Underweight 13 yo. Feel like I have tried everything :(

[crescentcitygal]

I haven't posted here in a while because my 13 yo DS (ADHD and high-functioning autism) has been doing pretty well on the same medication for quite some time (Daytrana patch and Tenex). He has always been on the small size (weight and height) despite being a good eater and having a healthy, varied diet. His ped. has not been worried about his weight up until this year because he has been tracking along the same percentile for years. There is also a strong family history on both sides of men who were super-skinny until their 30s or so. However, I have become extremely concerned about his weight in the past year because his appetite has dropped off dramatically. His pediatrician is concerned now also because he has dropped from the 3rd to the 1st percentile in height, weight, and BMI.

He is still not what I would call a picky eater. He eats a pretty good variety of meats, produce, seafood, grains, and dairy products. He is just never hungry and will pick at even his favorite foods, taking bird-sized bites until he tells me he is full and can't eat anymore. I had him tested for celiac disease a couple of years ago, and the results were negative. Ironically, my 11 yo daughter tested positive for celiac a year ago, so our family has been eating mostly gluten free since it is imperative that my DD is 100% gf all the time. I understand that some people have gluten sensitivity even though they test negative for celiac, so I was interested to see if my son's weight gain improved on a gf diet. It did not, so I started letting him have much more freedom over what he eats (including fast food, which we do not normally eat) in order to sneak more fat and calories into his diet.

About 3 months ago, we had to increase his Daytrana dosage from 10 mg to 15 mg, which just about killed any remaining appetite he had, so now we are trying a different med. We switched to Metadate CD a little over a week ago to see if a different delivery system would make a difference in appetite. I am not seeing a huge difference, but we are going to give it a little time. We saw the pediatrician yesterday, and he wants me to talk to the psych. who prescribes his meds about trying Periactin to stimulate appetite if the med change does not help. I am also going to be more vigilant about adding a high-calorie snack each evening (like a milkshake).

I am so anxious and on-edge about this weight issue that I feel all I do is think of fattening things to feed my boy (which creates a problem with my daughter, since she puts on excess weight very easily). I have tried protein shakes (he does not like the taste), adding coconut oil to his meals (he hates the taste of coconut, so I am going to try the refined coconut oil, which is flavorless), rewards and incentives, threatening that he will have to go the hospital, and just about every other piece of advice anyone gives me. Has anyone had positive experiences with Periactin or any other method to improve appetite and weight gain? I am feeling so desperate.

[healthy11]

I don't have any experience with Periactin, but when your son was using the patch, I'm wondering if you put it on him when he was still in bed, before he got up to eat breakfast? I know Daytrana takes several hours to become effective, but now does he have the opportunity to eat before taking the Metadate CD? How is his appetite when not on medication? Is there any chance your son can take "medication breaks" over the weekends/school vacation periods, at least for the ADHD meds?

My son has always been very slender weight-wise, although as a teen, he continued to grow height-wise. (He was 66 lbs. at age 11, and now at age 23 is still around 140 lbs. at 6 ft. tall) He eats voraciously when not taking his ADHD medication. Although a long-acting med was more "convenient" as far as not having to go to a nurse's office in the middle of a school day, we figured out that he did better on a short-acting medication that wore off around lunch, so he was able to eat something, and then he took another short-acting dose to get through the afternoon, which wore off such that he could eat a later dinner, as well as "snacks" every hour or two until bedtime...

[hsmom]

My son first went on Metadate CD when he was 10 years old. The first year, between 10-11 yrs of age, he lost 8.5 lbs because of loss of appetite. The following year, 11-12, he got his appetite back and gained 11.5 lbs, but between ages 10-12 his weight gain was only 3 lbs (88.5 lbs - 91.5 lbs). However, starting his second year on Metadate CD, my son has continued to gain weight yearly. He is almost 16 yrs old and has been on Metadate CD for over 5 years. He is not as picky a eater as he used to be, but has never been a big eater, especially at meals. I have him on multi vitamin/mineral and Omega 3. And, since about two years ago, he eats several times throughout the day, especially when he is not on medication over breaks/vacations.

[crescentcitygal]

Thank you both for the advice and encouragement. Healthy, I think you assessed the situation accurately. Yes, when he was on Daytrana I had to put the patch on him while he was still in bed in order for it to be effective by the time he got to school. So I think his appetite was already pretty poor at breakfast, and it was completely gone by lunch time. He would eat a little better at dinner, but since the medication takes about 3 hours to wear off after removal of the patch, he probably had just enough still in him to affect his appetite. He used to eat well on weekends and holidays when we did not medicate, but not so much these days. I am wondering if he just can't fit as much in his stomach anymore since he has been eating so little for so long. He is only 4'10" and 70 lbs. His health is good in every other way.

I am going to try giving smaller, high-calorie snacks several times throughout the day rather than try to get him to eat large meals. I tried this yesterday (on no medication): he ate one homemade breakfast taco filled with eggs, cheese, ham and avocado for breakfast. He had a small serving of pasta and meat sauce for lunch (but did not finish because he was full), but then an hour later he ate an ice cream shake made with whole milk that I made for him. While we were out we got him a bacon cheeseburger for dinner. He ate 3/4 of it and would not touch the fries, but then he ate some of the fries before bed as a snack and the rest before breakfast this morning (hey, I'm having to loosen my standards of what a healthy breakfast is!). I was very happy with what he ate! I will see how this plan works out when he goes back to school on Monday on medication.

[Mayleng]

My older son (Not ADHD) was on Periactin for migraines for 4 yrs. Periactin is a first generation antihistimine, and is pretty harmless. One of the side effects is weight gain. I suggest only giving it a night before bed, since it can cause sleepiness. Give it time with the Metadate CD, my son's appetite issues balanced out after a year on it. He usually makes up by eating when the meds wears off in the evenings and on weekends . Giving med holidays as Healthy suggested is a good idea. My son has been on Metadate CD for 10 years, he is 18 now. He is the tallest in our family and while slim, he is healthy. He still does not take breakfast, but will be snacking and eating throughout the day and night and weekends. He does not take his medication on school holidays either. Carnation instant breakfast has helped, you can also add ice cream to it.

[crescentcitygal]

Mayleng, Thank you for the feedback on Periactin. The pediatrician did say that it would be best to start giving it only at night since it can cause drowsiness. When we see the psych. who prescribes his meds next month, I will have to ask him if he can take this while also taking Tenex, which he takes in addition to the stimulant to help with tics and impulsiveness. Tenex can also cause drowsiness, but he takes only a small dose. I am willing to give the Periactin a try, but I am going to monitor his eating habits and weight on the Metadate for a bit longer. The doctor wants him back for a weight check in 6 months and will add Periactin if ok'd by the psych. if he is not happy with his weight gain. I think I will ask for an appointment sooner than that if I don't see any real appetite improvement in a month or two.

[michellea]

My son has been on concerta for 8 years. Until he hit puberty, it decreased his appetite substantially. He never lost weight, but he was very slim (20 percentile) for his hieght (50 percentile). We were able to count his ribs - in his back! To keep as much weight on him, we gave him med holidays on the weekends and vacations, he ate HUGE breakfasts that included whole milk, bacon and high calorie foods, and we ate dinner after the meds off at about 7:00 pm when his appetite resumed. I thought about making sure he got enough nutrition daily.

For some reason, when he hit puberty, his appetite increased on and off meds - he is now solidly in the 50th percentile for both height and weight and he is a very active person - hiking, biking, running, lifting almost daily. So, for him to gain weight despite lots of exercise is quite a relief.

It sounds like you have a solid plan for monitoring/increasing weight. I would keep an eye on things and try to sort out if it is in fact the meds that are causing him to lose appetite or something else. I do know of boys with anxiety difficulties that manage their condition via food intake. You want to make sure that it doesn't morph into an eating disorder if something other stimulant side effect is causing the hunger and weight loss.

[jw]

Hi,

My son was also very thin from about 4th through 9th grades, after starting ADHD meds in 3rd grade. He is now a senior in high school, and is 6'3" and about 200 pounds, so it does get better. For us, we put Carnation Instant Milk (chocolate flavor) into his glass of milk with breakfast, gave him lots of peanut butter and nuts (he loves almonds and peanuts), and allowed him free reign to have food after dinner. It seemed his appetite would kick in about 9 pm, and the doctor said to let him have whatever he wanted then, which very often was ice cream or milk and cookies. So not the first choice in diets, but it kept him going and eventually the appetite suppression from the meds got better and better, and he gained more weight. I still cringe when I look back at old photos, because he looks even thinner than we realized at the time.

Good luck! jw