How has Angelman Syndrome Changed Liam's Life?
Liam was born approximately six weeks early and was a little on the small side (5lbs, 3 oz). At approximately two months of age, he started throwing up everything he ate (at that time, breast milk). He would eat and then almost immediately vomit everything. After taking him to the hospital (the first of many, many visits), they advised us to switch him to formula, since he was losing weight rapidly and to come back in a week. A week later, he was still losing weight (now down to 4 pounds), and went through several x-rays, upper-GI exams, etc, and was diagnosed with having severe reflux. He went in for surgery for Pyloric Stenosis, basically tightening up the valve at the top of his stomach to attempt to control the vomiting.
Shortly after the surgery, Liam was still yo-yoing with his weight, and we were getting (even more) concerned for his health. It was at this time that we were told (subtly) that Liam's prognosis for a long life might not be a good one. If you're a parent, you can imagine what it's like to face the prospect of your child possibly dying. If you're not, there just arent' any words in any language to describe it.
To make a long and ongoing story shorter, Liam went through several different types of medications in an attempt to control the reflux. After discovering that the Hospital for Sick Children put Liam on a drug that could potentially kill him or give severe side effects (Cissipride), not to mention a drug that was specifically not recommended for children under the age of two, we took him off the drug (which was not helping him in the least) and the hospital put him on a GJ tube (A tube that goes through the side of his belly and into his intestine in order to feed him with a pump). Within days of that operation, Liam started gaining weight and looking a lot better. (He's now fed both orally and via G-Tube, which goes through the side of his belly and into his stomach). (Updated: At the age of seven, Liam has been off the GJ tube for about three years and eats normal foods, though with his hands - he does not have the fine motor control required to use tools like a fork or spoon) On a side-note, Cissipride has since been made illegal to use in Canada and the US due to a couple of hundred deaths attributed to this horrible drug.
Today, at just over three years of age, Liam is developmentally six months old. He laughs and smiles a lot (typical for Angelman kids), and can roll over and bum-scoot backwards across the floor, but can't sit up, walk or talk.
He has since had the G-tube removed (just after his third birthday) and can eat orally. He still throws up a lot more than normal children do. One of the regular expenses of raising Liam is literally the replacement of pyjama tops and bed linens from being ruined from the vomit (and all the washing they go through because of it)
Update: June, 2005: Liam is now six years old, almost seven! He can sit up, crawl, pull himself to standing and furniture cruise. He still doesn't talk at all, he vomits far more often than a child his age, but no where near how much he did three years ago. He does have seizures from time to time, but they are so infrequent and short that he's not medicated for them (The side-effects of seizure medications are unpleasant, to say the least). Liam is just finishing up his last year of kindergarten and will be going into a mix of grade one/kindergarten next year, thanks to the wonderful, amazing teachers and staff of Beachburg Public School, who came up with this program to both give Liam the greatest benefit of school, as well as avoiding having him sitting still for too long and interrupting his classmates when/if he got upset. Liam goes to school with a one-on-one EA (Educational Assistant) who is with him constantly. Liam can not be left alone in a school environment, for his health and safety.
Updated June 2006 Liam is now seven years old and his developmental age is still between 12 and 24 months. He can crawl, pull himself to standing and furniture cruise, but cannot stand independantly or walk. He has a wheelchair and many physio-therapy contraptions for his legs and heel cords, which are tightening up and will eventually require surgery. Liam is in a kindergarten/grade one split class in our village and has been blessed with peers, teachers and EA's that treat him like gold.
© 2003-2011 Internalysis / Marc Bissonnette, Beachburg, Ontario. All rights reserved.