New here...

[catherinesmommy]

I must have joined a while back because I already had a username, but I've never posted on here before...anyway, wow, it is overwhelming, and I will likely just stick to this forum. I have a 20 month old daughter, Lindsey, who is fed by a g-tube. We don't know exactly what is wrong with her yet, but everything is pointing to EoE or severe food protein intolerances. She takes Neocate in her tube and just this past weekend we were able to start trying foods with her...we are currently giving her pears and will soon add apples. She used to eat, but became FTT at 6 months old and by 13 months got the feeding tube because she was refusing all food and drink, including breastmilk. Her allergic reactions include chronic eczema that flares when she has a "bad" food, chronic runny nose, chronic cough, throwing up, and she has bad reflux. She may have a genetic/metabolic condition, but it is unknown at this point. Anyway, it is always nice to meet other mamas going through this.

[2boyzmama]

Hi!

There are several FTT and/or tube-fed kiddos on here, so you'll have lots of support! My son is/was FTT (I say is/was because he officially still is, but we know why he is, and it isn't "fixable" so I say was. If that makes sense!) He's not on a tube...we narrowly avoided it, and still aren't fully out of the woods (he has an immune deficiency, so gets sick often, and we know that he may need at least an ng-tube with an illness at some point because he tends to lose weight easily but really can't afford to lose weight).

There's a couple kids with metabolic issues, and some with EoE, too! You'll fit right in

[MotherWhimsey]

Hello! My kid has Mito and a GJ tube with 24 hr feeds. He's on an elemental formula but I don't think he has food allergies, he just can't break down the food fast enough, so the elemental formula helps a lot. We've been tube feeding 3 years this month.

[jnet24]

Hey I am glad you were able to find this place. The site is pretty overwhelming at first, but it sure keeps you occupied when rocking little ones to sleep

[anj_rn]

Welcome. My DD has a g-tube too, as well as a trach. We are transitioning now to a blenderized diet with breastmilk (from straight breastmilk). While she does not have any food allergies yet, I have more than I know what to do with. We all feel overwhelmed at times, but this is a great place to share and vent.

I get through it day by day, but it having the support of other mommies helps a lot.

[gsmom]

Welcome! My DS is g-tube fed because he can't eat orally. He was FTT for a long time. This is a great place.

[pixiekisses]

Welcome. My little miss cotton ball button has a gj-tube, has been tube fed only for 4 years soon. She's also had the FTT diagnosis. We know more about why now, but it took a long time to figure that one out. She's on the ketogenic diet due to bad epilepsy. And she also has reflux, but it's gotten a lot better after we started using the farrell bag to drain her stomach and feeding in the j-tube, so she kinda refluxes into the farrell. (MotherWhimsey told me about the farrell.) She has some other issues too.

This is a great place!

[Lindsay1234]

Welcome!!! My dd2 has a gtube for swallowing aversion. Shes had it for...7 months now.

I hope you find a lot of support here!!!

[Lindsay1234]

Originally Posted by anj_rn

We are transitioning now to a blenderized diet with breastmilk (from straight breastmilk).

How old is your lo? I was wondering when I would have to start blenderizing or getting a formula for older kids. DD is on about 85% donated BM and the rest is just regular formula but I noticed the can said 0-12 months! (shes 9mo)