Traumatized Mama Bear.. Part II

Well, as if the first part of this wasn't enough there is more, which is why I chose to write two posts. Who knows, I may actually need a third as there is way too many variables to consider. After re-reading my first post I realized a few points that I had left out. I think it is crucial because as fellow parents and people in general missing details can really change the viewpoint of these posts. So, to clear a few things up I need to clarify a few things.

This whole ordeal started around November. I noticed that Chucky Cheese was having trouble walking up the steps of the bus. The PT called several times and after the Muscular Dystrophy test and adding some supplements we hadn't gone back to the doctor. In February, the PT started calling again and she was extremely concerned. C.C, had been put in an adaptive chair in November due to his inability to sit up in a chair and sometime around February he was given an adaptive chair for the lunchroom with a seat-belt and footrest. Currently, as I was informed in April, he is in a Rifton Adaptive chair with a seat-belt, footrest, and armrests in the class, lunch and specials. His doctor has ordered one for at home as well now because he really cannot sit in a regular chair without slouching bad, sliding off the chair or blatantly falling over. 

After hearing how much progress was lost I again called the doctor. The doctor looked at C.C., read the PT and OT's concerns and asked that we remove C.C. from the room so that he could talk to me privately. My heart stopped and everything stood still. What could this doctor have to say that he couldn't say in front of my son? When they drove the Autism truck over me they didn't make him leave the room. My son's father took him into the waiting room and the doctor stated that he felt my son needed to go to a good Children's Hospital where they could address these issues. He also mentioned Shriners. The next thing he mentioned nonchalantly was much bigger than the truck. He hit me with the Mitochondrial Disorder TRAIN!!! I knew what that was. I was and still remain very scared.

When this whole thing started unfolding, the pediatrician had called a ped. neurologist who had told him exactly what test to order. This was in hopes to bypass some of the waiting time for appointments and have something to show the specialists when we went. I think this was definitely when I stepped onto the stupid train. I guess the radiologists can determine if they feel they need contrast if a reg. doctor orders the test. They chose NOT to do the contrast and they did NOT inform me of this either. When I called to address the issue, they said that had the Neurologist ordered the test it would have been done as prescribed. Ugh... Had they taken the time to call his doctor or spoken to me they would have known that we had spoken to a specialist before ordering the test.  I think we are now caught up to the previous post, "Sorry No Time For...".

After the useless trip to the Neuro-surgeon we went to the neurologist and while they were very thorough, we still were referred to yet another specialist. She saw the issues with his legs and suggested I take him to Shriners. She had also ordered BLOOD WORK!!! That word screams through my head like voices echoing off the walls of an empty hallway. Chucky Cheese heard it and immediately started repeating her and shrieking. The tears started and he was melting. It wasn't but 10 min earlier she had told me how my son seems to be doing amazing for him having an autism diagnosis. I asked her to give me the script and I would have it done another day but she said,"I need you to go downstairs and get it done now" She was testing for Mito. Every time I hear that word I cringe inside. My whole mind wants to shut down. 

Currently they have taken 25 tubes of blood from my little man since this started. I really feel bad for him. The first batch of blood work really sucked as they took 18 tubes in two days!! As I walked downstairs I questioned how many tubes they were going to try to take this time. Mind you by this time I had an audience. My son knew where we were going. He was NOT happy and NOT going without a fight. We got to the lab and he was already a mess. This was the most traumatizing experience yet. His veins collapsed and I immediately told them to call the peds nurse. I brought him to the bathroom as they needed a urine sample. Ugh... bad choice cause he was flapping and couldn't stay still. He was too upset. He whipped it out and peed in the cup but also all over me. Mind you I was on my knees holding the cup. Disgusting. Finally the peds nurses got there. Two peds nurses and two from the lab plus me. An hour and a half later, 7 tubes of blood and we were leaving. They had to syringe the blood out cause his veins were collapsing and the blood would not flow. I felt horrible. 

The blood tests came back and he tested negative so far but they want more testing. He has to see a Neuro-Geneticist. His appointment is on May 30th at Boston Children's Hospital. Aside from all the testing this travel is taking it;s toll on him, me, and my budget. At the beginning of the month we had to go to Philadelphia, Pennsylvania to Shriners. We saw the Orthopedic and basically he pulled the infamous Autism card. If we cant figure it out it must be due to his autism. Excuse my language but BULLSHIT!! That made me mad. Autism does not cause a child's legs to bow and it does not cause as much regression as he has had recently. This is not Autism, it is some other beast that wants to invade my son. It was a four hour trip from hell to get there to be told he doesn't think it is orthopedic and honestly I am not convinced at all. I am getting a second opinion. 

The doctor didn't spend much time evaluating him and observed him for 5 min before even opening his chart. He then looked at me and said,"You are aware that your son has some form of Autism right? That is clearly visible." I looked at him in awe. I have no clue what my face was doing but my blood was boiling. I told him yes but that was not why I was there. He just said I don't think it is an orthopedic issue and tears rolled down my face. He did suggest the Mito testing which I think triggered more tears and he also stated he thinks it is genetic disorder. He then said,"But, I think you already knew I was going to tell you that." Wow... No not really ..I hoped that he would tell me something useful. Something that would allow me to help my son. I hoped he would tell me there was a way to help him and he would guide us through it. But... that isn't what happened and I was crushed. His final words as he left me sitting in the office were, "I think he is just Charlie, and you are going to have to sit back and watch him grow. As he grows you can see how things will go." He said this as if it was the only advice he had to give. Almost like a doctor Spock statement. It angered me. A four hour trip by myself with my son screaming the whole time to have no answers. Crushed is an understatement. 

So we headed home, but I couldn't think. My mind was blank again and all I heard was the doctor's words. His final words kept ringing through my head as I found myself mindlessly driving through PA with no known destination. I then realized that we were lost, my face full of tears and my Chucky Cheese in the back seat crying that he was hungry and thirsty. I had to snap out of it. So I called my cousin and she helped me find my way. We stopped and got something to eat and two stuffies and were on the road home. Whew what an emotional trip. 

This has turned into another long post and I guess that is what I get for not blogging since February but I was just so hurt, depressed, overwhelmed and consumed that I couldn't even meander through a store without feeling lost. I could not possibly write what I was feeling because I was completely numb and I really didn't know how I felt. I still can't say I know but I am trying to sort it all out. This is not the end of our medical mystery. There is more that I will post about in my next post and probably more that I haven't even dealt with yet. We are still going to specialists and he still has more testing, but I will try my best to keep everyone up to date a little better than I have been. Just try to understand how hard it is for all of us to digest what is going on around us. Thank you so much for all of the support and guidance. 

Much love from all of us!!!