Desperately need help with 3 year old who drinks only formula and pediasure. Any good therapists?

[Anonymous]

A friend whose child has a feeding tube (because of refusal to eat) had good success at UVA's feed clinic https://childrens.uvahealth.com/services/pediatric-therapy-services/encouragement-feeding-program . Of course, I don't have personal experience with it but it IS closer than Denver! He still has his feeding tube but he is eating now but because he has other severe disabilities, they use it to provide medicines he can't/won't take by mouth. It also comes in handy when he's ill and needs additional fluids. Good luck!

[Anonymous]

Anonymous wrote:Is pediasure better than whole milk with carnation instant breakfast mixed in? Our ped said they are the same and to go with the carnation. This is pretty much the only food intake DC has all day, but will take 24-32oz over the course of the day (has to drink it from a bottle or won't drink it at all).

Why not do both? You'd have to look at the nutritional value. The carnation is a good way to transition to milk, if your child will drink it. Mine would not drink it. Pediasure is fine 1-2 times a day from when I called them. My kid liked the toddler formula and it was much cheaper than pediasure so we stuck with that till he started to eat more and he finally decided to drink milk. He went many days at 2-3 where he drank that much formula. We did a sippy over the bottle but it had a soft tip so it was easier to drink. I would not transition off of any of them till your child is eating 3 meals a day and snacks regardless of what you give or the pressure from others not to.

[Anonymous]

I know it has been awhile since I have asked feedback. Thank you all for your feedbacks and recommendations. My wife had come back with analysis for our son. It seems he does not know how to "eat". The therapies around here focused on getting him to eat new food so we can transition him off the formula. But in Denver we learned that even if we give him chocolate cake, he still won't eat because he does not know how. We had seem him try to eat once before by biting down on a food stick, but he gagged as he had no idea what to do and has fear of doing that again.

I think the explanation made more sense so we have switched therapiest that will now guide his oral motor skills. We do visit Denver and planning to visit more, but it's costing us a lot of money. My wife thinks its worth it, but at the same time the amount they charge is about 2.5 times what others charge and does not take insurance. So if anyone else is interested, you have to save a lot of money. I think we are making some progress, wish it was affordable.

[Anonymous]

That sounds tough. Sorry, OP.

[Anonymous]

Have you gotten a differential diagnosis? SPD is not a diagnosis.

[Anonymous]

Anonymous wrote:Thank you all for the reply. Fortunately, with the bottle, we realize he can drink 2x 3x what he would drink from a cup. So we are going to buy a good scale and measure his progress. However, we will still have to treat his SPD. My wife is looking into going to STAR institute in Colorado and I've been looking into yourkidstable.com to figure out what to do. The person who runs that website replied to our comment to try the sensory bins, so we are trying that right now. But our son would only use his finger, not his whole hand. So I am playing find the toy game where I bury it deep enough so he would have to dig deeper.

We've taken our son to the Kriegers for evaluation. It was simply in a room with many "specialists and doctors" who observed him and after costing few grand just for that evaluation, we felt we didn't get anywhere. We had planned to enroll him in their intense therapy sessions, but the therapists and doctor's feedback on Krieger's was negative. In fact, the mother with the similar situation I had mentioned had gone to Kriegers as well, but she was not happy with them (we are trying to get her number from the doctor so we can get more feedback of the both places).

I had thought our situation was desperate, but hearing others with worse situation overcoming their obstacles gives me hope.

Unless KKI refused to help you, I'd at least try them. Some practitioners think their methods are too harsh (is that the problem of your doctor/therapist?), but it sounds like your kid is a relatively extreme case and could really use the help.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Is pediasure better than whole milk with carnation instant breakfast mixed in? Our ped said they are the same and to go with the carnation. This is pretty much the only food intake DC has all day, but will take 24-32oz over the course of the day (has to drink it from a bottle or won't drink it at all).

Why not do both? You'd have to look at the nutritional value. The carnation is a good way to transition to milk, if your child will drink it. Mine would not drink it. Pediasure is fine 1-2 times a day from when I called them. My kid liked the toddler formula and it was much cheaper than pediasure so we stuck with that till he started to eat more and he finally decided to drink milk. He went many days at 2-3 where he drank that much formula. We did a sippy over the bottle but it had a soft tip so it was easier to drink. I would not transition off of any of them till your child is eating 3 meals a day and snacks regardless of what you give or the pressure from others not to.

You keep saying that you called them, but did you call the toddler formula companies and ask them if they're designed to be a source of 100% nutrition? Because my guess is that they'll tell you food is better too.

OP's child is having issues with volume. Pediasure, and other pediatric meal replacement formulas have 1 calorie per mL. Toddler formula has less than that.

Everyone agrees that it's ideal for children to eat food. Neither 100% But when that isn't an option, then Pediasure is a safe alternative that meets all of a child's dietary needs.

[Anonymous]

Michael Lemieux at skill Builders is very good!

[Anonymous]

Wow, hang in there OP..baby steps.

I thought I had it bad when my kid was on gerber until 2 yrs and gagged half the time..mine stopped drinking formula from a bottle (something about the texture) and I was spoon feeding her formula and water (when she had gerber) from 7 mths to 22 months. The OT helped her learn how to use the juice bear and drink from a straw cup and that helped tremendously after 22 months.

At almost 5 yrs now, I'm still struggling every meal and spoon feed her - takes 30 min to an hour every meal..If I let her do it herself, she'll be sitting at the table for 1 hour and have maybe 2 spoonfuls of whatever is served. So I just give in and feed her. Hoping that eventually she'll get there..Its not that she cannot eat now, she just doesn't want to. It may seem bad, but I allow her to watch cartoons while feeding her - its tiring ad exhausting otherwise.

Our paediatrician also recommended Carnation Instant breakfast for her. She is in 5th percentile.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Thank you all for the reply. Fortunately, with the bottle, we realize he can drink 2x 3x what he would drink from a cup. So we are going to buy a good scale and measure his progress. However, we will still have to treat his SPD. My wife is looking into going to STAR institute in Colorado and I've been looking into yourkidstable.com to figure out what to do. The person who runs that website replied to our comment to try the sensory bins, so we are trying that right now. But our son would only use his finger, not his whole hand. So I am playing find the toy game where I bury it deep enough so he would have to dig deeper.

We've taken our son to the Kriegers for evaluation. It was simply in a room with many "specialists and doctors" who observed him and after costing few grand just for that evaluation, we felt we didn't get anywhere. We had planned to enroll him in their intense therapy sessions, but the therapists and doctor's feedback on Krieger's was negative. In fact, the mother with the similar situation I had mentioned had gone to Kriegers as well, but she was not happy with them (we are trying to get her number from the doctor so we can get more feedback of the both places).

I had thought our situation was desperate, but hearing others with worse situation overcoming their obstacles gives me hope.

Unless KKI refused to help you, I'd at least try them. Some practitioners think their methods are too harsh (is that the problem of your doctor/therapist?), but it sounds like your kid is a relatively extreme case and could really use the help.

+1 I heard a lot of negative things about KKI before taking my son - what I experienced was nothing like what others had described - they used a lot of positive reinforcement. It got tough sometimes when he refused, but changing behavior can be tough. Their program does, however, require parent buy-in & commitment. It can only be as successful as you are willing to follow through at home. We were gradually released from therapy, & the likely reason we were released rather quickly because I used their strategies very consistently once we were home. Otherwise, he would have regressed, & we would have been there longer. 6 years later, & his eating is almost "normal" - the few non-preferred foods/textures that remain are minor and do not interfere with life. No more planning around "what will he eat." I credit KKI fully to leading us there.

[Anonymous]

We had a very positive experience at KKI.

[Anonymous]

KKI is awful I wouldn't let them manage a pet let alone a child.

[Anonymous]

Anonymous wrote:Have you gotten a differential diagnosis? SPD is not a diagnosis.

This. Stick with something local, OP. You don't want to add travel on top of everything else.