Survey Results

In the fall of 2008 I started a survey among those with EB or who had children with EB to get an idea of when kids with EB, walked, crawled, and other milestone that all kids experience. I kept adding data as people were willing to share. As of March 2009, apx 75 patients participated in the survey. Here are the results.



The average age for EB as a whole:

Rolled over: 6-7months

Sat unassisted: 7-8 months

Crawled: 11 months

Pulled to a standing position: 13-14 months

Walked: 23-24 months

Got 1st tooth: 8 1/2 months

Began sleeping through the night on a regular bases: 18-19 months

Length of hospital stay after birth: 28.1 days

Received some type of therapy (OT, PT, speech,feeding): 51% of those survey did

Found it to be helpful: of those 51%, 28% found therapy to be helpful

Suffer from reflux: 69% yes; 31% no

Are lactose intolerant: 18% yes; 72% no

Have/had a G-tube: 32% yes; 68% no

Age they received a g-tube: 20.4 months

Issues with constipation: 59% - yes; 41% no

 
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I re-did the survey in 2020 and these were the results: 

EB Development Survey Results:

 

63 total participants

 

42 have EBS

9 have RDEB

9 have DDEB

2 have JEB

1 has an unknown form of EB

 

Reflux:

60% no

40% yes

 

Gtube:

90% no

10% yes

 

Constipation:

46% no

54% yes

 

Received OT, PT or other therapy:

47% no

52% yes

 

Of the 52%

Did you find it beneficial?

57% yes

25% no

19% maybe

 

Lactose Intolerant?

90% no

10% yes

 

Average Age in months for:

 

Sleeping thru the night: 14 months

 

NICU stay after birth: 13 days

 

First Tooth: 8 months

 

First words: 16 months

 

Walking: 20 months

 

Standing up: 15 months

 

Crawling: 11 months

 

Sitting unassisted: 7.4 months

 

Rolled over: 5.5 months

 

I was hoping to break each item down by type of EB, but not everyone answered with their type/subtype, so I wasn't able to get an accurate breakdown. Some of the results did surprise me though- particularly the reflux one. Perhaps I should have listed it as silent reflux. But no matter, these are interesting none the less. Thank you those who participated

Just like with healthy children, all EB children are different and some will do things sooner or later than the average child with EB. I hope this will give parents are idea of when they might expect their child to reach a certain developmental milestone and not to worry if their child is a little bit behind other kids their age. 

 

©Garrett's House 2021

The Proof it works!!

The proof blended diet works!  

We started blended diet around age 2.  At the time he has been on formula since birth.  At 18 months he weighted 24 pounds (50%)  and was 32" (50%)  tall and his EB was still very severe; about 60% of his body had open wounds.  We had blood work on in the fall of 2012 and here were the results

Vit D 26 (range 30-80)
Creatinine 0.52 (range 0.26-0.42)
Protein 6.4 (range 6.5-8)
Sed Rate 91 (range 0-15)
Iron 38 (range 45-182)
Hemoglobin 9.3 (range 9.4-14.3
Hemaoticrit 28.3 (range 34-40)
Calcium 8.9 (range 8.5-10.5)
Ferritin 25 (range 36-84)
Zinc 54 (range 60-120)
Selenium 80 (range 23-190)

(items in bold are abnormal results) 


My request for yearly blood work went ignored because no lab was willing to draw blood due to his EB.  Finally last month we were able to get a lab to draw some labs.  At age 4 1/2 he is 39 pounds (75%) and 43" (95%) tall.  His skin looks amazing and if he wasn't so rough when he played, we could stop wrapping all together but he still needs the protection!   After 2 1/2 years on blended diet this is the the blood work results.

Vit D 30 (range 30-80)
Creatinine 0.30 (range 0.26-0.42)
Protein 7.5 (range 6.5-8)
Sed Rate 7 (range 0-15)
Iron 42 (range 45-182)
Hemoglobin 11.9 (range 9.4-14.3)
Hemaoticrit 34.3 (range 34-40)
Calcium 9.8 (range 8.5-10.5)
Ferritin 30 (range 36-84)
Zinc 62 (range 60-120)
Selenium 134 (range 23-190)

(items in bold are abnormal results) 

Low Iron and Ferritin are pretty normal in EB.  It may also be because GI took him off his multivitamin back in March when he turned 4 and they said he was too old for the infant version but offered no alternative.  So we have started a new multi-vitamin with iron and added more iron rich foods to his blended diet and will recheck the results in December. 


In addition to blood work, you can also see the difference in his skin!!

Joey's back before blended diet,

 

a couple months after starting the blended diet,

a year after 

 

and his back today.   

 

In addition to improved blood work and wound healing, blended diet also has eliminated his constipation, reduced his over all inflammation levels and a decrease in his dosage of acid-reflux medication.


I do understand that blended diet my not be the answer for everyone with a G-tube but I think the results speak for themselves.  I can only imagine how bad his skin would look and how bad his results would be if we was only getting sugar supplements all day long.  He hasn't had a skin infection in years and the number is colds/viruses he gets yearly have decreased each year as well.   His doctors are very pleased with his overall heath.  There is no plan to remove his G-Tube anytime soon.  He can and does eat by mouth but not enough to survived without his tube and that is OK!  If he goes to college with it, I don't care.  As long as it isn't causing him any issues, the benefits we are seeing certainly out weigh the risks.



*Disclaimer:  I am not a medical professional.   This is not medical advice.  i am just sharing what I have learned along the way with the hope it makes things easier for others. 

©Garrett's House 2021

Administering Blended Diets and Recipes!

Administering blended diets is a little different than feeding formula.  

Most blended have to be pushed by hand quickly vs using a feeding pump over the course of an hour. 

We use the wider extension (blous) to attach to the mic-key button.  And we use a 60ml syringe to push the blends into the stomach.  We push it thru very quickly because that is what my son prefers.  But some kids need it pushed much slower.  It will also depend on your child and what they prefer and can tolerate.  Once the feeding is finished, we flush the line with 20cc of water.  Water is very important for kids with eb to keep the kidneys healthy.  The amount of water each kid needs depends on their age, weight, and health.  Your child's doctor can tell you how much free what they need daily.  

We feed at normal meal/snack times, to mimic when a child without a gtube would eat.  We don't do overnight feeds, which is common in kids with gtubes.  The human body isn't designed to be feed continuously overnight. The gut needs time to rest and when one is feed overnight it really never has time to rest.  

Blended diet is time consuming and not as easy as using formula.  But the health benefit it SO worth all the extra work. 

Here are some example recipes we use:

Breakfast/Snack

Lunch

 

 Dinner

Each one is what I call a "batch".  I then divide each batch into a day's worth of blends.  It is at that point I add other things; oils, the baby oatmeal, Benacalorie, etc...  Then I divide all that into a service size for my son, place in snack size Zip-Loc bag and freeze until we need them.  I typically blend once a week making enough for 7-10 days worth of meals.

You can do any combination of food you'd like.  It all depends on your child's needs, food allergies, etc...  These are just the things we have tried.






*Disclaimer:  I am not a medical professional.   This is not medical advice.  i am just sharing what I have learned along the way with the hope it makes things easier for others. 

©Garrett's House 2021

Blended Diet Ingredients

Once you have read blended diet basics, it is now time to move into creating recipes! 

While those with EB  require more calories each day due to wound healing, you need to look at more than just calories when planning a blended diet. Protein, iron, zinc, calcium vitamin D are just a few things that are also vital for a healthy body. 

With blended diet your goal is to create a well rounded meal.  

First make a list of any foods your child is allergic too.  Or any foods your child needs to avoid.  Kids with EB should avoid foods that are highly acidic to avoid triggering their acid reflux.  They also need diets high in protein, zinc and iron for optimal wound healing. 

Next make lists of the major food groups: 

Fruits

Veggies

Protein

Oils 
Liquids

You can choose whatever foods you want to try.  But as an example I will share the lists of foods we have tried along with the nutritional values of those foods.  I also rank them by calorie count.  I know the pictures are a little fuzzy.  It was hard to turn an Excel spreed sheet document into a picture. Clicking on them might help or you can email me and I'd be happy to send the Excel spreed sheet to you.  sara.denslaw@gmail.com

Making Blends

I choose one or two items from each food group, mixing and matching each time to create a wide variety of blends.  I go off what is available in stores and what is on sale.  I always pick fresh over frozen and frozen over canned.  Avoid canned fruits and veggies (except canned pumpkin) when possible.  Canned fruits and veggies tend to be high in sodium and preservatives.    The oils are to add calories since most fruits and veggies aren't high in calories.  Some oils are very beneficial to the skin and over all health. And with 120 calories per tablespoon is a great way to add calories without adding a ton of volume.  


I create blends in large batches, and then divide them into 30oz portions.  To EACH 30oz portion I add the following:

1)  3 tablespoons Happy Bellies Organic Baby Oatmeal.  )The servicing size is 3 tablespoon and it provides 80% of the RDA of iron.  Plus it had probiotics in it as well.)

2)  1 packet of Carnation Instant Breakfast

3)  1 tray of Benecalorie

Once all that is mixed, I then divide the blend into 6oz serving and freeze them in snack size Zip-Loc bags.  You can store blends in the freezer for months but only in the fridge for 2-3 days.  I take out baggies as we need them and thaw! 

The National Nutrient Database is what I used to determine the nutritional value of each food item.  You can look up ANY item you want to use to determine the break down of the nutritional value.  

This is just a basic idea of the MANY wants to create a blended diet.  Tomorrow I will share some of the recipes we use to give you even more ideas on how to create a blended diet for your child!  



*Disclaimer:  I am not a medical professional.   This is not medical advice.  i am just sharing what I have learned along the way with the hope it makes things easier for others.  

©Garrett's House 2021

Blended Diet Basics

There are many things you need to figure out before you start down the blended diet path.  

First you need to determine how many ounces per day your child needs.  Your doctor or nutritionist is the best person to get that number from.  Next you need to determine how many ounces per serving your child can tolerate at a time.  Then once you figure that out you can come up with a feeding schedule. My son has volume issue.  Meaning he can only tolerate small amounts at a time. So we feed small amounts many times a day.

For him we give five 6-ounce servings of blended diet per day for a total of 30 oz. He gets feed a 7am, 11am, 2pm, 6pm and 9pm  He also does eat and drink by mouth on his own so we mostly use blended diet to supplement what he eats on his own.  But there some days he eats nothing and on those day he is on 100% blended foods.  Every kid is different.  Some will tollerate 8-10 oz three times day.  While others need smaller amounts more often.  We try to stick to the same meal/snack as someone without a g-tube would.   

Once total amount is determined, next the nutritional values need to be determined. How many calories does your child need?  How much iron?  How many grams of fiber, protein, carbs, etc.  If your doctor is unable or unwilling to help with that here is a great interactive calculator based on your child's age, weight, height and activity level.  The only thing it doesn't take into account it having EB.  But our doctor has us add 500 calories to what is recommended based on his age, weight, height and activity level.  For my son he needs between 2300-2500 calories a day to gain, grow and heal.  I know that seems like a lot for a 4 1/2 year old bit it is working for him.  

So your check list so far:

1) quantity

2) number of feedings

3) nutritional values needed per day

Next you need a blender.  If you are just starting out a basic kitchen blender will be just fine.  We have a Vitamix that was donated to us from the company to use since my son has a g-tube.  We contacted the company and provides medical documentation and they sent us a refurbished blender free of charge!  But when we first started out, we used a regular blender with no issues. 

Types of high quality blenders:

Vitamix

Blendtec 

Once you have determined:

1) quantity

2) number of feedings

3) nutritional values needed per day
4) blender

You are now ready to move into preparing the foods!!   

*Disclaimer:  I am not a medical professional.   This is not medical advice.  i am just sharing what I have learned along the way with the hope it makes things easier for others. 

©Garrett's House 2021