anonymous]

Thanks to all for your replies. Our daughter talked to the doctor today and felt better after visiting with him about the malabsorption. He had a couple days that seemed liked he was having alot more trouble with stools, but it has lessened considerably now. They feel he might have had a little bug and his body was just fighting it off. Speaking of that have any of you dealt with trying to get the RSV shots? They are now battling with insurance about paying for these. It is ridiculous that they would even question this, but like most of us know there are just not enough facts out there about CF. Also, when she spoke to the doctor he gave her other options for feeding him the enzymes. He told her they did not always have to be in applesauce, which was what they were orginally told. He is eating solid foods, 2nd stage baby food and doing fairly well. Just seems to be slow in gaining weight still. It does seem that usually when they go for their visits the dietician and respitory thearpist are not there. This has been a little disheartening since the clinic they go to is only open once a week, so they haven't gotten alot of support on that side. Good luck to all of you and know you are blessed as are your little ones.
Grandma

 

[julie]

Grandpa, first welcome to the site and major props for your concern. It's understandable that the babies paren'ts want to "go it alone" because they might feel as any new parent does, they want to raise the baby according to their "wants". I can only imagine this is more ocmplicated with CF thrown into the mix. This is likely more their personal issue than anything on you. Some families would give anything to have such involvement.

A few things about the weight, are they supplementing with anything other than reliv? I have hear it is a great product, but sometimes there might be more needed. Have they looked into pediasure at all?

I too am very frustrated by my hsubands clinic that use to only be open on Wednesday evenings. We ended up getting a number and email for an "on call" nurse so we could have some on to contact immediately. There were a few occasions when the nurse said we sould see the CF doctor and had us come in and meet the doctor in a clinic "off day". Maybe they can ask for information like that, at least put them at ease.

Welcome to the site and please don't be a stranger.

 

[anonymous]

We went thru quite a battle with our insurance company for the RSV shots. The CF doctor insisted he have it, but the local doctors were too complacent. We went round and round, were told DS wasn't on the list and eventually had a relative, who is an attorney write a letter to the insurance company -- basically indicated that if DS got rsv there could be a lengthy medical stay, lung damage leading to MORE medical problems -- that the costs of the shots were worth it. Thru in a note about how we as parents dealing with a genetic disease had enough to worry about with medications, treatments, daily routine and we shouldn't have to be put thru the trauma and worry of the risks of rsv. I was terrified 'cuz I know of several people with children who caught RSV as newborns and they have horrible horrible lung problems, asthma. Anyway, within MINUTES! We got the go ahead for the RSV shots.

Liza

 

[anonymous]

Thanks for all the feedback everyone. Our daughter talked to the gasto. doc. And got a better feel for things. She seems a little more relieved today after talking with him. She did find out on the shots it is a insurance thing. Still working on that. One of the comments was Pedisure for weight gain. I thought you had to be one year old to start that? I will suggest our daughter talk to the dietician. We pray and pray everyday! Thank you.

Grandpa

 

[anonymous]

When DS was about 6 months old, his doctor told us to FORGET about using baby food -- just grind up whatever we were eating 'cuz baby food is too low in fat and salt. The other thing was to add an ounce of cream to his formula, which added about 100 calories per bottle. Whole milk yogurt -- yo baby. The dietician at the CF clinic was busy stressing to us how we should use that nasty presgistimil that he wouldn't eat, pushing the fruits and veggies, which yes he needs, but this kid came home from the hospital weighing less than when he was born. We needed to play catch up.

Another thing we did was that a different dietician gave us a recipe to bump up the calories. More powder to water -- think it was 27 kcal compared to the regular 22 kcal. It's been awhile, so I forget.

Now that he's off formula he gets carnation instant breakfast with every meal made with whole milk and an ounce of cream. His preschool adds butter to all his meals, feeds him peanut butter and candy for snacks. Whatever works to increase calories. He's such a picky little eater, it drives us bonkers.

Last night we were at 'donalds for his weekly happy meal fix and he demanded "salt on mine hand". I'm sure the other patrons thought I was nuts -- he licked his hand and I sprinkled some salt on it <img src="i/expressions/face-icon-small-smile.gif" border="0">

Liza

 

[HD]

try shakes with Hagendaz and sweetened condensed milk! We still have to get a G tube but were able to get a decent weight gain jsut on mega shakes! Oh and peanut butter. loooottttsss of PB, dip apples, carrotts, anything! Good fat and protein.

 

[anonymous]

hi my daughter was also diagnosed with cf...she was born in jan of 05...RSV shots were giving to her at infancy...after the first couple months of life..(when born in the winter)..they are no longer needed..only in preemie babies..i hope that helps...

 

[tweeksgrandpa]

Thanks for the feedback everyone. It is intresting about the RSV shots. It appears it is a insurance thing. The CF clinic, or anyone for that matter have not called back.?? The kids are frustrated. Our Grandson is 8 months old. Maybe they think he is too old? However it was the resporitory CF doc that initially made a big deal of it. As far as the weight gain I have read about Omega 3 fatty acids. I know they are good for us. We tried a little peanut butter however it appeard to give him a belly ache. I was able to get the kids a laptop for Christmas. My daughter has visited this site, perhaps she will join in.

Grandpa

 

[anonymous]

Our son was diagnosed at 3 1/2 months after poor weight gain, vitamin K def, severely low protein. I breastfed him but since he had no enzymes up to that point he had absorbed little to nothing. Once he got the right enzymes on board and a short time on NG tube feeds "he gained at a pace good for him." He went from not on the charts to 5th percentile which was celebrated by all. I continued to breastfeed him even though the CF docs discouraged me because we felt the immune properties were so beneficial. I wanted to emphasize "he gained at a rate good for him" because I feel the CF docs can get a little preoccupied with weight gain in infants especially when everything is going well (they need to do something I guess). It is very arbitrary and the important thing is consistent and continued weight gain, meeting developmental milestones and doing what you know as a parent/grandparent is best for your child. He contracted RSV around 8 months and handled it well. He did loose weight during the virus and we supplemented him for several weeks via NG again until he could eat orally. We also chose to go in for IV antibiotics for insurance that his cough was not a secondary bacterial thing. He is now 18 months and 23lbs, which I think is 15th or something like that. He is on a antacid (pepcid), eats like a horse and still breastfeed several times a day. During growth spurts we have to adjsut enzymes, during teething we have to increase enzymes and when he has a cold or flu. Enzymes change all the time as they get older, so you adjust. We just call and tell them we needed to change his enzymes and the call in a change in his prescription. The first year is the scariest. Stay strong and follow your hearts.

I know vaccination is a touchy subject but we choose not to vaccinate after researching extensively. I don't want to say much more because I think that it's very personal. We were not offered the RSV vaccination and I really don't think it would have mattered, as many babies still get it even if they are vaccinated (same with whooping cough). Now if they offer the pseudomonas vaccine we may consider that for our son.

We also spend alot of time researching nutrition and supplements on our own. I found the nutrition advice to be somewhat counter intuitive to what is known to be helpful for disease as it relates to inflamation. We feel the main thing you are trying to do with a CF kid is preserve their lungs. Weight gain is important too but they suffer most from lung function. Inflammation is huge in CF for the gut and for the lungs, so we focus our attention on giving him supplements and foods that promote an anti-inflammatory environment in his body. Lots of Omega 3 oils (olive, canola, walnut) in cooking and in supplementing his foods. We give him a probiotic (acidopholis promotes healthy bacteria levels and reduces inflamaton) daily in his applesauce/ vitamin (vitamax 1ML plus a more complete daily vitamin plus a pinch of magnesium for acid reduction) concoction in the AM. We also avoid dairy but this is due more to him being sensative to it although lots of dairy in the diet can cause excess mucus. We do soy yogurt and cheese as well as cream cheese and he loves it. We offer alot of protein at every meal but try to also give a good amount of carbs too. When he was little he loved baby cereal mixed with soy yogurt (half container) and we would add MCT oil to it fir more fat. We also like essential oils during colds and flus (tea tree and thyme oil inhalations protect lungs from bacterial growth). It's alot I know.

I share our style because I know it is not mainstream. I think as parents we sometimes face really tough choices particularly in regards to medical decisions. As long as things are well researched, you sometimes have to say "thanks, but no thanks" to the docs because you can drive yourself crazy thinking you aren't doing enough for his weight when it is indeed fine. We listen to their advice with openess and then balance it against our own findings and how our son tells us he is doing. They are very pleased now with his weight but I think that has alot to do with my strength about it during appointments. They also know when I'm concerned about something I call to talk to them. They are on your team but you guys are the captains!

 

[anonymous]

DS was 5 months old when he got his first RSV shot. We're the ones who had to have an attorney write a letter to BCBS and within hours we were approved. A friend of mine's daughter got RSV as an infant and ended up with lung damage, so I was terrified of having to undergo another hospitalization, risk of lung damage with potential for more hospitalizations...

When DS was 6 months old his doctor told us to forget about babyfood. Just grind up what we were eating because babyfood is low in sodium and fat. We still used babyfood 'cuz he loved the meat, veggies, mac & cheese, oatmeal, fruit -- but we'd add a dash of salt, little butter or olive oil. He also ate lots and lots of yogurt -- we found a whole milk brand, but otherwise I'd just pick the one with the highest calories and add a dash of cream. We used formula, but when he became finicky -- I'd add chocolate syrup or nestle's quik and an ounce of cream.

Liza

 

[anonymous]

Hi all,
I havent been on this site for ages as i mainly go on the UK site but for all of those who remember me or not!!LOL... Im Paula mum to Ruby now aged 8 1/2 months.(preciousjewel).....Ruby is doing great at the moment and weighs 19 1/2 LBS and is average weight 50th centile...i have changed CF centres and now go to one of the best in the UK (long story) Anyway Ruby had meconium ileus too and had 3 operations to reverse it.....after illestomy etc...
She was putting on weight at the old clinic so they were happy...however at the new one i explained what her poos are like and they said she is not getting enough Creon....(enyzmes)

These are the signs to look for in realtion to poos if your not sure :-
My dietician...states that
bright orange poo

or oily, shiny

or fatty (you can see white lumps in the poo) is the sign that she was not getting enough creon.

She was also going about 6 - 8 times a day which was way too much...

The poo should be mustardy / brown in colour and the texture should be of a nice texture not sloppy - Oh i am sorry if you are eating ha ha.......The things we have to discuss!!!

her tummy was big and that is another sign of malasorbtion.....although some of it was to do with the operations..

I also given her creon differently...before i gave it all at the beginnning of her feeds but what was happening is that the creon was running straight through her and the food that followed was not getting digested properly.

Now i give it after a good few spoonfuls of savoury (so the creon will mix with the food in her stomach )

then at the end of the savoury

and then give her a bottle or pudding and the rest at the end of the bottle/ pudding.......so it is staggered out....Works a treat.

Just wanted to share that info x x Hope you all had a great xmas

Lots of Love Paula x x

 

[JazzysMom]

Hello Paula....havent heard from you in a while. I am glad to hear that Ruby is doing well & that you are happy with the new clinic. Merry (belated) Christmas & Happy, Healthy New Year!

 

[tweeksgrandpa]

We appreciate the feedback from everyone. We had a scare the other day before Christmas. Our grandson made a little trip to the ER. We have felt very fortunate because since coming home from the hosptal 7 months ago, except for the trips to the CF care center and pedia doc, we fell he has done well. He started running a fever early friday morning.(all kids run a fever, I know this I raised two) The pediatrician was called early that morning and she had the kids take him in the the ER. They said he had a mild case of pneumonia. Given antibiotics and tylenol. Within 24 hrs he was back in good spirits. He did not stay in the hospital overnight. He has a appointment with the pedia doc in the morning. We are now all sick. HA! Some kind of cold. In regards to the RSV shot, a strange thing happened this morning. The clinic called and said to bring him in Thursday to start the RSV shots.??? We will see. I am on vacation this week so I believe I will be going as well (I have questions) We gave the kids a really good digital scale for Christmas, I just hope we don't get obsessed with checking the weight thing. HAHA! Question with the Omega 3 oil. I did not know it was in olive oil? I thought flax, and fish. My daughter has been on this site. She says sometimes there is too much info to consider. There is some confusion in my mind about at what times (age) you all started adding stuff to a babys diet. We tried a little peanut butter the other day (very small amount) and it appeared to give him a belly ach.
Well, all in all it was a truly wonderful Christmas. Our first one with the grandchild. We thank God!
Hope all of you had a Merry Christmas.

 

[anonymous]

Hopefully the RSV shots will be covered under their insurance -- two years ago they cost $3000+ a pop. As far as different info on this site, conflicting info... We have that problem with our treatment -- we have a doctor at the CF clinic who is very proactive -- latest treatment methods, antibiotics as a preventative, CPT 3-4 times a day with nebs, but locally... All they can do is criticize. The local CF clinic is reactive -- don't think DS should be on any antibiotics, they were shocked we were doing CPT 'cuz DS didn't have any symptoms yet. Heck, they still have a community waiting room with TOYS for all the CFers to gather in on treatment day -- We hide in the hall until our room is available. It's frustrating 'cuz I feel it's important to have a local contact, so we don't have to drive 4 hours should a problem arise, but they drive us nuts by constantly criticizing the way we raise our son -- daycare, medications, treatments. It's almost as if they WANT us to fail so they can thumb their nose at the doctor in the City who they're OBVIOUSLY threatened by. And we're stuck in the middle, learning as we go along.

 

[tweeksgrandpa]

Well, we went in today for the RSV shot. Insurance decided to cover it. You were right about the cost. $3000
I was shocked. I am on vacation this week so I took my daughter and little tweek to see the CF pulmanary doc. She spent some time checking him over before they gave the shot. He seems to be much improved from the mild pneumonia last week. In the future they will send out a Home health care nurse to give the shot. The peds doc yesterday said he looks great! She said him weight was also good? She said because of his short stature (25.5") tall, if he gains too much weight that he would be too roly, poly. Everyone has an opinion.

Tweeks Grandpa