<p>@greenbutton any update? {{{hugs}}}</p>
<p>And more hugs.</p>
<p>He called his specialist team and spoke to them at length about his concerns, after we had a good conversation about the food (his explanation is he read somewhere to put food in your path to remind you to eat. Everyone, eyeroll) He specifically asked if he could work with his physicians first, and therapists if that didn’t help. His belief is that this is not emotional, so we’re respecting that for now.</p>
<p>His team is altering his meds, which will trigger some tests, which will tell us more. He has agreed to (and has been) keeping a food diary, and allows me to help total up the calories. This has given him a much clearer idea of what he’s getting. He also sat with me and we used a Mayo Clinic calculator to agree on a reasonable caloric goal , agreeing that it may take time to learn to eat like that. So far, he isn’t “getting” the idea that you have to pay more attention to caloric density if you don’t want to eat all the time, but these are all good steps.</p>
<p>He goes back to school in 5 weeks, which isn’t much time to gain, unless the meds are the problem. But it feels like progress. DH was so upset about the hidden food (a box of cookies) that I had him read this thread and he felt much better, so he says thanks. As do I! </p>
<p>Please consider having your son checked for Celiac Disease. </p>
<p>Celiac Disease is an autoimmune disease that is triggered by gluten, the protein found in many grains, such wheat, barley, rye, malt and oats. Onset of the disease can be at any time, but is often seen in teens and young adults.</p>
<p>There are two different distinct diseases that are triggered by gluten: they are Celiac Disease, and the second is what is now called “Gluten Intolerance.” </p>
<p>The Transglutinimase Antibody IgA and IgG blood tests are the first set of tests for Celiac. They are simple. The TG IgA and IgG test only works for the Celiac Disease, not the gluten intolerance, so sometimes it comes back as a false negative, but there remains a problem with gluten for the patient.</p>
<p>When one’s stomach and/or intestines hurt (or is just uncomfortable) all the time, one really, really just doesn’t feel like eating.</p>
<p>@Peacefulmom says to get checked for Crohn’s. Seeing a Gastrointerologist is a very good idea. The GI doctor can screen for a number of GI related problems like Crohn’s, GERD, Celiac and Gluten Intolerance. There are several things that could be causing someone to not really want to eat, if one doesn’t feel well.</p>
<p>btw, foods that teens often eat, such as pizza, doughnuts, cookies, bagels, pretzels, and pasta would make a celiac person’s GI tract just hurt or be really uncomfortable.</p>
<p>Read “Brave Girl Eating” by Harriet Brown. Talks a lot about “caloric density.” Among other things.</p>
<p>Thanks to you both – both this son, and my husband, are celiac. Diagnosed back in the dark ages before anyone had heard of it except (thank God) Johns Hopkins. amazon-ing the book next!</p>
<p>If your S is on stimulant ADD meds, those can seriously suppress appetite, <em>especially</em> if one is on combination therapy. Glad to hear your S is willing to work with the docs and keep you in the loop. </p>
<p>S1 has sensory integration issues, and part of that for him is extreme sensitivity to smells. That is a major factor in what he will/won’t eat.</p>
<p>I also would just want the doctors to rule out things like reflux disease or irritable bowel syndrome IBS, which might subconsciously cause him to avoid eating because of unpleasant side effects. On one side of my family, we have some who suffer from reflux. One of my cousins grew up an extremely picky eater, and he didn’t know he had bad reflux until his late 20s. Until then, he thought everyone felt the same way he did. Medication did wonders for his situation.</p>
<p>With IBS, I have been reading about the low FODmap diet. Do NOT add this until his doctors determine he’s a good candidate, but these two links will explain for those interested: <a href=“http://health.usnews.com/best-diet/low-fodmap-diet”>http://health.usnews.com/best-diet/low-fodmap-diet</a> and <a href=“Low FODMAP Diet | Stanford Health Care”>Low FODMAP Diet | Stanford Health Care;
<p>Just wanted to share a quick update — his medical team decided that enough is enough, and we have a plan to address some of the underlying concerns (is this related to his meds? his illnesses? or not). His specialist had a good talk with him about things (I was not present, the nurse actually told me about it) . He kept a food diary and just about when he was turning things around, it was time to return to school. But, he called to ask for a few kitchen items, and has permission to use his floor’s kitchen without reserving it (the normal procedure) so he can cook “snacks” that are actually a 4th meal. He is still keeping a food diary, so that seems like progress. I was mostly encouraged by his clear establishment of a minimum calorie goal, which is an important step. </p>
<p>Anyway, I wanted to thank everyone for the references and links. We read almost all of them, and it was very enlightening for him and for us. Still a long way to go, but we are much more hopeful than before. </p>
<p>Thanks for the update and good luck to you both. It has to be hard to have him away at school. </p>
<p>It sounds like he is getting on top of this issue. No sigh of relief quite yet, I guess, but definitely progress has been made!</p>