Question about food refusal & Feeding tube in AS

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CountryRose
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25 Sep 2008, 1:25 pm

Hi Everyone,
My 7 year old son was just diagnosed with AS just recently, now I have tons of questions because :? I am totally lost on how to help him with his feeding issues. My question is Does anybody have any insight about how to handle or know if anybody had to deal with a feed tube cause by food refusal (taste,smells etc...)
THANKS :wink:



anbuend
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25 Sep 2008, 1:55 pm

I haven't, but I'd also check into medical reasons for it. For instance, when I was on certain anti-convulsant medications it changed my sense of taste so that nearly all food was disgusting. Migraines, nausea, reflux, and a number of other conditions can cause a distaste for ordinary foods, and some of them can make any taste or smell sensitivities worse. Jaw and facial nerve problems can (in my experience anyway) make eating so unpleasant that if I didn't know I had to I wouldn't do it, and they also make me (through causing pain) more sensitive to any unpleasant sensation that might otherwise be only mild (and if hypermobility is more common in autistic people, which some people say it is, then jaw-related problems would also be common). And there are also strange things, such as in my family early-onset gallbladder disease, that can cause revulsion to a lot of different foods (and in my case I did not show pain in a typical manner so it almost went unnoticed, even though by the time I got it out there were two large gallstones and the organ had shut down entirely, and it was quite painful -- I just don't show pain normally). Same goes for intestinal blockages, whether full or partial (I've also had my share of those, also usually getting to a pretty bad point before getting treated).

I am sure you have checked at least some of these, but I wanted to mention them since a feeding tube is a drastic step, as I'm sure you know. Often when autistic people have medical problems they'll get blamed on autism itself, or else overlooked because we don't show them in ordinary ways. (In my case this led to a number of medical things going untreated until adulthood, by which point they were way out of hand, but they had been there, sometimes in fairly severe form, sometimes more mildly, since childhood.)

Standard procedure among doctors who are competent when it comes to autism (and I'm talking about ordinary doctors here, not ones who use specialty labs who cook up their own results for testing to get more money coming in), is to give more testing than usual, and look for everything that could be wrong, on objective tests, because autistic people, even highly verbal ones, are often not good reporters of subjective sensations. And even if we report some, it doesn't mean we can report all of them. As another example there was even one boy with an Asperger diagnosis who was acting a bit strange and it turned out he had a crushed testicle. As a woman I don't know what that feels like, but I asked a man who had it happen at the same age as that boy and he said it's excruciating and most people would be screaming.

So... yeah. Given how many things in my life were just written off as behavioral, when there were physical reasons behind them that were later discovered through testing, I really hope that whoever the doctor is has been extremely thorough about ruling everything possible out as a cause of the picky eating before taking such extreme measures.


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anbuend
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25 Sep 2008, 1:57 pm

Adding -- also, you might be interested in this post about eating disorders in autistic people, made by a friend of mine who has an eating disorder related to sensory sensitivities. (That combined with him having serious problems with even making food even when he wants to eat it, and then trouble with eating it too, led to him almost starving to death at one point. He said he started smelling like ammonia and couldn't wash it off. And I can remember him visiting when he was severely underweight. It was pretty bad. You might want to talk to him.)


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blueroses
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25 Sep 2008, 2:18 pm

Hi CountyRose. Welcome to Wrong Planet.

No, I don't know anyone with AS who has had to have a feeding tube. I know many Aspies who have sensitivities to particular food textures or flavors and avoid certain foods, as a result, though. It is not that they are being deliberately difficult or have behavioral problems, either. Sensory sensitivities are very real things. My ex-boyfriend, for example, was very health conscious and actually wished he could eat a more balanced diet, but just couldn't do it.

Does your son already have a feeding tube? I feel horrible for him, if he does. That sounds traumatic for a 7-year-old. I wonder if Sensory Integration Therapy might help him with his food aversions? A feeding tube isn't a long-term solution and they'll need to treat the root of the problem eventually.

If you are new to AS and sensory sensitivities, Tony Attwood has a good chapter about it in The Complete Guide to Asperger's Syndrome. If you haven't already, I'd recommend buying that and reading it cover-to-cover. It's really the closest thing I know of to an Asperger's Bible.



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25 Sep 2008, 2:26 pm

Hi, and welcome!

Have you tried blending things? When I was little my parents ended up liquifying a lot of stuff to get me to eat. I was picky too because of my sensory issues. What foods does he eat on his own? You should note their characteristics and try to get things with similar textures, etc.


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Belfast
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25 Sep 2008, 5:32 pm

Is good to read of parent (OP) who even is aware of such a possible reason, while child is young & before blame might get placed on kid for something beyond his control.
Am grateful my nutritional situation was such that I never required medical intervention.

blueroses wrote:
I know many Aspies who have sensitivities to particular food textures or flavors and avoid certain foods, as a result, though. It is not that they are being deliberately difficult or have behavioral problems, either. Sensory sensitivities are very real things. My ex-boyfriend, for example, was very health conscious and actually wished he could eat a more balanced diet, but just couldn't do it.

Just wanted to second this explanation, 'cause this is exactly how it was (and still is) for me, too.

Growing up, my behavior (refusal of most foods, except for some-not all-sweets) was taken for a willpower problem, or that I was being obstinate in order to spite my parents. Utterly ridiculous. It's pure sensory stuff, but such interpretations weren't available back then, so it was branded upon me as my fault/choice.

My problems didn't go away once I became adult (and no longer had to justify/defend my choices to others)-proof that it was never about other people, it's inherent issue for me as an individual. Thank goodness I finally got this (AS) dx and learned (better late than never) about sensory troubles (over & under sensitivities), as valid category of different perception.

Texture, mouthfeel, chewing consistency, flavors, visual appearance of foods: there's a lot of ground to cover, and "gustatory sensitivity", "oral defensiveness", or "tactile hypersensitivity" are an under-researched area (in my opinion-as an articulate adult who can interact with professionals & give my conscious reasons, for why I react how I do to various stimuli).

Thanks also to anbuend for that link to Joel's blog-great post & plenty of comments, many of which make me nod my head furiously, emphatically. Strongly recommend others check out that entry.


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26 Sep 2008, 1:23 pm

I refused to eat a lot as a kid. Usualy it was because I was too anxious to eat or didn't like what was offered. Usualy it was becuase I was too anxious. My mother always threathed me that I was going to need a feeding tube, only making me more anxious. My parents usualy had spagetti EVERY night. I HATE spagetti. I can smell it from the other end of the house. I wish my mom would make the sause from strach. Usualy we always had pasta like foods and when I would complain my dad would say condensendaly, "Well maybe tomorrow we will have something that you like!" Acutaly we usualy just had leftovers the next night. Spagetti left overs are the worst. Espicaly when you lazilay mix the pasta and sause together in a plastic bag and let it sit in refrigeration for a few hours. It comes out slimey and just gross. My parents and just about every other NT say spagetti taste ten times better when the sause and pasta have been mixed together and let to sit in the refridgerator. NT's are weird. I can't eat salad without going into sensory overload. Too many diffrent tastes and textures mixed together. My mother has to put all the vegetables onto a plate seperated for me.



CountryRose
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26 Sep 2008, 1:59 pm

Hi Everyone,
Thanks for reply to my comment,Just too give you more info about my son, he has been through alot for a 7 year old. Frist off he has HFA, AD/HD,Oillers disease (bone disorder) & ODD. He already has a feeding tube placed in since August 2007 this was placed in only after 2 1/2 years of trying to help him eat more with no luck. This was a last resort he was so under weight it was not funny. He was 28 pounds when we took him too the doctors 2 1/2 years ago , he weighs 51 pounds now only because of the feeding tube. He was always a picky eater(to the max end) as a baby but he did eat some but when he turned three things started to go down hill in the eating dept . This medical trip started when he was 15 month's old he had back to back UTI and was in the hospital for three day's ,just after getting release from the hospital he was placed on a month of antibotics during that time he went to see a kidney doctor, she ordered x-rays,VCUG,ultersound of his kidneys while doing the VCUG she noticed he had black spots on his L-femur,R -rib and both hips. (no kidney damage or probelms)So she sent him too a bone doctor to check out the bone findings. He had to get MRI done & bone scan, they diagnosed him with fibrous dysplasia. For next 2 1/2years he under went 2 more bone scans,2 MRI,alot x-rays,1 cat scan( all done had to be done under local, because he throw up the liquid &refused to take it) before we switch doctors because we were not happy with the results of Cat scan. New doctor did a bone biopsy on his r- rib& L- femur it turns out during the time of getting him ready for surgery the blood test came back showing low iron & hemogoblin levels so he went to a blood doctor and was told he had iron poor anemia had to bring up iron &hemogoblin levels which caused him to be backed up went too GI doctor found out he has stool with holding probelms. But all this time he was diagnosed with AD/HD,ODD not aspergers we also did a roller coaster ride of meds to find a combo that worked also switching schools around too. Thats when we got the diagnose of Aspergers . Also went to a cancer doctor inbetween that too because the new bone doctor told us he has Oillers disease not fibrous dysplasia. Oillers has a 30 % chance of changing into cancer, plus he was having pain and stiffness and dragging his one foot.( no cancer) Now he has too go to a ENT because he is having swallowing issues with his food . As a baby he suffered alot of ears,throat affections even now when he gets a cold it turns into a affection of the ears or throat because when he gets a cold it last for three to four weeks. Also he did suffer a mild prenatal stroke when he was born too. Its been crazy :roll: & :( . That is why I am looking for anwsers and how to help him with it. Thought maybe that the Aspergers was adding to his feeding issues.
Thanks :wink: