how to cope ??

[bossoflatch]

hiya ladies..

well ive been in and out of this section all the time .. i know many say i should join in but just dont feel things warrant that as dd isnt bad compared to what some of you all go thru... :hugs:

Im also not quite sure where to put this as it doesnt fall into place anywhere particular :o

Having said that .. i do wonder how do you all cope :confused:

atm .. tay is off all foods.. with an exception to a chew on a few foods and then spit and gag :p she thrives on elecare and her gi says his happy to keep her on that now till 2 yrs old and then start further testing .. as with only elecare she doesn't need any meds at all except the lactoluse we just started for constipation (which in itself is causing havoc)

my worry is its the same old drama each time.. she will always eat food no matter what it is the first time.. the next time she takes it to eat but gags.. spits . vomits it out .. and well im concerned that behaviour takes part in this.. how do you know when a child ( on elecare/ neocate is playing with food or they generally react.. how do you cope with questioning yourself and your child ??? or you dont .?

shes still so little that i know.. but if theres something i can do to stop this.. im all for it.. if its something i have to go thru to keep her happy . so be it too :) but im not sure anymore.. it just seems so nasty that im teasing my dd with food when it seems to hurt her so much ! does anyone know what i mean ???

[kiwibird27]

Know exactly what u mean, Ignoring all my daughters other issues u the main one is food, spitting out, not tolerating, living on Elecare forever??? MAYBE??? No one really knows!!!

I just can't feed her food...full stop....and when i do I live in fear she will stop tolerating her Elecare..what then???

Food is such a major part of society but I know if I continue to push her then she will eventually behaviourally never want food again, even when she can eventually take it....and wait her to be developmentally ready to want to do what everyone else is doing...eating and swallowing.

We are tracked closely by a GOOD speechie which helps, it's more support for me and giving me ideas on how to keep oral motor stuff going while we wait for her body to catch up.

I go some chew toys from an online speech therapy shop to hopefully get her chewing.

How do I cope..... It's been going on for so long that I am indifferent to her eating, If she eats great, If she doesn't, so b it, my values have changed when it comes to food, I want to make her as happy as possible, and if food makes her sick she doesn't have to eat. But then all my values have changed because of her hospitalisations, am just happy she is alive and has quality of life.

Please join us in the SN chat, Special needs includes u, ignore the hospital Mums constant banter about tubes and stuff, You are going through the same thing as us, just with different issues, Every different thing that is wrong with a child evokes the same response from Mums, the need to help their child at any cost to themselves, from the parent of kids with constant ear infections, to the Mum with a reflux baby, to the parent with multisystem disorders, to cancer parents, we all feel the same stuff.

Hope I helped:ecomcity::ecomcity::yelclap:

[bossoflatch]

thanks stacy .. needed to hear all this stuff... :hugs:

physically we now she can eat.. ie she will eat and swallow foods but a) her bowels seem to react once ./ if it makes it there depending if she vomits or not *sigh* and b ) the second/ third time she is offered the same food she is really keen to eat it but can only tolerate a mouth full b4 she starts shoving fingers down her throat after she has swallowed it then she gags whatever to get it out..

i dont push any more.. i figure she is surviving on elecare infact she does look great.. healthy infact.. so really shouldnt complain - its just the days.. well everyday when she wants to eat food and we find chewed food she has stolen ./ grasped from the boys on the floor meshed into the carpet and her still fighting to get into the cupboard for food that she wants..

she loves sucking on ice.. the only thing no matter what that she can tolerate day after day .. and with the other foods she will eat the first time..her bowels seem to react and as you said i think - she then refuses to take her elecare - im assuming coz her stomach is sore from the food/ protein issues.. and then the bowel reactions start

WHY IS IT SO HARD FOR OUR KIDS?? :hugs::hugs::hugs::hugs: to us all

[DoulaRobyn]

Many :hugs:to you - it is a real challenge.

My son suffered from a severe silent reflux and even though most of the problems of this stopped at 3.5 years the learned behaviour of vomiting food didn't. He still has some strong food aversions where he really refuses to eat something and will vomit if he sees fit (if he thinks this will mean he wont have to eat it then). The last time he did this was over a dish that had mushrooms in it when we had dinner guests over, I think it is half something he thinks about too much so in fact makes himself do it in a way but also something that he doesnt have total control over.

I know that this is not totally the same as your case but, I just wanted to tell you that I empathise with you. It is hard when you know your child needs food to survive, especially when they are very underweight but that there is a fear associated with eating - of pain - and also sometimes the body just rejects the food. I used to give Jayden alot of hospital grade sustagen - love that stuff, really got us through some hard times.

At the moment I am having a hard time getting my son to eat breakfast, he tells me that his body isn't ready for food so early in the morning, also tells me that he is getting pains again but the dr has prescribed some sort of zantac. Might have to bring the sustagen out again because school resumes next week and I can't send him to class without food in his belly. He calls sustagen is liquid food ;)

[naomis mum]

hi leis...

im sorry that you are still going through this..its so hard to have a child with challenges, but be assured you are doing the right thing with her. Maybe its is somewhat behaviour driven, maybe it isnt, but either way, you are doing the best in fighting for answers. never give up hun. join us in the chat...we are all going through essentially the same emotions just as stacey said...:hugs: