The Journey to Discovery

Now the journey to find out what is wrong with my little boy. This new pediatrician is an elderly gentleman and just seems full of confidence that we will discover why my boy keeps getting sick. First the food diary. Did not help find any answers but was interesting to see in black and white exactly what he ate every day. Next we tried an enzyme. I no longer remember what it was called, just remember that the doc suggested it since my son was puking up actual pieces of food. Thought maybe he did not have enough of the enzyme in the stomach to digest the food and it was occasionally coming up. We tried this for a while to no avail either.



And as if this was not enough to try to work through, my son's doc notices that my son is not really verbal yet. Have you ever heard of Autism? he asks me. I had in the general sense of "kids banging there heads on the walls or crib rails, flapping thier arms" sort of way. Oh NO my son is NOT autistic. Thankfully he let it drop and focused again on the episodes. So he sends my son to a (let me see if I can spell this properly!) pediatric gastroenterologist. (say that fast three times in a row.) This doctor is concerned by the length of the episodes. Says most people throw up once or twice and then are done not several times in a row, for hours at a time. He decides my son needs to have some sort of digestion test, a colonoscopy and an endoscopy. I did not even know what an endoscopy was. He told me in layman's terms that they would stick a scope in both ends to see what they could find. (Different ones of course, not the same one twice! of course hehe) The digestion test was first since it was painless. Basically I take him to the xray dept of the hospital, they feed him a special breakfast. I joke that it was radioactive, but it was treated so the techs could see it in the digestive tract. All my son had to do was eat and then stand still for an xray shot. The only thing they found was that his food digested a little slower than what was usual, but not abnormally slow. All was okay on this front. Next the scary tests. We scheduled the scopes. My son could not eat for two days prior, only clear liquids. Man and I thought he was crabby before. Try putting a child that seems to not understand what you tell him on a liquid diet and tell him he can't eat. Just have some more liquid when all he wants is food. We made it through the two days. Now is the day of the tests. I am terrified. He could have cancer; He could have a reaction to the anesthetic; He could not wake up; He could die on the table; I was a basket case. Good thing my mom was there. Plus I had not eaten anything solid for two days either. I felt bad because my little one could not eat, so neither did I. I look back now and think that I probably should have eaten so when the tests were going on, I was not so light headed and could have been a little bit clearer thinking. Well we know what they say about hindsight....



Anyway, the tests. The results were given immediatley. They took pictures with the scopes, how neat is that, and were able to tell right away what was wrong. Here is a picture of his intestines-we were looking for polyps (sp?) and anything else strange. It all looked fine. Then here is a picture of his esophogus. Look at these tracks. This is from acid reflux. My response- kids can have acid reflux? Yes they can, actually kids can be born with it.



I can't even begin to describe how glad I was that it was acid reflux, not a death sentance, yes I know dramatic, but I was scared. Now I knew why he was crabby, his throat hurt all the time. And his stomach hurt all the time. The doctor prescribed Prevacid. He did not have cancer- I was elated.



Of course none of this was as easy as it sounds. All together this took about two years, with many trips to the doctor, many different trials including a gluten free diet, and lots and lots of episodes of vomiting and diarrhea and a trip or two to the emergency room over it. I was just so glad of a diagnosis and something to treat it with.



In the meantime, with all of the "explosion episodes" going on, my doctor grows increasingly concered over my son's strange behaviors. He took an unusually long time to start talking. He collects strange things, like "strings". By strings I mean anything long: string, cords, bungee cords, rope, chain, straps, belts, you get the idea? He had to carry them around with him everywhere he went, including into the bathroom at bathtime. Strange indeed. I figured just a kid thing. I did notice however that he did not play well with others. This started at his daycare, playing beside, but not with. Ignoring the other kids, not cooperating when he did try to play with them. I then enrolled him in preschool thinking that he needed more structure in his daytime routine. He still had some issues. By this time he is extremely verbal. We call him the little professor because of the way he speaks using big words, almost always correct grammer, and not ever joking around. Very, Very serious. I just chalked it up to all kids are different. Some are just always serious, some always playful, just all different. The doctor tells me that he thinks my son's IQ is probably somewhere up in the 120-125 range. Which of course doesn't mean anything to me. My son is smart, my son is cute, my son is "perfect". Isn't that what all parents think? No, he says, not all kids are smart or cute, but this one is smart. Then comes the awful word of Autism again. He gives me a form that is to be filled out by all the folks involved in his daily care. By now he is in Kindergarten. The teacher fills out a form, I do, my mom does. We take these to the doctor and he now refers me to a pediatric neurologist. I can't help but think at this point hasn't my son gone through enough. Little did I know the worst was yet to come for my baby ( I use this term loosely as he at this point 5.) We drive over to the neurologist who of course is about 45 minutes away, not one in my town to go to. He gives me lots of questions and "examines" my son's behaviors while at this office visit. He asks my son questions, and since he is so verbal is able to answer anything the doctor asks. BUT, he is very hateful in all of his responses. The doctor leaves the room for a few minutes and I remember asking my son why he was being hateful. It was just because the doctor was asking too many questions in my son's opinion, he was busy playing with his strings and the doctor was bothering him. I tell him to be nice whether he wants to or not. The doctor comes back. His determination: Autism. He gives me a referral to a doctor who works with kids with delays and disabilities, in the same office at least. I am devastated. I am envisioning a life with a child with major problems and can't get along in society. Mind you his problems to this point have been relatively mild, just failure to develop socially, and the super serious attitude. And the ever present irritability.



I would like to mention at this time in my son's life, his father is adament that my son does not display any strange behavior, even though everyone, including the doctors, has seen it. He also was adamant for many months that my son never threw up when he was down there. Now that the diagnosis for acid reflux was out there and my son was very verbal and could tell me each time he threw up, his father did admit that "he has thrown up a few times, I guess."



After the prevacid was started, I think that my son only threw up a couple of times, when he had a stomach virus. Not more than once or twice a year. No more diarrhea like he had before either. What a relief to all of us.

Now I was going to have to deal with Autism and whatever that meant.....