Undiagnosed Two Year Old - Elecare or Neocate Maybe?

[ashcic18]

Hi everyone,
I have a son who just turned 2. When born he started with choking episodes and vomiting. He ended up with a feeding tube for being failure to thrive. He has had 3 endoscopies 2 of which showed eosinophil's, inflammation, and stomach ulcers. He was put on elecare formula and did pretty well. He has several behavior issues and also episodes of screaming after eating now that he is off the tube and eating regular. Allergy testing has been negative. We have been dealing with this for 2 years now and need help. Does anyone have any suggestions or where we could turn we feel like the doctors just are not listening to us. We would like to see him get an NG tube and try putting him strictly on elecare or neocate and see if it helps, since he is gaining weight we cannot find a doctor that will do this. Our lives our upside down and we are sick of watching our poor little boy being miserable and in pain!

 

[jmckinley]

So sorry that your son is having to go through this. It is very frustrating to see them in pain and feel helpless.

Are you going to a GI at Boston Children's? They are ranked #2 among children's for GI.

My son was milk protein intolerant from birth and screameds after every bottle. This didn't show up in allergy testing because it was an "intolerance" or his body couldn't digest casein and whey, the 2 milk proteins. These 2 proteins show up in every processed food you can imagine. This sounds like a possibility since he did well on the elecare. Hyoscamine (bentyl) drops helped the pain.


Boost makes Kid Essentials that are shaped like a juice box. You might be able to try that until you succeed at getting the NG tube. But if he is milk protein intolerant, this won't work.

I am sorry I can't be of more help. I know someone with a younger child will be along soon to offer some advice. Hugs to you and your son. I hope you find some answers soon.

 

[Dexky]

Welcome Ashcic! I know you are bound to be beyond frustrated and scared by now.

MyLittlePenguin is very versed in eosinophilic involvement and I'm sure she will be along soon. I can't imagine why they wouldn't try EN with him since it has already helped once before. Good luck!

 

[Farmwife]

Hi and welcome.
I feel for you. I was where you were not to long ago.
I hope he doesn't have IBD but if he does you came to the place.
My Grace has also been dx with eosinophilic disease.
I wondering if your dear son could fit into EGID category>
MLP does know a lot about this. Also if you go to my new thread. Press HERE
It will give you some great link to look that up.

Does your dear one have any other issues....like joint, eye, skin problem?
With IBD you MIGHT get "extra problems"

 

[my little penguin]

Not a lot of time tonight
But high EOS relates to EoE and EGE and EC
See www.apfed.org
Also check out
Www.kidswithfoodallergies.org

 

[my little penguin]

I will post more friday

 

[ashcic18]

Thank you everyone for your responses. We are going back to the allergist tomorrow as they did patch testing on my son 2 days ago they will read results tomorrow. His back looks pretty normal other than being red from where the tape was. We will see. He is currently taking Perriactin, Melatonin, Zantac, Miralax, and Iron. They just gave us some neocate jr to try but he will not drink it by mouth and like I said previously no longer has a feeding tube.

 

[Devynnsmom]

I'm so sorry to hear what you are going through. I hope you get answers soon. ((((hugs)))

 

[ashcic18]

well we went back today to have the patch test results read and we found out positive allergies are strawberries, banana's, pinapple, eggs, potatoes, sweet potatoes, carrots, and peanuts. any suggestions I am curious to see what GI will say since his diet is already so limited.

 

[Farmwife]

Hi. I'm posting a link for the EGID forum at KFA. They deals with diseases that involve EOS. It's a great place and other parents that have been through it all.:hug:
Press HERE
I just joined. PLEASE post your story there. It sounds just like the ones I'm reading about.
Of course you can have both problems like Grace does but you need to find out for sure.
I just don't want you or anyone to go through what we have gone through.

Pm with any questions.

 

[DustyKat]

Oh my goodness. How awful for you and your little one.

I can't add anything to what has already been said but wanted to send much love and healing thoughts your way. :ghug:

I hope you are able to get help and relief for your boy very soon, bless him. :heart:

Dusty. xxx