missclaudie92

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. http://jcem.endojournals.org/cgi/reprint/90/6/3279 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. Take care, 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.

What she said: Yesterday Claudie came to me and said mom look at this. She lifted her arm and showed me spits; .like knife slices along one her big stretch marks. This stretch mark goes from the front of her shoulder under her arm and down the side of her breast, it is 6 inches wide. It is like the skin sloughed off and left slice holes in the skin about 1/2 inch deep. It looks like the skin is lifting away from the underneath skin like this whole chunk could be lifting off. There are grey spots that look like they could be sloughed off too. She said that there is no pain because she can?t feel most of the skin on her body from her shoulders to her legs because it is ripped up. Claudie said the other day when she was putting on deodorant there was a glob of something that came off but she thought it was from the deodorant. Tomorrow we are going to the dermatologist. They squeezed us in. I was arranging with the insurance company to get massage therapy for her muscles to get the cortisol out and for her skin to start the healing. I had to nag the docs for prescriptions. I told them that it was hard for her to move because her skin felt so tight. It feels like leather. We had an appointment already tomorrow for evaluation at physical therapy, one of the people there is a massage therapist, but not soon enough it looks like. I called the doc last week to tell them the skin on her hands was peeling and cracking. They said don?t worry it is new skin coming through. I did not believe we should just ignore it. Now it is looking like her body is starting to reject her skin. I could not bandage the skin because it would rip her skin off when they were removed. Does anyone have any advice? I want to be prepared when we see the dermatologist with the right questions. What I rememeber: I rememeber I was putting on some deoderant. Thats when I noticed there was a glob of something on the deoderant. I ignored it becaus eI thought it was some deoderent. We were getting ready to go somewhere. My was on the computer. I was trying to get her going. The next day I got out of the showere when I noticed that my skin was torn. It was more then gray. The inside looked green from my view! Gross. I show my mom and she started getting really worried. She called tons of people asking them what should we do. Now with the phyiscial/massage therpary. That did some good, only It moved a lot around and I would end up thorwing up when I got home. Once I threw up in my grandpas car. Not cool at all. SO that pretty much what I rememeber here.

What she said: Claudie is smiling and laughing! I raised her Prednisone on my own. She was only taking 7.5mg in the morning. I added a nighttime dose until she reached 10mg before bedtime. She stopped trembling and lay in bed all morning. The endo was not happy about it then she called me back and said well let?s let her feel good for a while before we lower the dose again. I had to make the decision to raise them after I read everything on this sight. I just knew that the doctors were not reading real experiences; they were just reading their books. She so much cortisol in her before surgery, more than 10 times the amount needed, that she had to be going through withdrawal symptoms and that was not good. Her thyroid levels are good, potassium looks good too. I had her drink the Gatorade; I just figured we can worry about the salt and sugar thing later. Her blood sugar level was good anyhow and her blood pressure has gone down to an excellent level. This so amazing. She is still a weak sick little girl. She can?t walk very far. If she tried she breaks out into a sweat and she trembles then. She is never sure if she is hot or cold, but when she is sitting still she feels pretty good. She is reading again too. I was so excited that she wanted to read I got her $100 worth of books at Barnes and Noble. The weight lose has only been like 6 pounds but she is not like a blob any more. The hair on her face has not fallen out but she has decided to shave it, she looks brighter because of it. The hair on her head is getting thin though. More stretch marks have appeared on her legs. I asked the doctor what we should do. He said that she will need extensive plastic surgery when she gets older. I am trying to get the insurance company to agree to massage therapy. It would help her dump the stored steroids in her muscles and maybe help some of the damage done to her skin. I think the stuff that is stored in her muscles and skin is causing more stretch marks to appear. I really would like to post some pictures of her on this sight for the other moms, to give them some hope. I just don?t know how to do it. If anyone can help let me know how. I was so worried she would not get this far with out her becoming depressed. But she is in good spirits. All of your words are great encouragement. Thank you so much! I will keep everyone up dated and the Mom?s that are wait for surgery for their kids please update me here now. I hope I can help get past the very hard part of your babies feeling so sick from the surgery. I also want to know how things are going for everyone. We can compare notes for the Endos. I know for sure now that most are uncertain what to do for our kids. They are probably so sick of parents telling them what to do. But I got sick of telling them I know my kid! What I rememeber: Well lots of this I dont rememeber, I rememeber drinking gatorade. I had the yummy watermelon kind. My mom would get me pink lemonade and my best friend would go out her way to get the watermelon. I also rememeber the first time I had the massage, it felt so good. But she must have moved thing around because coming out of the driveway, I ended up throwing up. Very Embarrassing!

More re-cap on my mom's posts What she said: Hi Friends, I talked to Claudette's endo today. She says she is very concerned and has questions out there to many other docs. She said that this so rare that she is getting all the info she can. I am supposed to up the prednisone to 2 times a day. 7.5 mg in the morning and 5 mg at night. I hope she kept the morning dose down because she has gotten sick several times today. I think that the Vicodin is messing with her bowls. I understand it can do that. She has back pain and now headaches that Tylenol does not work on. Also the Vicodin calms her down. But she will only take it every other day. She gets worried about it because her friend?s mother is on methadone treatment for pain meds. She feels like a hypocrite because she is the one who pushed her friend to get her mother to treatment. It freaks her out that does make you feel better. So maybe all of this stress is messing with her head a bit. She had a massage today. She came out with a smile. The endo says she will write a letter for the insurance for massages. She thinks that could help. The endo says that Claudette?s body has been through so much. It is hard to tell what she needs right now. Her adrenaline before surgery was more than 10 times the amount needed. I asked her how much Prednisone is a normal level for someone. She said that even 10mg was a high amount for anyone. She that a person would not have that much adrenaline (steroids) running through them at normal levels. I hope that is correct and that her answer helps other people who have questions. Please correct me if this is not accurate. Another explanation she gave was about the tumor. She said everything they cut away was a tumor and it was squishing the pituitary until all that was in the space was mostly tumor that was 5 time the size of a normal gland. They are hoping that the tiny piece that was left is the squished gland. Not that it will grow back to the normal size or anything. I asked about the yellow cells the Nero spoke of. She answer hesitantly that this was an aggressive tumor and what they are watching is if it is growing back. She said that it could happen and happen as quickly as this one grew. Has anyone one out there had an aggressive tumor? Has anyone had the tumor grow back? Claudette had fun on the 4th with her cousins. She loves the loud popping noise and the colors of fireworks. We made a flag jell-o mold. It had red white and blue layers. It was yummy. Blueberry, lemon (with cool whip), and cherry, decorated with whip cream and blueberries. It was real pretty, but she wouldn?t taste it even though everyone said it was the bomb. (She?s a picky eater) She slept all day yesterday because she was exhausted from having too much fun. Her back was especially hurting. She forgot all about feeling weak and she jumped up to run after her cousin who was teasing her and she fell right over. Her brain is ready to go!! She?s back to searching EBay for Tinkerbelle stuff. She and her friends love Tinkerbelle. They try to out do each other with the best discoveries. Her favorite saying from Tink is ?Believe?. She is listening to her CD?s again. She likes Hillary Duff because so far she has remained respectable. She likes a lot of older music (older for her). She wants me to bring my record player back out so she can listen to my records like she used too. This going to be a long summer because she is not away at her camps. I really hate that I have to go for work and leave her on her own. But I call her several times a day. She has gotten a lot of Sudoku puzzles done. The endo said that Claudette was low in potassium and get some in her. I have some in pill form, but I got Gatorade to see if she can get that down. I am worried about the salt in it though. Does anyone one know of something that will help? She does not like bananas. Right now real food is not stay down to well. I?m looking for a tasty vitamin drink. Let me know, Thanks. What I rememeber: I guess I dont rememeber much about the first part. But I do remember the fireworks and the Jell-o. I also rememeber falling. It was actually pretty funny. We had brought my then new scooter to my grandparents house. My cousins and I were playing with it. We had drove it down to the back where a mul-berry tree is. We all walked over there to eat some. Then all of a sudden all three of us looked at the scooter and started running toward to get to it before the othere did. of course I was behind. The next thing I know is that I see green(grass) then blue(sky). Everyyone ran up to me asking are you okay? I just answered laughing really hard. Thats me, not showing how I feel. When I was little and I fell down the stairs I would laugh and ask if I could do it again beasue it was fun. Then I would go to the top and fall on purpose. hahahah GOOD TIMES GOOD TIMES. =] I dont rememeber listening to CDs or sleeping a lot. I just rememeber the days went by so fast because all I did was watch Tv and....sleep. okay maybe I do rememeber sleeping a little more then I use too.

SO I thought maybe I should go over my mom's post and tell it how I rememeber. Soo my mom said: Hi Friends, We went to the ER. Doctors are as annoying as ever. Claudette told them she was trembling. No, she could not pin point when it would happen. Yes, other wise she felt ok, except tired. I was asked if we carried an emergency kit. I told them no body talked to us about that. I told them 3 times that she started this while she was on 10MG of prednisone. They gave her some potassium and a 100 MG of cortef (however it is spelled) and took an MRI. They said continue with the 7.5MG prednisone and call her endo on Wednesday. Real they just did not get why I brought her there. They did not deem this as an emergency. They did tell me to get all of her medical records and carry them with me. More than 1 hour after they said that that we could go, I finally rang the nurse and asked if they could take care of us. By then Claudette was upset that everyone was just walking past the room and ignoring us. She missed the fire works and they party our friend was having. She was real hungry and wanted KFC. (Hey, if she will eat something I'll get it for her. she has not eaten very much since the surgery but she has only lost about 6 pounds) She was upset that if someone had released her after the doc had came into say that was all they could do she would have seen the fireworks. She was getting agitated and had tears because we were missing the fireworks. Honestly, they practically ignored us and kept talking with one another. By the way, these are glass rooms they could see us. We arrived about 1:00 and left at 10:00. This was why Claudette kept saying that she did not want to go to the ER. She perked up little after the meds and slept well, but was trembling by this morning again. She says she feels fine, except for that and it is an effort to walk around even in the house here. I feel like they are suspecting me of doing something to her. My God, she even had surgery! Claudette hates dealing with the docs because they make us feel like that all the time. Even when she was in the hospital. We were at Milwaukee Children?s ER. Froedtert and Children's are connect by structure but not thru the medical records. However, she cannot be seen at Froedtert even though she had the surgery there. The ER is set up if you go the left desk you are at Froedtert and if you go to right desk, you are at Children's. This is a big medical complex and they do not share records. Anyhow, on with our day. The family wants to see "Claudie" and pinch her chubby cheeks. What I rememeber: So, I somewhat rememeber this day. I rememeber That it was the fourth of July and I was shaking that morning. When I would shake it was like I was cold but yet I wasn't. I mom kept asking me if I wanted to go the ER at Childrens Hospital. Knowing that it was the 4th of July and that the ER take forever, I told her no. But we ended up taking the drive over there anyway. We didnt wait long before they saw us. So that had cheered me up a little. I though maybe we would get out of here soon. They took care of me by giving me potassium, which was reallly gross. Yuck, I gag just thinking about it. Then They took me down for an MRI. I thought they also x-rayed my back but i guess not if my mom didnt say so. Anyway we were making great timing. It was time to go. So we waited and waited, and waited. We watched fireworks on the News. We watched people come in and the same people leave. The nurses never came to check us out. We waited for about 4 hours for someone to check us out. I was getting veyr upset because I was reall looking forward to sitting on a rooftop watching fireworks over a lake. When they checked us out at about 10:00 everything was over with. I missed the fireworks and seeing my family and I misse dinner. So i was very hungry, which was pretty unusual since i barely ate after surgry. I got KFC. Yum. We went home and I went to bed. That what I remember form that day.

Hey everyone, I thought I would tell you this funny thing that happened to me and my mom the other day. My mom and I were watching American Idol. She was on the computer listening to the people sing and I had my butt planted on the couch. Our apartment is small, its a one bedroom, small kitchen and big living room kind of place. So you can see the front door from where ever you are. So were sitting there like usual and our front door opens. We both spin around. My mom says, "Helllooooo?" Then a tall guy in a bright orange jakcet steps back and stands there. They are staring at wach other when he shook his head and said "Sorry I thought I was on the third floor." Then he just leaves me and my mom staring at each othere still trying to figure out what happened. Now we laugh really hard because I wonder what the guy thought. "Why are there flowers in th hallway. TINKERBELL BATHROOM? What happened to my man bathroom." lol. I cant imgine. Well I should be off to bed since its like 12:21 am where I am. Talk you alll later. =]