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I was smiling and laughing? more re-caps



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!


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