Dear Doc

Katie Pasque, MD
Clinical Instructor
Department of Obstetrics and Gynecology
University of Michigan
Briarwood Center for Women, Children, and Young Adults
Building 2, Suite B
400 East Eisenhower Parkway
Ann Arbor, MI 48108

Dr. Neurodevelopmental Specialist
Helen DeVos Children’s Hospital
Neurodevelopmental Pediatrics
426 Michigan Ave NE Ste 102
Grand Rapids, MI 49503

Dear Neurodevelopmental Pediatrician at the only Intensive Feeding Program in Michigan:

I am writing to you directly because I am getting nowhere by trying to go through the suggested channels. I have been trying to get my son Lively placed on the waiting list for evaluation at your program for one year now. I have spoken to your coordinating nurse at least 4 times. I have left many voicemail messages that were not returned. Last week, the nurse from your program promised that she was faxing a referral form to my pediatrician, Dr. XXXXXXX. Dr. XXXXXXX has diligently followed through on multiple referrals to every specialist imaginable for Lively, including calling your program to try to make a referral himself. Still, we have not been successful in scheduling an evaluation. I am contacting you to ask for your help in having Lively seen by your group.

My son just turned 2 on July 15. At 6 months he started having seizures and was diagnosed with infantile spasms. An MRI showed a right parieto-occipital stroke. He was treated with ACTH for 3 months. He breastfed exclusively for 6 months without problems, and at 6 months when we introduced solids, and also started ACTH, he was ravenously hungry and ate big bowls of mashed potatoes with broccoli and peas. He ate until he was so puffy that I was afraid his skin was going to burst. At 9 months he stopped eating and drinking one day, for no reason anyone can understand. He was admitted to the hospital for dehydration, and developed diarrhea and vomiting. During one vomiting episode, he was on his back and obviously aspirated. He had breathing distress immediately and within a few hours was intubated. ENT scoped him and diagnosed tracheomalacia. After 24 hours, he was extubated, and immediately failed and had to be re-intubated for a week. When he finally came off the ventilator, he refused to breastfeed for days, and when he finally tried, he obviously aspirated. A swallow study confirmed this. An NG tube was placed, but he vomited with every feed, so the tube was advanced to an NJ. He tolerated continuous breastmilk feeds. At 11 months, his NG tube was misplaced (at home, by me) into his trachea. He had a pneumohemothorax that required surgery. Again he was intubated and failed extubation after 24 hours. His airway swelled, and it took the doctors more than 30 minutes to replace his ET tube. During that time he was difficult to ventilate, and he became very hypotensive. He required the ventilator again for a week. Later during that long hospitalization, he got a GJ tube.

After Lively came home again with us, my husband and I were able to transition him from continuous GJ feeds to bolus G-tube feeds over the course of many months. We slowly introduced pureed foods and thickened liquids. Today, a year later, he eats stage 2 purees, and occasionally some soft stage 3 foods. He is able to drink water from a sippy cup. He does not know how to chew, and when we offer solids, he holds them in his mouth and eventually spits them out. His OTs believe that he is not able to coordinate chewing to push foods between his teeth or to form a bolus that he can swallow. He receives around half his calories overnight through the G-tube.

My son’s other medical problems include global delays, likely due to his stroke. His seizures are under control with Keppra, and his EEG no longer shows hypsarrythmia, and continues to look more normal each time. He started walking at 19 months and is steadily gaining strength in his left side. He has fine motor delays, but they are improving with therapy. His cognition appears to be improving as well, as he is increasingly imitating, referencing, and trying to sign and speak. Nevertheless, he meets criteria for autism, and received this diagnosis in April, at age 21 months. He is a very happy and engaged little boy, and although my husband and I understand that he qualifies for the autism diagnosis, we have hope that he will continue to improve so that he no longer carries this diagnosis.

With regard to his feeding, we have hit a wall. We cannot get more than 50% of his calories into him by mouth. He is showing no improvement with his ability to tolerate solids.

I know that my son would not have received half of the care that has helped him if I had not been proactive in getting him the appointments that he needs. I have tried to go through the “regular” channels, but almost always, that has failed me, both at U of M, and now with your center. So I am asking you to please help my son be seen by someone who might help him. We have exhausted our resources here, and need your help.

Please contact me with any questions or advice. I look forward to hearing from you.


Sincerely,
Katie Pasque