Autism As A Whole

Thursday, May 31, 2012

Regarding Dr. Asshole

Unknown 5/31/2012 0 Comments

This is the letter I wrote to appeal the insurance co denial for Chucky Cheese to go to Boston Children's Hospital.

DISCLAIMER: Names have been changed for privacy issues.

To Whom It May Concern:

Subject: Appeal

I am writing this letter in response to your recent decision to deny approval for my son, Chucky Cheese, to receive medical care at Boston Children’s Hospital. I am appealing the decision that I was verbally informed of on May 29 of 2012 around 5 pm. I feel that you should know a little more about my son if you are going to make life-altering decisions regarding his medical care.

C.C is a wonderful six-year-old boy who struggles with the everyday battles of autism. He has achieved so much in a short amount of time and I admire that about him. He was non-verbal till he was almost 4 and completely disconnected from the world. He now speaks and interacts with others. He learned how to ride his bike last summer and was so proud. It is hard to imagine what he used to be like if you did not know him then.

Within the 2011-2012 school year, he has encountered many difficult challenges. What started as small physical challenges has regressed into a much more involved case. A case, that has many specialists and doctors confused. He has now lost a large amount of skills including, riding his bike, sitting unassisted, physically keeping up with his peers, and toileting. He has three adaptive chairs that he uses in school and one at home. My son was completely toilet trained, yet within the last six months he has been having incontinence issues in school and at home. He is not even able to stay dry at night. As a parent; this is heart breaking to watch. Chucky has also been battling severe constipation recently. He is now taking Mirolax once a day and about once a week he still requires a suppository to maintain bowel movements. His leg is bowing and he is losing mobility.

If all of the above issues were just isolated issues, I would not be requesting to go to Boston. However, these are all new issues and they have progressed very rapidly. We have traveled to many doctors without receiving any definitive results. My son is traumatized with all of the travel and testing. I really feel it would be more effective to have all of the specialists dealing with him in one facility, where they can communicate and coincide the appointments making it easier for them as well as my child. I want someone to look beyond his autism and help to figure out what is causing his recent losses. As any other parent, I want the best treatment available for my son.

I was very discouraged by the manner in which the determining physician, Dr. Asshole, dealt with this case. I remained in contact with Sally, the review nurse, throughout the process. She was very helpful and amazing. The physician was notified of the time sensitivity involved in his decision due to the date of the appointment. Sally was notified of the denial the evening before the scheduled appointment. Not only did this inconvenience my transportation, and me but also it did not leave enough time to cancel the appointment. It wasted a slot in Boston’s schedule that could have been used for another child struggling with medical needs.

Two months prior to the discussed appointment, I called Fidelis asking for help in locating a good children’s hospital. I was informed to call around and ask different hospitals. Yet, when Dr. Asshole denied this claim, he was able to call around and find a facility he felt was sufficiently qualified to manage my son’s care. While I do appreciate that, it is now taking longer to get my son care and Cohen’s cannot coordinate his appointments the way Boston could.

I am willing to give Cohen’s Hospital a chance, mainly because my son needs to be seen, my ultimate hospital preference was and remains Boston Children’s Hospital. I am basing this on their reputable position as one of the top 10 hospitals in the country and their services available. I also feel that the staff went above and beyond to schedule things with the understanding that we have to travel.

I am enclosing with this letter some records from his school which shows his regression and their areas of major concern. I encourage you to review them along with his medical records and consider my request. Ask yourself what you would want if this was your child. Would you keep pushing forward and want the best care?

Sincerely,

A Bitchy Mamma Bear

Thursday, May 17, 2012

Just Going Through The Motions...Part III

Unknown 5/17/2012 0 Comments

Since it is Throat Punch Thursday and I have many people I would love to have my way with, I think I will continue with my medical mystery!! When you first start visiting doctors you are determined to fix things and excited to see a new doctor to get a different perspective. The determination doesn't go away but as you keep being derailed and detoured you end up losing faith in them. Them meaning the doctor's of course. Do you ever wonder where these doctors get their medical degrees from? Some of the things these specialists have said to me were ignorant and caused me to question their judgement.

After the Orthopedic appointment, which was on the 2nd, we only had a few days to relax before another road trip. At least it was closer and only required a hour and a half drive. He was calmer but this was going to be an all day trip. The Neurosurgeon wanted to have an SSEP test done. From the SSEP, a neurologist is able to determine the time it takes for nerve fibres to relay a stimulus from the point of stimulation (wrist or ankle) to a detection site on the scalp, neck or back. By analyzing the SSEP pattern, the neurologist can get an idea of how well these sensory nerves are working.

Everything I read said that it was pretty non-intrusive and the doctor said it shouldn't be painful but it was a long test. It lasted four hours!!! They tested his arms and legs so it was two hours per section. Chucky Cheese was not having a good day either. He peed himself when we were trying to get things set up which worked out actually because we then suggested he put a robe on. He hates clothes so it wasn't that hard. It was the rest of the test that was a challenge. We started with his legs which seemed to really bother him. He was screaming and I felt so helpless. I wanted to pick him up and tear the wires off to leave but we needed the test done. Arms were not that big of a deal. He didn't seem phased by it. Thankfully that part is over. Now for the results. Thinking about them makes me want to cringe.

It isn't that I want something to be wrong though. I know something is wrong and I hate the process. His arm nerves are normal. Yippeee!!! But... remember I said he has a really tough time with his legs? The results were inconclusive due to "child was uncooperative". He wasn't uncooperative. He was in pain!!! Whatever.. Neuro-surgeon does not want to mess with the syrinx now. He doesn't think it is necessary. Ugh.... Now we had to eat and head to the next doctor for the day. This is getting exhausting!

We arrived to the urologist's office and the "intern" was talking to me when he comes out with,"Well, Autism isn't a neurological disorder so maybe there is something going on neurologically" WTF!!! Where do these people get their degrees???However, they don't feel his incontinence is behavioral and would like to do an ultrasound of his kidneys and bladder as well as a Urodynamics test. The last one requires him to be catherized which in my opinion is VERY intrusive. UGH!!! The neuro surgeon will then see the tests and decide accordingly if he feels the syrinx is an issue. In the meantime we wait and worry.

The neurologist called and says she does not see a huge issue with him and it is so frustrating. I have notes from the school, severe behavior regression, test scores from his tri-annual and his leg looks odd. How much do I have to give them. I travel all over the Northeast and still haven't gotten anywhere. Hopefully, if I can find a place to stay in Boston, we can go to the appointment with the neuro-geneticist and Orthopedic at the Boston Children's Hospital. I am still awaiting an approval letter!

So my Throat Punch Thursday goes to doctors. They would rather blame it on Chucky Cheese's pre-existing condition then looking deeper at what is going on!!! I need answers and I am exhausted and drained. He is sick of all the doctors and he is frustrated with his body. It just isn't working right for him. We will get through this as we always do, but it is getting harder to cope. Thanks for listening and reading. I will continue this when I find out more. Please keep us in your thoughts and hopes for answers and relief. His Triannual is on the fourth and that means I get to deal with all of it face to face. Overwhelmed I am but I think I am ready. Oh, It's my birthday!!! Woo Hoo!!!

Monday, May 14, 2012

Mother's Day Memories

Unknown 5/14/2012 2 Comments

Lately, seeing the bright and wonderful sides of my children has been difficult.

Lately, I have noticed myself pulling away a little, in hopes to prevent snapping at them.

Yesterday, I enjoyed the smiles on their faces as they shared something special with me.

Yesterday, we all sat at the table and ate dinner and even played outside.

We spent time together and I almost made it through the day

without thinking about doctors and medical issues.

ALMOST

“It took me four years to paint like Raphael, but a lifetime to paint like a child.”

~Pablo Picasso

Welcome to Magic Marker Monday!

Saturday, May 12, 2012

Traumatized Mama Bear.. Part II

Unknown 5/12/2012 2 Comments

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!!!

Sorry, No Time For Anyone.. Not Even Myself....

Unknown 5/12/2012 4 Comments

The title of this post is exactly what I told a guy in the grocery store when he asked for my number. Yesterday after I dropped my son off at his dad's house, I went to Hannaford to pick up a few items and cash a check. The line as I walked to cash the check was soo long that I opted to go shopping first. As I went down the aisles I noticed I was wondering and my mind was empty as to what I needed from the store. I slowed down and remembered what I needed but still seemed to struggle to find what it was I wanted to purchase. I think I just have so much going through my head at the time I am really having trouble functioning in society and life. I can't relate to "typical" parents any more and I find it frustrating to even try and discuss what is going on with anyone. That is half the reason I haven't blogged., I can't seem to put my thoughts into words. I don't remember what it was like, before I entered "Holland" , to have a regular conversation. I always seem to be talking about my children or helping someone else get through the beginning stages of acceptance. I need to find myself again, I need to take that time. I am overwhelmed with grief and anxiety that I haven't felt this strong in a long time.

I guess I should update you as to what has been progressing or in better terms regressing. Chucky Cheese has been struggling a lot. It started with his physical therapist calling about concerns and me being the Mama Bear, getting protective. I almost went down the path of denial but.. that would not have helped so I pulled myself together and brought him back to the doctor's. As you might have read in previous posts here, here and here, he has had some muscle issues going on. This problem has now exasperated into a huge problem. It has gone beyond the typical "autism regression" and is portraying itself as a Muscle Atrophy now. Boy. that sounds pleasant eh? Charles' right leg is visually bowing in. It curves at the hip, at the knee and at the ankle. He is losing complete function of his right leg and has much difficulty doing normal everyday tasks let alone regular six year old boy stuff. I find him constantly falling and he is so unsteady. He is even having trouble riding his bike which I was proud to say that he mastered last summer. I have brought him to the pediatrician, neuro-developmental pediatrician, neurologist, orthopedic, urologist, and a neurosurgeon. Why so many you may ask? My son is currently a medical mystery. No one can figure it out.

He went for a 2 hour MRI which showed a syrinx, cyst of fluid, on his spinal cord from T6 - T10. That is a pretty large span and at its widest point measures 5 mm in diameter. Doesn't sound so big but... Your spinal cord isn't all that huge. He did amazing through the procedure and woke up in a pretty decent mood.

Lately his eating habits have decreased, he lost weight, is losing upper body strength, hand eye coordination and has been having some serious behavioral issues. He is also urinating the bed and himself. This is happening at home as well as school. He was 100% potty trained!!! Can you understand why I am so overwhelmed? The neuro-surgeon does not want to remove the syrinx at this time and suggested a urologist and neurologist. So, I followed his suggestions and still have not found any answers. I am completely frustrated.

I need to tell you how ignorant these doctor's can be and how traumatized I am as a mom and my son as their human guinea pig but I think I have to start a new post for the rest. So.. If I haven't traumatized you already, there is more in my next post.