My Youngest Son Is Not Coping At All Now

[hh73]

Have any of you ever seen the film or movie, called 'Rain Man, by Dustan Hoffman?

On that film, he made it after months of studing Autistic Children and adults with Autism.

well, in the movie he wore only Fruit-of-deloom underwear. He also watched his favorite television program every day at the same time. His brother took him on a long road trip. When he could not get clean umderwear or see his favorite tv program, he went completely nuts and scream loudly and jumped up and down on the floor. He was a grown man but, he still acted that way, anyways.

Once, Autistic children fixate on a certain, program, clothing, or food, hell or high water will not change their minds or attitude. He is acting this way toward me at present time. He has fixated himself on certain foods in my house and will not deviate from that course. Those with Autistic Children, how did you get them to change their minds? What methods has worked for you? Pulling this Rain Man trick could casue him to harm himself or others around him. Should I have to go back to all those foods he use to eat, jus because he cannot accept anything new? If he himself does not choose the new food, he will not touch it absolutely.

Thank you for providing this insight. I am totally ignorant about autism, so this is a big help.

Why not make gluten free foods that are identical to what he was eating? Make gluten free "evil twins" of Hot Pockets and everything else he was eating. You know better than us - would that work? Maybe its worth a shot. You can look up what ingredients the manufacturers use by reading the box or visiting their websites.

[rdunbar]

ravenwoodsglasses' post is spot on, and totally from the heart.

please listen to her!!

I was a caretaker for an drastically autistic man over 15 years ago for about a year, so I know a little about how frustrating it can be. I was the caretaker that got along with him the best, too. he always hit everyone else, but never me. I think it was because we were on the same wave length to a small degree, and he picked up on that. I had many amazing experiences with him, and am convinced that his intelligence level is off the charts, and he is actually very very perceptive, though utterly withdrawn.

I've always felt like i was border-line autistic myself, and i have many of the same traits, albeit much more mildly. I'm still a huge loner, and social skills are'nt my strong suit, thats for sure.

I just want to remind you that expecting him to 'cope' is unrealistic, and is really asking too much. it should'nt be a surprise. you will have to pick up the slack, and have to cope for him for now.

If it was me, i would'nt let wild horses get in my way of doing everything within my power to keep gluten away from my child, knowing how very harmful it is. Of course, that would mean not feeding him expensive packaged "gluten-free" imitation foods, that probably have trace amounts of gluten, anyways.

It's going to take some time for him to accept a new routine, but when he does, and it's really NO GLUTEN, then I swear, you will see an improvement in his condition, and then neither of you will be struggling so much!! saying you don'y have control when he goes to a friends house doesn't float. you DO have control, and it absolutely your responsibility to take it!! If theres gluten at the friends house, you just dropped the ball by letting him go over there, for now. I'm sure it's tough to be firm, but there probably is'nt another way.

I would move 40 miles down a dirt road to get him away from gluten, if thats what it took.

thats how strongly I feel about how harmful the stuff is.

please try to prove me wrong, and If you really get him gluten free for say, a year, and theres no improvement, then you can rub my nose in it.

I know he has Celiac, but i'm talking about an improvement in the severity of his autistic condition.

[dilettantesteph]

I had picky eaters, though not autistic, perhaps borderline Ausbergers. I found that it helps to give them choices. I'd say they need to have a vegetable but they can pick what. I have some choices in the fridge. Then same with fruit, and grain. They liked their food tastes all separate. They ate with divided plates. I also had cut up veggies and dip, muffins, and stuff like that in the fridge for them to help themselves to. They ate more readily if they could help themselves.

They say that with a typical child you need to put something in front of them three times before they might try it. With your child it may take many more times. With my children I would try to get them to just taste something new. I would ask for just one tiny taste and then maybe they'd not hate it too much and the next time I offered it they might take more. Keep trying. Try not to make it a war because then you will lose. Just keep offering a variety of healthy foods.

[Karl Otto]

Last night, my son Ishmael was taken to the emergency room at the local hospital. He was complaining for two days about his stomach. He was also not having normal bowel movements as well. The doctor upon reviewing the lab test results, said his condition was related to his celiac disease. The doctor thinks the disease has damaged his large Colon and small intestines in some way or fashion. So, the doctor put in an order to have him tested in endocrinology and GI department at the local children's hospital. There might be a tumor, cancer, or growth of some kind obstructing his bowels. He was not able to have a normal bowel movement before finding out he was Celiac now, he still has the same problem. As a result the doctors wants further tests done right away. That is where, I stand at this positing. P.S. years of non-treatments of this disease has taken its toll on my son.

[tarnalberry]

Don't have other foods in the house if he's fixating on certain ones in the house. Have ONLY foods that he can eat. And then offer LOTS of things - lots of options, and if he picks one, great. Yes, I mean put 8 foods on the table for lunch and let him pick whatever he wants, but all of it is safe.

[Salax]

Karl, our thoughts and prayers are with you. My mom use to say, "time heals all wounds."

Perhaps with a lot of time, things will heal. I think many of use can agree with didn't truly get sick over night, and our healing took more than a day...time is a factor in life and with disease.

[txplowgirl]

Last night, my son Ishmael was taken to the emergency room at the local hospital. He was complaining for two days about his stomach. He was also not having normal bowel movements as well. The doctor upon reviewing the lab test results, said his condition was related to his celiac disease. The doctor thinks the disease has damaged his large Colon and small intestines in some way or fashion. So, the doctor put in an order to have him tested in endocrinology and GI department at the local children's hospital. There might be a tumor, cancer, or growth of some kind obstructing his bowels. He was not able to have a normal bowel movement before finding out he was Celiac now, he still has the same problem. As a result the doctors wants further tests done right away. That is where, I stand at this positing. P.S. years of non-treatments of this disease has taken its toll on my son.

Oh, Karl, I am so sorry to hear about Ishmael. I hope he starts feeling better now. You both are in my prayers.

[ravenwoodglass]

Last night, my son Ishmael was taken to the emergency room at the local hospital. He was complaining for two days about his stomach. He was also not having normal bowel movements as well. The doctor upon reviewing the lab test results, said his condition was related to his celiac disease. The doctor thinks the disease has damaged his large Colon and small intestines in some way or fashion. So, the doctor put in an order to have him tested in endocrinology and GI department at the local children's hospital. There might be a tumor, cancer, or growth of some kind obstructing his bowels. He was not able to have a normal bowel movement before finding out he was Celiac now, he still has the same problem. As a result the doctors wants further tests done right away. That is where, I stand at this positing. P.S. years of non-treatments of this disease has taken its toll on my son.

Yes years of nontreatment can take a toll on us. It is sometimes even harder to deal with it's results in our children than in ourselves. I hope they are able to figure out what is going on fairly quickly. Do tell them also about the problems you have had getting him to eat. Sending good thoughts your way.

[lynnelise]

My thoughts and prayers are with you and your son!

[busymomof5]

First of all, I want to offer my prayers, and best wishes for you and your son.

I was recently diagnosed with Celiac disease. I have a son with Autism (younger than yours), who is an extremely picky eater. He is not on a gluten free diet (yet), but I've had nightmares about how difficult this change would be on him if he ends up having Celiac. He will completely melt down just over a change in brands, or even if his usual brands change their packaging. I can totally see why a gluten free diet could be beyond frustrating for an autistic child and their parent(s).

If you could tell us everything he was previously willing to eat, that might help us make better suggestions. (Because while there are many naturally gluten free foods, most of them are things my son would NEVER eat.) Will he eat gluten free pizza? (Don't be afraid to keep trying different brands/recipes, I've had several I hated...but have found one that I like.) Can you make him burritos with gluten free flour tortillas? Can he have sugar substitues, like splenda? If so, maybe you could make him some treats?

Also, several people have suggested caseworkers, etc. If you decide you would like professional help, you should seek out an Occupational Therapist who can help with feeding issues. I have seen amazing progress in my friends son who received this kind of therapy. I have met once with an Occuptional Therapist, and was given some information that was very helpful. If you are interested, I can tell you more about it, and/or send you copies of that information.

I also had one other thought, some people, especially those with autism, have terrible withdrawl symptoms after going gluten free. If he has recently started the gluten free diet I would highly suspect that that is contributing to his irritablity, and that with some more time, the withdrawl symptoms will taper off.

Again, I offer you my best wishes.

[Karl Otto]

There are allot of foods out there that he use to eat. He use to like his Chili-Mac frozen in a tray. He had to give it up and again, he also goes by the box, smell, taste, and feel of the food given him. The chili-mac he use to eat was loaded with bad ingredients, wheat, chemicals, preservitives, etc... He liked his cheese and macaroni with little veinana sausages on top. Then, he liked his hot pocket sausage pizza's frozen. Again, recognized the packages. He would follow me around in the kitchen making sure the right box was placed into the microwave oven. He watched me ever step of the way, too. So, when it come time to change over to gluten-free, he went nuts and laid on the floor and screamed. He was just not going to accept anything new or any thing different in his meals. He like whole made yellow cakes, made from scatch. Again, he would watch me make it, if he did not see it made, he would just not eat or touch it in any way. He is just no accepting anythng that is made from scatch at this time. He liked fig-newton cookies, I still let him have some of those straight from the box otherwise, he would not eat them. (Must see them with his own eyes) He liked bananas and, I still give him then each morning. (One per day only) He used to eat his food with extra virgin olive oil poured over top. ( Table spoon full)

The bad part of his old diet, his stomach would stick way out from his body and, he looked bloated all the time. He could not sleep well at night and ran around in the dark or with the light on. He was always running around looking something to eat all the time, he was a pigging out on everything. The doctor diagnosed his with over eating. He was having all sorts of bad times going to the bathroom. Too many bounts of constipation while eating wheat gluten products. He was always feeling bad after eating eat of his meals. His nausea and other feeling would start about 20 minutes after eat meal. Now, he is loosing weight very fast. Maybe because, he is refusing to eat. Tonight, he is still having problems going to the bathroom.

[hh73]

Why not try to trick him?

Cook some gluten free food, put into the same Hot Pockets boxes, pull them out infront of him? Make it look likes its really Hot Pockets!

[twe0708]

My youngest son just flat out refuses to eat anythng that is gluten-free. For two days now, he is refused to eat anything put in front of him. It does not matter how you cook the food or, how fancy you make it look in the plate or bowl. His weight is going down each day. He puts me in mind of a cigarette smoker; I got to have my cigarettes and nicotine or, I will surely die. So, I have decided to continue on as the doctor has suggested and, one of us is going to die. I will not give in to his wishes and, go back to the old way of eating food. Either he dies of starvation or, I die of aggrivation either way, one of us is going to die. I took down his list of favorite foods and bought the gluten-free version of the very same foods. He picks up the plate, smells it, and, picks up the food between two fingers and tests it. Then, he shoves it aside or out of his sight. He is complaining about his stomach being enpty but, still refuses to eat anything. He wasting ton of food that frankly cost 2 - 3 more times than ordinary food. How is he able to test this food, is pure smart mouth, I just do not understand his method. Well, I too am stuborn so, one of us is surely going to die for, I refuse to give up trying.

Who else is going through this pig-headed situation?

Remember he has full blown Autism, Mild Retardation, and Celiac Disease since birth and, he is newly diagnosed.

I have Celiac Disease, Hyperinsulinism, and Neuropath thing going on in addition to seizure ever once in a while.

Make some chocolate gluten free betty crocker cupcakes with pillsbury funfetti frosting and tell him not to eat them because they aren't gluten free. He will probably take one and see how good they are and then maybe it will help him see this gluten-free way of eating won't be so bad.

[Karl Otto]

Tonight, he finally ate a little bit of plain jello and, a couple bits of gluten-free putting. He is still not out of the woods yet, I am trying stay off the dehydration. If I can keep him from that sickness and, get him to eat more, he just might make it.

Unfortunate, for me, I am now loosing my eyesight tonight. I am typing this post with just one eye, the other one is not working too well. I laid down tonight, and slept overtime when, I should have been eating. (Hypo thing going on with me).

My oldest son went out and looked harder for more foods containing no gluten, I am going try on Ishmael. Like, I said, I am not giving up or giving into defeat. US Military veterans can be hard but, we never give up and never surrender.

[maximoo]

Hope you feel better. My eyes get blurry when I am tired. I m sure that's nothing like what you are experiencing, but go to the opthamologist asap. I've been following your terrible ordeal with your teen son. Is he still in the hospital? Have they identified the blockage or did he just need an enema?

Does Ishmael have a communication board? He should have been provided one from medicaid or the school board somewhere along the way. FYI the ipod/ipad have a communication application called Proloquo2go it costs $190 and has over 7000 picture icons that speak just like a communication board. All he has to do is touch the icon to express want he wants.

heres the link: Open Original Shared Link

I am an adults with disabilities teacher & I am certified k-12 & I will be purchasing this app for my students thru a grant I received. Just thought I'd let you know about this new app & maybe it could help your son communicate. Maybe you could get his school to purchase it but I'm sure it will take forever for it to be approved

Best of Luck to you all.

[ravenwoodglass]

Last night, my son Ishmael was taken to the emergency room at the local hospital. He was complaining for two days about his stomach. He was also not having normal bowel movements as well. The doctor upon reviewing the lab test results, said his condition was related to his celiac disease. The doctor thinks the disease has damaged his large Colon and small intestines in some way or fashion. So, the doctor put in an order to have him tested in endocrinology and GI department at the local children's hospital. There might be a tumor, cancer, or growth of some kind obstructing his bowels. He was not able to have a normal bowel movement before finding out he was Celiac now, he still has the same problem. As a result the doctors wants further tests done right away. That is where, I stand at this positing. P.S. years of non-treatments of this disease has taken its toll on my son.

How did the testing turn out? Did you get any good suggestions from his doctors on getting him to eat? Glad to hear he at least ate some jello and some pudding.

I hope the doctors are able to guide you to some support with him.

[Karl Otto]

He is now at home but, because he is autistic in addition to the celiac disease, the doctors did very little for him. The emergency room doctor said, he was very familar with Celiac Disease as is most younger doctors. The older doctors still refuse to accept, there really is a disease called Celiac. Well, that is what he told me over the phone yesterday. He refered my son the GI and Endocrinology Department at Children's. Unfortunately, for my some, the next schedule for him want be until the end of July, 2011. The said, too many kids in this area of Colorado are being diagnosed with Celiac Disease and, they are scheduled ahead of my son whom, must wait his turn in line. He ate some jello and gluten-free pudding last night. His stool come out a little bit more than the previous day but, not a normal amount as to be expected. I found a way to make one of his favorite foods this morning through research. There is a way to make him his Chili-Mac. Annie's Creamy Deluxe Cheese and Mac dinner mixed with Bush's Gluten-free chili beans and sauce. Yes, they do make a gluten-free chili in a can. I researched it this morning it is true, from several sources.

[ravenwoodglass]

He is now at home but, because he is autistic in addition to the celiac disease, the doctors did very little for him. The emergency room doctor said, he was very familar with Celiac Disease as is most younger doctors. The older doctors still refuse to accept, there really is a disease called Celiac. Well, that is what he told me over the phone yesterday. He refered my son the GI and Endocrinology Department at Children's. Unfortunately, for my some, the next schedule for him want be until the end of July, 2011. The said, too many kids in this area of Colorado are being diagnosed with Celiac Disease and, they are scheduled ahead of my son whom, must wait his turn in line. He ate some jello and gluten-free pudding last night. His stool come out a little bit more than the previous day but, not a normal amount as to be expected. I found a way to make one of his favorite foods this morning through research. There is a way to make him his Chili-Mac. Annie's Creamy Deluxe Cheese and Mac dinner mixed with Bush's Gluten-free chili beans and sauce. Yes, they do make a gluten-free chili in a can. I researched it this morning it is true, from several sources.

Call the GI office and ask them to put you on the cancelation list so if someone else cancels their appointment they can get him in sooner. He has been diagnosed celiac, correct? Because if he hasn't been diagnosed and you need to diagnose then he would need to keep eating gluten until those tests are done. If he has already been diagnosed then being gluten free will not effect testing for other things.

If he has not been eating very much his stool amount will be lower than if he was eating normally.

There are 'regular' premade things that are gluten free. The chili you mentioned was one, Dinty Moore Beef Stew is another and there are others. If he will eat beans and hot dogs most hotdogs are safe as are some of the Bush's baked beans. Ore Ida also has a lot of gluten free potato products if he likes fries or tater tots.

You may want to do searches with his favorite regular foods and the word gluten free as many companies do have gluten free lists. Kraft and Unilever brands will also clearly label gluten.

[kareng]

Here's a little trick to getting seen sooner. Unfortunately, it will only work if he gets worse. If he needs to go to the Emergency Room again, take him to the Children's hospital. Especially if it's during " normal working hours". During the weekdays they will have GI docs and people who deal with Autism there. They may call them to come to the Emergency Room. then he would be a follow- up and get in when they want to see him next. At least this is how the Children's hospital I worked at and the one I took my boy to work.