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What is a nutritionist going to say...?


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That has not already been said by the GI, dietician, allergist, or numerous other drs?!

 

Pediasure is crap. Pediasure is a bandaid. Pediasure will keep him from losing weight and withering away while i figure out what to do!

 

Dr insists i call nutritionist. Nutritionist is not going to fix ds. Nutritionist will say he needs to eat. Well, DUH!!! Come feed him food with protein every 2 hours for a month and tell me what i am doing wrong. Can't get the protein in him? Fine, deal with the meltdowns, and survive it with some bit of sanity intact. If you can do it, i will not resort to pediasure, elemental formulas, and neocate nutra cereal. If you can't do it, give me the :banghead: :banghead: :cursing: :cursing: Pediasure.

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They are going to tell you to add oil, mayo, cheese, cream, etc to everything he eats. Add powdered milk or Carnation Instant Breakfast to every glass of milk he drinks. They will tell you to feed him all of the ice cream he can eat. They give you recipes for high calorie milk shakes. They might give you some high calorie mix like scandishake. I don't deal with meltdowns or food aversions, just skinny kids. They might be able to give you some more ideas about what to do for a kid with meltdowns and aversions.

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When I was dealing with dd and failure to thrive, the nutritionist was actually one of the most sane people I worked with. She was a specialist in a Children's Hospital though and accustomed to working with many families with unusual eating and feeding situations. Once I was sent to a general nutritionist at the local hospital and she was at a loss on how to help me. Kind, didn't make me feel like an idiot, and sincerely wanting to help, but useless. For that reason I suggest you find one that specializes in children and go to that type only.

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They might be able to give you some more ideas about what to do for a kid with meltdowns and aversions.

 

Maybe, but our didn't. They wanted to tell me things like using whole milk instead of skim (my kids have never had skim milk anyway, but thanks), putting calorie dense things in baked goods - Lady, if he ATE the baked goods that would work. I really wanted to say "Thanks, but I've read a ton of books, I have access to Google, and a brain." Nothing she said was anything I hadn't thought of or tried. I'm not saying don't go, but I wouldn't expect earth shattering revelations, particularly when you've been to all the other doctors and have dealt with this for years yourself. I'm a bit sick of drs, though, so I may be biased.

 

Edited to ask: Are you being referred by this new doctor, before she will consider writing him prescriptions for what he needs? Can she not see that this is an emergency situation and try to get in contact with your old doctor? Can YOU call your old doctor and ask them to get in contact with her, given the circumstances? If the answer to both those is NO, then I really think you may need to look for a new doctor. If these things were put in place by an old doctor, and it has already been predetermined that he has issues, she needs to be keeping him afloat NOW while considering other possibilities. IMO, she is being irresponsible by not trying to find out what the previous doctor has to say about this and by not continuing a treatment that is already put in place. I get the whole "physician repsonibility" thing, and I'm not faulting her specifically, but people can get in very bad shape when they have to start at ground zero everytime they have to go to a new doctor. That really needs to be revised.

Edited by Ghee
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He will have a feeding psychologist, dietician, speech therapist, and occupational therapist all specializing in kids with feeding problems soon. Its the time from today until we get in thats a problem. And once we do get in, its only a single appointment. The feeding clinic is 3 hours away so theyre going to help make a plan for his local speech and occupational therapists.

 

Mrs Mungo- i wish he would eat enough for me to add to! He will not even eat a hot dog or pb&j right now. :(

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I did leave a message with her, but the ped presented it as a miracle phone call. I've already talked to this nutritionist when the ped didnt think dd's diet was complete, even after getting lab work!

 

I am just so frustrated with this whole situation. Ds refusing to eat, screaming fits because he's starving but refusing to eat while yelling, which of course makes the entire day a wash. Dealing with the dr on top of ds just doubles all of my frustrations.

 

His new begavior therapist starts today and it is not a good day. If she tries to tell me to "put your foot down" and make him eat, or put him in timeout for cursing, im telling her to leave.

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You also have to realize that doctors and insurance companies use a lot of flow-chart solutions. Kid not gaining? The flow might be: step one: nutritionist, step two: meds, step three: feeding tube. The doctor has to offer the path of least intervention first.

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Has he already been accepted into the new program? Is someone from it able to provide pediasure?

Dumb question here- Is pediasure not available at the grocery store? I thought OTC. (not that it's medicine!)

 

 

They will be able to help, but only after he's seen.

 

Pediasure is very available, at $10.79 for 6 of them x 5-6 packs per week, which is way out of budget. He only gets $112 per month in disability, so that will not even cover it.

 

A wonderful hive member sent us some elecare, but he will not take that more than once per day, and only 4oz at a time.

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I have a very high IQ and great google-Fu. I still found the nutritionist at least somewhat helpful. She was a pediatric specialist. She gave me free high-calorie supplements, so that was nice.

 

I hope I didn't come across as sounding like I thought you weren't smart. Only that *my* experience with a nutritionist was like talking to a Weight Watchers consultant. She acted like I hadn't a clue, and that clearly if my son was too small for his age I was giving him skim milk or something. It was insulting. She didn't offer me any supplements to try or even give me ideas for ones we hadn't tried but might look into. Again, that's just *my* experience, and I only shared it because I understand the OP's frustration based on my own experience. I'm sorry if it sounded like I was running down your opinion/advice!

 

You also have to realize that doctors and insurance companies use a lot of flow-chart solutions. Kid not gaining? The flow might be: step one: nutritionist, step two: meds, step three: feeding tube. The doctor has to offer the path of least intervention first.

 

Yes, but my point is that it is grossly unfair to the child. This child has already presumably done step 1 and step 2 with another doctor. He had to change doctors. You shouldn't have to do step 1 and 2 again, your records should indicate it was tried and step 3 should be embarked upon. I know not ALL drs are like that, my new OB/GYN voted a hysterectomy for me on my first visit to him, based on everything I'd tried through the years. I'd done BC, SHOTS, etc. I wasn't having more kids, so there was no benefit to trying them again.

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I understand. My one and only experience with a dietacian specialized in diabetic adults. WTH did they send my 8 year old there, I'll never understand. She tried to put him on a diet for diabetics, low carb, low fat, low to no sugar... when he's SEVERLY underweight???? (he was not diabetic, but does have occasional LOW blood sugars due to diet and health issues)

 

Are you freaking kidding me?

 

I walked out and refused to go back.

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Yes, but my point is that it is grossly unfair to the child. This child has already presumably done step 1 and step 2 with another doctor. He had to change doctors. You shouldn't have to do step 1 and 2 again, your records should indicate it was tried and step 3 should be embarked upon. I know not ALL drs are like that, my new OB/GYN voted a hysterectomy for me on my first visit to him, based on everything I'd tried through the years. I'd done BC, SHOTS, etc. I wasn't having more kids, so there was no benefit to trying them again.

 

I agree. But, when it comes to kids? They are not going to take any chances. You should see the tests my son goes through every time we move. It is annoying and frustrating and all of that. But, I think the doctors often have their hands tied and cannot skip steps with kids.

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Our doctor would write prescriptions for pediasure and we would fill them at the local health department. It came in cases of 24 cans. I could only get vanilla thru the health department. A local family I know that has children with cystic fibrosis would get a medical prescription and found a local company that would deliver it (they also provided baby formulas and such). From that company they could get it in a variety of flavors, a case at a time, 24 cans to a case.

 

Even buying it out of pocket, the cases were cheaper than the grocery store by a great deal.

 

You might ask on local freecycle boards or the like if anyone has any leftover cases available. When we stopped using the pediasure I gave my extras away or sold them for nearly nothing to families I knew needed them.

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I agree. But, when it comes to kids? They are not going to take any chances. You should see the tests my son goes through every time we move. It is annoying and frustrating and all of that. But, I think the doctors often have their hands tied and cannot skip steps with kids.

 

Well, I'm sure that they grow so fast that it could, conceivably, change things for treatment. I guess, to me, though, it just seems that the first priority would be getting whatever this kid is known to willingly consume into them and then back up and punt on ideas. A kid who isn't on a petty hunger strike simply doesn't have the reserves to draw from and could end up in a very bad way. Not to mention damaging them developmentally. But I do see your point, it's just too bad that it always leaves the parent and child in a "do the best you can" spot. If the doctor were saying I'll write you enough for a month, and I'm scheduling you with this nutrionist for X day to give you the rest of the month to try her ideas, then we will re-evaluate, then I'd be of a different opinion.

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We were told pediasure also, and he would only gain weight in his belly while on it. He is 7, and he gained weight for the first time in 4 years. He gained 5 pounds in 3 months, I just about fell over. I thought my scale was wrong, so I took him to see his doc. No one has an explanation, but he just started gaining weight. I hope your ds gains soon or at least you get some better answers.

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It's a hoop to jump through. When our ped nutritionist found out about all of DS' allergies I was giving her information. She basically did the math to convert the infant Neocate to a 2 year old's nutritional needs for me. She had to consult with someone else to do that! But- jump through the hoop, get to the next level. :glare:

 

My experience was that even with documented allergies we couldn't get nutritional supplements paid for by our private insurance. DS would have had to be totally dependent on them and we would have had to go through a lot of "proving." This was 10 years ago, but getting help for issues that didn't fit neatly into a category was very HARD.

Edited by MomatHWTK
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Sounds like passing the buck (oh look, this is food related better let the nutritionist prescribe it), but a good dietitian can tell you what prescription supplements are available and which might work best for your situation.

 

I would first ask the doctor if the nutritionist is experienced in your issues (behavioral/sensory/physical/etc.). It doesn't mean much if they're just familiar with diabetes/heart diets. I love our dietitian but she is very knowledgeable about my son's special diet...and oh-so-busy because of that.

 

I hope the therapist went well.

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*gently*

 

You're angry and ready to attack w/out even having talked to the nutritionist.

 

You're dismissing it before you've even had the appt. Talk to the nutritionist, be clear about the difficulties you're experiencing, (cause who knows how much info the Dr gave) and take it from there.

 

She/he may have considerable experience in dealing w/this situation, and have ideas that you haven't explored.

 

I'm not saying any profession is perfect, but why be so angry when you haven't even met w/this person? Why assume that they are going to be of no assistance?

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I hope I didn't come across as sounding like I thought you weren't smart. Only that *my* experience with a nutritionist was like talking to a Weight Watchers consultant. She acted like I hadn't a clue, and that clearly if my son was too small for his age I was giving him skim milk or something. It was insulting. She didn't offer me any supplements to try or even give me ideas for ones we hadn't tried but might look into. Again, that's just *my* experience, and I only shared it because I understand the OP's frustration based on my own experience. I'm sorry if it sounded like I was running down your opinion/advice!

 

We've got food allergies here including dairy. My son was dropping on the growth chart, so our ped referred us to a dietician. She was absolutely useless. She seemed stuck at the no dairy. We tried a couple of things but when we saw her a second time a month later, she asked if he could have milk now. :glare:

 

So it'd be nice to get someone who can help, but it may just be a hoop.

I'd go in with an open mind (and we did), but it was a rather frustrating experience here.

 

Good luck to OP.

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I'm glad we saw a nutritionist, but it was basically more of the same. And really, I don't *want* to give my kids milk products or "cheetos weight." It doesn't really matter, he isn't getting that kind of weight either. We have done all the basic endo stuff (thyroid, CF, etc). I may ask for a check regarding growth but he seems reasonable height wise when you consider bioparents, siblings, etc.

 

I will say that at first he wouldn't even do Pediasure and now he's doing that AND asking for food. So that is a start, I guess. He also lost weight and back to monthly weight checks. BLECH.

 

We have an appointment with the Genetics clinic next month. The appointment was ordered last Oct and sent to us last November. There was no way to expedite it, even with an impending adoption (therefore, nice to have the information before for various reasons).

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When you get in with the feeding clinic three hours away, see if your local OT, or behavior specialist, etc. can attend with you.

I have attended specialist appointments several times and it was helpful to me as a professional and great for the kiddos/families I was serving. I sold it to my boss as 'free professional development' that will probably help me help someone else someday.

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I don't know if this would work, but I know a mom with a special needs child who made this sine pediasure was so expensive and she couldn't get her insurance to pay for it. I don't have her exact recipe so I looked this up online and I'm assuming the costs are similar to hers along with the nutritional count though I can't be certain of that.

 

She kept empty cans, thoroughly washed out, and would add her homemade to the can because her daughter would only drink it if she recognized the can.

 

Homemade High-Calorie Pediatric Shake

 

12 oz. vanilla ice cream (abt. 2 fat scoops with a regular 1/2 cup disher)

1-1/4 c. apple juice

1 c. frozen fruit

2 scoops whey protein powder, vanilla

2 mL Poly-vi-Sol with Iron

1 small or 1/2 large banana (OR 1/2 avocado)

Blend all ingredients well and serve. Store any remainder in the refrigerator. Makes about 4 8-oz servings; keep in mind that I’m making shakes for two children, so I’m using enough Poly-vi-Sol for two kids. If you’re planning to feed just one kiddo with this, you might either cut the whole recipe in half, or just cut the vitamins. You could also add chocolate syrup or other flavorings for variety/calories (though it’s got plenty of those–keep reading!)

Nutrition info: Per 8 oz serving – 256 cal, 6.3 g fat, 35.4 g carbs, 14.6 g protein. That’s 32 cal/ounce! Also, vitamins A, C, D, E, B6, thiamin, riboflavin, niacin, and iron. Now my favorite part:

Total Cost:

Ice cream: 1.50/half gallon

Fruit: 2.99/pound

Frozen juice: 1.79/16 oz

Protein powder: 32.98/5 pounds (and you can get it cheaper)

Poly-vi-Sol: 8.99/50 mL

Bananas: what? About 29 cents/pound?

1 batch shakes: $3.48

1 8-oz serving: 87 cents

 

I think that a general nutritionist may not be of help. The one that we were referred to for ds (low blood sugar, no weight gain, but not diabetic...family inherited trait of metabolic disorder that isn't very easily labeled and so he's 5'6" tall and 82 lbs.) was not of any assistance though I didn't blame her because she just wasn't an expert in this kind of issue. However, once we got in with the right pediatric endo, his referral to a nutritional specialist was very worth it...that woman, she seriously new her stuff, worked with a lot of kids, and had seen it all! So, this kind of expertise does exist it just isn't easy to find, sorry to say.

 

:grouphug: Faith

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I liked our nutritionist... but she worked out of a pediatric GI clinic. The only patients she saw all day were kids who had GI issues and weight/feeding problems. She was an expert, and at least moderately helpful.

 

DD didn't have serious eating problems, though she was falling through the percentiles at alarming rates and refusing to eat any food. She would lose weight every time I tried to cut back on nursing (which was everyone's recommendation except the nutritionist - she wanted to be sure DD had a steady supply of nutrients). Luckily for me, DD was a great nurser. She also outgrew most of her issues.

 

I imagine a run-of-the-mill general nutritionist might not have a clue, but a good specialist nutritionist might actually be helpful.

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Thank you everyone. Imp, dont worry, you will not see any news stories about a woman going nuts on local nutritionist! Lol.

 

When i saw the dr today, i told her (again) that ds had a gastro in ny, and we met with their great dietician a few times. When ds eats, he eats well. When he does not eat, he really does not eat and will lose weight. Unfortunately (from medical side) he takes the pediasure (or soy when dairy was out) and never drops too low. His weight is awesome and height is even better.

 

The prior 3 times he quit eating, or ate crazy limited, pediasure gets him through whatever the problem is and a few months later he's eating well with no supplements. In ny, i could never get him into the feeding clinic because he's not failure to thrive.

 

His insurance covers pediasure, pediasmart, many elementals, all without problems. It's just the lack of a script.

 

I went back and forth with the dr today and she does not think pediasure should be used as main nutrition. While thats fine, she will not comprehend just how little ds is eating otherwise. The current script is for 2 a day. Thats 480 calories per day for an active 7 year old boy.

 

For today's food, if you take out the 2 pediasures, small cup elecare, baby puree with nutra cereal (IOW subtract all the supplements), he has eaten 1 plain blueberry bagel, and 1 small bite of chicken with dinner. By wednesday i will be out of neocate nutra, but he will still only eat the baby fruit, so that will give him about 100 calories and no protein. I will try the greek yogurt again once we're out of nutra (he started refusing his yogurt).

 

With the supplements, protein was not great, but he had enough.

 

If i let him lose weight, it is neglect. But if he does not lose anything, his dr will continue to poo-poo any temporary supplement i come up with.

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They will be able to help, but only after he's seen.

 

Pediasure is very available, at $10.79 for 6 of them x 5-6 packs per week, which is way out of budget. He only gets $112 per month in disability, so that will not even cover it.

 

A wonderful hive member sent us some elecare, but he will not take that more than once per day, and only 4oz at a time.

 

Have you tried calling Abbott Labs - the makers of Pediasure? My mother used to work for them and was able to get the cases of Pediasure through the company for quite a bit less. You may be able to buy it this way until you are (hopefully) able to get a script to have it covered.

 

My son is an extremely picky eater with sensory issues so he has Pediasure every day. It definitely gets expensive.

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I may have missed this part, but why are you asking a pediatrician and not a gastro? Pediatricians are limited as to what they can do (no slam on pediatricians, but they have limits as with any profession). When my oldest daughter was younger, she decided to just quit eating. She would eat for a few weeks and then stop eating and live on rice cakes and pediasure. We saw a gastro who monitored her weight and made sure her nutrition level was adequate.

 

However, even our gastro wasn't overly concerned about her weight, no matter how low it became. He said that he would know when to be concerned (regarding tube feeding, etc).

 

Our pediatrician has been helpful at times when oldest dd didn't want to eat by prescribing medicine that had a side effect of hunger. (It was an antihistamine if I remember correctly).

 

I'm sorry you can't get the pediasure prescription, that sucks. :( On the bright side, I'm guessing your nutritionist will be covered financially? Here, our insurance won't cover it for my celiac kid who isn't even on the growth chart. The nutritionists want $250 up front before scheduling.

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Oops, wanted to also add that scandishake was a lifesaver for us. It tasted good and we could mix as much as we needed for her/them. We currently use carnation instant breakfast with our oldest since she tends to skip breakfast or eat only popcorn, or rice cakes, etc.

 

Are you trying to improve weight gain or eating variety? (and don't forget that SLP's can cross over and also do feeding things).

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When I went to a nutritionist for DD she asked me what I thought of the Pediasure first, then gave me ideas to help our situation (in our case DD has my shortness and DH's thinness & meal skipping habits - Pediasure didn't help - so I got the add butter & peanut butter, full fat, pack in calories, etc.).

 

But I think if I had said the Pediasure was great - she'd have gone with that - she seemed to just trust the parent. So maybe you'll get someone on your side - an advocate! Don't assume the nutritionist will side against you.

 

You also have to realize that doctors and insurance companies use a lot of flow-chart solutions. Kid not gaining? The flow might be: step one: nutritionist, step two: meds, step three: feeding tube. The doctor has to offer the path of least intervention first.

 

:iagree: This is exactly what they did with my husband's back injury. It was so frustrating. And nothing changed their mind - the bureaucracy is impossible to deal with.

 

In my state (Montana) I could buy Pediasure with food stamps / EBT. I just wanted to tell you in case you didn't know & it could help you.

 

The Pediasure recipe looks great - I'll save it to my computer in case it's ever needed.

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:grouphug: Funny because every time I see one of those I'm told to give my son pediasure and the like! I know how frustrating it is. I've got a kiddo who struggles to stay on the growth scale. Genetics sends in the dietician to go over what he eats every single time. I have to restrain myself from wanting to throw in that he has a twin who eats and gains like a normal child. Anyway, I hate the pressure and I feel for you. I hope this appointment turns out to be actually helpful in some way.

Edited by sbgrace
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JFWIW, it took over a year for Pediasure to really work (as in helping ds get to the point he'd eat if he didn't have it so much). We had a major breakthrough at about 8 months when he finally started asking for food (and he still got 3-4 per day) but then Dr. took him down to 2 pediasure just this past visit (15mo) and now he's asking for food, eating well most meals, etc. So for people saying "it didn't work," It may have been a timing thing (don't want them to skip meals because they had it) or just needing more time.

 

Typical growth for a 2-9yr old is 4-5 pounds per year. If you get an extra pound, yay!

 

BTW, I can totally understand why people would not want to rely on Pediasure. Until my hysterectomy this past Spring, I thought I was going to hurl each time I smelled it. And on top of that, the sugar and such is not particularly healthy. UGH. But kid likes it and will drink it and he gained a little weight despite months of behavioral puking.

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Your ped seems out of her depth on this issue. Our ped is really great in a number of issues, but when my ^dd^ developed dysphagia because of her brain tumor she really didn't understand what was going on and what interventions needed to happen (meeting with an OT, a SLP, a nutritionist, a gastro to discuss whether to tube or not, etc.).

 

If you are scheduling the feeding clinic appointment, I would call and get that scheduled.

 

If your ped is scheduling it, I would call back asking them to make that appointment today and reminding them that you are out of your Rxs for pediasure, etc. Ask her to fill them now until the feeding clinic appointment and then you can all re-evaluate.

 

When you go to the feeding clinic, have them copy back their reports to the ped.

 

In the meantime, I'd keep a food log and I'd document all of the carp that your ped has been telling you.

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I have read your posts about your boy, and I really wonder if this is his control. I read that you locked up the toys and took all of the clothes away. I'm not judging that or saying it is not warranted, just another perspective. Have you told his therapists about it? They may have something to say about it. I have not seen anyone mention it, but he may not know that what he is doing is controlling the one aspect of his life that he can. I am not an expert, but it just seems to make sense.

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All therapists know and approve. He is fine with it.

 

It could be control, but this is the 4th food refusal cycle since he was little. This time started way before the clothes/toys were taken.

 

His ot thinks its mostly lack of oral motor skills. He wasnt able to nurse well so i just went to formula. He transitioned well to baby food, but continued to eat baby cereal with fruit until he was 5 (breakfast). Then he went to yogurts and seemed fine, and ate almost everything.

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  • 4 weeks later...

UPDATE:

We have not yet met with the nutritionists, but I did talk to one of them. She is shocked and annoyed that ds's Dr refused to prescribe at least 900 calories of a supplement!

 

She looked up and compared pediasmart to the other options, and said it looks very good. We're going to meet with them in a few weeks (both nutritionists will work with us) and find some supplements and they will *tell* his Dr how much to prescribe!!!

 

He will likely take pediasmart and the neocate cereal type stuff.

 

He has not been enough well, but a little more. He tried 5 things one night when we had chinese, and liked them all, but didn't have more than a bite each. He does not like the quinoa baby cereal or quinoa at all. He's mostly eating baby cereal (I use all of them to show him that he really doesn't care when it's a little different) with fruits. He'll eat hotdogs :ack2: (gross because he only likes the cheap ones from walmart), some macaroni (Anne's brand), and right now he has 2 a day pediasure.

 

The feeding clinic is getting our paperwork together, but it is still just an evaluation to find out why he doesn't eat. He will not be going to feeding therapy there because it's 3 hours away. We will work with the local therapists.

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