Re: Not interested in food

[Guest guest]

All I can add is that my son was absolutely dreadful at mealtimes he ate barely enough to stay alive, the reason for him was pain, it actually hurt him to eat!

After yrs of gut healing he would now eat anything put in front of him and everyone else's as well.

Vicky

[Guest guest]

Hello ,

there was a discussion on this a little while ago starting with

message No 13799. Have a look at that and see if there is anything

useful for you there.

It would be helpful to know what his bowels/stools are like to see

if there are any clues there as to why he dislikes eating so much.

Also looking at the food he will willingly eat i think uyou also

need to ask about the Low Oxalate Diet. The reason i say this

is that Almond nut butter is High Oxalate (as are nearly all nuts)

or could possible be very high as it is a fairly concentrated paste,

carrots are high if raw or Medium if cooked, green peppers are high

but red are Low - just wondering which if any he chooses to eat

first, if it is the green this could be a clue that he is craving

something that is bad for him. Could not find rice cakes on a list

anywhere but white rice is Low, brown rice is Medium. So even though

he likes eating these things they could be bad for him. Needs

investigating IMHO.

Hth, Nikki

> Hello

> I have been reading e-mails on this site for a good few months and

found it helped knowing I was not alone in this fight to help my

little boy. I do not know if anyone will relate to what I am about

to say so here goes....

> I have a 3 year old son who has been under Muscroft for

almost a year on a full biomedical programe, We have also been doing

ABA for a whole year. Calum is coming on really well and is in the

advanced stages of his bio programe, on an endless list of sups and

TTFD, antivirus,MB12s, LDN and about to start TD-DMSA. In every area

we have major progress, and I can say he is recovering at a slow

steady pace. We have one area that is just hell and that is eating

or the lack of it. It is as if Calum has no feeling of hunger and

the only things he will eat by choice and feed himself with are his

beloved rice cakes with almond nut butter, sliced carrot and sliced

mix peppers. I have to force all his meals in, and have done for 18

months. As you can imagine this is awful and life is even more

stressful than ever as we have to be at home for the battle at every

mealtime. We have tried various ABA methods to get Calum to eat but

he is not interested at all and would starve himself given the

choice (he is 3ft 3 and only 2 stone 2 pounds). He is a bright

little boy and can feed himself but chooses not to. I end up sat

with DVD's, puzzles, books etc trying to distract him to push in a

spoonful. It can often take up to 2 hours to get a small bowl of

food down him. He will scream and cry, pushing you away saying " No,

finished " and look at me as if I am trying to poision him! has

no idea as to why he will not eat and has not come across a child so

far into the programe who will not do so. I am not expecting anyone

to come up with a magic answer but just looking for any similar

stories that can give me a bit of hope! I am hoping that the

chelation will help unblock whatever is stoping him tasting/enjoying

food.

> Anyway thanks for reading! Must go and start round 3 today with

dinner!

> Thanks

>

> x

>

[Guest guest]

Thank you so much Vicky, I am glad to know your son now eats and lots too! I hate to think of my son in so much pain. I am going to contact my Doctor first thing and ask to have him refered to a gastro specialist as he cannot go on like this.

Thank you again! for all your support and kind words.

x

> Message Received: Sep 24 2006, 09:31 PM> From: MaddiganV@...> Autism Treatment > Cc: MaddiganV@...> Subject: Re: FW: Re: Not interested in food> >

>

All I can add is that my son was absolutely dreadful at mealtimes he ate barely enough to stay alive, the reason for him was pain, it actually hurt him to eat!

After yrs of gut healing he would now eat anything put in front of him and everyone else's as well.

Vicky

[Guest guest]

In a message dated 24/09/2006 21:42:42 GMT Standard Time, markchilds@... writes:

Thank you so much Vicky, I am glad to know your son now eats and lots too! I hate to think of my son in so much pain. I am going to contact my Doctor first thing and ask to have him refered to a gastro specialist as he cannot go on like this.

Thank you again! for all your support and kind words.

Dear

I meant to reply to you yesterday but forgot actually... I think Peta answered by saying that do you think its possible he has bowel problems? This was the fisrt thing that struck me when I read your post. Does he have distension of his abdomen sometimes? Or pain before/after stools/ or general pain around the tummy area. Not sure if you know about posturing which is when a child will lie in a funny position to put pressure on their abdomen, does that sound probable? Some kids, balance on tables, chair arms, lies on the floor or sofa with her fists stuffed into her lower abdomen or with her bottom very high in the air.

Also are the stools an odd colour smell, shape, consistency, frequency, length etc. All things to tell your GP or paediatrician about. One of the DANs in this country forund 24 of 25 kids she recently sent for bowel x-rays had overloaded bowels. This is what you could ask your paed for first. They might say something like the bowel is full of pooh or overloaded or stretched.

I wondered if you used probiotics or Digestive Enzymes because these might help with bowel health and digestion of problematic foods. We use Houstons which are great and you can buy from www.mandimart.com. Also maybe a dietary trial like Specific Crabohydrate Diet may help. Some of our listers here do this and will be happy to help you if you want to know more.

I think Jacqui/Nikki also said to you about Oxalates. His choice of foods also seemed to me to be medium or high oxalates, maybe thats significant. Sorry lotsa questions and not a lotta advice.

The other thing I wondered was is he tactile defnsive? Eg would he have problems holding the spoon. This was the case with for years. If not what about helping load the spoon and leaving it for him to pick up might help. I know you will know this already if you are ABAers but in these circumstances if he is using mealtimes to play up a bit (doesnt sound totally like that, I am more inclined to think of bowel stuff going on) but if it is attention related dont give much or chat too much at mealtimes. Physically prompting from behind with little langauge might be useful to try this has been a great technique for us cos its less intrusive and the language for (auditory sensitivity) is always bad news when she is already stressed out. Other things I thought of were to have a big timer and increase the time he needs to eat for. Also a very strong reinforcer for after dinner, lotsa praise, but again you said you were experienced ABAers eg loadsa input about this so maybe you have tried this already.

We had lots of problems with s eating and tried heaps of stuff. Sometimes we would try a picnic or sitting on the floor at a rug for an indoor one. To get away from the battle ground is important, food is fun and family isnt it, but not for you at the moment...

Dont know if any of this helps but good luck and we are all thinking of you.

Lotsa Love

Caroline

xxx

[Guest guest]

,

>>>>>>>> Calum will go for red pepper everytime and will not eat the

green pepper at all.

This is probably a good sign that he is not craving oxalates or as

in my ds case does not like to eat green coloured foods!!! Veggies

are a big No-no here :+( I would still investigate it though just

in case, does he have any other symptoms? In the files of the

Trying_Low_Oxalates

there is a list of parent reported symptoms and also food lists,

lots of useful info actually, have a browse and see what you think.

>>>>>>>>>>> although it does fill me with fear to even think about

taking the only food he likes away.

mmmmmmmmmm, yes i know exactly how you feel,when you have a child on

a limited diet taking stuff away he will eat really does seem to be

the wrong thing to do.

>>>>>>>>>> Calum does move his bowels (sorry!) every day at least

once normally twice (all since the bio protocal). He we make sure

his mineral levels are up. We do have to use good old oxy powder

every couple of weeks (roughly) as he totally refuses to eat then

and you can see his big hard belly showing consitpation.

Getting an x-ray done as others have suggested would be a good idea

IMO, having to use oxypowder that regularly would suggest a sluggish

bowel that needs investigating.

Nikki

[Guest guest]

Hi ,

I can definitely relate to your story, we've been in eating *hell* since day one! Things are much better for us now and we've had lots of help from a paediatric feeding team although this was before 's dx. One thing that I read recently was in Donna book Somebody Somewhere she states that she cannot differentiate feelings of hunger, cold and needing to go to the toilet - they all felt exactly the same in her body. She really has to remind herself to eat as she has virtually no physical connection with feelings of hunger. I think this is true for many of our kids.

My son never ever cried for formula and it seems that he could probably starve himself to death. Fortunately his weight has been good and he is big but there were periods of time when my life was almost entirely dedicated to keeping his weight up. This was mostly a battle to get him to drink 8 or 9 bottles of milk a day. He is still drinking loads of milk but he will now eat quite a few foods and even swallow them, lol. He actually likes food now as an interesting thing to do every once in a while but not enough to sustain his weight. He's two and 4 months and he still will only drink milk and only from a bottle...I'm only saying all this to let you know that you are not alone, on the other lists there are parents whose kids are pretty bad off too.

I recently read quite a few studies on ABA and feeding and found them quite encouraging and the paediatric feeding team have explicitly supported ABA for his feeding difficulties. Unfortunately we have not targeted his feeding yet with the ABA so I don't have any advice, but I suspect you've heard it all before!

The advice to find out if he has pain or anything like that is defintely worth looking into, it's so hard to know what's really going on sometimes.

Hang in there, it is such a struggle when they have no desire to eat.

All the best,

Darla ~who really must do something other than dorking around on the 'puter!!!!

In a message dated 24/09/2006 16:57:08 GMT Standard Time, markchilds@... writes:

We have one area that is just hell and that is eating or the lack of it. It is as if Calum has no feeling of hunger and the only things he will eat by choice and feed himself with are his beloved rice cakes with almond nut butter, sliced carrot and sliced mix peppers. I have to force all his meals in, and have done for 18 months. As you can imagine this is awful and life is even more stressful than ever as we have to be at home for the battle at every mealtime. We have tried various ABA methods to get Calum to eat but he is not interested at all and would starve himself given the choice (he is 3ft 3 and only 2 stone 2 pounds). He is a bright little boy and can feed himself but chooses not to. I end up sat with DVD's, puzzles, books etc trying to distract him to push in a spoonful. It can often take up to 2 hours to get a small bowl of food down him. He will scream and cry, pushing you away saying "No, finished" and look at me as if I am trying to poision him!

[Guest guest]

Hello Caroline

There are so many lovely people on this site who all have their own problems with their children but still make time to give advice thank you so very much. I hope your little girl gets better soon it is so horrible when they are ill.

Yes Calum is on enzymes, HCl & Pepsin and probiotics amongst a very long list of sups, we have been with the wonderful Muscroft for coming up to a year so our list is very long. Poo talk warning!! Prior to biomed when Calum passed anything it was like he was giving birth and the pain he was in was awful. We now have regular poops good colour with no food bits in so enzymes are doing the job (kirkmans isogest II formula). Since the protocal he nolonger wants pressure on his tummy before he would hold your hand hard against it and want you to keep it there for hours, and now the majority of the time he is not in pain when he goes. Calum is still in nappies so consistancy depends on how fast he comes and tells you he needs his nappy changed or you get a wiff first!! (hard to toilet train when oxy powder is being used!!).

Calum's diet is very strict he is GF/CF, yeast, sugar, corn, soya free and his diet is organic meat, veg and 2 pieces of fruit a day that is it with water (filtered) and kallo rice milk. He is more or less SCD and has what I can a caveman diet.

No, he can hold a spoon very well but just chooses not to! If made he will pretend to put the spoon in his mouth by letting it touch his lips and say "yummy!" he is too clever for his own good!

I have an appointment with our paediatrician today might as well make himself useful for once as he has done nothing so far so hope I can wear him down and get a referal.

Thinking of you to.

xx

> Message Received: Sep 25 2006, 08:54 AM> From: CarolineTraa@...> Autism Treatment > Cc: > Subject: Re: FW: Re: Not interested in food> >

>

In a message dated 24/09/2006 21:42:42 GMT Standard Time, markchildschelsea87 (DOT) freeserve.co.uk writes:

> Thank you so much Vicky, I am glad to know your son now eats and lots too! I hate to think of my son in so much pain. I am going to contact my Doctor first thing and ask to have him refered to a gastro specialist as he cannot go on like this.

> Thank you again! for all your support and kind words.

Dear

I meant to reply to you yesterday but forgot actually... I think Peta answered by saying that do you think its possible he has bowel problems? This was the fisrt thing that struck me when I read your post. Does he have distension of his abdomen sometimes? Or pain before/after stools/ or general pain around the tummy area. Not sure if you know about posturing which is when a child will lie in a funny position to put pressure on their abdomen, does that sound probable? Some kids, balance on tables, chair arms, lies on the floor or sofa with her fists stuffed into her lower abdomen or with her bottom very high in the air.

Also are the stools an odd colour smell, shape, consistency, frequency, length etc. All things to tell your GP or paediatrician about. One of the DANs in this country forund 24 of 25 kids she recently sent for bowel x-rays had overloaded bowels. This is what you could ask your paed for first. They might say something like the bowel is full of pooh or overloaded or stretched.

I wondered if you used probiotics or Digestive Enzymes because these might help with bowel health and digestion of problematic foods. We use Houstons which are great and you can buy from www.mandimart.com. Also maybe a dietary trial like Specific Crabohydrate Diet may help. Some of our listers here do this and will be happy to help you if you want to know more.

I think Jacqui/Nikki also said to you about Oxalates. His choice of foods also seemed to me to be medium or high oxalates, maybe thats significant. Sorry lotsa questions and not a lotta advice.

The other thing I wondered was is he tactile defnsive? Eg would he have problems holding the spoon. This was the case with for years. If not what about helping load the spoon and leaving it for him to pick up might help. I know you will know this already if you are ABAers but in these circumstances if he is using mealtimes to play up a bit (doesnt sound totally like that, I am more inclined to think of bowel stuff going on) but if it is attention related dont give much or chat too much at mealtimes. Physically prompting from behind with little langauge might be useful to try this has been a great technique for us cos its less intrusive and the language for (auditory sensitivity) is always bad news when she is already stressed out. Other things I thought of were to have a big timer and increase the time he needs to eat for. Also a very strong reinforcer for after dinner, lotsa praise, but again you said you were experienced ABAers eg loadsa input about this so maybe you have tried this already.

We had lots of problems with s eating and tried heaps of stuff. Sometimes we would try a picnic or sitting on the floor at a rug for an indoor one. To get away from the battle ground is important, food is fun and family isnt it, but not for you at the moment...

Dont know if any of this helps but good luck and we are all thinking of you.

Lotsa Love

Caroline

xxx

[Guest guest]

In a message dated 25/09/2006 14:47:55 GMT Standard Time, rexel45@... writes:

Darla ~who really must do something other than dorking around on the 'puter!!!!

Tell me bout it honey, I been here on and off since 9 am today, its great have caught up on my messages. Becks is much better and we been chillin real good. Its great not rushing around!! Now we go for a wee trip to ASda if we can squeeze that in and then dinner time, where does the time go, tee hee!!

Lotsa Love Caroline

xxx

PS Now we just ghotta fix the yeasty bum that the antibiotics have given her... sigh, always summat!!