urgent advice needed my son eating is awful and i am beyond worried!!!!!

[lynne192]

My son was born 2months premature, he was 4lb 5.2oz at birth, he was breastfeed until he was diagnosed with GERD at 9weeks old and breastfeeding was advised to stop by stupid nurse, by the time a doctor found out he was on bottle milk it was too late and my milk had dried up. he was put on solids at 12weeks because he was always sick and was a way to try and keep things down. it helped slightly....

at 1year old he was eating alot of powder and baby foods but when it came to changing him onto more solid food he started refusing to eat. we tried to change him back to smoother foods but it was too late and he has almost developed a phobia of foods, we thought he was just being fussy, we tried so many different things and wasted sooo much money and food, we were willing to try anything... anyways after 2.5years of this problem i have begun to get beyond worried, i have been to doctors and it took them about 18months to really take notice of what i said. my son was in hospital over a year ago with intestinal blockage which was only resolved with an enema, which did help but he has always had this problem. he has been sent and seen by a dietitian but she wants him to get diagnosed with ASD or something before she can really help she doesn't believe its how we deal with food that's the problem but the way james see's food and how it feels to him physically and emotionally..... anyways at the moment and for the last roughly james has either eat nothing or this is his max daily intake:
4-5 cheerios a day (not bowls single cheerios)
1/2 a Clementine (small one)
3 small fromage frias
50-75ml of orange juice
& 180-200ml of milk.

he has delayed mentally and physically abilities. he has very limited Communication skills. i have tried fighting with him to eat, i have tried being relaxed and just placing it down and letting him try it (which he never does) i have tried new foods i have tried old favs i have tried sticking to the same foods, i have a tried taking the milk out his diet which does nothing but lower his calorie counts, also got him to help me prepare foods too nothing.....

i am beyond ideas on what to do and would be really grateful if anyone has any suggestions about what i can try????

please i really don't want my son to get sick. he has less than 400kl intake per day! i am worried about him he has never been prone to getting sick and even when he has swine flu he has it for 48hours! anyways has anyone been through this or got tips hints etc...

james atm has suspected Aspergers syndrome, AD/HD & OCD but they wont dignose him cause he is only 3 and might change etc.....

He atm is meant to be getting SALT, Psychology, OT, dietrican & Behavourial therapy.

 

[Midnight_Fairy]

Hi hun. I know how you feel. My daughter is the same, Its sooo frustrating! I have no advice as I am going through this myself but stay strong and try not to worry xx

 

[Tegans Mama]

Tegan is exactly the same as this. She eats like a bird. If he is seeing a dietician I would try to trust what they say.

 

[lynne192]

what conditions do both your children have? has it been effecting it and what help have you been offered?

 

[Tegans Mama]

Tegan has Spina Bifida, Hydrocephalus and Chiari Malformation. Her food aversions are caused by the CM. There is nothing at all we can do about it except let her eat what she will. We were referred to a dietician who told us to give her vitamin drops, as much chocolate milk as she wanted (thats the only thing she will drink) and just leave her to it.

 

[lynne192]

aw hun sounds like you have your handsful. and understand what they mean by letting her eat whats she wants. i hope there is somethig that cames up soon that can help with her eating. i am just at wits end with james but seeing H/V tomorrow and dietrican again next monday so we'll see although dietrican said there is nothing she can do without a dignosis.

 

[capel]

My daugther was like this. She would not eat, only drink. I was going mental. Until she was seen by the speech and language therapist. She realised that she lacked the physical abylity to swallow. After some work on her she started eating a liquidised diet (it took around 5 months). And she was in this stage for another 2 years. Now she is in a mashed solids diet. But she still can't deal with lumps. But before I saw the therapist she wasn't feeding for 6 months. All doctors and health visitors had lots of advice, that I sure would be great for a non disabled child, but it was useless for us. Untill I was refered to the SALT team because of different issues. But that changed our lives. She still eats like a baby, but at least she is not underweigth anymore. She is a happy 5 year old.

 

[lynne192]

we have a SALT but nothing has really been said about his eating there we seen a dietrican and she thinks its psychological. we are being refered to a psychologist but this could take ages..... so i am worried as hell until then... james' isn't extremely underweight he has always been extremely petite. so they just keep comparing him to me but i have a metobolic condition... i dunno what to do other than worry... trying to up his calories any way possible but he also has problems with his concentration, sleeping and going to the toilet etc... so i dunno.

 

[Wishfullmama]

I dont know if this would help or not, but I have a daughter with dysphagia, and when she had her swallow study done by the speech therapist, I was told if she was having issues with her diet and not gaining proper weight, they would refer her to the eatting program at the hospital. With this program, they help children eat properly and help find ways to get nutritional needs met (no matter if they have Autism, ADHD, Dysphagia like her, etc. etc.) It seemed like a great program! They go down there for a short visit, and they have a whole team working with the child (Speech Therapist, Dietician, Pscyh, Pediatricians, everybody!) Luckily my daughter didnt need to go because she eventually had gotten used to her diet changes and now eats well, but I was wondering if maybe they had those options available to you?
I hope things work out for you, I know it is frustrating

I dont know if this helps or not, since you are in the UK, but here is a link to show how the program works
https://www.helendevoschildrens.org/body.cfm?id=36&action=detail&ref=152

 

[lynne192]

thanks hun sadly there isn't anything like that here for me or wee man

 

[kelzyboo]

Awww hun i feel for you i really do, his eating habits sound very extreme, far worse than any problem i had with my daughter's eating (she has ASD). Food phobia's are very real and need to be dealt with by a psychologist and dietician, i really hope they can help him deal with his issues.

My daughter was always a very picky eater and had quite a limited diet, worried me sick to be honest, she wasn't severly underweight but wasn't gaining either, she has a problem with certain textures it has to be crunchy, mashed or soggy wasn't an option, wouldn't have milk on cereal or sanwiches unless bread and fillings were seperate and no butter or she would have a meltdown!!

He sounds a lot more extreme but my daughter is slowly eating more now and gaining a bit of weight (took me 5 years of worry!) so it can end well

This has probably been said but have you tried different cereals? maybe coco pops or others aimed at kids, maybe try an eating reward chart? i tried seperate plates, one plate the food that she wanted, the other something different i wanted her to try, even just a bite is a start? Maybe put the clementine out and a banana or other fruit and ask him just to try one bite? have to persevere with this one but eventually i got my daughter to try some things, didn't like most of them but hey she tried it! Maybe try strawberries or grapes, they are small may feel like less of a challange to him?

Not sure any of this will work but some of it did for us, i just asked her to try if she refused i took it away, the last thing that will help is forcing them it just reinforces their feelings of not wanting to try.

I hope you find something that works for both of you xx

Have you tried incentives? you probably have but how about you say just one little bite and then you can go to the park or something he likes doing? i know how hard and frustrating it can be, maybe try the new foods with him, as if you've never tried it before and make a huge fuss about how yummy it is, and if he takes even the tiniest of bites make a huge deal about it, may help his confidence in trying things.
I don't really know much but this is my experience, it won't change overnight its a slow and painful process (one we're still working on) but maybe some things will help and introducing just one more thing to his diet is better than nothing. its brilliant that he's drinking milk, my daughter won't touch it and it will help his calories!

Hope you see someone soon and get some help with it, chances are something will work for him its just finding it thats hard! xxx

 

[lynne192]

thanks for advice hun tried most of that james doesn't have the understanding to cause and effect etc and his vocab is extremely limited so its not always easy most of the time we have to let him decided from the fridge what he will want but usually he doesn't usually eat anyways, i tried taking doctors advice and if he eats just chocolate then leave him to it but often he even refuses sweet stuff... he has soo many fears and phobias if you try to offer him food he is uncomfortable with then he fears we are or the food is trying to kill him and goes off food completely, he has often went on hungry strikes, being at nursery helped him until the nursery changed their snack time, they used to get them to sit and talk and then often they would eat, but they then changed it to if they wanted to eat then they could go in and get something, because my son didn't need to go in and didn't see other people eat he wouldn;t tear himself away from his activity to eat, he did get a few good habits from the old way because he seen others eat it that it was safe etc, but its different with us i don;t know what it is its not like he thought everything was safe only one food... but it was progress? i dunno i feel soo lost but tried almost everything.... ah.

 

[kelzyboo]

I'm so sorry, must be so difficult and frustrating for you, i have no other suggestions, i wish i did but it seems like you've done it all! All i can say is keep calling and pushing for an appointment as soon as possible, sounds like you desperately need it and keep trying with him, if you just leave a selection of foods he will eat out on a table you may find he will have a nibble randomly, whenever he feels like it.

I really hope you both get some support soon, he's a beautiful little boy xx

 

[mickey]

OMG, I'm really sorry to hear you are left alone with the problem and docs don't want to help.

if your son is suspected to be Aspergers is most likely the cause and he needs therapie!

how long do you still have to wait for the app at psychologist?

did you try to let him choose?

what were his fav?

with Aspergers often textures is a problem...

if you try to let him choose from 3 of his fav?

 

[lynne192]

thank you all for your support and imput we seen the dietrican on monday and she has discharged us and refered us to psychologist as she said there is little/nothing she can do for james. so here's hoping something will happens soon....

 

[Newt]

I hope you find a solution soon

 

[lynne192]

thanks hun me tooo.