Second Opinion

Mike and I finished our doctor’s appointments for the week. We were at Mass General on Monday and Children’s today. The problem we are facing is that our philosophy on treatment for Sophia falls in between each hospital’s philosophies. We need to choose which one that we feel is best for Sophia at this point.

On Monday, Dr. Katz, took Sophia off the laxatives and put her on Maralax (a stool softener) to begin teaching her to have a bowl movement without the aid of a stimulant. If she doesn’t have a bowel movement for 3-4 days then further testing will be done at that point. He upped her Donnatil dose because of her weight gain and upped her Zantac for the reflux. I have not started her on the Maralax because I want to know the effects it may have on her long term. I am waiting to get more information on this medication before giving it to her. If after we get the information we decide to try it then we will start it on Saturday. We want day 3 and 4 of her being on it to be when the doctor is in the office not on a weekend. So, at this point all her medications are being kept the same. Leaving Mass General I felt better because we are beginning to take her off the medications, especially the laxative.

Today at Children’s it was very frustrating. When we got there and her file was not sent up to the GI floor like it was supposed to be. We were supposed to meet with the specialist and instead we got 2 medical students and a Nurse Practitioner. Not what we went in for! I thought for a second opinion I would see the specialist, not a student. After giving the students the “run down” on Sophia, they left to consult with the nurse and the three of them came back with the following “opinion:” Remove her from all her medications…cold turkey. They want a baseline of her bowl movements. If she is in pain, let her cry and have her “fits.” If she doesn’t have a bowel movement in four days then call them and they will get us an appointment within 2 weeks. I asked what I was supposed to do with her from day 4 until they get us an appointment and she never gave me an answer. If she cries or has a “fit” then bring her to her pediatrician and have her checked out in case it is just her “temperament or colic.” Then they can refer her out to Children’s “this time” and they will begin doing testing on her starting with a colon biopsy. I brought up the point to them that my pediatrician has seen her “fits” and that is why she is being referred out of their office for treatment, the nurse didn’t want to hear it. So, I held my tongue, said thank you, and left. Mike was very proud of me!

After a long discussion, Mike and I agree that Sophia needs to start coming off her medications. We have been discussing this course of action for awhile. Mass General seems to be taking these steps, as of the appointment Monday, and are doing it in gradual steps so Sophia is comfortable.

Our decision is to continue her treatment with Mass General, but also take the recommendations of Children’s and begin taking her off the medications. So, we will begin dropping her Donnatil dosage every 5 days by .05 stopping when we get to a point that she begins to be in pain. If we are happy with the information we receive about the Miralax then we will stop the laxatives and begin the Miralax on Saturday. We will continue with the Zantac because it is working for the reflux. We see Dr. Katz in three weeks. Hopefully to give him a promising report.