My son, Porter, is 4 1/2...'5' in June.
Porter was officially diagnosed with having Autism (3/27/08). He is starting on a Gluten Free/Casein Free/Soy Free/Low Oxolate diet to help heal his gut. We successfully got him off Casein and Soy since summer 2008 and noticed an amazing increase in his eye contact and verbalization. Removing Gluten is next. Porter drinks Dari-Free (24 oz. per day) and started on Pea Protein (Feb 2009) added to his Dari-Free to give him more protein to his diet. He takes food orally, but needs to increase his amounts and variety of healthy, organic foods. Porter started Bio-Medical Therapy/Probiotics/Supplements (Feb 2009). We want to end his diarrhea, heal his gut, help him communicate effectively and live as normal a life as possible.
•HYPOHIDROTIC ECTODERMAL DYSPLASIA
This is one of Porter's diagnoses (4/07). Due to this condition, Porter cannot sweat to cool his body and if overheated, could spike high fevers, vomit, and dehydrate and seizure...and possibly die. Therefore, Porter always needs to be in an air condition/cooled environment and ice packs applied when needed. This makes him 'Medically Fragile'.
•IMMUNOGLOBULIN G DEFICIENCY (B-Cell)
Another one of Porter's diagnoses through a Bacteria phase study from Duke University by Dr. Robertson (8/07). He started on IVIg therapy (9/07) and gets infusions of 10% Gamunex (5g protein in 50ml solution) once per month from a Home Health Nurse via Home Choice Partners, for the rest of his life, just to stay alive.
•TOTAL PARENTERAL NUTRITION (TPN)
-Porter had a Central Line inserted into his chest via CHKD (2/13/07) and started on a 40% pump of TPN (Total Perenteral Nutrition) at 520ml and also in a separate pump of Intra Lipids at 100ml for 12 hours of nightly feeds. This is to help build his immune system and help him grow. This has been our 'liquid gold'. Porter has not needed any hospitalization since being on TPN.
Porter receives Speech and OT Services from CHKD on a weekly basis at 1 hr each and also from the Chesapeake School System (Speech 1 hr week and OT 30 min week). Porter is also enrolled in a Special Ed Pre School Program 2 times per week at a 1 hr session Tuesdays and Thursdays and attends My Gym every Friday for play group activities.