Friday, November 12, 2010

Time for Intervention (Feeding Specialist)

I confess, my patience regarding Landon's feeding/weight issues has finally gotten the best of me.  I have pretty much exhausted all possibilities and have felt that it was time for an intervention.  Landon turned 21 months yesterday and he has only gained 1/2 a pound since his 18 month check up!  That's right folks, Landon now weighs a whole whopping 18 1/2 pounds=(  FRUSTRATING!!  I have been getting tips from other blogs, friends, "professionals" and nothing has seemed to work LONG TERM (or long enough to pacify me)!  I am a pretty patient person, but I do have limits!

Landon's pediatrician gave us a referral to a local feeding clinic.  Although Landon is an outpatient at Children's Hospital Boston (Down syndrome clinic), it was unanimous that Landon have his initial evaluation done locally (in case he needs to be seen weekly) and he would be seen in Boston at his next clinical in January!  That works for me, as traveling 45 minutes once or twice a week just does not fit in to our schedule!

This afternoon we met with a feeding specialist.  The events that have led us there are as follows:

- Landon officially dipped off the Down syndrome growth chart (at his 18 month well-visit in which he weighed in at 18 lbs.)

- Landon still eats stage 2 purees......will not give stage 3's the time of day

- Landon has added "MINIMAL" solids to his menu (Gerber cereal bars, cheerios, Gerber cheese curls, toast w/ hummus, cream cheese and a thin layer of peanut butter, pirates booty, a slice of American cheese (on occasion) and yogurt (well, this is still a puree)

- Landon drinks 3 "bottles" of whole milk a day (at 5oz. a shot)  I admit, I have issues with him still taking the bottle.

- Landon recently went to the Dr.'s  for his flu shot (2 weeks ago) and weighed in at 18 1/2 lbs.

- Landon "WAS" drinking from his honey bear cup/straw and has since decided that he is so over it!

- Landon will drink from a sippy cup......FOR ME.......but will not consistently do so for others.

- We are not really sure if Landon is "chewing" his food or moving it around his mouth (so that it melts) and then swallows it.

So, I am a bit bothered by the whole bottle thing (it's just not part of MY plan, diagnosis or not, I want him off the bottle by the time he is 2) Selfish on my part, YES!!  It frustrates me that he will not take the sippy cup consistently since he is quite capable of drinking from it (STUBBORN on his part, MOST DEFINITELY)!  I am frustrated that he can eat purees and pieces of toast (crunchy and all) but will not combine the textures or at least be willing to try something new.  We have been stuck on this same menu much longer than I expected.  If I give Landon a noodle with alfredo sauce, he will suck the sauce off and spit the noodle out.  If I give him a french fry dipped in ketchup, he will suck the ketchup off and spit the french fry out.  We have tried mashing and small pieces and putting dinners through the food processor.  We have tried different textures and different techniques and the list just goes on.  Frankly, I'm tired.  I'm tired of TRYING!!  Maybe I'm the problem!!!  Whatever the case may be, in the best interest of Landon...............I.NEED.HELP!!

We met with the feeding specialist today for about an hour and a half.  We went over EVERYTHING from Landon's birth to where he is today.  I was asked to bring in a bunch of things that Landon eats (and I took that VERY seriously, lol).  I brought a little of EVERYTHING from his menu.  I even brought in ALL the different "cups" that we have tried to offer him.  YES, I was prepared!!

We began with transitioning between the different foods, and don't you know, that little bugger did so like each bite was the same!   HA!  The consensus has been that Landon tends to "munch" rather than actually "chew" his food.  WELL, today he showed signs that he was actually chewing!  Surprise, surprise!!  Hmmm, maybe the 6 teeth that he now has, is helping!  Then we moved on to drinking.  Landon generally will drink (unassisted) from his bottle, for me (pretty consistently).  But, lately at home (with grandparents) and at school he has been a little naughty boy taking a sip from his bottle and then throwing it across the room.  There have been consequences for that (like having his bottle taken away)......thanks Melissa=)  But of course the little show off that Landon is, drank his whole bottle (unassisted) for this complete stranger.  Ugh!  Finally, we moved on to the sippy cup, which he will drink from "the most" consistently but will whip it at your head as equally consistent.  Not today my friends, with a little applauding, he drank from that sippy cup and placed it ever so gently on the table after each sip.  SERIOUSLY???!!!

The outcome of this meeting was that the feeding specialist felt like Landon was a good candidate for this program.  The pros are that he has no health issues (no underlying problems that are preventing him from progressing).  Thyroid and Celiac have already been tested for and ruled out.  His tongue thrust is not bad, she feels like with some extra prompting techniques used while eating, that she can help him control it better.  Now that Landon has teeth, they will help him break down his food a little better (to avoid choking, giving him more confidence in trying new things).  She is very confident that Landon will progress (rather quickly) through this program.  However, she felt that we need to place Landon's issues in order of importance.

Our first goal will be to get Landon back on the Down syndrome growth chart.  Although it is expected that he will be a bit smaller, we do not want to overlook a "potential" problem.  It's best that we address this issue now and stay on top of it.  We will be adding a liquid multi-vitamin and we will add 2 bottles of pediasure a day.  This will require me to adjust MY plan.....if Landon chooses to do this by bottle only......then the bottle it is.  The goal is not to stress him out by changing too many things all at once.  OK, I'll give him that (well, maybe a little extension)!!  Also, Landon eats about 5 containers of Gerber baby food a day with snacks in between his 3 meals (for a total of 5 "meals" a day).  She would like us to add an extra container (to make 2) at breakfast.  Hopefully, this will help him to pack on a few pounds.

Landon will have his official weigh in next Friday.  We will monitor him for one month.  And adjust his plan as needed.  The feeding specialist will address some minor issues as we go along.  To this day, this has been the one area that Landon and I struggle with.  Some days it's just so hard when you see him progressing in every other area. You start to wonder if you are missing something........some significant sign that you are overlooking.  And yes, I have a HUGE fear of that!


  1. I read this.and hd to comment...veronique lived on noodles and Vitamen syrup and vegemite toast for 6 years...she is very healthy 14yro,, is is frustrating..and her feeding stubborness..went from wouldnt pee every morning)which morphed into urinary tract infection) and the poop factor..sigh..welll we still getting stubborness on that..and showering..and getting period and saying..I AM NOT HAVING PERIOD..and refusing to wear a pad...and yes..ya just gotta sit back..take a breathe..he is eating and ya gotta sneak the good stuff in when ya can..Nique wouldnt eat untill she was so stubborn..but I wouldnt change the snot bucket for the world..for what reason I dont know..she rules my life..and I adore her..I put it down to there are some things they CAN control..even tho it isnt best for there health..she always behaves and does better for others and I feel like a complete nong...oh well...HUGS to you...and it is a walk that does make us stronger, more intuitive..and special..we take the time to see..we take the time to listen..and I beleive our children help create the diamonds we are in life..multi facited and indestructible
    Peace Nat

  2. Thank you for posting so much detail! I can't wait to hear more as your sessions progress. I think many of us have issues with what our little ones eat...or should I say don't eat. Sweet Pea will eat well for daycare, but terrible for us at home. It's not good since we are cutting back from 5 days to only 2 days in a couple weeks since I'm going to not be working anymore! Good luck and please keep us posted!!!

  3. thank you! hey I need all the tips I can get...please post progress..any progress and how you did it! Maddie to has feeding PROBLEMS!! but they blame it on her tef/ea fix at birth...she is a couple months shy of Landon...she to is still on #2 gerber foods...and we go to the ER for #3 or fries or noodles...she is a choker...her OT thinks she does not have the connection yet from chewing to swallowing so we have her bite on chicken legs and help stimulate her and form the connection...and Maddie does not have teeth...but we know they are there!! so the nuk is our friend! how are they encouraging chewing for Landon? thank you for this post...smiles

  4. It sounds like you are getting the help you need. Isn't funny how he proved you wrong at the session? Lucas does the opposite, I say he can do something and he will refuse to do it. We still have feeding issues too, I think most of us do. Lucas still throws his cup and refuses to eat some meals. It's frustrating for sure. Looking forward to seeing how things progress for Landon.

  5. He'll get there!! Samantha was still taking Stage 2s and some Stage 3s at nearly 2 years old, so we supplemented with Step 2 formula (in a bottle) two times a day. She had only recently learned to drink with a straw at that time, and was only beginning to chew things adequately (as opposed to swallowing them whole and choking, despite the fact that she had all her teeth). On her 2nd birthday I ended the bottle and the formula, and she began chewing fairly well regularly (although we still had to watch her like a hawk) so we just gave her a liquid multivitamin in her drinks each day to make sure she was getting what she needed. Glad you were able to get him that consultation! We never went that route, but I'm sure we could have used it then. But he'll get there, I'm sure. :-)

  6. I don't have any advice but I will send you big cyber (((HUGS)))! It sounds like you have a good plan in place and with any luck he'll start inching his way back up on to the growth chart in no time!

  7. Ok, I have a question. This type of post I have seen alot with the Ds babies...Seems most have troubles with feeding and stuff...I guess I dont really understand, is there actually a specific reason why our kids have trouble in this area?? I really want to understand more about this as I am sure Russell and I will be encountering it all to soon...Do the Dr.s or Therpaists explain WHY our kids struggle with this??

  8. That is what intervention is there for. Hugs to you! He'll get it!

  9. Haven't been on here forever. Wysdom is alsmost 24months and at 22 pounds so not that far off. We have a g tube so our situation is different. However we do blended homemade diet via the tube. There is a yahoo support group that you may want to look at. For example you could add some fat in for extra cals into his regular food. Anyways we have a whole list of food that goes into our blends if you want more info just let me know. How many calories per day? We are on the honey bear or just trying it...usually it get's a few sips and a toss across the room. Yes I will "breath" in with you on this one:). Hang in there.

  10. I hope Landon gets the feeding help he needs! I was going to suggest just adding more calories....right now, at 9 months, Claire gets (4) 6oz bottles of BM plus at least some solids (purees or table food) per day. Her weight gain has been pretty steady, but as we transitition to more table food I'm afraid her gain will taper off...

  11. I feel your pain... and more so but sometimes,misery loves company!No seriously,I just know Landon will get there.He has a really incredible start and that coupled with the feeding therapy,I have no doubt that he will push pass this hurdle in no time.

    Miss Zoey began nursing at 6 months of age,after her heart surgery,went on to be a master food eater and then seizures and chemo zapped it all.Frustrating to say the least.Hoping to one day get that loving feeling back for food.Gotta happen or this momma is going to lose her mind!!

  12. How stressful! I don't understand why the kiddos will do things (or not do things) for the therapists or evaluators...always makes me second guess myself! I really hope this feeding specialist can get things going for Landon so that eating can be enjoyable!

  13. I am so jealous that you live near the Boston Children's Hospital DS clinic. Joe doesn't have feeding issues but he has had a bunch of other stuff. It sounds like you are going to get a qualified person to help you. I hope that this feeding specialist works well with your family.

  14. I sure don't have any advice... but he'll get there! He's an amazing little boy. Looking forward to the update!

  15. I feel like I am reading all about Jimmy's past struggles. It will get better but it took Jimmy a long time. He is 2 and 1/4 and doing pretty good although he won't drink from a straw and he doesn't chew his food very well. He is off pureed foods. Jimmy likes bean and cheese tacos with a flour tortilla. It took a few tries but now that is something he eats very consistently. Jimmy just got to 20 pounds a month ago. Try not to let it stress you out. When Jimmy was eating pureed foods, he would eat two containers at a time. Will he eat the meat in a container? Sometimes I would double dip, like put the spoon in the meat and then surround it with a fruit. I would also do that with smashed avocados.I also have him watermelon as a way to keep him hydrated. Jimmy still throws things though. I completely ignore that action (so hard) and praise him like crazy when he gives it to me or puts his sippy cup on the table. It helps but not as much as I would like.
    Good luck! I feel your pain!