What she said:
It sure has been a long year and our journey is far from over as anyone dealing with Cushing?s knows. Claudie and I have been busy with working, school and moving. I wanted to stop by give everyone a quick update. It is hard to keep up it because things her are never conclusive and always changing.
After surgery Claudie?s health progressed slowly. I can say she is not going down hill anymore. I pray that gives hope to everyone suffering for this strange and horrible disease. Her hormones kicked back in and they are functioning. She is going for a Cortisol Stimulation Test next month. She has been off all meds except Tramidol for her back pain. The doctors are doing this to get her ready for the test. They only prescribed Cortef on have on hand in pill form and injections just in case. She has had episodes that I gave her a stress dose for. It came back up soon after I gave it to her so I am unsure how effective it was. In the end she would sleep it off. In one case she tried to go for a bike ride. She got down the block and blacked out. When she goes swimming she sleeps for a day or so after.
School did not go well. She tried really hard but it was like treading water just to keep her self from sinking. The school system was not much help. I felt like they though I was just another protective mother with a fat kid. They gave her a full freshman schedule. She went part-time to school and had some classes on line. This was just 3 months after surgery. It was a disaster. I took her all morning to get ready for school. Because she was exhausted she could only make it about 3 days a week. It was a lot like the last semester before surgery. In that case the school finally decided she should stay home and they sent a tutor. In this case they cut her back to 2 classes at school and some classes on line. It still was not any good. The second semester she went full time on line. She struggled to comprehend things and just could not do it. In the end she did not finish her classes so they just gave her F?s except in one class which she go an A+. I had enough of trying to jump from class to class so in the end we concentrated on science. I would think that if she really was not a good student an A+ would set off some red flags. She was an honor student through grade school and junior high. I have been calling the school for help and they keep passing me to someone else. Right now they have her scheduled for a full time sophomore schedule.
Health wise things are ok, not really good. As I mentioned before blood tests are at least normal. All of them were done with Prednisone or Cortef in her. When they gave me the results of those test sometimes the doctor claimed that there could be false positives and other times they acted like ?Mom what?s the problem all her tests look great.? No one has a straight answer on the facts. Yesterday she had blood test with no meds in her, so I guess we will find out some kind of an answer. I will share the conclusion when we find out. I hope it will answer the same question that others like her might have.
I questioned the neurologist that read her MRI lately. He said if he did not know she had surgery he would think she had a normal pituitary gland. What? They removed most of it and filled the empty space with fat from her stomach. He pointed out that the picture was only in shades of white, grey and black. It turns out that Children?s Hospital does not have any records of her surgery from Froedtert Hospital. Wouldn?t they need them to treat her? By the way Children?s does not do this type of surgery and Froedtert does not give on going treatment to children. I really would like her to see a doctor who treats adults with this condition. So much for insurance companies and medical professionals. No one is willing to admit this is beyond their expertise.
I requested cognitive testing. It did not take place until after school was out. It was hard to get approved by the insurance company because she did not have any previous problems because she was cured when she had surgery (what?) or brain injury. (No brain injury?) How little they know about all of this! Cushing?s turns your brain to scrambled eggs. The results of the test were very interesting. It showed that academically she is high or above average, (what a relief). The part that was interesting was memory and processing. She could remember if given enough time and hints. When it came to processing what was presented to her, it had to be repeated and given time she could come up with the correct answers. She is unable to hold onto a lot of information all at once. Multitasking is not even in the question at this point. She can only dealing with one thing at a time. If she gets to much information she gets lost. The psychologist said it is not ADD; it is that she is so fatigued her brain is the last thing to operate. I guess that explains what happened with school and also being very lethargic after any exercise, and sleeping it off. It might not be a lack of cortisol and need for stress dosing as the doctors suggest. The doctor says exercise will make her better; she has to walk without her legs and feet hurting first.
The psychologist thinks she should only take 3 classes at a time. When I mention that to the school they get all upset about it, right away they express she won?t graduate with the rest of her class. I guess that revels the tone surrounding the problems I am having with the school situation. She just failed her freshman year, pay attention!
The doctors as well as the psychologist want her in school for socialization. She really does not feel like socializing and she does not want anyone looking at her either. Her stretch marks are very apparent. The visible parts of her body look like she has been slashed with a knife, her arms, legs, chest and shoulders. Her stomach looks like a puckered swirl that hangs down. Under her arms, sides and breasts it looks like a mini map of the Grand Canyon. It has stretched my budget trying to keep up with her changing body over the last 2 years. She likes clothes with rhinestones and glitter they make her feel bright and she thinks they draw attention away from her skin. She is such a cutie anyway and a really, really great kid (person!).
As for Claudie?s daily life, she is happy going on the computer most of time. She loves High School Musical, and watches it several times a week. She is always trying out the dance steps. Maybe the Playstation will come back out again one day and I will come home from work finding her trying Dance Revolution again. We saw Hairspray the day it came out and she can?t wait until it comes out on DVD so she can try out the dance steps in the movie. We went to see Joseph and the Amazing Technicolor Dream Coat at the civic theater. She pulled that DVD out because that was one of her old favorites, and she is dancing around to that too. We are going to see Corbin Bleu at the state fair, however she wishes it was Zack. Her first crush. One side note, Claudie?s female hormones have been suppressed so I have not had to deal with the boy problem. She hasn?t noticed them taking double takes lately, yet, but mom has.
Check out this article about fatigue and Cushing?s.
It discusses quality after surgery for Cushing patients.
Also check out the slide show about Claudie I made fooling around at Photobucket. I would really like to see some of these from other people. It would fun and interesting to see real life progress and struggles.
Maureen and Claudette
What I rememeber:
School was very hard and was a terrible idea. I should have been doing what Im doing now. Before I had no deadline on the online school so I would put everything off. Then the high school I would get up to soon and get really tired and bad headsches at school. I was either sick at home or in the nurse office. My teacher were nice. But When I came back I had to much homework then I could handle. It was horrible. Now I have a tutor that come picks me up and takes me to either the library or to the school she teaches. She gets me at 9 on Tues and 4 on wedensdays. I get alot done without have a lot of homework. Well I have homework, but she makes so I can understand it and fits my learning style. In history I was having lots of trouble just answering questions so now I have a scrapbook where I just put important info in a notebook. I can use it during a test if I want but I try not to. The people that alway just wnat me to socialize, I really dont need that. There are alway maybe people I i have never heard of at my school and the next thing I know it they are sasking about how I am. I remember when I awas in sixth grade. I was walking down the hall to the bathroom when a line of forst graders walked past me . The a small blonde haired kid called out to me and said "Hi Claudette!" I smiled and said hi but I wondered who he was. I never seen him before and I never seen him again. It was little werid. But It made me sort of feel good.
With the High school musical, I do love that movie but zac is not my first crush. That just all she knows, BUT DONT TELL HER. ;] lol. I have also noticed some of the boys taking double looks but I look away because im too shy. Dont tell her that either.