Update on my 9yo..and off to the nutritionist

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Dearie

Joined
Apr 13, 2012
Messages
49
Hello everyone,
Just an update on my 9yo son, KG. Since his diagnosis of Crohn's on March 27th he has remained stable on Pentasa, Prilosec, and Ferrous Sulfate with the addition of calcium Vit. D chews, a probiotic, and omega 3. Labs were drawn on April 24 and his inflammatory markers are improved and iron has increased. Also, he gained 7 pounds and no more vomiting. But, ALT (liver enzyme) elevated, so our doc told us to cut down from 3 pediasure per day to no more than one a day and we will recheck liver enzymes after two weeks. She still prefers to start him on AZA because of the severity of inflammation she saw when he had his colonoscopy but I prefer to hold off since he seems to be pretty stable right now.

Next step, nutritionist appointment tomorrow. Not exactly sure of how much of an impact nutrition can play when it comes to inducing and remaining in remission but hoping the nutritionist is able to give some valuable information.

And, thanks to all for the information you provided me to bring to our 1st follow up appointment. I've learned so much from this site !
 
So fab to hear that things are settling down Dearie. :panda::panda::panda:

May it keep on keeping on hun...:goodluck:

Dusty. xxx
 
Thanks for the encouragement and the reason our doc feels his liver enzyme may be increased is because of the sudden high increase of fat intake he was consuming by taking 3 pediasure (actually he was taking ensure but we now switched to pediasure) on top of all the normal foods he was eating. She says the high fat intake may have caused fatty liver meaning the fat spills over into the liver and destroys liver cells. Once we started the ensure he gained several pounds in a matter of weeks, so we have now cut back on the amount of ensure he takes.
 
Glad your son is doing well. Please share if u learn anything from the nutritionist Went to ccfa nutrition seminar last week. Don't feel like I walked out feeling much better. Did learn about Breeze nutrition fruit drink that has no fat. Have not seen it in the store yet. Good luck tomorrow.
 
Very interesting about the fat and liver correlation. Thanks so much for explainig that. Hope the decreased pediasure fixes it!
 
Thx little penguin. I used your nestle link from a prior thread last week to buy the kids boost. Target stopped carrying it and it was crazy expensive at the grocery store ( the only other place I could find it). Stopped at Walgreens on way home. No luck. Hoping to have him try diff flavors before ordering on line. The boy needs to ingest some good calories. Our nutritionist thought he looked perfect. She did not see him before he got crohns. He was much more muscular and healthier looking. He does not like eating much and is pretty active.
Dearie. Hope your appt went well today.
 
We didn't get much info that I hadn't already discovered from my own research and from this site. Just given information on low residue foods and high iron foods. And, we were told to monitor everything in case his symptoms flare up so that we can eliminate the things that seem to cause problems. Also, went home with a few pediasure sidekicks shakes which have less fat and sugar than regular pediasure with the same nutrients,

Didn't hear what I really wanted to hear which would have been a "magic" diet that has been proven to induce lifelong remission! :( But, I already knew this diet didn't exist. Was just hoping for a pleasant surprise !

Anyway, we will just keep taking it day by day. Wishing wellness to everyone :)
 
Had not seen the breeze in a store yet, so I bought the new pediasure sidekicks clear figuring would be similar. At first my boys thought they were ok. Then H said he did not like the plaquey stuff in them and to really shake it good. Tonight, each one had one and they showed me some whitish orangeish stringy stuff on their tongues from it. YUK.. wiped it off with a paper towel. Called number on box and it should be just clear liquid nothing mushy. Will send me a refund and to send the unused drinks back. Has anyone else tried this?
 
Dearie, not to sound like a buttinsky but...
what the GI said re: Pediasure/Ensure fat intake sounds ridiculous to me.
I'm not just a layperson, I have a master's in medical genetics and I have NEVER heard of such a thing unless in a case of a pt with liver disease.
The amount of fat in these formulas is not sufficient to cause fatty liver nor elevated enzymes in a child with *just* IBD. That is patently absurd.

I would question this further; if he was doing well on the formula and needs the nutrition, cutting it back seems counterproductive. There is likely another cause for his hepatic issues. Please look into this more.
 
Imaboveitall: See?! You can't drop out like that! I read this thread and starting getting concerned because O is drinking almost 10 Boost/Ensure shakes a day now and that is 40 grams of fat. PHEW! Glad it seems like I was worrying for nothing.
 
I will definitely question further about his elevated liver enzymes especially if they are still elevated after we check them again. Thanks for all your input! He was also having mild left sided pain about a week and half ago but it seems to be resolved now.

& my son didn't like the taste of the pedisure sidekicks either, though I didn't notice any residue after he drank it.

I also have seen quite a bit about LDN on this site and I'm thinking about asking our GI about this for KG because right now he's only taking Prilosec and Pentasa (and vitamin D chews, fish oil, a probiotic, and ferrous sulfate). She wants him to start Aza because he's doing well right now but she doesn't think this will work for long. So, I was wondering if anyone has any input on starting LDN as a maintenance med instead of Aza? Has anyone LDN first and is it usually started only during remission or during a flare up or does it matter? Thanks
 
Hepatic involvement/disease can be concomitantly present with IBD. If that's the case, Dearie, that would make more sense.
However, a HEALTHY liver cannot and WILL NOT be stressed by three bottles of Ensure/day. That is so ludicrous I am truly appalled to hear a GI say it. I am really amazed at the GI saying this.
There is simply no way UNLESS the child has a co-existing hepatic issue.
Which he may. I'd be asking for it to be investigated.

Cinct, recall V was getting 10-12 cans formula/day at the start.
High fat is NOT an issue with these kids unless liver is compromised from concomitant issue.
 
Dearie said:
Hello everyone,
Just an update on my 9yo son, KG. Since his diagnosis of Crohn's on March 27th he has remained stable on Pentasa, Prilosec, and Ferrous Sulfate with the addition of calcium Vit. D chews, a probiotic, and omega 3. Labs were drawn on April 24 and his inflammatory markers are improved and iron has increased. Also, he gained 7 pounds and no more vomiting. But, ALT (liver enzyme) elevated, so our doc told us to cut down from 3 pediasure per day to no more than one a day and we will recheck liver enzymes after two weeks. She still prefers to start him on AZA because of the severity of inflammation she saw when he had his colonoscopy but I prefer to hold off since he seems to be pretty stable right now.

Next step, nutritionist appointment tomorrow. Not exactly sure of how much of an impact nutrition can play when it comes to inducing and remaining in remission but hoping the nutritionist is able to give some valuable information.

And, thanks to all for the information you provided me to bring to our 1st follow up appointment. I've learned so much from this site !
Click to expand...
Hi,
My 8yr old is scheduled to start Remicade and I am kind of scared about the whole thing. Just curious as to why you guys chose Pentasa? What are the side effects?
 
Fabi said:
Hi,
My 8yr old is scheduled to start Remicade and I am kind of scared about the whole thing. Just curious as to why you guys chose Pentasa? What are the side effects?
Click to expand...

When he was first diagnosed our GI suggested starting Prilosec, Pentasa, Prednisone, & Azathioprine or she said we could try EN instead of Prednisone but I opted for just starting with Pentasa, & Prilosec, and he was taking an antibiotic, unless symptoms became worst, because he wasn't having any pain or diarrhea. His main symptoms before diagnosis were weight loss and anemia and he vomited a few times.

But, if symptoms were worst or get worst I will opt for EN first and other meds if needed.

My understanding is that Pentasa is one of the first meds offered for treatment but I think it's usually for mild to moderate symptoms and side effects can include abdominal pain, diarrhea, vomiting.

It's so hard to make decisions on their behalf especially when it comes to this complicated illness. Wishing you the best in decision making and hoping your little one feels better soon!
 
"Next step, nutritionist appointment tomorrow. Not exactly sure of how much of an impact nutrition can play when it comes to inducing and remaining in remission ..."



I think nutrition can have an impact. We are doing an anti-inflammatory type diet with our son right now. It's not fun and we haven't been doing it long enough to say that it will induce remission. But I can tell you that he says he feels better. Also, even though his SED and CRP are still elevated, he isn't having too many symptoms. We just weaned off Pred for the 2nd time this year, and so far the results are better. We will know more when we repeat bloodwork in 3 weeks. I am hoping for the best. Fixing (yes, I am from the South...we fix the food LOL) food is time-consuming and worrying about his weight is an obsession.

Oh Remission, how I miss you and long for your return!
 
jmckinley~what kind of food do you fix for him??

I am reading a book right now The Thriving Child and it talks about the importance of eliminating wheat, sugar, dairy, yeast, and processed food from the diet in order to cure asthma (my son has asthma too) and decrese inflammation. But, what is there left to eat after eliminating all of these things? lol
 
Nothing worth living for.lol
Were also off most of that stuff.
For asthma the biggest thing is no milk or dairy.
For some reason milk restricts your breathing.


Farmwife

Oh, our diet is mostly Meat, fruit, vegetable and I only use organic wheat and sugar. No soy. I cook homemade every thing I can. During planting and harvest season is the only time that's next to impossible.
 
You're right Farmwife, nothing worth living for lol
I am trying to eliminate a lot of these things too but it's kind of hard since almost every food available for purchase has at least one of these ingredients.
And, I have never been too much of a cook but I guess I need to get to finding some recipes! lol
Anyway, thanks for your input :)
 
Dearie,

First, sorry this post is so long!

We are eating...NO sugar (including things that convert like white potatoes and white rice), NO wheat, NO corn (including corn syrup, cornmeal, etc), NO dairy (except for small amount of Lactaid milk). And you are right Farmwife, "nothing worth living for" since I live for chocolate! LOL

Seriously though, we have gotten better at the diet. I thought we would starve to death at first.

Here's a sample:

Breakfast
eggs (usually scrambled with spinach, turkey)
or oatmeal

Lunch
Sandwich on Brown Rice Bread
fruit
Sweet Potato chips
-or- leftovers from last night's dinner

Dinner
Grilled chicken/fish
green beans
brown rice/couscous
baked apple

Snacks are fruit, smoothies, vegetables.

I have also been learning to cook with coconut flour, brown rice flour and use honey/maple syrup to sweeten. I can actually make some decent muffins and a fake pizza now. Also we drink almond milk or water. (I admittedly sneak some caffeine-somebody's got to do all this cooking!:yfaint:)

Doesn't sound like fun and I have to admit that last week when the bloodwork came back high, I wanted to throw it all to the wind! But my son is actually the one who said he wanted to keep doing it because he felt better!

I have some trouble reconciling the diet with what foods I know usually aggravate Crohn's (like fruit) and the diet may not work forever. But he seems to be tolerating pretty well. We still have meds and are taking some supplements too. Fingers Crossed!
 

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