It's not an eating disorder!! What is it???

twothen5May 31, 2006

I know there is another posting concerning weight loss but it's dated 2003, and not quite the same. I will try to keep it short:) My son is now 13 and has went from around 163lbs (a little overweight at that time) to around 106lbs. The first 40 or so lbs was lost in about a 2-3 month period. I feel so very bad to say it but it really happened SO quickly that it was hard to notice how much it was at first.I took him to doctor, had blood work done, was told that T3 was high, did follow up T4 and was told only slightly high don't worry not a thyroid problem. At that time he was around 117lbs,now 5 months later he is at 106lbs. But he is eating SO MUCH, I mean more than any person should or could eat, and is still hungry! Wakes up in middle of the night to eat. His skin color is off, headaches to the point of tears, dizziness, heartbeat racing, sleeping problems at times, open sores (rash)on his legs, complains that his "bones" ache, muscle aches, he plays basketball and I would watch him in practice turn white as a ghost. I have been to so many dr. visits that I have lost count. His family Dr. sent us to a Childrens hospital that has a wonderful reputation.

Here is the problem, I have later found out that his family Dr. put on his records that it may be a eating disorder. Riley Childrens Hospital sent us for a MRI of his head that came back normal. After that they sent us to a eating disorder clinic, I didn't know it until I called to set the appointment. To make a VERY long story some what short, I have been back and forth and keep getting the same thing, they weigh him backwards so he can't see, ask the same questions that lean towards a child with an eating disorder. I have told them over and over that he DOES NOT have an eating disorder, if he did I would at least have an answer. I have watched my son go from looking very healthy to a very very frail and sickly looking child, I can see his ribs, I can't believe I can see his ribs! I have looked for and asked his counselor if I am missing an eating disorder, NO I'm not he DOES NOT have an eating disorder. At this point they will not run any more tests, they say no need to put him through tests that he doesnt need. Told me to wait a month and see where his weight is at. He gained 2lbs over the last month so they say he is eating NOW and that if he keeps eating that he will be fine.

I was able to insist on a appt with an endo Dr. due to the high t3 count, it's in 3 weeks, but really not sure where to go from here. I do want to switch Dr. but waiting for appt with endo. So that way I know what to tell new dr. I don't want them to see eating disorder and think I'm in denial.

I just can't get over how much he eats, he got up Friday and had 1 hotdog, two grilled ham cheese sandwiches, (by 9am) on way out door made left over cubed steak, took it with us. Went to dr. as soon as we left wanted something to eat, stopped at McD's (they messed up) had his quarter pounder meal and extra one. Ran few errands took him home had "lunch" another grilled Ham cheese apple chips. Followed up with afternoon "snack" hotdog another apple, Dinner that night was pizza, I lost count how many pieces he had. He also had snacks before bed. He almost always wakes up and eats in the middle of the night. He eats to the point that he says Mom I am so full can't eat another bite, then hour later he is "starving" again.

I have spent countless hours looking things up trying to find out what it could be. I did find info on celiac disease, asked the Dr. she just said nope thatÂs not what it is thereÂs no way. I can't believe how upset a dr will if you question anything. What am I supposed to do, this is my child I am very worried. I just look at him and he just doesn't look healthy, the Dr. said it must just be anxiety. Ok maybe if you lost your appetite I would buy it, but thatÂs not the case.

I am very sorry that this is so long. I would greatly appreciate any info or suggestions.

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I hope the Endo can find something, that's A LOT to eat and not gain weight.

Are you with him the entire time after he eats all this, he doesn't go to the bathroom and purge? Purging is easy, and it is so easy for a parent to be in denial. Has he gone to the dentist? They can find evidence of purging to ease/confirm fears of purging. I know you didn't want to hear that, but leaving your mind open may be what you have to do. IF test show it is not true (and from experience asking a child and listening to their denial is NOT the best way to get to the bottom of things, BTDT) then great, but if you are missing an obvious, you could (and the operative word is could) be doing your child an injustice.

As far as the celiacs, the doctor can usually be pretty certain if it is celiacs, but if you question it, change his diet follow a celiacs diet and see if you/he notice a difference. If you do, you were right, if no difference then no harm will be done as it will not hurt him.


    Bookmark   May 31, 2006 at 7:29AM
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Thanks for the feedback; I did take him to the dentist, just to ease my own mind, and no signs of purging. I have made a point many times to have him eat where he doesn't have the opportunity to purge. The doctors have told me there are no signs of purging as well. They just seem to doubt that he does eat, why would I lie?? I have spent a lot of sleepless nights, not to mention days of missed work with all of this. The bottom line is I have told the doctor, tell me this was a growth spurt, and tell me its normal I would be thrilled; the answer I get is "that is not what we are saying, but at this time we do not know what test to run to give an answer." I was told I should wait and see if anything new develops, very hard to do as a mother.

As far as the celiac, everything I have read says there is a certain blood test to run (doesn't always show up) and that the symptoms vary so much from person to person that it is really hard to diagnose. We only had the first two blood tests over 5 months ago. I know that when I first found info on it I couldnt believe it; I thought finally this may be the answer, but the doctor wouldnt even consider it. A lot of what I have read says that celiac is frequently misdiagnosed as an eating disorder in children.
As far as an eating disorder, I just DO NOT think it's there,if it was I would deal with it. Of course it would be hard, but maybe easier than a lot of other things that it could be.
Again, thanks for any suggestions!!

    Bookmark   May 31, 2006 at 11:58AM
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I wouldn't rule out an eating disorder. It just may not be one of them that you generally think of. Can you with certainty rule out drugs and laxatives?

But, the over eating itself doesn't sound too odd. Is he a normal weight for his height, now? I ate like a horse during my teen years and only weighed 110. Is his activity level higher since he lost the weight? Maybe that's helping it now too.

I would be a little concerned with the weight loss compounded with all his other symptoms, though. Still, some others could still fall into the teenager categoy...growing pains, insomnia, etc..

Could he be lacking in a specific vitamin, be diabetic, have arthritis or be anemic? Was he checked for anemia? And, just wondering, is he overly sensitive to the sun -could his leg rash be caused by that?

And, still most everything still could be caused by something like an anxiety disorder. It can cause a lack of sleep and everything can go haywire and your whole body can fall apart. It can cause you too over eat too. So, I wouldn't totally rule it out.

Bottom line, though, if you are not happy with your doctor find a new one. A second opinion may be good in his case. Maybe the wrong issues are being stressed and looked into. Maybe a new doctor will have a different approach and be able to find more answers.

Good luck. Let us knows how it goes. And, let me know if he's ultra sensitive to the sun.

    Bookmark   May 31, 2006 at 2:48PM
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You can always do food elimination tests. eliminate all dairy for a few days, eliminate all wheat for a few days, etc, and see if you see a difference. That was how we had to figure out our DD's allergy to dyes in foods, since there was no good concise test at the time.

    Bookmark   June 2, 2006 at 12:17PM
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I DOES sound like a eating disorder....but when you swear he eats and a dentist says there is no evidence of purging....I sure would be looking for something else.....and if your present doctor is not looking, I would fire him ( yes! A Doctor is an employee, someone you hire and someone you can fire if they are not doing a good job!) and find another.
But don't let it go....this could very well be something life altering if ignored.
Linda C

    Bookmark   June 2, 2006 at 12:35PM
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The rapid weight loss, the rashes, his aches, sleep troubles, and general poor appearance make me wonder about the possibility of lymphoma. Does he also have fevers? I have a BIL who is in remission from lymphoma and the symptoms sounded similar.

"The following are the most common symptoms of non-Hodgkin's lymphoma. However, each child may experience the symptoms differently. Symptoms may include:

* painless swelling of the lymph nodes in neck, chest, abdomen, underarm, or groin
* fever
* sore throat
* fullness in groin area from node involvement
* bone and joint pain
* night sweats
* tiring easily (fatigue)
* weight loss/decreased appetite
* itching of the skin
* recurring infections"

I don't mean to be an alarmist but it may be something to discuss and rule out.

    Bookmark   June 4, 2006 at 12:46PM
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I would definitely look into the possibility of Type 1 diabetes. There are many websites listing symptoms, but one is here:
and these are the symptoms listed:

Signs and symptoms of diabetes.



Increased hunger
Excessive thirst

Frequent urination

Itching skin

Vaginal infections
Sudden weight loss or gain
How can you tell if your blood sugar is low?

Dizzy or light-headed.


Nervous and shaky.

Sleepy or confused.


    Bookmark   June 5, 2006 at 8:16PM
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Another possibility could be some kind of tape worm. I know it isn't a pleasant thought but worth checking out IMO. Good luck!!


    Bookmark   June 7, 2006 at 8:31AM
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As I was reading this, I was thinking Type 1 Diabetes also. My daughter got this when she was 5 and weight loss is a definite symptom. The next time you take your son to the doctor, make sure your son fasts for 12 hours and insist they do a hemoglobin AIC blood test.

    Bookmark   June 10, 2006 at 7:07PM
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I have a son the same age..I am sorry for your problems, such a worry for you.

I think I would definately seek another doctor, for another opinion. Please dont scare yourself by reading websites.

Doesnt sound like he is eating many fruits, veges, etc, is the diet he having a healthy one ? Does he drink water ?

Is he happy at school, friends etc. ?

All the best to you, I am sure he will be fine.


    Bookmark   June 28, 2006 at 4:14AM
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When I read this I was recalled to when I was first diagnosed as Celiac. I had over a dozen appointments with doctors taking my blood before I was finally sent to a good gastro. My endo doctor was absolutely fabulous and yet he didnt check for Celiacs disease.
When I was your son's age I weighed only a hundred pounds, and I had many other similar symptoms that he did, which is what made me feel responsible in responding.
Many of the doctors I saw did not impress me at all. I was misdiagnosed several times, and several times their response was similar to your son's. It's all in your head or the like.
The blood work on me wasn't positive by the way. THere are other tests to take that are more conclusive but still not 100%. And living a gluten free diet is NOT that easy. Even knowing that I had to go gluten free it took me MONTHS before I was able to figure out just what I couldn't eat. Which is about everything.
Good luck, hopefully everything will work out for your son.

    Bookmark   July 28, 2006 at 7:33PM
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I would take your son to a pediatric gastroenterologist at the nearest Children's Hospital. They will be able to help you. Is there a history of Crohn's or Celiac disease in your family?

Follow your instincts and be your child's advocate. Get him the help he needs now.

    Bookmark   August 26, 2006 at 9:55AM
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Many thanks to everyone that gave feedback! Sorry that it has taken so long for me to follow up. Sorry it's going to be a bit long.
I tell you, it's been a very long year! I did take my son to the endo doctor and she was great, ran many many tests and was also very concerned with the last doctor not following up to find out what was really going on. Well all of her blood work (10 different types) came back OK She said #'s were a "little" on either the high or low ends of "normal" range, but not pointing to one thing for sure. Told us to follow up with 3 new specialists. Best of all he started gaining weight yea!!
Except for the fact that all or most all of the other symptoms were still there. Doctors that the Endo sent us to couldn't even see my son for at least 6-8 weeks. So I waited and prayed...I was very thankful he had put on about 10-12 lbs, but why???? I know I should just be happy but really what had changed??? I was ready to call up ol Dr. House :)

Really, I just wanted to be sure he was ok. Then 3rd week in August he started complaining of a stomach ache. It was on a Tues night, he just said "Mom my stomach hurts" I asked him the fun questions Moms get to with a statement like that, do you need to use the bathroom (poop)Do you have diarrhea, does it burn when you pee, does your back hurt, is everything ok at school, anything bothering you??? I got the same answer every time, "My stomach just hurts, I don't feel sick like I am going to throw up, it just hurts, but not "that" bad I'll be OK." Now you have to understand that my son doesn't really complain about not feeling good, never really has been one to miss school from "belly aches" So with that said I sat and watched, of course wondering and worried. Next day and day after I asked him when he got home from school how he was doing, it was OK hurts a little but "Mom really I'm fine, can I go play" Now keep in mind a lot of these conversations were in the kitchen while he was make a "snack" before bed. So the child was eating and I was asking him if he was still as hungry as usual . I also took his temp. every night, no fever. I was thinking appenidix.

Well next morning, Friday he told me he didn't want to go to school, I check temp, asked all questions felt stomach. He said that he just didn't feel like walking from class to class. I called the doctor and tried to get him in, was told every time that someone would call me back never did. I then on my gut just took him to the ER, my insurance requires me to get approval from dr first, so that's what I was trying to do. After six and a half hours in the ER waiting room and a few arguments with my son that he was "fine" let's just leave he was hungry, we were taken back.

A couple different doctors looked at him, and then after looking up his long history thought just to be safe they would do a CT. I had two different doctors tell me outright not to worry that it couldn't be his appenidix, he would have a fever, throwing up or at least sick to his stomach doubled over in pain and definitely wouldn't want to eat. That is really all that seemed to bother him after the first hour, he was hungry last thing he ate was at 2:30 corn dogs and onion rings, that's all we heard all night. Well needless to say, after they finally got the CT back (a hour later).The doctor came in to tell me that it looked really "ugly" appenidix looked very inflamed and had blockage, as well an abscess behind it. A surgeon would be over in 20 min. to speak with me. Poor guy had been planing where he wanted to stop on the way home to eat:). They were prepping him for surgery and I was signing papers right then. Maybe a good thing it was so quick I knew I couldn't get upset and nervous for his sake. Didn't have time anyway

The last thing he said on the way to the OR was " let's get this over with so I can eat. During the waiting for the CT the doctors there were very surprised that any doctor would or could think this child had an eating disorder. He was really hungry:) Well I'm very happy to say that he now is doing fine, as for as appendix. Funny when he finally woke up a day later he said Mom are you there, oh I hurt,...I'm hungry:)

During surgery the nurse told me that it had been ruptured and had been for some time, one of the worst the doctor had ever seen. Which of course brings on a whole new set of problems. He NEVER before or after surgery had any sign of an abnormal white blood count. Which made it really hard to see if they had the infection under control, it was in his bloodstream at this point. After 6 nights in the hospital they sent him home and of course we were back within 2 days with the incision infected. The surgeon said the surgery team "knew" it would become infected, just not sure when.

They brought student doctors in so many times to hear his "case" He never had the normal signs of appendicitis. Hopefully all the infection is out of his body, he just finished up loads of antibiotics, through an IV in the hospital and 3,000 mgs a day at home. He still has a pretty hard knot on his stomach that I'm watching.

I did ask many many times if they thought this had to do with his other problems, never really got a straight answer. I intend to see how his weight does, of course he lost about 12-13lbs in the hospital. The scary thing is that as far as blood work I really don't have anything to compare it with as far as what is normal to my son and what is showing that something may be wrong.

I can't say it enough, I'm so thankful that I listened to my gut, something WAS wrong! I'm also so very thankful that I didn't give in to him and leave that night. This could have killed him, and hopefully we caught it in time that it hasn't damaged his other organs. The doctors told me a few times to watch him because his pain tolerance must be very high...that he may be a dare devil. That's what every mother wants to hear, anyone want a skateboard :)

Sorry that this is long, but I really wanted to share an update, and say we KNOW our children the doctors need to start listening to parents and look outside their "list" of symptoms. My "gut" still has me wondering if everything is now ok. I pray for the best, as well as, tell my son over and over listen to your body you know what is going on tell me!!! He said he didn't tell me all the time, every time because the doctors wouldn't believe him anyway.

Again, thanks for all the feedback!!!

    Bookmark   September 13, 2006 at 1:01PM
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That's so WONDERFUL to hear you finally got something resolved! I know you must have been terribly worried -- (I was worried for you.) I do so hope that this appendix was the only thing 'off' and that now your life can return to 'normal'. Once the infection is under control, it might be a good idea to re-run some of the tests just to get some baselines and see if you can find anything else weird.

Yes, some kids have a tremendous pain threshhold, but age 13 is NOT when you'd first find out about it. You'd know by now if you had a daredevil child. It can be a sign of a neurological system that's not functioning quite right, either on the 'sending' end or 'receiving' end, and bears some looking into. (My son was like that for a while -- told me once he thought he had stubbed his toe when he had broken his ankle.)

I'd also be inclined to check out an immune system that wasn't responding appropriately to that type of infection. I know an appendix can act 'funny' but if the doctors aren't comfortable saying they're sure his immune system is fine, I'd be wanting some serious answers why he didn't have a fever and why his white count wasn't elevated. How does he respond to other typical illnesses?

Well - I'm so relieved to hear he's doing better, and this just goes to show something I've come to learn the hard way myself --

When Mom KNOWS in her gut that something is wrong, Mom's almost always right.
And any doctor that doesn't listen to Mom isn't the right doctor to treat this child.

    Bookmark   September 13, 2006 at 4:05PM
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I'm so glad to hear you got some resolution on this. I hope the future holds better health for him.

I too have been very disappointed in many doctors. I swear I could come in one day with some symptoms and they would rush me to the ER, but come in a different day with the exact same symptoms and they'd tell me's it all in my head. I bet many of us have horror stories of bad doctors. I'm just glad that you stuck to your guns, and that they finally caught what was wrong with your son. Hopefully, there wasn't an underlying problem that helped to hide the usual symptoms, but I'm sure you'll be on top of that if there is one. Good luck to you and your son. I'm happy he'll be able to enjoy eating again.

    Bookmark   September 13, 2006 at 5:31PM
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DD had a stomachache last year, and when I called the nurse line, she asked us to bring her to ER, stating that with kids, appendicitis can manifest itself in so many different ways, and that they had recently dealt with an emergency surgery due to ruptured appendix in a boy same age as my DD (7 at the time).

I'm like you - I was thinking what if it's just constipation or some other benign thing like gas, but she sure was complaining! The nurse convinced me to go to ER and not wait til next day.

They looked at her and were convinced it was appendicitis enough to start X rays. In her case it was ruled out, and the pediatrician on call that night said, "I have a hunch."

He strep-tested her even though she had no throwing up, no fever, nothing normally seen with strep. It turned positive very fast, so he gave her an antibiotic shot.

So no matter the outcome, I think we, as parents, should always trust our gut, and be the medical advocate for our kids.

I'm so glad to see the outcome of this has a happy ending!!! Poor guy!

    Bookmark   September 14, 2006 at 10:27AM
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Good going, Mom....something was wrong....and you knew it!
Dr's do NOT know everything about our kids!
Glad it all terned out as well as it did.
Now keep us posted on the ultimate outcome.
Linda C

    Bookmark   September 16, 2006 at 12:21AM
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