I would like to introduce you to Anna. Anna is my first born and the one that put me to the test as a mother. I am a soft spoken person who lets people walk all over me. This is a poor quality to have as a mother, and God knew that this was the one thing that needed to change in me when He gave me Anna.
I am writing this blog because you may be going through the same thing and maybe just maybe this can encourage you or you can encourage me.
When Anna was born she was very healthy. Her doctor appointments for the first year went great. I would leave the doctor thinking, "I soooo have this mom thing figured out!!" When Anna turned a year old she would wake up vomiting. She would do this for about an hour and then just lay around for another hour. Then she would get up and play as if nothing was wrong. This happened on an average of once a month. I started to get concerned when I noticed this was not something that was going away so I made a doctor appointment. I was very quickly blown off as a "first time inexperienced mom" and was told that she probably had a virus and to just keep her fluids up.
I soon began to notice that she couldn't hold any kind of sugar drinks in her system for a long time. One glass of juice meant one exploded diaper. As these "episodes" went on and on we continued to waste more time with doctors who said it was a virus and to increase her liquids. We very soon moved on to another doctor who would listen to us. She was just what we needed to get our answer. She saw Anna once during these episodes and sent her straight to the specialists.
The older she got the worse the "episodes" were. I remember a time when she vomited 10 times in one hour and after calling her doctor several times we were advised to take her to the E.R. Anna was 3 years old at the time. Of course by the time that the doctors saw us in the E.R. her "episode" was over and we were quickly sent home. By this time we had already been seen by an endocrinologist who had cleared her of diabetes, but by testing her for diabetes we noticed that her sugar levels during these episodes were at the lowest 59 and highest 64. For anyone who doesn't know, your fasting sugar should be around 90 to 100. So then we were sent to a Metabolic Specialist. The only one left in the state. He had is own doctor bag and refused to use any of the tools on the wall. You know the ones that they use to look into your throat and your ears. Well when he pulled a huge flash light out of his bag and told Anna to say "ahhhh" I knew we were in the wrong place!!!
I put all of her symptoms together and made the choice that she needed to be with a gastrointerologist. When we came to that appointment I felt a peace. I knew we were where needed to be. I explained the symptoms and she wasted no time eliminating things. Anna was scheduled for a biopsy of her esophagus, stomach, and intestine. Results came back normal. Anna then went through what seemed like an endless amount of blood work all results came back normal. She then went in for a lower G.I.........normal
During this time it was like I could feel everyone saying behind my back "see I told you nothing was wrong with her daughter. she is just over exaggerating all of this" I had so many doctors shove me out of the office I was getting discouraged!! You don't want anything to be wrong with your kids but when you know something is wrong....well you kind of hope something comes back "not normal" so that you have your answer.
The last thing that the doctor suggested is that we wait for an "episode" and rush her to the nearest hospital and get blood work during that episode.
Finally that day came. She woke up, sugar in the low 60's, then starts to vomit. We loaded up in the car and headed to the hospital. This is where God showed me just how a momma bear can fight. We only had a limited amount of time to get these test. If you remember these tests had to be taking during an "episode" which usually lasted two hours. So I was not about to wait an hour or more to see someone. We blow into the E.R and I said, "I need to get labs done on her, and I need to get them done now!!" Admissions did their best to get us through but our trouble was with the lab tech. She, of course, was with someone, and I guess that they only have one person in that hospital that can draw blood. I knocked on the door and she came out and said , "you will have to wait" Looking back I don't know where this came from other than God, because normally I would have said, "okay we will be right over here" but instead I said "NO! You are going to listen to me, we have 4 years worth of research invested in this child and a limited amount of time for you to get these test run before we come to the point where we have wasted our time!!!" She slammed that door in my face and just lucky enough for us some well dressed man came down the hall (I am guessing he was the big dawg of the hospital) and I guess that I had made such a scene , he asked was everything okay. Before I knew it there were three women ready to take her blood. She had seven tubes of blood drawn that day. I remained strong throughout all of this, but at that point I broke down. I had never cried in front of her but that day I did. She was so dehydrated they couldn't find a vein and when they finally found one she had cried so much she had nothing left in her to fight with. She just layed there an looked at the ceiling. I guess the worse part of all of it is when her doctor asked her at the next appointment if she remembered being sick and going to the hospital she said "No" I guess it is good that she has no recollection of all of that, but at the same time it was alittle scary for me.
So a month later the phone call came. The call that we had been fighting for now for four years. A blood test came back abnormal. Anna had a Primary Carnitine Deficiency (PCD) With one phone call Anna became 1 in 40,000, and the other two (one being unborn) were sucked into it as well when we were told it was genetic. Turns out the mother and father have to have one specific gene each in order to pass this on.
So what exactly is a PCD well, Her doctor really couldn't tell me. See she is a Gastro doctor and the doctor we needed was a Metabolic Specialist. But she explained it as Anna's body breaks down fat but it isn't turned to energy and is isn't taken out of her body as it has to be attached to carnitine (which the normal body makes on it's own) in order to leave her body. So her fat is burned and then the "ashes", if you will, sit there and become toxic causing her body to go through a metabolic shock. Her sugar drops she starts to vomit and do anything and everything to get rid of it.
When reading about this we found out that PCD is also mistaken for SIDS. That the dangers of this is that the sugar can get so low and the right amount of glucose isn't made to bring it back up on it's own and without hospital treatment could be fatal. We also read that a stomach flu or any illness that causes her not to eat for a long period of time can be fatal. Without carnitine major organs start to shut down as the fat that isn't carried out of the body starts to attach itself to the heart, kidneys, pancreas.... the list goes on and on. Not something you want to meditate on but it was what made up our mind that homeschooling was more than likely the best choice for us.
Anna is on a carnitine medicine right now and we have noticed a huge difference in her. Her energy level was the biggest adjustment that we have had to make. From the time she is awake to the time she goes down she is nonstop!! She use to keep dark circles under her eyes that are gone now too. We have just completed her first full year on her meds and she has had a total of two episodes this year. Her doctor is very pleased with the way her body has accepted her medicine. Her dad and I are very grateful to God for the push that we needed, daily to get her to that answer.
It amazes me how great God is. Imagine being the parent of a child who has something that only 1 in 40,000 people have and in order for her to have it you and your husband have to have one specific gene. She is a very special child as are all of our children. I look back on all of the times when I had no clue or thought to even check her sugar. She was so small. I cringe at the number of times her sugar may have dropped during the night and I didn't know. She could have been taken away from us at any given time because of our unknown to even keep an eye on her sugar levels........ but she wasn't........ Someone else was watching her sugar and glucose for me. That same Person kept pushing me to get that answer, that we needed, to help her. When others told me nothing was wrong, this Person reminded me of all of the things that were not right. I am forever grateful to God for Anna. God chose us..........
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