Any chance of an appetite

[Tracypoppins]

Hi everyone, my son is 9 and has been diagnosed about a year after a lot of trips to doctors and hospitals!!! (don't get me started)
The latest problem is complete lack of appetite and saying that things "taste funny".
He had a blood test and apparently his CPR is raised, it's reading 57 but I dont know how bad that is really.
Any ideas?

 

[Farmwife]

Hi and welcome the the forum.:heart:
My Grace gets 1-3 shakes (boost) a day.
There is something called EEN. It's liquid shakes to provide All the nutrients he'll need.
More will be along to explain it better.
Grace also is very sensitive to taste.

Don't worry...the don't get me started comment has been used a time or two here. We still want to hear.:biggrin:

 

[jmckinley]

Is your son on any meds that might change his taste buds? It may simply be lack of appetite due to inflammation. CRP of 57 is pretty high and indicative of inflammation going on. Has he had a cold or any other problems that might elevate the CRP?

I agree with farmwife about trying some EN. You can start with Boost or Pediasure kids to try to get some nutrition in him. There are some meds like periactin that stimulate appetite. We've taken that before with good success. Also, if his GI were to put him on a steroid to reduce the inflammation that would make him hungry (although it has it's own problems).

I hope you get some answers. Watching our little ones suffer with this disease is frustrating!

 

[Sascot]

Hi, I believe 57 is quite a high CRP - as far as I'm aware, they want it to be around 5. Hopefully they will begin to treat him with something to help bring down the inflammation/infection.

 

[Crohn's Mom]

Hi Tracypoppins ( I love that name! )

Welcome to the forum, we're glad to have you here!

Just wondering, is your son on Flagyl by chance?

 

[izzi'smom]

Glad that you got a diagnosis, although I am sorry it took so long.
DD had a poor appetite for a while-I was told it can be the body's response to the inflammation (increased CRP). Izz's CRP has been in the 60's before-and I know that "normal" is under 10. I am unsure if IBD kids are really ever "normal", though. Right now my dd is doing super and her CRP is around 1.

 

[my little penguin]

:hug:
We had similar issues for DS.
I would reccomend peptamen jr.
DS did a 9 week course of EEN ( no food only formula).
He now drinks 2-3 peptamen jr a day along with remicade.
Peptamen is a semi elemental formula proven to work in kids with Ibd or impaired Gi tracts. The formula is very broken down so only the first few inches of the small intestine are needed to absorb the nutrients .
We treat it like any other med - doctor ordered you drink it even if your nose is plugged. It only took a few days and his taste buds got used to it.
He can now down one in a matter of minutes.
Pediasure and boost taste better but contain whole proteins so they are harder for the intestine to process but not as hard as food.
DS gained close to 20 lbs on peptamen and started to grow as well until we had to add pred back to the drug mix.

Peptamen is expensive but some insurance will cover it through your durable medical equipment clause as infusion home supplies . But won't cover it under the formula clause. I know don't ask.
Your GI can write a script and send it to the Dme they can tell you if its covered or not.

Also once the 6-mp starts to work the nausea and lack of appetite goes away.

 

[my little penguin]

http://www.nestlenutritionstore.com.../peptamen-junior-complete-elemental-nutrition

You can order it directly without a script but pricey.

Studies on it.

http://www.nestle-nutrition.com/nir...40b9-8a14-e79db56b9f57/peptamen_evidence1.pdf

 

[QueenGothel]

Nothing much add, lots of good info below. Just wanted to say hi and welcome to the forum. I hope you can get the shakes in. My DD drinks Peptamen Jr bc she has no colon and it is easier to digest for her. Previously she drank Nutren Jr and she like them much better. Less of a metal taste. My DD also has a very sensitive pallet. What we did was added vanilla ice cream and bought one of those magic bullets and make them thicker and tastier. If he is still sensitive use milk and less shake. I took about a month to get her drinking the recommended amount. We slowly removed the ice cream/milk and now she drinks them straight. If lactose is an issue Breyers makes a lactose free option.

 

[Jmrogers4]

Welcome to the forum. All I can do is reiterate what has been said above and hope he is feeling better and eating soon

 

[Tenacity]

Welcome to the forum!

Everyone has given you excellent advice. I would do the elemental diet too, and eliminate all dairy when he resumes a regular diet, and limit meat which is the toughest to digest. Go with more chicken, fish, rice etc. Never any "hard" foods like popcorn.

I am so sorry you are going through such a tough time. If there is anything we can do, or answer any questions, let us know.

Hang in there

 

[hbonsky]

welcome to the forum. My son has Crohn's and is 5 years old (had it since age 2). Eating has always been a huge problem and so has maintaining his weight. He drinks pediasure right now, a few cans a day. I know people with Crohn's react differently to different foods and its even more difficult with a child. All of the suggestions so far are great and I am trying some of them with my son.

As for the "don't get me started" on hospitals. I totally hear you on that. My son is constantly in a hospital, clinic or lab work office and is even going to the hospital on Friday for a procedure. I know it is so frustrating.

I hope you have a good doctor that can help with eating/nutrition things. Definately use this forum and do your research. Over the past few days, I think I have discovered that I have the worst doctor in the US for my son and wish I would have known more before I made major decisions about his health.

 

[DustyKat]

Hi Traceypoppins and :welcome:

I'm so very sorry to hear about your boy...:hug:

I have nothing to add to the wonderful advice you have been given.

How are things going with your lad?

Dusty. xxx