Homemade formula????? - Mothering Forums
 
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#1 of 9 Old 01-17-2008, 11:08 PM - Thread Starter
 
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I have not posted a bunch here, but need some advice/ideas from you wise people. A bit of background. . .Reese is almost 2 with significant developmental delays (global skills at about 3 month level) due to a mitochondrial disease. He has feeding issues--he can suck and he can swallow, but not both at the same time. He has no g-tube and refuses a bottle. He his fed by syringe and has no trouble with that. We have dabbled in solids here and there, but he is on the ketogenic diet and solids on the ketogenic diet that he would eat are too oily for him, except avocado which we have tried on and off. He is currently on a blenderized formula of baby food, cream and microlipid. He takes a multivitamin mixed in his formula, so he is getting all his nutrients.

We are probably going to transition off the ketogenic diet and I am at a loss for what to feed Reese. We can just make his formula, but not measure it, which I think we'll have to do at first (he's had some difficulty with transitioning to new foods, so I think we'll have to go slow). I'd like to make a blenderized formula that is more nutritionally round than what he is taking now. I'd like to not do pediasure because I don't think he'll like it because he doesn't like sweet and if I can make my own then I know exactly what is going into his little body.

Any ideas?

Nena, Wife to S since 1995, mom to G (my wonderkid) since 2000 and R since 2006 (my snuggley boy who was diagnosed with mitochondrial disease in 2007)
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#2 of 9 Old 01-17-2008, 11:17 PM
 
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Many people make home-made formula! I did for my dd for awhile until she showed multiple food allergies. I know several kids who do great on blenderized vs. commercial formula.

This website has a recipe on page 13 and lots of useful info throughout.
http://www.kidswithtubes.org/index_f...sNutrition.PDF

Here's a link to my dd's site with my own experiences on it
http://www.reflux.darshani.com/

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#3 of 9 Old 01-17-2008, 11:43 PM
 
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oooo, good links darshani!!! We are on a blended diet, but Linden is tube fed, so I don't have to worry about taste. I would think that it would just be a lot of playing around with it and disguising things he doesn't like in strong sweet flavors like banana. I have no experience with flavor though.
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#4 of 9 Old 01-18-2008, 12:16 AM
 
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You can blend anything with a really good blender. Those links are good ones.

I used to make a drink with Andrew that was basically all his calories as he wouldn't eat. It was carrot juice and rice for carbs, usually chicken breast for protein, and avocado and coconut oil for fat (back when we didn't know he had mito; fat is now restricted to 20% of calories and fat we do use is primarily MCT oil as much as possible). He also had vitamins and minerals. So I definitely think you can make a drink you can use. I assume you don't want/he doesn't need a g tube? Is it hard for him to drink?

Do you feel like you're getting good mito care? I've run into people in the mito clinic whose kids mito was discovered because they went downhill on the ketogenic diet. And Andrew, too, had a rotten time when his diet was extremely high fat. But I know all mito kids are different. Is he on the mito protocol supplement and meds wise?

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#5 of 9 Old 01-18-2008, 01:11 AM - Thread Starter
 
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Thanks ladies. When we were trying to transition to the modified Atkins, I tried blending meat in our blender and it did not blend very well. It made his formula a little bit chunky and he would gag leading to puking. Also, it didn't come out of the syringe very well. Any blenders that anyone would recommend????

We put Reese on the keto diet about a year ago for seizures because drugs weren't working before we found out about the mito (April 2007). He was doing really badly for a while (merely existing) and then once we got some weight on him, he became much more stable. We are very happy with our mito team. Our neuro specializes in epilepsy because that's what Reese started out with (infantile spasms to be exact). When seizures/development didn't really improve, he ordered a muscle bx and the rest is history. Reese is on a lot of mito cocktail supplements. He is the most stable and happiest he has EVER been, so I am nervous to change anything, even his diet. We've avoided the hospital for illness for a year. He does not have a g-tube because we have chosen not to have one. It has been brought up several times by several docs. We did just go to Cleveland a month ago to see a mito doc there, but our neuro is awesome, so that was just a consult. The seizures are still our biggest battle, but I think we have them as controlled as we can.

Nena, Wife to S since 1995, mom to G (my wonderkid) since 2000 and R since 2006 (my snuggley boy who was diagnosed with mitochondrial disease in 2007)
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#6 of 9 Old 01-18-2008, 02:50 AM
 
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have you tried adding babyfood meats to the formula/smoothies?

we have an awesome blender that we got from overstock.com for $50 (it is a food service grade $400 blender).

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#7 of 9 Old 01-18-2008, 10:28 AM
 
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The meat thing. You've got to work with the amount of liquid and amount of solids. Once you figure it out you just use the same measurements and it is easy but the figuring out can take a while. You can use something other than meat too to add more solid if you need it. But the proportion is what you're looking for and of course that would vary given how much you're using and also what you're using to blend it.

We did/do meat actually in a Signature Classics Walgreens food processor. A pretty cheap processor that works really well for this (but is messy; I use parchment paper).
We have a Kitchen Aid Proline blender. We've used it for meat but need more solids than we do for the processor. So in general a good food processor might be best.

Low fat meats are much easier (hence the chicken breast here). Grissle and meat fat don't blend well here.

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#8 of 9 Old 01-18-2008, 11:08 AM
 
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Ok, so I'm showering (thank you hubby) and thinking about what you might use instead of meat. And I did want to mention that sometimes you'll see protein powders recommended and in my opinion with a mito kid especially that is potentially bad. All protein powders have free glutamic acid. Since MSG can make mito worse and glutamic acid is in protein diet wise anyway I'm steering clear of it with Andrew.

But anyway I'm thinking and realize your son can do dairy, right? If so that is the protein source I'd use. Yogurt or plain old milk (low fat or regular depending on your fat numbers/need) would be much easier than meat to deal with. And as USAmma proves you can do it without animal stuff at all...

I hope you figure out something that works and also that he stays as stable as he is now as you change things. I know change here is always scary.

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#9 of 9 Old 01-18-2008, 11:35 AM - Thread Starter
 
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You are all amazing! Right now we do add babyfood meats to his blenderized formula, but they are so gross and taste nothing like the real thing (yes, I have tasted it). In order to transition him to food that we eat, the plan is to eventually get him on to pureed solids, I want to make his formula as close to "real food" as possible. If I need to I will use baby food meat.

I'll have to play around with it when we transition over. I have a few weeks to figure out and experiment. We'll see what I come up with. Thanks for all your help!

Nena, Wife to S since 1995, mom to G (my wonderkid) since 2000 and R since 2006 (my snuggley boy who was diagnosed with mitochondrial disease in 2007)
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