Right before my son turned 2, the GI Specialist decided that the improvements were too small and we needed to get an endoscopy. It took a few months for the endoscopy to be approved and scheduled. It is important to understand your insurance requirements and make sure you are requesting approval for an endoscopy as soon as you know one is needed. All our endoscopies have been done in a children’s hospital or pediatric surgery center in the hospital. Your child will be given an IV sometimes before and to input the anesthesia. Your child is awake when the nurse puts the IV in the arm or hand. It depends on the hospital whether you will be allowed to hold and comfort your child while they are getting the IV. I have had it both ways. Twice where I was there for the IV and once here he was taken back without me.
After the Endoscopy
My son was very groggy waking from the first endoscopy almost a drunk effect. For our most recent endoscopy, my husband asked the anesthesiologist to decrease or not use certain anesthesia to decrease that effect. Always know what anesthesia is used and your child’s reaction so that you can let the anesthesiologist know for subsequent endoscopies especially if you move or have plans to move out of the area. Generally, the nurse will offer a frozen treat and juice after your child wakes. If you know of intolerances for your child ensure you check the brand name to verify it is safe for your child. I have not found one that was not safe but you know your child’s intolerances and allergies.
The Endoscopy and Biopsy Results
The results of my son’s first endoscopy showed a condition called eosinophilic esophagitis. See my post What is Eosinophilic Esophagitis? for further information. This first endoscopy with biopsies resulted in a potential ring of atrophied or scar tissue in the esophagus and 45 eos/hpf (eosinophils per high power field.) The result of > 15 eos/hpf is generally used to start a diagnosis as EOE. They also took blood and found additional intolerances to eggs and wheat.
The Treatment
The GI Specialist put our son on a slurry of a liquid steroid mixed with a hypoallergenic formula at bedtime to coat his esophagus. (Warning on this solution: the slurry is meant to coat the esophagus and stay there while sleeping. Our son had to brush his teeth before taking the slurry which has resulted in his baby teeth being significantly decayed.) Our next steps were to try to remove dairy, wheat, eggs, and soy from his diet. There were some products at that time but not many and it was difficult to remove all food with intolerances.
We chose to stop nursing
Additionally, we chose to stop nursing so we only needed to monitor my son’s food. I decided on his third birthday we would stop nursing. We told him a few days before and then the final time that night. He accepted it ok for a few days and then needed to be reminded a few times before he stopped asking.
Understand I am not indicating that you should stop nursing. That time frame and the specific date helped to cement it in my mind. That time worked for me and since my son accepted it well it stuck. How long you decide to nurse is a choice for you and your child. Every family is different with different needs. The next part of our journey in the next post Our Year of Treatment.
