Recent CSID diagnosis?

Occassionally, I get an email from a parent via the March of Dimes, Share Your Story website. These emails seem to be coming in more frequently, which is both encouraging and discouraging to parents. During a recent visit to my son’s Peds GI, I found out that more and more doctors are getting information about diagnosing CSID. Unfortunately, a positive diagnosis is only the beginning and some doctors are diagnosing without conducting all of the tests to determine enzyme levels.

I wish I could update this blog more often. I recently emailed several parents my recipes list as it stands. Please let me know if you recieved it and if  you are finding success! The more positive feedback and results, the sooner we can compile everything we know and put it into a book form.

I will update the polls on this blog as well… and just as soon as I can I plan to copy off the recipes and bind them cheaply in order to mail hard copies to any parents wanting to help in the research process. Really, all this involves is your willingness to use the ingredients and follow the steps so that I know my instructions are complete and easy to follow.

If you did not recieve an email with a copy of the recipes and you would like one, please let me know. It is important to have your child monitored by a doctor and a dietician and that you don’t use any ingredients you are not 100% comforable using.

No matter how much information or how many recipes I post here… the real success will only happen if other parents discover the same results that I have.

On another note, if any of you are interested in posting to this blog recipes, symptoms, questions or whatever, please let me know. This doesn’t just have to be about my personal journey and the information I alone have discovered.

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3 thoughts on “Recent CSID diagnosis?

  1. brittnie says:

    It's taken me some time, but I am finally getting to your blog. I find it interesting your Doctor saying more CSID patients are being discovered. Mostly cause I was told this on the phone when I got my results for Logan. However, I still have yet to meet anyone in my area with it. GOOD luck hun!! I am here behind you!!

    Like

  2. Lauren Yarnell says:

    I'm hoping this reaches you. My name is Lauren Yarnell. My son is in the beginning stages of getting a diagnosis for CSID, our biopsy is scheduled for May 18th. TJ is 2 1/2 and we have struggled with his GI issues almost his entire life. Currently the only indication we have that he has CSID is a pretty low pH in his stool. I just recently looked at your blog and changed his diet to the group A list. This made him go symptom free. He got into some candy at his school Easter party today and we are back to symptoms again this afternoon. I am VERY interested in the recipe list if you wouldn't mind sharing. My e-mail is lyarnell@cinci.rr.com

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