Wednesday, September 9, 2015

no training available

Food issues (for lack of a better description) are starting to become more pronounced with Russell. This is the stuff that there is NO training for. None. I'm in uncharted territory. I now have to gather as much information as I can from those that have gone before me in similar situations and from medical professionals in his life and I have to make a decision as to how to handle things best.

Here's the scoop.

Russell was born August 4, 2013. According to the medical records I was able to get ahold of, he was "on" the growth curve at birth. He was around the 25% mark. But he was on the curve.

Almost immediately, Russell dropped off the growth curve.

We will never know why.

Did his mother honestly not feed him? Did she breastfeed and it didn't go well? Did Russell have legitimate feeding problems from the beginning even on a bottle?

As he got older, he dropped further and further off the curve. When he was hospitalized on February 6 (for a broken arm and the subsequent abuse that was finally discovered), he weighed less than 10 pounds. He was 17 months old.

As you can tell, when he entered foster care, his growth curves for both weight and length started going almost straight up.

Russell was hospitalized for 6 days upon coming in to Care. Then he went to a shelter in Central Texas. At the shelter they worked hard to fatten him up. He was on Pediasure and they fed him around the clock. They also had him eating baby oatmeal and other stage 2 purees.

When he came to me, I kept him on the same diet at first (though he no longer ate in the middle of the night). He didn't take the overall quantities that I was given by the shelter in his dietary plan. (I have no idea if he was honestly taking those quantities in the shelter. I seriously doubt that he was.) But he ate regularly and without complaint. His tongue thrust isn't incredibly pronounced and he had no problems taking food. He could not drink from a sippy cup, but he had no problems with his bottles at all. (Other than being a little messy sometimes as he'd let fluid drip out of his mouth. At the time, I thought little of that.)

As the weeks went by, I started making my own food. At first all I did was make purees like the store-bought jars. I'd make them a little thicker though because he didn't mind. I gave him a wide variety of flavors and he didn't reject anything.

I started adding texture. The first food with texture was probably refried beans. He ate them without complaining. He started eating oatmeal for breakfast - first with bananas, then with cooked apples or even raisins.

I started adding tiny bits of meat into his food about 3 months ago I think. The first time I did it without a gravy though it was obvious that the texture was too much for Russell. I had chopped up tiny bits of chicken and stirred it together with rice and broccoli. He didn't have to chew much to eat it as the bits were so small. But he couldn't eat it. Just couldn't do it. The food would sit in his mouth. He wouldn't try to chew or swallow.

I solved that problem by making a gravy and stirring the chicken, rice, and broccoli into that. Russell ate that batch of baby food without any major issues.

Things have been going downhill for the last couple of months though. So much so that I've got Russell's speech pathologist involved and she's added some feeding goals to his overall list of things she works on with him.

Russell is rejecting food - especially anything with too much texture. He's very much rejecting anything with meat or beans. He'll still eat the oatmeal for breakfast. But he is VERY slow about it and he's going about things in a way that is markedly "not right". He'll devour applesauce or regular yogurt. But he seems to not want to eat Greek yogurt anymore.

Russell only wants to eat super soft purees.

His speech pathologist and I both agree that Russell possesses the ability to eat absolutely everything I'm feeding him. He chews. He can move his tongue correctly around his mouth like he's supposed to. And there are no concerns of aspiration.

But he'll take a bite of oatmeal and he'll just leave it in his mouth. He won't complain. He won't try to spit it out. He'll just leave it there. It will take him as long as a minute before he gets around to swallowing the bite. Even then, he'll often pocket bits of food on either side of his mouth.

He should be able to sweep the food off a spoon. He's not doing it consistently yet. And he's worse when the food is thicker or has a lot of texture. The therapist noticed this morning when feeding him that he even tipped his entire head back to get his oatmeal off the spoon rather than use his tongue the right way.

When he drinks, he guzzles so bad and then milk just runs out of the side of his mouth. Even when I take the cup away from him (because he is now drinking out of a sippy cup), milk will pool in his mouth on the sides and even in the front. He simply doesn't swallow it all.

And lately, if the food I'm trying to feed him has beans or meat in it, he's rejecting it almost altogether. He cries. He turns his head. He won't open his mouth. He won't eat it. And these are foods he was eating, even if not perfectly, for several months.

This is where it gets tricky.

WHY is he not eating? Why is he not eating well?

Is it developmental? He is behind because of the Down syndrome. He's also behind because of all the massive neglect.

Is it the typical food rejection of a young child?

Is it a deeper food issue because of the starvation?

WHAT do I do to help him?

His speech pathologist continues to work with him by doing oral motor exercises. She now feeds him once a week incorporating these exercises into the feeding as well.

She commends me for continuing to feed him lots of foods and textures. But she doesn't have much to say about what we need to be doing right NOW to help him with the food issues.

Do I continue giving him full meals of the thicker, more textured foods and just deal with his rejection and refusal to swallow?

Or do I go backwards and start giving him more full purees so that he'll eat better and the meal is more pleasant and makes him happier.

The last thing I want to do is to turn mealtime into a battleground.

Almost every foster child we've had has brought some sort of food "issue" to the table. None of them have triggered me the way Russell's are right now. Obviously I have to deal with myself here. I've never had a baby refuse to eat though. And it scares me. I don't want to go backwards and feed him purees. What if that's all he's eating when he's 12 years old?!

But I don't like how sassy he gets when he's refusing to eat either. The poor thing was starved for 17 months. I want him to enjoy mealtime. I want him to be happy. This must be factored in to the equation.

His speech pathologist doesn't say much about everything. She just commiserates with me. I guess it's been good that I'm being validated. The way he's eating isn't "right". At least I'm not crazy trying to blow things out of proportion.

But I wish I knew what I should be doing right now about it.

And if y'all tell me to keep on giving him the thicker foods that he's rejecting and not swallowing - y'all had better tell me how to get my head screwed on straight. Right or wrong, it makes me mad. He gets pissy with me with everything I have to do to keep him clean and healthy. (The only thing I don't have problems with is diaper changes.) It wears on me to continually take care of someone and have them reject my care at every turn. Mealtime is personal. Oh so personal. And when he's rejecting the food, it's like he's rejecting me. I KNOW I HAVE TO GET OVER IT. But someone help me reframe it. I can't talk to him about this. I can't reason with him or ask him what he wants. I'm dealing with an infant here. Chronologically he's 25 months old. Developmentally he's well under a year for his language skills and 10-11 months for everything else. I can only relate to him as an infant. No sticker charts. No rewards. Nothing like that. He's a baby.

20 comments:

Anonymous said...

What about finger foods? Will he eat crackers or food he can feed himself. I use to work in infant room at a daycare. Around 10-11 months feeding became difficult because they wanted to feed themselves. If it was a total texture thing they would gag and even throw up.

Because of the starvation I wouldn't keep giving him the extra textured food. I would give him what he will eat if anything of texture stuff then give him soft foods too so he is eating something. Keep offering but not forcing/struggling.

It sounds a lot like RAD symptoms too but it's confusing because the age difference between his real age and developmental age. I wouldn't worry too much unless he totally refuses to eat at all. I would feed him what he wants for bonding purposes.

Hugs

Anonymous said...

Posting anonymously to protect privacy. I have had this same issue. Micropreemie, not Down's, plus aggressive spoon feeding in infancy. It was a nightmare. Even stage 1 purees were a screaming choking gagging refusal. I know the rage you feel. I could tell myself that it wasn't her fault and yet something about spooning food into a baby who screams and dribbles it down her shirt is FULL OF RAGE. I get it. I really get it.

My advice: Put one spoonful of food at his texture threshold into his mouth and then back off, ignore him completely, and go about your meal at the table (or do whatever you do in the kitchen while he eats, chat pleasantly, play peek-a-boo, etc). Give him 30 minutes in the high chair to play with it in his mouth. After that, sweep it out and give him a bottle. (Or whatever your best way to get nutrition into him in a pleasant way is.) No trying, no engagement, just put something into his mouth when he's hungry and leave him alone for a while. Exploration only.

Once he starts having the hand-eye coordination to be able to pick things up and put them into his mouth, I would change that to waiting until he is REALLY hungry, then putting him into the high chair with two very small pieces of food (something salty that dissolves, like a fragment of Pringle potato chip), and giving him 20 minutes to try eating it. Praise him the minute he pops it into his mouth, and reinforce the "I feel hungry and then I feed myself and then my tummy feels better" cycle by immediately feeding him something yummy in the way that he likes it. (For us, bottles.)

But my advice is to take your effort out of the feeding cycle. It does damage. Not just to your blood pressure: frustrating them by making them feel orally uncomfortable is not the way to foster oral curiosity. They will continue to shut down. My baby hit her worst point when she even started crying with her lips clamped shut. She completely shut down her entire oral system because having stuff shoved into her mouth, over her protests, was so violating.

She is still off the bottom of the charts at the 1st percentile but she self-feeds like a normal toddler now. A little underweight is not the end of the world. Feeding trauma can be, though.

Jill said...

Add stronger flavors to increase awareness in his mouth, or add cold, like ice water or popsicle before the meal to wake up his mouth. Why the mix of food? Gravy, rice and chicken is more difficult for him than maybe just chicken pieces(add ketchup or honey mustard to increase the sensory properties of the food. Also offer a preferred food, a sometimes accepted food and a typically refused food at each meal. These are my OT ideas off the top of my head, if it's more a developmental issue than a different issue.

Foster Mom - R said...

Disclaimer- I've never had a baby so I don't know much about these things. But I do hear the stress in the post and as someone who cares about you here is what I say: who cares if it's "backwards". He is eating, he is trying communicate and even if at the moment he can't tell you why, that may not be forever. And so what if he is eating puréed food at 12. If he is healthy, happy, and safe and it doesn't harm him what does it matter? If that is what he needs, that is what he needs. He has made sooo much progress. Give yourself some credit and a break and let that be enough. Maybe he's testing like so many of our kids do that you will continue to feed him even if fussy. Neurotypical kids get fussy for no reason. I had a cousin that refused meat from the age of 2 until 5. No reason. Just stopped. All he ate was off a list of 10 things. I would say he has much bigger battles to work on and perhaps there is a cause but with all the other work he and you are doing, make life calmer and let him eat what he likes so he can keep growing. I mean for crying out loud YOU MAKE YOUR OWN BABY FOOD! My kids got left over Buffalo Wings Last Night!

When our therapists did the kids' trauma assessments I got really hung up on the "what caused the trauma" piece. They told me it didn't matter to the treatment because we had to heal what was and we would probably never really know the exact event because they were so little. They told me to focus on the evidence of healing. In Russell's case- it's that chart above. Look at the drastic change- your purees did that. They are working. Sometimes we have to go back to what worked. I know the 1 step forward 3 steps back is maddening but you are doing amazing!

Does he like fruit? Would he take a thicker smoothie? Maybe with Almond Milk?

Cherub Mamma said...

@anonymous...

No finger foods. He'll barely pick at Cheerios or other finger foods. He MIGHT pick up and eat a few of them. But not because he WANTS to self feed. He completely freaks out with the pouches of food too. Will not let them in his mouth. I do have to feed him everything.

As for the RAD...no! He doesn't have attachment disorder. Not on the spectrum for autism either.

@jill...

He can't eat "just chicken". He wouldn't chew that at all. He typically lets any solid piece of food put in his mouth just sit there. Eventually he'd spit it out. I've not been successful in getting him to eat any plain food at all. Mealtime would easily take 30 minutes or longer if was expecting him to chew and eat single foods. He doesn't like those at all. I've offered soft fruits, green beans, cooked beans, and pieces of meat. He's not ready for real food yet at all. :(

Anonymous said...

Anonymous #2 again -- Those pouches are awful. Hard and painful against the gums. These kids are panicking at a single bean; anything that's rigid plastic on their lips will be an instant refusal.

It was helpful for me to google about feeding trauma associated with tube fed preemies. Lots of good OT advice about overcoming the oral freakout reaction cycle. Worst case scenario, he gets a g-tube and the bulk of his nutrition overnight, while you use mealtimes for speech and oral exercises and establishing a happy family social routine, until he catches up developmentally and starts to eat.

G said...

I've got no advice. Just virtual hugs and prayers.

It's so scary when an underweight child won't eat. (Well meaning people who don't get it don't help. "If she get's hungry enough, she'll eat what you offer" is a false statement.

Kim Saffran said...

wow this is a tough one. You want him to eat and thrive and not have meal time a bad experience. Our foster care child came to us at 18 months with food issues. We don't think he was feed enough so he would horde food and he would only eat "snack" foods. At the beginning we just let him eat whatever he wanted but we would always offer him good foods. Two years later - he still has to sleep with his sippy cup in one hand and a cracker in another and he now eats better but still not as good as I would like. Still refused to eat any time of meat other than chicken nuggets, hot dogs and hamburgers. I would just feed him what he wants and will eat but continually offer him the others. Have you asked his doctor for advice? I don't think going backwards at this stage is really a bad thing. Hugs

Anonymous said...

can he get a swallow study like https://www.allkids.org/services/rehabilitation/speech-language-pathology/pediatric-swallow-studies ?

I agree with the others who said to continue offering challenging food but not to worry too much about him eating it. If he can get his needed calories from soft purees and bottles, then he'll grow--and if you are calmer and he can bond well with you, so much the better.

KMullin said...

I do not have a foster child, but I was a child with food issues (based on taste bud issues), which drove my mother to the point of near insanity. My younger siblings at everything, if something had a weird texture or tasted too strong, I couldn't eat it. My father was neglected as a child and until the day he died, he ate everything all the time. Even though he hadn't been starved in decades, he still remembered.

Personally, I would keep giving him purees. If he will eat it, I would give it to him. I know that it is dictated that they should be forced to try new things, but my oldest, like myself, has texture issues, etc...and I refused to fight with her. If she didn't want it, fine, she could have something else.

If he is 12 and still eating purees, will that be terrible? I don't know, at least he is eating. And you can breathe and relax a bit. Keep giving him samples, but if he doesn't want it, ok. Food issues are so difficult and if he starts to associate food with stuff that is scary (like he may anyway) then he won't eat at all.

You are doing great, it's ok. Since he can't express his feelings in any other way yet, this is his way.

Anonymous said...

Could it be sensory, texture wise? I know a lot of kids with DS require feeding therapy/vibration tools to "wake up" their mouths before they really figure out what to do with it. Same goes for learning how to sip. I'd recommend posting in one of the Down syndrome facebook groups and talk to DS mamas about their kids and what they've done. There are a number of different groups with knowledgable parents.

VJ said...

I like the suggestion to give him something that he normally doesn't like, leave him to mouth it for awhile, and then return for a real mealtime that is just the purees he enjoys. Then he is still getting exposure to the textures but also getting his nutrition in the end.

When I am stressed about a kid's development, it always helps me to play the "worst case scenario" all the way through. You said "What if he is eating purees at age 12?" What if? He can still get nutrition from purees. Blenders are not that expensive. As a kid with Down's, he's not going to be "passing for normal" so it isn't like you have to worry too much about the stigma. I think this is probably just a phase that all toddlers go through of rejecting food (I had a neurotypical kid, not abused or in the foster care system, who only ate Goldfish, Cheetos, and Cheez-Its for TWO YEARS. He lived!). But even if it's not a phase, it's okay.

DS forums and parents' groups will also have experience with this, I'm sure!

Helga said...

I am no expert but do have a nephew who has all kinds of food issues and he is a tiny little thing and always has been. I would go back to square one by feeding him the purees he likes. Here's the first thing I thought after reading your post, he is at 10 months developmentally and at that age, not all children are eating regular table food or even textured food. My nephew wasn't and still to this day has problems eating a lot of different textures and flavors. The specialist my sister took my nephew to told her to feed him what he is willing to eat. For a few months all he would eat was oatmeal so my sister fed him homemade oatmeal packed with vitamins and she was happy while he was happy and then he wanted only buttered bread and she didn't want to feed him bread all day but the doctor said if he would eat it, feed it to him. He is 3.5 years old and is getting a little bit better but it has taken all of those 3.5 years to get him to where he eats close to one full meal a day (combined). Quit letting Russell's food issues be your issues, you will wear yourself out. Give him what he will eat and enjoy the little things.....like the fact that he is chunking up in your care and he is happy and safe <3 Hugs

Anonymous said...

I second the opinion about a swallow study. Good to rule out any true physiological swallowing issues. Our 10 minth old foster baby has a gtube and just passed her repeat swallow study. She is practicing with baby food but it is slow and difficult to say the least so I can sympathize with you! Feeding issues are very stressful, hugs to u...

Bee said...

Consider a sensory issue. Low sensation in the mouth? I agree his mouth may need to wake up. We gave our 1 yr old foster son a vibrating teether or toothbrush before every meal. Let him chew on it or massage his inner cheeks and lips. Pushing firmly down on the tongue during spoon feeding. But I will say this is "normal" and we had many food regressions and progressions. 2 steps forward, one step back.

abrianna said...

I too was wondering if he has a sensory issue with food. And if he is eating pureed foods at 12-that is called smoothies or juicing and he will be in on the trend :) Had to add a bit of humor here for you. I know it is tough.

Pam H. said...

So a few things I was thinking of: 1) Has he had any episode just before his change in eating patterns of choking on some piece of food? This happened to my son and niece and both had significant eating issues afterwards. 2) Agree that textures might be an issue. For 1 and 2, go back to puree until Russel is comfortable eating happily again. 3) Has any new food been introduced around this time. (Not size - like pureed chicken versus chicken pieces - but a new food altogether?) Especially in little babies, their bodies have a very uncanny way of sensing a food allergy BEFORE it becomes obvious to mom/dad or doctor. A food allergy isn't always the obvious swelling, but enough of it over time can result in the obvious. Food can be given several times before the allergy shows up. Trust your baby's instincts. 4) Is your child on any medication or recently changed meds? Sometimes medications can really hit the eating aspect hard. 5) Agree with a swallow study - there might be a mechanical reason for this. 6) One last thing - some children even babies, have trouble with foods that are mixed together. The different textures in his mouth at one time can be disturbing him - for instance rice is one taste/texture/shape, broccoli is another taste/texture/shape, chicken and then gravy - try one at a time instead of a mixture. It might be frightening him on a level that we don't understand. (I have a tad bit of problem with this as an adult which is why I suggest it.)

If he does not show an interest in certain foods, forcing it can be detrimental and have long term affects. (My son, when living with his bio mom, was force fed in horrifying ways, and it took him YEARS to overcome this. He also had problems with textures like mashed potatoes and so many other foods, and up until he was 14 years old was so far off the growth chart, they did a bone study. Now one year later, he has gone through a hungry time and has gained 25 lbs in one year.)

Final piece of advice? Feed him according to his standards and not yours or another child's his age. In other words, it's okay to puree - if he eats it, this is all you need for him. Don't feel like you are losing ground, just taking smaller steps to gain ground. Please as a final disclaimer, check with your doctor and see what suggestions they might have - it could be a minor or significant health issue so be persistent in this discussion and follow ups.

Mrs. Hall said...

MY VOTE:

'Or do I go backwards and start giving him more full purees so that he'll eat better and the meal is more pleasant and makes him happier.'

It's a lot of change eating and growing and being loved up wholeheartedly. Maybe he's regressing to deal with things a bit better.

just my thoughts

Anonymous said...

Our son is also adopted, and we worked with a wonderful adoption center when we brought him home at 9 months. The doctor there told me many times that adopted/abused/neglected kids have big feelings that they may not understand, or know how to communicate, even as infants. That we could expect our child to "rebel" in the only way they knew how. With our child it was feeding issues. The doctors advice to us at the time- do whatever we had to, to get the calories in our child, as peacefully as we could. I can say now, 5 years later, that we took many, many steps backward, but today, we have a healthy, happy, well adjusted, child, who is an excellent eater.

Dodi said...

I use to read this blog about a lady who adopted 3 girls with down syndrome from Ukraine. they all experienced trauma and feeding issues. She has written such wonderful things about raising these special children. Check out who blog it's still up though she no longer keeps it up. Maybe you could also try to get in touch with her. Before she became a mom she was a special ed teacher. This is the link for the blog http://angeleyesadoption.blogspot.com/?m=1