Weight gain/growth issues in 10 year old - ADHD, anxiety, allergies, low tone

[Anonymous]

My rising 5th grader with multiple issues has failed to gain more than 2-3 pounds in the past two years or so. At his last med check, his height had also dropped off his growth curve, prompting concern and a suggestion to see a nutritionist. He has always been very thin, and genetically he is likely to always be thin, but his weight is now <1% on the charts. He is an extremely picky eater and if anything, his eating habits have worsened over the years. I have read so many books and tried so many approaches, with no real improvement. He mostly eats bread/carb-based foods, very little meat or dairy although he will eat a few forms of cheese, a handful of fruits and vegetables in small portions, definitely does not get enough protein, healthy fats, or fiber. He is severely allergic to tree nuts and has mild allergies to peanuts, several types of seeds included sesame, and a few legumes. He does not like "cold" foods, so no ice cream, milkshakes, yogurt, etc. He is resistant to smoothies as well but I continue to try.

We saw a new psychiatrist a few months ago who came highly recommended. This was after a couple years of medication management by the pediatrician after reaching stable meds/doses with a previous psychiatrist (he takes Adderall and Zoloft). Of note - the Adderall does not seem to have much of an effect on his appetite, as the slow down in weight gain did not coincide with starting medication and we do not notice an uptick in appetite when not medicated. This psychiatrist recommended an integrative nutrition and psychology practice specializing in the interaction of nutrition and physical as well as mental health. It sounded great, but we went for an initial consultation last week and I"m suspicious. It's expensive, and seems a bit alternative/"woo." I was expecting a more mainstream or at least balanced approach. They want to do a bunch of lab work (urine/stool samples, maybe blood work) that gets sent off to distant labs. My research tells me this will probably turn up with a bunch of food sensitivities/intolerances and the need for lot of supplements. Basically, seems like snake oil. Am I right to be so suspicious? Or is this actually worth a shot? I have often wondered if he could possibly have celiac disease, since he eats mostly bread and isn't gaining any weight - is he not absorbing it? He has had occasional issues with constipation/diarrhea. But his allergist has seemed reluctant to test for that.

The dietician we met with at this practice did notice my son's hypermobility, which seems to have become more pronounced over time. He has trouble sitting upright in a chair and tends to curl up in a ball and "perch" in his seat. He twists his legs around and has terrible handwriting. He has low tone, particularly in the trunk, and struggles with endurance and anything athletic. She hinted at the idea that we might want to have genetic testing done, and that these physical symptoms might be related to his other issues, especially the anxiety. Is this an avenue I should pursue?

I realize this post is all over the place. I don't know where to start with helping to get his nutrition/weight gain on track, and whether his physical issues are connected to, or exacerbating, his mental health/behavioral issues. Do I need to see a more mainstream dietician? A gastrointestinal specialist? A geneticist? Do we need to get him back to OT or PT (we did OT from ages 3-5)? Or would CBT help with the eating issues? I feel extremely overwhelmed and don't know where to start. It seems like no doctor can really help me figure out the best course of action.

[Anonymous]

I am right there with you. Our meds make our kid lethargic and he’s not as active. He gained a lot of weight really fast. We’ve made an adjustments but finding out if more changes are necessary will take time.

[Anonymous]

Have you seen an endocrinologist? I would look for one at a larger hospital (Children’s, Georgetown, Hopkins) so they can refer you to other specialists easier. It does sound like a genetics appointment my be helpful to look at EDS (which is really a group of disorders, which may explain more about your DS.

[Anonymous]

My DS saw Elizabeth at EB nutrition in Rockville -- she did a good job of working on a plan that included basically the foods my DS already ate so it was more practical and reasonable. Give it a try. She's in Rockville.

[Anonymous]

Anonymous wrote:My rising 5th grader with multiple issues has failed to gain more than 2-3 pounds in the past two years or so. [...] dropped off his growth curve [...] always been very thin [...] his weight is now <1% on the charts. [...] extremely picky eater and if anything, his eating habits have worsened over the years. [...] mostly eats bread/carb-based foods,
[also: ADHD, anxiety]
[...] occasional issues with constipation/diarrhea.


Celiac parent here: push to test that kid for celiac right away!

Both my kids were diagnosed 18 mo ago; one had been putting on weight, the other one getting skinny. Both were fairly picky and loved carbs, bread, etc. One had SEVERE anxiety and lots of ADHD-like / autism-like behaviors, though both diagnoses were ruled out.

Turns out for that kid, the undiagnosed celiac was a significant factor: anxiety level and ADHD-/autism-like behaviors have been reducing on the GF diet. (Not gone, and definitely recur when physically or emotionally compromised - glutened, tired, stressed, etc. - but So. Much. Better.

Be ready for push back from your doctor; years ago, doctors in the US were taught that CD is rare, presented as diarrhea, skinny/stunted kids, mostly Irish, affects GI tract only, etc. None of that is correct: it's about 1% of the population, affects all ethnicities/ages/sizes, 300+ symptoms associated, affecting multiple body systems (brain, skin, joints, not just GI).

I recommend "Gluten Freedom" by Alessio Fasano (head of MGH Celiac Center) as a good backgrounder. Also, run through the symptoms checklist at beyondceliac.org or similar sites.

BTW, (a) a negative test doesn't mean he doesn't have it - some people show up only on biopsy, and (b) even if CD is ruled out, non-celiac gluten sensitivity is a thing so it's worth trialing a GF diet. (No biomarkers or tests for that yet unfortunately.)

Hope that helps - good luck!

[Anonymous]

This might be out of left field, but how is his sleep? My DS has always been small, super picky eater but then didn't grow from age 3 to 4. Doc sent us to an endocrinologist but it turned out he had sleep apnea (a dcurbanmom BTDT diagnosis). We removed his tonsils/adenoids and he gained 3 pounds in a few months.

Endocrinologist was not a waste though—I recommend Ali Mohamadi. Super nice guy. This is a good time (pre-puberty) to check in.

Low muscle tone can happen for lots and lots of reasons. We also saw Kenneth Rosenbaum at Genetics at Children's. He is super knowledgeable and worth the several month wait if you think genetics worth pursuing.

You could also see a developmental pediatrician who might give you some insight and help you prioritize tactics.

Celiac test worth doing, too—I know it's hard to imagine weaning your picky eater off of the starch but there are so many alternative non-wheat products.

We also drink so much carnation instant breakfast (bottled) I wish we owned stock in the company. It's totally processed non-food of course, but for protein packed with vitamins but it's the best we can do these days for our non-eater.

Good luck—this is such a stressful and emotional issue. Hang in there!

[Anonymous]

Anonymous wrote:You could also see a developmental pediatrician who might give you some insight and help you prioritize tactics.

Sorry, I should have noted that this is where we started in your situation. Karin Belsito was really helpful to us. Good luck!

[Anonymous]

My kid sound just like yours down to the perch sitting My kitchen stools get filthy from his feet but his hips and hamstrings are so tight that this is a more comfortable position We have done a few things that I thought were good ideas suggested by our dev ped and other specialists we saw a gI specialist to do testing for a malabsorption disorder our results had some surprises so that was worth doing we have seen an endocrinologist in the past as well For the trunk and tone issues we were advised to see a physiatrist aka a doctor of rehabilitation medicine and she ordered Pt you don''t mention school but there is an educational impact to not being able to hold your body upright at a desk to write i assume you have an iep and if not you should look into one we get pt at school also one medication that our psychiatrist likes is remeron because it treats anxiety while also increasing appetite there are medications to stimulate appetite and you should ask your doc if they would be suitable Finally the only nutritionist I would see is one recommended by the gi specialist you should be skeptical there are so many people promising the moon to desperate parents sorry for the punctation my preschooler spilled water on my laptop and has ruined my keyboard

[Anonymous]

I don't think there is a one right sequential order. You will need a multi-prong approach. Make appointment with developmental ped. It will take 6 months to get in anyway. In the meantime, see genetics to rule out a root cause. It will take a couple months for results. Then pepper in the other doctors mentioned. Wait for those results. Hold off on therapy until you get results. It will come together. To make things easier, you should consider going to all at one practice or institution. The system will have all results in one place and accessible to the other specialists. Keeping up with the paperwork is a nightmare and job by itself.

[Anonymous]

Absolutely test for Celiac - I asked for the blood test with a similar child. It was mildly positive. The Endoscopy confirmed it

[Anonymous]

Get the celiac testing done ASAP and first. You cannot be gluten free before celiac testing, you must be eating gluten to get a correct celiac read so do that first. Then you may wish to pursue a gluten free diet - but only after the celiac is tested for.

I think you start with pediatrician, not allergist, about getting the celiac test done. If the ped. won't order it, find out who will? Then see that doctor.

[Anonymous]

Ped probably will do it but a gastro definitely will. CNMC has a new celiac "dept" FWIW - but that is probably post dx.

[Anonymous]

Jaime Wolfe is our gastroenterologist. She diagnosed celiac for my kid and we continue to go to her. There is a dietician at her office.

To figure out if it's an absorption issue, start keeping a food diary. Weigh everything he eats and count the calories. There are charts you can look up to see how many calories he should have. If he seems to be eating the right amount of calories, then it could be an absorption problem.

[Anonymous]

My 12 yr old has many of the same issues. We have seen genetics, GI (repeatedly), endocrine, and multiple nutrition visits. No real diagnosis. We finally consented to a feeding tube bc the only thing anyone has come up with is that he should eat more. Weight gain has been minimal even since then. No idea where we are going next. I wish I had something helpful to offer. Right there with you though.

[Anonymous]

There is a root cause. You are treating symptoms. Gradually take him off Adderall and Zoloft, they are too stressful for his his body. Adderall absolutely suppresses appetite!! My 10 year old is 63?lbs. I took him off Adderal for the summer and he gained 3 lbs since end of June! Get in with all specialist. My son also has trouble sitting up. We went to see a genetic doctor a couple weeks ago and she noticed he has scoliosis. It was confirmed by X-ray. Waiting for genetic results.