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Weight Gain With A Feeding Disorder? Help!

Charlie's weight check on Monday was terrible in a string of terrible checks. The doctor noted "no significant gain". For those of you with kiddos with feeding disorders, share your ideas of what worked, what may work, or what you wish you would have tried. I'm desperate to avoid a g-tube. 

CharlieAllene's mom

10 Replies

  • 99days

    In reply to CharlieAllene's mom:

    It is so great to be able to compare things that is working for you guys. I tell my friends all the things we do and they have nothing to compare really.
    Some of the ways that you describe Charlie remind me of Bruce. He has always looked so much smaller than the other kids his age. A lot of the boys are a head taller than him and have sturdy builds. He kinda looks like he has a 6 pack because he is so thin. Currently at 3 1/2 he is 37.5" and weighs 30 pounds.
    In so many ways Bruce feels like a normal kid. Then it comes to the feeding and you list all of the issues and it is just crazy. I'm not sure if he is capable yet for the potty training or not. The preschool he is starting in requires him to be potty trained by September to start, but I'm not going to push it. It is co-op so I'll just go every day with him for now in hopes he'll get there soon. They won't help with the bathroom so at least I can be there for now while I am a SAHM. I'm hoping that being around all the other kids who go on their own will get him there. We tried a day of underwear and within 4 hours we went through 5 underwear that were wet. He never would tell me they were even wet, he would keep playing. We would sit on the potty, but he would wet the underwear anyways. He won't even tell me if his pull-up is poopy. I worry that it may be delayed as well. I hope that it comes some day and he is just ready.
  • CharlieAllene's mom

    In reply to 99days:

    Oh no worries about the forums. I think you had some great advice. Plus, other people who don't write also read these and could use your advice as well.

    I know what you mean about being excited to find people who understand. Parenting Charlie has been so far from "normal" I get so excited when someone gets what I'm talking about.

    Sigh, no Charlie is not potty trained. Her developmental pediatrician doesn't expect her to be for some time. Cognitively and social she is on track... but the physical part has been so darned slow in catching up. I wouldn't care so much but it's exhausting having a "baby" for so long and it's holding her back from preschool. None of the private preschools will take her because she's in diapers and the special ed preschool won't take her because cognitively and socially she's on track.

    What I think the problem is for Charlie is that she doesn't know how to control her bladder and bowels yet. She has only realized that she was wet once (she stripped). She understands the toilet, loves flushing it, and hands me toilet paper. I guess we have to wait for that part to catch up to the rest.
  • 99days

    In reply to CharlieAllene's mom:

    Rebecca,
    I'm so glad that she's on the right track. I think that I may just have to focus on that for Bruce as well. It is always such a guessing game with the kids knowing what to push and what to hold back on.
    I'm still figuring out how to work these forums. I didn't know if you guys are responding to an original post or to each separate response. I'm so excited to find some people finally who are in the same boat and may have similar ideas on what to work on.
    Is she potty trained yet? Bruce is not. He will go when I tell him, but won't tell me if he has to go or is wet. I don't know if I should push it or just wait until he's telling me he's ready. I sometimes wonder with all the feeding things if this is his one area of control and he's claiming it.
    Thanks,
    Cassie
  • CharlieAllene's mom

    In reply to 99days:

    Hi Cassie,

    Wow, I wrote this a year ago. I suppose I should write an update.

    After the bad weight checks... The developmental pediatrician recommended her to a feeding clinic. It was a gastroenterologist with a dietitian and SLP feeding specialist on staff.

    This referral was a God send. Prior to all this, other than weekly feeding therapy from Early intervention, I didn't have much support. At Charlie's first evaluation at the clinic by the doctor and staff, they noted that Charlie was not chewing, gagged on solids, and was on the wrong formula. Basically, despite being two she ate like an infant. Also discovered during that visit, was gastroparesis and slow motility.

    I about cried with relief. Finally, someone understood why I was having such a miserable time feeding her. I wasn't crazy.

    Anyhow, her formula was changed to something more appropriate (Peptamen JR). Her gastroparesis and slow motility was addressed with medication. Feeding became better than ever for her. Once on the proper formula, her weight gain was no longer a problem. The reflux and vomiting ceased.

    Her forward progress has been painfully slow... but she's progressing. It took us about 8 months to get scheduled into an intensive feeding program this August. In those 8 months, she's improved enough that it's unnecessary. I just canceled her reservation (or whatever it's called) today.

    The GI feeding clinic who really understood us and got everything rolling said, "Charlie will most likely eat when she's ready." at her most recent follow up last month. I agree with that statement. I feel like as long as we remove the obstacles (such as gastroparesis and MPA) and continue working on the sensory issues then she will get there in her own time.

    She continues to be formula dependent but currently she is on a roll to where I hope her formula days are numbered.

    Thanks for all the great ideas. I will be sure to try them.

    Thanks,
    Rebecca
  • 99days
    Rebecca,
    I understand the fear of the g-tube. One of Bruce's doctors kept pushing for it and I told him to wait. He is still very small, but showed some growth when taking an antihistamine called Periactin. They used to give it to cancer patients and people without much hunger. We do 3 weeks on and a week off to keep it most responsive in his body (he weighs 29 pounds and takes 3ml in the morning and 3ml after nap). It is short acting and doesn't seem to have any side affects. You wouldn't believe the difference in his appetite. He used to intake such small amounts of everything including formula. We have him on Pediasure 1.5 Vanilla (356 calories per 8oz). We had him on Pediasure Peptide 1.5 which is easier for the body to break down if she has any problems with that. We also have had success with adding Miralax to keep him regular. He would go 3 days without pooping. That would make him avoid food too. Little things can make such a difference to their little bodies.
    I'm guessing they will tell you to try to focus on getting her weight up first with any calorie intake possible before worrying so much about solids. We did a little of both. Lots of formula and still offering foods. Some snacks we've been surprised by: pirates booty (easy popcorn), pudding in pouches (90 calories), little pancakes (cover with butter and syrup), mini mms, and smoothies if she'll eat them. Foods with high calories: macadamia nut butter (tons of calories), coconut milk, fruit nectar drinks, full calorie chocolate milk, milk shakes, add chocolate syrup (100 calories per tablespoon), sesame seeds, butter (one of Bruce's first foods he would eat, gross but calories), and dessert yogurt (full fat yogurts). I've heard of people making a pretty tasty smoothie out of some of these and they are crazy calories. I found most ingredients by looking at what weight lifters use to bulk up.
    Let us know if anything is working!
    Cassie
  • CharlieAllene's mom

    In reply to lvazquez:

    Lindsay,

    I will ask her OT and Developmental Ped about How Does Your Engine Run. Charlie does have sensory issues. They were pretty severe as an infant... but with OT they have improved quite a bit. Her hyperactivity may be a sensory thing... but it could also have a genetic component. I was incredibly hyperactive as a young kid. I'll look into your suggestion.

    She's been referred to an intensive feeding program that lasts about two weeks. I hear good things about it from other parents.

    February marks the two year anniversary of her involvement in feeding therapy.

  • lvazquez

    In reply to Hunter and Randi's Mom:

    Rebecca, have you heard of How Does Your Engine Run? We use it with T. A few years ago, he was doing similar things like running around the kitchen counter multiple times and jumping off couches:) His engine was running too fast (red) and we needed him to be just right (yellow). He definitely had high energy and learned that it was sensory. He couldn't feel his body, needed deep pressure, and was doing those things to get feedback. At the time, his sleep schedule was crazy too and it was like having an infant again, but he was 3, 3 1/2, 4 and the crazy late nite hours were draining his parents. We were about to start melatonin drops, but I went to a training thing and thought we'd try some other things first. We had to make sure that he ran around in the morning, but not so much in the afternoon. When we started noting it (more data) along with his settling down routine, we all started sleeping through the night again. I don't know if C has sensory issues, so maybe this doesn't apply. To slow my guy down at times after body sock, he wears ankle weights for a few minutes too depending on what we're doing.

    We are revisiting dairy this coming week in feeding. Hoping to get T to try some other options.

  • Hunter and Randi's Mom

    In reply to CharlieAllene's mom:

    I'm so sorry Rebecca. Hunter's feeding issues did not affect his weight gain so I don't have any advice here.  Sending hugs and positive weight gain thoughts your way.

    Marissa

  • CharlieAllene's mom

    In reply to lvazquez:

    Lindsay,

    Thanks for answering. I will check the website out tonight.

    Charlie did have a significant oral aversion. Through feeding therapy and constantly working with her... she has moved past most of it. Her problem now, is CP related.

    Her speech and feeding are really affected. She has trouble managing foods that aren't soft. It's not a gag reflex that stops her from eating now. It's that she has trouble with the movement of food, chewing, and swallowing.

    As far as her activity level, it would take a tranquilizer gun to slow her down. If we aren't out doing things, she's climbing the couch or running in circles.She's very motor driven. We try to channel it in to activities rather than running laps around the counter or jumping off the couch.

    She did fine when she was 100% formula fed this summer. Her formula consists of hydrolyzed whey protein. Her formula was very broken down. It makes me wonder if there is not a malabsorption issue when it comes to eating foods of higher composition. She's interested in eating food so much so that she doesn't want much to do with her formula.

    So yeah, I don't know. I will hit up the Feeding Matters website though. Thanks Lindsay.

  • lvazquez

    Rebecca, please check out the wonderful website: feedingmatters.com. It's a wonderful non-profit that I found last year that covers many kinds of feeding issues. You will find additional support there. There is an upcoming feeding conference in the next month or so they are doing where people can participate virtually. You might want to check it out.

    We have weekly feeding therapy for T. He is sensitive to textures, odors, colors, and shapes. Some days, he only eats certain colored foods and might hide in his room if I'm cooking something unpleasant to him. We just started using the book The Food Parade. It does highlight food groups, but has pictures of different foods kids can maybe identify. We are focusing on grains next week.

    I know you've said that C is very active which is a good thing. Has the peds suggested to reduce her activity for a period of time to see if that makes a difference? Sorry if you already wrote about it and I missed it. I'm not on FB, so I know that there's tons I'm missing.

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