Tag Archives: medical care

Resources

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There are many resources to assist with various things needed by EB families or other families in need. Here’s a list of some we’ve found, please let us know if there are others we might have missed by entering the link or links in the Facebook plug-in below this post! Some of these links are…

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How to find Individual State Programs

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These programs help low-income families (usually) or/and children with special needs. When you click on the link for YOUR State’s Department of Public Health, search for (if it’s not immediately evident) ‘Children Health’ or ‘Children Medical’ services. If the NAME of the State Program and information it is known, that information will be below the…

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Fecal Hoarding and Constipation

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Written by an Anonymous RDEB Patient I have had these issues since birth and have tried a myriad of medications that have been prescribed or suggested by prior physicians. The list includes mineral oil, senna products (liquid and herbal tea) ex-lax, milk of magnesia, dulcolax, docusate sodium, Metamucil, Miralax, Benefiber and many others that I…

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Hints From Grandma Shirley

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Shirley, grandma and caregiver of Jennifer, an RDEB patient, shares her hints and tips and her knowledge about EB care with us. Constipation Hi all, I found this article in a pamphlet put out by dEBra International in their Nutrition section. Thought it might be helpful: Constipation in babies and young children is often the…

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Medical Care for EB patients

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Bathing Bathing can be a good way to cleanse wounds because you can add different things to the bath water. Some patients bathe while others shower or do a combination of both.¬†These are some of the¬†things people use in their baths to help with infections: Aveeno Oatmeal bath – Aveeno Daily Moisturizing Bath with natural…

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