Garrett's House is dedicated to the support, advice, and education of a genetic skin condition called Epidermolysis Bullosa or EB for short. Currently there is no cure or effective treatment for EB. Please take a moment to learn about EB, and how you can support others who struggle with EB everyday. Garrett's House also honors the memory of those who lost their brave fight against EB. Please check out the Garden of Angel to learn more about the precious butterfly angels.

October 28, 2015

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 alternativeSo 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 longHe 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 heathThere 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. 

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