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Evan's Story
Evan was born March 25, 2002. I had had a relatively uneventful pregnancy--some spotting (the midwife told me she thought my baby was dead) and a bad fall (accidentally tripped by two of my 4-year-old
students). I knew that something was wrong at birth, but it took a year and more to convince the doctors of that. At the time of his birth, it was mainly mother's intuition, as well as the look of his face. I just knew that something was wrong, but couldn't quite put my finger on it. Evan soon began sleeping through the night and we had to start waking him to feed him, as the perpetual snacker was beginning to lose weight. He never did nurse well...on again and off again every 20 seconds to 2 minutes. Even once we switched him to formula he continued to snack. In fact, it wasn't until he was 2 years old that he started to drink 8 oz. in a sitting.
By the time Evan was 3 or 4 months old, I convinced the doctor filling in for our own doctor (he was off on sick leave) to refer us to a pediatrician, as half of Evan's head wasn't growing properly. It was like there was a line down the centre of it going from the chin, up over the nose, over the forehead and around the back. It was becoming more and more pronounced in that one eye, one ear, and half of the forehead were definitely smaller. During the visit with the pediatrician, I also told him about the feeding issues. The pediatrician felt Evan's stomach and said that everything was fine. He also told us to make Evan feed and sleep on the other side of the head and that it would improve. He proceeded to discharge us after that single visit...no follow-up...nothing.
When Evan wasn't sitting when placed at 9 months (he still wasn't rolling either), the doctor (now back from his sick leave) told us that he was still within the range of normal and that we'd see if he was sitting by 10 months. On the day of the 10 month appointment, Evan sat for 2 minutes and 15 seconds in the morning and for even longer in the afternoon. He was again within the range of normal, so nothing was done. Finally, out of sheer despiration, I proceeded to a local children's rehabilitation centre. They immediately put him on the top of the waiting list and by the time Evan was a year old, he was getting the necessary physiotherapy. He's now also getting speech and occupational therapy. The speech therapist there encouraged us to find another pediatrician and gave us the names of the top three in our area.
The new pediatrician would see Evan forcefully vomit huge amounts and then procede to tell us to come back in 6 months. It was SO frustrating--yet another doctor who wouldn't listen and thereby help us! Finally, after a trip to the ER, I was able to convince him to listen better. I told him what caused Evan to vomit and right on cue Evan demonstrated with both examples (the asthmaticky reflux cough and the bottle coming toward his face). We finally got the diagnosis of GERD and got some medication. Before that, there were the many nights where my husband and I got only 2 or 3 hours of sleep. That still happens sometimes if Evan is sick, but things have definitely improved and I hope that he will eventually outgrow the reflux. Part of the improvements, however, involve Evan learning to control the reflux by swallowing it back down. Some natural products (glyconutrients) seem to have helped with the healing, as Evan was reflux-free for one year between flare-ups this last time.
Evan started crawling at 22 months and walking at 30 months. He's also finally feeding himself with a fork and a spoon part of the time, and he has also improved with his finger feeding. It took us months of feeding therapy, but he's really dealing much better with his oral aversions. When the sensory (Evan has a sensory integration dysfunction) and reflux flare up, I now know what to do and how to help him through the rough times.
Evan had an MRI at the end of September, 2004. It showed that the right side of his brain is smaller. (Duh! I could have told them that!) There are two possibilities for that. Either the carotid artery is too narrow and not allowing enough blood to flow to the right side of the brain OR there is a change in one of his genes. The geneticist says that this condition is so rare that more than 99.9% of the world's doctors have never seen it. There was a gene (one that causes this) discovered in an older woman in Europe 10 years ago, so it's possible that the doctor who discovered it will be doing some of Evan's blood work sometime down the line. In a urine sample, they found an excess of the brain chemical homo vanillic acid, which is led the geneticist to believe that Evan has a pediatric neurotransmitter disease. More testing (blood and urine) proved that this was not the case.
A pediatric respirologist has made a huge difference for Evan. Breathing in the acid from refluxing and also aspirating the vomit has caused irritation to Evan's lungs and hence the clear phlegm. It also seems that there may be something that he's mildly allergic to that is causing all of the clear phlegm. He'll be on a nasal spray, as well as a steroid inhaler, an emergency inhaler, and Claritin Allergy, as necessary.
Evan is also followed by a pediatric opthamologist. He wears glasses and we patch his right eye for an hour daily in order to strengthen his left eye. Evan does not have 3D vision, because his wandering eye was missed by doctors in the first few months of his life. He will never regain the 3D vision.
Evan is no longer hanging at the third percentile for weight, but has consistenly maintained a 90th percentile weight for a couple of years now. He no longer loses 5 pounds in a week, praise God! His weight is now more proportionate to his extreme height, which is way above the 97th percentile. We no longer deal with the constant day and night vomiting and weight loss.
Evan has been through many genetic tests so far, with the latest being the chromosonal micro-array test. The results of that showed a variation, not a proven result, meaning that we cant be sure of the result. There is an increase in the copy number of a certain region of the chromosones that are involved in Angelman Syndrome, but it's quite possible that it's only a variant, a fluke. There are other families with the same change in their child, and also some of them with parents that have the change, but are 'normal'. (Gosh, I hate that word!)
Since it's a relatively new technology (the children's hospital has only been sending tests down to Texas to be done for a little over a year), they need more cases to see if it means anything. Often it's just a 'human variation', as we all have variations in our genes. We'll have to go back in a few years and see what is new in scientific knowledge, testing, etc.. In the meantime, Evan's geneticist has decided to seek another opportunity out west and we will be looking for a new doctor.
Evan has certainly come a long way in the past 4 years and 7 months. He has had an extreme amount of ups and downs with his reflux and also with his learning. He has often forgotten new skills and words, and had to relearn them. He's still dealing with global developmental delays, of course, as well as GERD, DGE, somatodyspraxia (poor motor planning) and Tactile Discriminitive Dysfunction (major sensory issues). He wears SMO's, an orthotic device that is fitted for his foot and goes up around his ankles. These help to strengthen his flat arches and his collapsed ankles. We've been told that he would have extreme pain from this, but he has never known otherwise, so he doesn't complain. He has learned to overcome many of his sensory issues, to ride a bike, to colour within the lines, to write his name, to cut with regular scissors, to use some 2-word sentences, to count to 20, and to say his name. He has played soccer and been the only 4 year old on the field left running at the end of the hour. He can now climb a few stairs at a time without holding onto the railing and by alternating feet. He is also finally toilet trained, at the age of 4 1/2 years. He is presently learning to ice skate, because he is bound and determined to play hockey like his big brother, Brandon. It may still take him an hour and a half to be able to get enough food in to live on, but at least it's staying down most of the time now without the gagging, choking, vomiting and aspirating. Evan even fed himself an ice cream cone this past week with minimal assistance. Evan is our little miracle boy and my hero!
At this stage, I am no longer on information overload or in shock. I do still grieve sometimes though, as any parent of a special needs child is bound to do. It has been a long journey and I know that there is still a long ways to go. I long for the day when we will have an official diagnosis of what is causing all of Evan's problems. Until then, we'll continue to plug along and to help him to reach his best potential.
Written by: Janette, EvansMom
Read more about Children's Stories:
Zac's Reflux Success Story,
Noah's Story,
Emma Claire's Story,
The Story of Andrew,
Owen's Story,
Raeden's Story,
Olivia's Story,
Hannah's Story,
Samuel and Jennifer's Stories
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