Friday, June 8, 2012

Uggghhhh! Eosinophilic Colitis is SOOO COMPLICATED

SO I totally don't love it when the doctors responses to something that is going on with my kids are "Hmm interesting." "That's suprising." "I wonder why?" So they were really surprised by the most recent biopsy results that they had after the dietary changes. They are also wondering what dietary changes have made a difference and what ones haven't. They are also wondering about the antifungal medication he was on and if that had any affect on the EC. So essentially this appointment today led them to say that hey lets give him back one thing that we have taken out of his diet and see what happens. They said to call in six weeks (sooner if symptomatic) and let them know how he is doing. So out of the list of things he has been off of, they let him choose one thing to add back into the diet. So he picked eggs. I for one am thrilled that he picked eggs, because now we can have breakfast as a family again, with eggs and not have him feeling sad about it. But I don't love the fact that they will add and take out foods over the next several weeks/months and want to keep rescoping him:-( I am in such the beginning stages of learing about EC that I don't even know if this is the typical course of action, or if this is just an MGH specific treatment plan. If you are out there and you have lots of experience with eosinophilic colitis, how often is your child scoped? What are the parameters used to determine when it is necessary? Also my next question is: is this hereditary? My youngest is 9months and has been diagnosed with a milk protein and soy allergy. I came off those things so that I could continue to nurse him. He has been a whole new baby. When I was speaking with them today about Sam, I asked about it. One of the nutritionists made the comment that alot of kids with milk and soy allergies go on to have EoE! I hadn't heard that before and am obviously praying that God prevents this from happening. But didn't know if anyone has had experience with that? Sam was 46inches tall and 43lb3oz today. He has lost weight since the last doctors appointment there which was about a month ago. I feel like we are in another one of his crazy cycles becauss of the fact that he was late for IVIG and I think he just has a generalized feeling of sickness. SO when that happens, he is whiny miserable and eats poorly. SO I am praying that since he had his IVIG on tuesday that he turns around and starts feeling better. I am so excited that we will be able to do the IVIG locally again. I am just trying to get everything all situated with policies and procedures for this new IVIG product. Gosh I worked last night in labor and delivery and assisted with a delivery. Even though I have been a nurse for nearly TEN YEARS now, it never ceases to amaze me the miracle of life and birth. And not only in the maternity side of things, when I have worked pedi or in the ER, I am amazed ALL the time about how miraculously we are made. Heres some cute pics of my munchkins....

No comments:

Post a Comment