Formula only child... Blender question

[GAGirlInVA]

I've debated posting here for a few days.

Our allergist believes that our son has multiple food protein intolerance and has placed our 2.5 year old on an elemental, hypoallergenic formula as his only source of nutrition.

We don't know how long this will be all that he can eat. Our understanding is that once they decide his gut has had a break, we will introduce a single food at a time in multiple food trials while keeping him on the formula for the majority of his nutrition.

According to our allergist, he may never be able to be completely formula free.

I've grieved this quite a bit in the last 5 days and all I can think about is how this will affect everything in his life. Birthday parties, celebrations involving food, snack time at church, dinner parties, vacation, etc.. EVERYTHING is different now.

My husband and I are starting to plan a trip in 2013 to where else, but Disney.

I'm not concerned about the dining plan, or whether he will be charged or whatever. Right now we can't even eat as a family so it is hard for me to imagine being able to eat out with him just drinking formula.

My biggest concern at this point is whether or not they have blenders for us to mix his formula. It is quite clumpy and he won't drink it without it being completely mixed.

I think I remember someone saying that the DVC had blenders..and we could take ours to the hotel or whatever, but what do you do when you are in the park or at a restaurant?? Even if we blend it when we mix it the first time, before he drinks it, it has to be blended again.

Maybe I'm just hyperfocusing on this, because I am seriously wigged out about his MRI tomorrow. (He is also being evaluated for neurofibromatosis..)

I dunno. I guess I want to hear that we can find a new normal. And that this won't be as big of a deal as it feels right now.

 

[digiMom]

Hi. My husband's cousin has a son with numerous food allergies, although it doesn't sound quite as extreme as your case. They've found foods he can eat and typically bring them along themselves. It can be difficult, though.

As to your question, I don't know from personal experience but a hand blender may be an option for you. There are some travel ones I found on amazon. Here's a link on the search I did on http://www.amazon.com/

 

[Cheshire Figment]

As a general rule Quick Service locations do not have blenders.

The full service restaurants do have blenders and they can puree anything that you order. However, due to Health Regulations they are not permitted to bring outside food into the kitchen and do any preparation work on it at all.

As the pp suggested, you may want to get a hand blender. Here is a link to Amazon for Hand Blenders.

Also, note that you can keep the formula refrigerated, if necessary, at First Aid in the Parks.

 

[GAGirlInVA]

Hmm hand blender.

I am seriously so stressed out that it didn't even cross my mind.

Thank you for being gentle with me.

Now we just have to see if he will be okay with others eating in front of him. Right now, not so much.

 

[SueM in MN]

DVC villas, one bedroom and larger, do have blenders. If you are staying at a DVC studio, they would probably not have a problem bring one to you if you request it for medical reasons.
All DVC villas, Deluxe and Moderate resorts have refrigerators.

As was already posted, because of health and safety regulations, restaurants can only blend items that they provide ( no food from outside is allowed into their kitchens).

Also, as was already posted, you would be able to store formula at First Aid. If you bring a blender, they may be able to store that or you too.
You may also find that you can use something other thn a blender. There are products like this bottle with blenderball that people using protein drinks for health/exercise use to mix their powdered products. (if this link doesn't work, go to Amazon.com and do a search for the words bottle with blenderball)
http://www.amazon.com/s/ref=nb_sb_s...+bottle+with+blenderball&sprefix=Blender+bott

 

[wdwnut76]

I've brought my HMR diet shakes with me, and I've found a great hand blender! It' a Proctor Silex. It gets immersed into the liquid, and does a really great job. (I can't stand poorly mixed shakes!) It's smaller than a blender with a container: therefore, more transportable. Another benefit is that it washes clean easily. I think I bought it on Amazon.

(I hope it's okay to mention the brand name on the board...I just want to share something that worked well fo me.)

 

[SueM in MN]

I've brought my HMR diet shakes with me, and I've found a great hand blender! It' a Proctor Silex. It gets immersed into the liquid, and does a really great job. (I can't stand poorly mixed shakes!) It's smaller than a blender with a container: therefore, more transportable. Another benefit is that it washes clean easily. I think I bought it on Amazon.

(I hope it's okay to mention the brand name on the board...I just want to share something that worked well fo me.)

It's OK to mention the brand name as long as you are not selling it.
The brand is important since some may not work as well as others.

 

[aost]

Hi, we have never used a blender in WDW, but one thing that I would be concerned about it possible cross-contamination, so bringing your own blender might be the best option.

Another option is to trial in a pre-mixed formula. Neocate makes an elemental formula called E028 which comes already mixed in what looks like juice boxes. There are different flavors (Orange-pineapple, grape, and something else, which I can't remember right now). The juice boxes would be easy to transport and store, and have no intact proteins, so they are okay for a child on an elemental diet. There are a small number of children who don't do as well on those as a "plain" elemental, so I do recommend that you trial them in separately to be sure your child can tolerate them.

2013 is far enough in the future that you may have enough foods anyway. My son was formula only in early 2008, and when we went to Disney in early 2010, he had enough foods (about 25) that he no longer needed formula. The key to getting off formula for him was getting a protein source and a couple of grains (plus fruits and veggies of course), so you might want to keep that in mind when you start to introduce foods.

Sorry if I'm giving unsolicited advice, but when I see someone going through something similar to what we went through, I can't help but try to help. I know how hard it is in the beginning .

Disney was absolutely fabulous with his food allergies, BTW. We ate at many restaurants--both sit down and quick service. He has multiple life threatening food allergies, plus eosinophilic esophagitis (which is a different form of food allergy that affects the GI tract). We never go out to eat to restaurants locally because no one around here seems to "get it", or they simply are unable to accommodate his lengthy list of allergies. Eating out in Disney was absolutely amazing.

 

[Mrsjvb]

do they still make/sell those tornado mixers? IIRC they were self contained and some are battery operated. if he has progressed beyond bottle feeding stage it's a built in cup too.

 

[GAGirlInVA]

Hi, we have never used a blender in WDW, but one thing that I would be concerned about it possible cross-contamination, so bringing your own blender might be the best option.

Another option is to trial in a pre-mixed formula. Neocate makes an elemental formula called E028 which comes already mixed in what looks like juice boxes. There are different flavors (Orange-pineapple, grape, and something else, which I can't remember right now). The juice boxes would be easy to transport and store, and have no intact proteins, so they are okay for a child on an elemental diet. There are a small number of children who don't do as well on those as a "plain" elemental, so I do recommend that you trial them in separately to be sure your child can tolerate them.

2013 is far enough in the future that you may have enough foods anyway. My son was formula only in early 2008, and when we went to Disney in early 2010, he had enough foods (about 25) that he no longer needed formula. The key to getting off formula for him was getting a protein source and a couple of grains (plus fruits and veggies of course), so you might want to keep that in mind when you start to introduce foods.

Sorry if I'm giving unsolicited advice, but when I see someone going through something similar to what we went through, I can't help but try to help. I know how hard it is in the beginning .

Disney was absolutely fabulous with his food allergies, BTW. We ate at many restaurants--both sit down and quick service. He has multiple life threatening food allergies, plus eosinophilic esophagitis (which is a different form of food allergy that affects the GI tract). We never go out to eat to restaurants locally because no one around here seems to "get it", or they simply are unable to accommodate his lengthy list of allergies. Eating out in Disney was absolutely amazing.

AHA! Someone that has been there and done that!

We got some of the juice box samples but our allergist said that we should only try those if he wouldn't take the chocolate or tropical. Maybe by then we will be able to try them though.

Your post gives me SO much hope. We've been kind of living in survival mode (which is why the hand blender never crossed my mind!)

I'm incredibly excited to think about him being able to eat 25 foods. Another mom I spoke with had a 5 year old that could only have 6 foods. But she was only really eating those 6 to be a social eater. All of her nutrition was still coming from formula.

His MRI came out wonderfully. One thing to follow up on, but no tumors

A huge weight has been lifted with the news of his MRI... HUGE!

Do you mind if I ask what your child can have now?

 

[luvsviola]

What formula is he on?

My foster son has done very well on Elecare, and you don't need a blender for it. We've also done Peptamin Jr, which comes already made in cans you just dump in. It is super easy.

Good luck!

 

[Mickey'snewestfan]

GAGirl,

I don't have experience with elemental formulas as my son's issues were different, but I know how incredibly hard it is to have a young child who isn't allowed to eat and doesn't understand why. My son had a g-tube placed because of aspiration, and went from eating everything by mouth to almost nothing. The first couple weeks were really hard, and I hid almost everything I ate from him because otherwise he'd cry and cry.

However, kids are resilient, and it wasn't long before he figured out that the food just wasn't for him, and went back to being his happy self, only much healthier! I hope you have the same experience and that things get easier.

 

[aost]

It did take some time to sort out my son's food allergies. After about a year of dealing with it and getting almost nowhere, we went to a specialty center at a hospital in Denver to do multiple food challenges--this sort of fast-tracked us on the way to more foods quickly. When we went there, he could only eat broccoli, quinoa, oranges, canola oil , and sugar. While we were there, he added chicken, pork, oat, rice, corn, potato, mushrooms, soy oil and lecithin, and sunflower seeds. Since then he has added numerous fruits and veggies (spinach, tomato, onion, sweet potato, spinach, lettuce, berries, pear, lemon, grape, watermelon, etc.), wheat and fish.

We did work with a registered dietitian who specialized in food allergies as well. He was able to go off formula when he had just 12 foods (he actually just started refusing to drink it), because he was getting enough protein, fat, and carbs from food. She recommended a multivitamin, calcium supplement, and suggested we intro more fruits and veggies asap to round out his diet (which we did). Fruits and veggies are not common triggers for his condition, so we were able to introduce them fairly quickly (we wait 2-3 weeks between food intros).

 

[GAGirlInVA]

What formula is he on?

My foster son has done very well on Elecare, and you don't need a blender for it. We've also done Peptamin Jr, which comes already made in cans you just dump in. It is super easy.

Good luck!

Neocate Junior. Technically a blender isn't required, but he won't drink it if it is clumpy. I stirred the mess out of it and couldn't get it smooth. So DH whizzed it in the blender for a few seconds and now he will drink it.

GAGirl,

I don't have experience with elemental formulas as my son's issues were different, but I know how incredibly hard it is to have a young child who isn't allowed to eat and doesn't understand why. My son had a g-tube placed because of aspiration, and went from eating everything by mouth to almost nothing. The first couple weeks were really hard, and I hid almost everything I ate from him because otherwise he'd cry and cry.

However, kids are resilient, and it wasn't long before he figured out that the food just wasn't for him, and went back to being his happy self, only much healthier! I hope you have the same experience and that things get easier.

Yesterday was the first day he saw someone eating and I think he handled it well! I think he is starting to realize that he is feeling better and his cup is his "food."

It did take some time to sort out my son's food allergies. After about a year of dealing with it and getting almost nowhere, we went to a specialty center at a hospital in Denver to do multiple food challenges--this sort of fast-tracked us on the way to more foods quickly. When we went there, he could only eat broccoli, quinoa, oranges, canola oil , and sugar. While we were there, he added chicken, pork, oat, rice, corn, potato, mushrooms, soy oil and lecithin, and sunflower seeds. Since then he has added numerous fruits and veggies (spinach, tomato, onion, sweet potato, spinach, lettuce, berries, pear, lemon, grape, watermelon, etc.), wheat and fish.

We did work with a registered dietitian who specialized in food allergies as well. He was able to go off formula when he had just 12 foods (he actually just started refusing to drink it), because he was getting enough protein, fat, and carbs from food. She recommended a multivitamin, calcium supplement, and suggested we intro more fruits and veggies asap to round out his diet (which we did). Fruits and veggies are not common triggers for his condition, so we were able to introduce them fairly quickly (we wait 2-3 weeks between food intros).

NEAT! Do you mind sharing which hospital you went to? (You can PM if you are more comfortable sharing that way.)

He was already off of dairy, soy and egg before... I don't know if we will ever get those back in his diet.

 

[aost]

We went to National Jewish Medical Center in Denver. My son went for their Atopic Dermatitis program (he had severe eczema) and EGID program.

Does your son have GI reactions? I assume that he might since you mentioned intolerances. Are you working with a GI as well?

 

[GAGirlInVA]

We went to National Jewish Medical Center in Denver. My son went for their Atopic Dermatitis program (he had severe eczema) and EGID program.

Does your son have GI reactions? I assume that he might since you mentioned intolerances. Are you working with a GI as well?

He does have an GI. We did an endocopy and that came back normal except for a small mass of gastric tissue in his stomach. The GI sent us to the allergist.

Chronic diarrhea (since he was 6 months old) is why were were referred to the GI. Of course, we weren't referred until he started dropping off of the growth chart and his vitamin D level came back pretty low.

I'm very frustrated after speaking with the pharmacy. To have this formula processed through insurance, they first jack the rate up to $120 a CAN. But I can buy it from Nutricia for $35 a can. 19 cans a month!

Sigh...

 

[aost]

Call your insurance company and see if you can get the formula through their Durable medical equipment supplier. I know that formula doesn't *seem* like a durable medical equipment, but that is how most insurance companies process it. We got ours delivered to our door every month by Apria (Cigna's DME supplier). Of course, they charged Cigna a lot more, but we did not have a co-pay, so it didn't matter to me. IIRC, they charged almost $800 for a month's supply (I think it was 11 cans).

I hope that the formula gets your child to baseline soon.

 

[GAGirlInVA]

Call your insurance company and see if you can get the formula through their Durable medical equipment supplier. I know that formula doesn't *seem* like a durable medical equipment, but that is how most insurance companies process it. We got ours delivered to our door every month by Apria (Cigna's DME supplier). Of course, they charged Cigna a lot more, but we did not have a co-pay, so it didn't matter to me. IIRC, they charged almost $800 for a month's supply (I think it was 11 cans).

I hope that the formula gets your child to baseline soon.

Yeah that was through Apria. A racket if you ask me. And we have a huge portion to pay... Sigh.

They are charging our insurance over $2K for something I could buy for $660. It's crazy.

 

[carrie042198]

Hi,If you dont mind me asking what is your childs disorder called? My 17month old has a rare protein disorder called FPIES, food protein induced entrocolitis syndrome. She has 12 safe foods right now. We are going toDisney in May and I am very stressed. Last year when we went she was just on breastmilk so it was easy. Good luck with everything!!

 

[GAGirlInVA]

Hi,If you dont mind me asking what is your childs disorder called? My 17month old has a rare protein disorder called FPIES, food protein induced entrocolitis syndrome. She has 12 safe foods right now. We are going toDisney in May and I am very stressed. Last year when we went she was just on breastmilk so it was easy. Good luck with everything!!

Multiple Food Protein Intolerance.