It doesn’t seem like it has been nearly two months since I last posted. I apologize for not getting an update out sooner. Here is an update on my Parker as well as where I am at on the cookbook project.
He is still breaking out in rashes near his elbow, behind his knees, and on his neck and face. I finally scheduled an appointment with his GI to see if we could do some more tests to determine food allergies and he referred PJ to the Allergy doctor. I was suppose to get a call from his office to schedule blood and skin testing, but have not heard back yet. The first week of summer vacation was hard on me for various reasons– hay fever, a last minute revamp on my 15-year-old’s bedroom plus she started drivers ed; sending my 13 year-old half way across the country to visit her grandpa; and a June 8th deadline for freelance writing articles I am doing for a local magazine. Whew! Thanks to CE and her comment to remind me to connect with the other CSID parents and let you all know I have not fallen off the face of the planet, though I do feel like my head is somewhere on the other end of the galaxy lately!
So, until I am able to determine the cause of PJ’s rashes, all unproven theories (mine or otherwise) will be on hold until the medical tests come back. The doctor suspects eczema or psoriasis. The only thing I have read about either is in regards to the pH diet and that the theory is eczema can be the result of an overly acidic body. Now, I know PJ’s pH levels were close to balanced when this rash started, so I must trust in traditional medicine to at least point me in the right direction as to how to treat the symptoms.
In the meantime, I have been overwhelmed with life in the fast lane– toting along 5 kids, a tight budget, and sneezing in between– and I have not been keeping very good track of PJ’s eating habits. We did add corn syrup into his diet, and though most foods containing corn syrup do not rank high on my list of healthy, helpful foods, I believe he has done well on the digestive end of it. (I did introduce corn syrup well after his rash developed and it didn’t seem to change the severity of the rash at all). I will however, not condone the use of corn-syrup foods in my cookbook, with the exception of using fructose.
After the unfortunate incident in April, I will not be posting any more recipes with labels defining which CSID Group they are ‘safe’ for. I know just as well as any of you who have been caring for a CSID child for any length of time, that even the tolerance levels of starch and sucrose in an individual child can vary. My PJ, for example wasn’t able to tolerate the smallest portions of apple, cantaloupe, or banana until over two years after his diagnosis. Not even Sucraid was helpful to him at first. So what may be safe for a child who has recovered from the trauma associated with CSID symptoms, may not be safe for another child within the same group. We all must take responsibility and use our better judgement in feeding our children.
In light of my continued belief that the digestive supplements my son has been taking for the past two years have contributed to 1) his steady weight gain and 2) a speedy recover when he does eat food his body cannot handle; I cannot present this information in the cookbook as ‘recommended’ for any one else. I will mention the supplements I give him and why his homeopathic doctor recommended them in my introduction, but after that all the recipes will only include foods known to be safe for kids with CSID.
After several phone conversations with the woman who runs http://www.csidinfo.com/ , we both concluded the best direction my book can take is from the perspective of a mom with a Group B child. Since there is very little research for Group B, this book needs to be written in a way that newly diagnosed Group B parents can use. Right now, Mary is carefully reviewing my manuscript so that doctors and dietitians will support the information and feel comfortable passing it on to other parents. In order to do this I have to take my own personal beliefs and theories out, sharing my personal story and then presenting the foods and recipes in a way that will give Group B parents a strong starting place to feeding their child healthy and helpful foods.
This process will take some time as both Mary and I have other commitments and obligations. As much as I know this book is needed, I believe taking the time to work with the experts on CSID will help me to create a resource that will become very valuable for many years. In the meantime, I do want to continue to post recipes and personal reflections about how our whole family is adjusting to CSID. I will try very hard to update this blog at least once per month. I want to know I can still be offering hope and encouragement to others, so please resubscribe by adding your email address to the mailing list on the right. Since I changed the name of the blog, you will not receive updates if you only subscribed to the other name.
I hope this was helpful to those of you wondering about my son and my project. I welcome your comments, but if you want a personal response, please send me an email so I can respond to you directly. You can write me anytime at Writing4Life@msn.com
Thanks for your continued support and I hope you all have a great summer!