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.....

The Beginning

When my son was two years old, he began having episodes of vomiting and diarrhea. Not daily, not even weekly. Just once or twice a month. This was obviously of concern to me as he did not have a history of this. Even as an infant he rarely spit up. I nursed him exclusively for several months and I can only remember him spitting up a few times. Once of course was on my sister when I was home for a visit. She told me that she was rather grossed out by the though that the little cutie just upchucked her sister's breastmilk all over her shoulder. She said that formula would have been bad enough, but breastmilk was just too much! We just wiped it off and decided it was better than formula though as it would wash out and not stain her shirt like formula would have. Plus it was not so stinky. Anyway, he was not a puker. Then this puking started. We aren't talking throw up once and be done with it, we are talking throw up that was so acidic that it burned your nostrils if you were too close to it. Imagine what my poor little boy's throat felt like. He would vomit several times in a row, stop for a short while only for it to start again. We would do this for several hours. We went through a lot of towels trying to catch it so it would not get all over the mattresses. Finally he would stop throwing up and could fall to sleep for a while. Oh, but we're not done yet! Then began the diarrhea. For most of the rest of the day, acidic smelling diarrhea. Makes me wonder what his poor little bum felt like, if it burned coming out like it smelled like it should. The first couple of times really scared me. Oh, hell, who am I kidding, all the times really scared me. I wanted to know what was wrong with my baby. So, I took him to the doctor. Of course she wanted to know what he had to eat in the past few days. Here is where the interesting part comes in. I did not know. This all started the first time my two year old baby had to go to his dad's house for a week. I did not know anything as my son did not talk except in a few one or two word sentances. Mostly pointed to what he wanted. He was not really very verbal yet. And of course his father did not tell me anything. I did not know what or if he ate, when or how much he slept, if he played, nothing. I could not tell her. So she did a stool sample to make sure it was not a parasite or anything like that. Said to follow the "BRAT" diet. Which we did. And a couple of days later, physically, it was like it never happened. However, my little boy was never the same. He became angry, sullen, got into trouble at the sitter's house, and was irratable at home. Since he was not really verbal enough to talk about it, I went to the doctor again. I tried to explain the huge change in behavior, noted by everyone involved in his day-to-day life, not just me. She said not to worry. Too bad, I am worried, could he be sick and just not able to tell me what is wrong? No, there is nothing wrong, I am just over-reacting. Soon, this is followed by not eating well, and still all the crabby-pants behavior. I do not remember now if he threw up again before he went to his father's for another visit, but I do know that he got sick again when he got back. So, back to the doctor. Could something he ate at his dad's be making him sick, like an allergy or something. This time she did decide to run some tests. She ordered some blood work and stool sample tests. I do not know what they were looking for, just remember the gut wrenching feeling when we had to hold down my baby boy to draw blood. If you have ever had to sit there and hold your child while someone sticks a needle in their arm for drawing blood and listen to your baby cry, you know the feeling I refer to. It is awful. We got the test results back. Nothing. Why then does my little boy keep having these "explosion" episodes? Why is he so irritable? No one had any answers. I finally went to a pediatrician. The previous doctor was a family doctor and perhaps, I felt, not up to date with all things pediatric. This new pediatrician did not for once doubt my story, which was a refreshing change from the previous doctor. He recommended trying several things for these "episodes". First being a food diary to see if we could find the culprit that way. Now why did the first doctor not recommend that? Super idea, so we tried it. And many other things.....And thus began the journey to discovery.......

My Story Part II

I recently wrote to my hound friend, SunEday, that if only I could get my son home, I was going to go public with my story so that other women in my situation would know that they are not alone, and hopefully create enough of a stir to stop this abuse in its tracks. What I planned on doing if only I could get my son home was to start some kind of campaign to stop MSBP from being used in court in the US. I wanted to have consequenses for the actions of folks who think it is okay to throw this term around and wreck lives. I want there to be laws against allowing this "syndrome" from being used in court. In the UK, this "syndrome" has been discredited and any cases where children were taken and motheres accused are being brought back and reviewed. Why is it still allowed in the good ole US of A? Other countries are also starting to question this "diagnosis". Why not the US? Don't we have rights to be innocent until proven guilty? I have since decided upon learning that I will not be bringing my son home, that I will do this anyway. I do not want to change the world. I just want to protect other mothers and thier children. This should not have happened to me and I want to help prevent it from happening to others. Someone needs to put aside thier fear of being labeled a child abuser and stop this madness. I will stand up, and I will not be afraid for myself.

I will, however be afraid for my son. I will worry about his acid reflux, his fears, and the abuse he receives at the hands of the courts, his dad, and the whole system. It is not only my life being wrecked by being accused, it is also my son's life. He was coasting along in life living with me, then one day is told he can never go home. How is that okay for someone to decide? How is that okay for anyone to toss this "syndrome" out there about someone falsely? How can there be no consequence for people to make these accusations with no proof, cause someome (almost always the mother in the case of MSBP) to lose thier child, and expect that all will be okay? Does the one who makes the accusation get to say to themselves I did not hurt anyone by saying this? Does the one who makes the accusation get to pretend to the world that they had the child's best interest at heart? If the accuser had the child's best interest at heart, why in this case was the Dept of Children and Family Services not called? Is that not the protocal for turning someone in for child abuse? Of course the accuser in this case did not call DCFS. I had not actually done anything wrong. DCFS can't help take my child away and give custody to my ex if they don't find any abuse. At the risk of sounding paranoid, the original accuser in my case had reason to slander me. I was protecting my son's rights at school. I would go to the school any time my son complained about a problem that did not get resolved. I would talk to the teacher or the principal. I would go to the playground at recess where he said other children bullied him. I would defend his rights as a person to not be a victim of bullies and an unrealistic teacher. I did make complaints against the teacher. That is my right as a parent. If I feel she is not doing her job, it is my responsibility to protect my child. So the principal of the school saw a way to get back at me. Tell my ex that I am crazy. She makes it all up. The problems at school, the acid reflux, the oppositional defiant disorder, and the Asperger's syndrome. Never mind that I had medical records showing the diagnoses that my son received, from a real doctor, not from me; never mind that my son was referred by his pediatrician to see these doctors who diagnosed him. Let's not discuss that part. Let's pretend they don't exist and tell the dad the mom is crazy, that'll get her out of my school. Let's also pretend that we don't know that this poor little boy is in therapy for threatening to kill his dad, with the details of how and when he will do it. Let's get him out of this school and into the hands of the very man this little boy wants to kill. Because in this little boy's mind, if his dad is dead, his dad will go to hell, and then he never has to see him again. "cuz when I die, I will go to heaven, and so will my family (notice he did not include his father in the family category) and dad will be in hell, so I never have to see him again." Gosh, let me think for like a nanosecond of why that scared me! What five year old even has that much of a concept of heaven and hell and thinks about his and others mortality? I don't even know of any 10 year olds who think like that. Maybe some teenagers and certainly adults, but a five year old? That is a problem. But how dare me seek help for my child. There must be something wrong with me. Not my child or the situation that made him think that his dad's death was the answer to anything.

And that is where this downward spiral began....

My Story Part I

I am going to share my tale so that others may not have to suffer at the hands of "experts". I am not a writer, just a mom with a heartbreaking circumstance. I will attempt to put my story into words coherently. I know that I am not alone in this agony. This is happening all over the world. Fortunately for mothers in other parts of the world, this witchhunt will soon come to an end. Roy Meadows is being discredited.



Who is Roy Meadows, you ask. Well, he is the man that decided that he was the one to make the decision of whether moms were abusing their children with a syndrome called Munchausen Syndrome by Proxy. There are many websites online to get information on this so-called syndrome, and when a mother sees the list of "symptoms", one will realize why I call this a witchhunt. Basically what it amounts to is any mom "over involved" or "under involved", chooses to get educated on why thier child is having difficulties that no one can diagnose or wants to do further testing (doctors), or just knows that something is wrong that the doctors have yet to determine, you could have this "syndrome". Now comes the kicker: if you claim you have it and say you will seek help (whether you have it or not), just because you want your children back, you can't have them because you might harm them. If you deny you have this "syndrome", you have it because denying it is a symptom, and you don't get your kids back. Once this "diagnosis" is make, you are guilty unless you can prove your innocence. Now tell me how a mother can prove her innocence if by the very act claiming that you are innocent and do not have the "syndrome", you are afflicted with the "syndrome". Quite the quandry, isn't it?

To be continued...

My First Blog!

Today is my first blogging experience. I am thankful to all my hound friends who showed me the way to blogging. I also am thankful to the pound for showing me the way to cheaper--well, everything! and getting some really good recipes! Thanks hounds and pups!