more than just a picky eater

[mini_egg282]

My 25 month old son has had a lot of eating issues from the time he was 6 months old. We have figured out that he has an extreme sensitivity to gluten (possibly Celiac Disease) and between 6 months and 18 months he was consuming gluten occasionally. During that time he had such a small appetite and we were so worried about him that we would do whatever it took to get him to eat. Usually we would play games with him or give him toys to play with while we spoon fed him. His weight remained near the 50% percentile. At 18 months I decided that enough was enough and I wanted him to learn to like food and listen to his body. I was confident that he would eventually eat what his body needed, even if it took a month or two for him to regulate. 5 months passed and he continually dropped percentiles. He got down to about the 10th percentile and then we started putting a lot of pressure on him to eat. Mealtime involves us constantly reminding him to put a bite in his mouth, reminding him to chew, chew, chew, reminding him to swallow, take a drink etc. It's terrible, but his weight is slowly climbing again and he's up to about the 15th percentile.

I don't know what the best approach is right now. I am worried that we are putting too much pressure on him to eat, but we've learned that if we let him decide how much to eat he just keeps losing weight. I don't want mealtime to be a negative experience for him (or for the family).

He is also about a year behind in meeting typical language development milestones and has made quite a few advances since he started eating again. His comprehension is fantastic, it's just the speaking that is lagging behind.

Any advice would be so greatly appreciated!

[Chicane]

Hey there

Big hugs to you. How often is he eating? Could he be one of those people that needs/prefers to graze all day or eat small meals but more often? What is your own relationship to food like? Does he eat with the family and see other people enjoying their food? Is your doctor concerned about his weight gain? Is the TV on during meal times? When you remind him to take bites does he do it reluctantly or with any anger? Has a professional told you he is behind in language acquisition or is that just compared to his friends? How many words does he have more or less, is he making sentences?

Sorry for all the questions, i am just trying to get a better idea of what's going on. Its hard to know what to tell you. But i can make some food suggestions that might help with weight gain. does he like smoothies? You can make smoothies with lots of fruit and veggies plus oats or rice to help build up calories, pancakes are another high calorie dish that most kids like...sorry for no solid advice!

x

[We Three]

I am curious to hear those answers as well!  Big (((hugs)))...food issues can be so stressful.

 I think it is so important not not allow this to become a power struggle..the fact is, he may have some feeding aversions because in his mind, food=pain. Celiac causes alot of stomach upset and pain, and it is possible that he has made an association between food and discomfort, kwim?   

 Have lots to say, but will wait for a clearer picture of what's been happening..   

[mini_egg282]

I'm so glad you both have some ideas for me - I am happy to answer your questions

We are feeding him 3 meals a day, and 3 snacks a day. Usually we have the snack shortly after the meal so that there is a good gap before the next meal. Typically we have breakfast at 8, snack at 9:30, lunch at 12, snack at 1:00, dinner at 5:30 and snack at 7:00. He seems to have a lot of difficulty chewing up his food, but I think it's mainly disinterest. If we can get him to keep chewing he can do it but he often just get distracted and will let the food sit in his mouth. Today I gave him a snack right after lunch and he ate quite a bit - probably 15 cashews, a handful of raisins and some Cheerio-like cereal, along with an extra cup of milk. So it seems that he doesn't get full at meals, but doesn't have the focus to eat quickly enough to get enough food. We try to keep mealtime to about 30 minutes. The snack he had standing up at his toddler table. Part of the reason he ate so much was that his little brother was crawling around and interested in the food too.

I think I have a healthy relationship with food. I eat meals with the kids 95% of the time. It's a little tricky to get both of my children fed AND eat with them so I don't know if he sees me "enjoy" my food much, rather I am shoveling in a bite here and there when I can. I do talk about how delicious the food is though...and use a lot of positive reinforcement when he does take a bite/chew etc.. My younger son is even helping by clapping for the older one when he's doing well We don't have a TV and he can find anything to distract himself - a car driving by, a scratch on the table...He doesn't seem angry when we tell him to take bites but he is usually very reluctant. Sometimes it takes a mini-bribe - we will withhold a drink of milk until he takes a bite, or withhold his favorite part of the meal until he eats some of the other food, or offer a bite of dessert (or show it to him) if we really need to get him going.

I was surprised when we pointed out to his doctor that he dropped from the 50th to 15th percentile that he wasn't concerned. He just said that toddlers are picky eaters and that it is normal for them to drop down at this age and that he would likely continue to follow the 15th. He looked at my son and said he didn't appear "wasted" and generally appeared healthy so wasn't concerned. He is also not concerned about his language development. We attended a language screening clinic put on by the local hospital and they have referred us for a full evaluation. It takes about 8 months to get in though. Basically he is saying single sounds and still doesn't complete even single syllable words. "Up" is still "uh" and "ball" is still "ba". He doesn't make any "o" sounds. "Uh oh" is "uh uh". He is missing some other vowel sounds as well. He's not putting any words together into sentences. He has quite a few consonant sounds. He's not very good at blowing - he doesn't make raspberry noises or blow bubbles. We got him a recorder and he can blow into that but it has taken a fair bit of practice. He hasn't gotten the hang of the harmonica yet. I think the doctor is a bit too laid back and not taking our concerns seriously.

I've been trying to find a good balance between foods that are difficult to chew (steak) and foods that are easy (scrambled eggs) since he needs the chewing experience as well as the calories. I've started using cream and butter when cooking for him, especially in the eggs as well as pancakes. He seems to like those foods reasonably well. We used to make him smoothies consisting of milk, banana, avocado and peanut butter and he liked them quite a bit. Like anything else though he gets turned off from them if he gets them too often, so I can definitely use some other ideas too. I am sure that his language development and eating difficulties are related. It may be a result of lack of muscle development or something more serious but he is making improvements so hopefully it is just muscle development! He definitely has a negative association with food. I'm not sure how long it will take for him to build a more positive association but can imagine it could take a while.

Thanks ladies, I'm looking forward to what you have to say!

[Chicane]

Hmmm...I have some thoughts...bear with me...first though, this is just me thinking aloud and the best person to take advice from is your own intuition. So, take these thoughts in, process, mull, discuss and then in the end do what feels right.

Today I gave him a snack right after lunch and he ate quite a bit - probably 15 cashews, a handful of raisins and some Cheerio-like cereal, along with an extra cup of milk.

Could this be a texture thing? Does he generally prefer crunchy textures and sweet morsels (raisins, cheerios etc)? Also this sounds like quite a big snack...perhaps try decreasing the amounts given at snack time?

I was surprised when we pointed out to his doctor that he dropped from the 50th to 15th percentile that he wasn't concerned. He just said that toddlers are picky eaters and that it is normal for them to drop down at this age and that he would likely continue to follow the 15th. He looked at my son and said he didn't appear "wasted" and generally appeared healthy so wasn't concerned.

I tend to agree with this. How long has the disinterest in food been going on for? Since he started solids or is it a newish thing? If general health is good, bowel movements and pee is frequent and healthy then weight gain is not always the best indication of a problem.

HOWEVER

I think the doctor is a bit too laid back and not taking our concerns seriously.

This does concern me. Because in my experience parents are more likely to know intuitively that something is not right and if a patient feels that their legitimate concerns are marginalised by their medical provider then they need to find a new doctor. You have good reason to be concerned about your son and you have the right to feel like you are being taken seriously. I would seriously consider seeking a second opinion from a doctor you feel comfortable with.

I am not sure about the speech stuff but my gut (remember though, I don't know your son) is telling me that he's okay. He's still on track and he might be a little behind but he's still on the spectrum. BUT your intuition seems to be telling you that the food and speech thing is related and i think because of that its worth investigating. Have you taken him to a dentist to get his teeth and bite looked at?

and one more question what would happen if you cut out one of the snacks? My DS is 20 months and he has 3 meals and only two snacks...what do you think?

Interested to hear what Anne has to say too

big hugs to you
x

[We Three]

Is there any sort of early intervention program where you live? I think that maybe it would be a ood idea to have him evaluated...because what I think is that the eating issue and the speech issue may very well be connected. Now I have a bit of personal experience here, so that might be clouding my judgement...but to me it seems like maybe he could have some oral motor issues and maybe some sensory issues happening.  Just a gut feeling, nothing more. 
 Like Chicane mentioned, I am curious to know if he seems to have a preference to crunchy things? Dry things?  Also, my dd din't have snack between brekkie and lunch at that age...just a late afternoon snack. I think that maybe see what happens if you skip snack...will he then be more interested in lunch or dinner? I might skip snack and see.

 At that age, they need like around 1000 calories (rough number of course)...is he drinking full fat milk and yogurt, still? How involved is he in deciding what he would like to eat? Have you tried letting him dip things...i.e....apple slices in peanut butter, raw carrots in ranch dressing, pancakes in syrup....just to give him some control, some sensory experince, and to let him relax and have fun with his food. 

 I think a qualified speech therapist could give you some insight here...and that is the road I would be looking at right now if this were me.  Oral motor issues are fixable with the right therapies....and the therapies are fun! Here in NY, they are done in your home for free! But the fact is, (and this is important) that an issue can *begin* for one reason, but *continue* for another.  So while this may have been born out of a tummy issue, or a sensory issue, it may continue for other reasons...pressure, power, any number of things. Yk?

[Chicane]

Yes, I do tend to agree with Anne - I strongly feel you should see another doctor and become a bit insistent on being referred to a specialist (8 months till the next appointment it too long in my opinion and its round about now that I would become pushy but in a polite and very insistent way)

As well as getting hit teeth and bite checked I would also get his hearing tested. There was another thread recently with a LO with slow speech development and the parents finally got his hearing tested and realised there was an issue there...but once again, a good doctor that you trust would check these things as matter of course I would think.

Anne - the early intervention system in NY is AMAZING, I have never seen anything else like it and it was such a surprise considering the general state of health care (my BFF lives in NYC)

Please keep us posted on how things go and if I come up with any other ideas I will let you know

big hugs

xo

[mini_egg282]

Yes, there is an early intervention program here. They put on screening clinics around the city and then refer you to the children's hospital for a full evaluation. That is what takes 8 months to get into We have contacted a private speech therapist and will be meeting with her soon to start. And yes, he does seem to prefer crunchy foods. We're making some good progress with different types of foods but the initial acceptance is a challenge and then it takes so long to chew! With practice he seems to be improving. To get him calories we are feeding him high fat yogurt (10%) every morning and he drinks 2% milk instead of whole milk just because he has lactose free milk which doesn't come any higher than 2%. I've tried offering dips but he will dip just to dip and once something has the dip on it he won't touch it anymore! He will eat peanut butter and crackers but not if he has to touch them and definitely not if he has dipped it himself. He doesn't seem to like getting his hands dirty. I've tried hummus but he actually gags at the taste of it. Cream cheese is a no go. Regular cheese strings are slowly gaining acceptance with him

I agree - I think it is time that we find him another doctor. A new family doctor is opening a clinic here soon and I was able to get in. It sounds like she'll be great with children so I'll likely try to switch everyone over in the next few months. A hearing test and getting his teeth and bite checked are great ideas. I assume the hospital will do the hearing test (eventually) but maybe we can arrange to get one sooner.

Thank you so much for your insights. I think we will keep doing what we're doing for now, as long as mealtimes don't result in anger or negative feelings. I think we can keep the pressure on and keep telling him to take bites and chew as long as he doesn't become upset by it and we continue with a lot of positive reinforcement. My youngest learned how to clap really early because we are always clapping so much at mealtimes We'll also look into a dental checkup and hearing test. I am so happy I had this forum to find some help! Thanks for taking the time!

[Chicane]

That sounds like a good plan to me...let us know how you get on