Hello Vera, Kurt and Hannah,

It's lovely to meet you! I hope all of you are well. On behalf of everyone, I would like to welcome your family to our tribe - the more the merrier!
Although our tribe may be limited in numbers, we do have big hearts, so if you have any questions regarding CED or anything else please feel free to ask us - we will be only to happy to share our knowledge.
We tend to discuss treatments (medications & natural therapy including massage) that we have found to help the most, any known triggers or medication that make the CED pain worse, and current research being done.

Hannah's story reminds my parents and I very much of my own childhood (mum said that her arms actually look like mine did when I was young). May I ask if the CED occured previously in your family, or is Hannah a genetic mutation? Have the doctors had Hannah's blood tested for a CED gene?
Remember that if Hannah, her brother or yourselves would like someone to talk to (that understands what it is like to live with CED) then that is what we are also here for. Many of us have siblings, parents, etc. that know what you are going through and the frustration or stress it can cause.

Until next time, take care,

Lauren :o)

Dear Vera,

Hello, I'm a 36 year old female with CED, and I have a younger sister with it as well. I was diagnosed at the age of 4. Please keep us up to date on things that happen with Hannah or the kind of pain that she is going through, and maybe some of us can help you see the future, sort to speak. It may be a rough road, but we find that trying to be positive is the best thing. As for the pain, using hot water bottles, heated wheat bags, and massages seem to help for a short time so that she can get through the day, or night, when the pain is usually worse. Does Hannah scream in her sleep? That's also a common thread and is nothing to get seriously worried about. As Lauren has said, if you have any questions, about anything at all, we are all more than happy to help. Hope to talk to you soon.

Tracey

Hey, its wonderful getting new people on here. I remember when i was younger i would always take a hot bath then immediately get into my pj's and wrap up in a heavy blanket. It helps to use a feather pillow to apply some pressure to the legs. Hope this helps out a little :)

Tad =)

Hello everybody,
I would like to thank you for all those interesting and helpful advices!
About two weeks ago Hannah made a medical check-up at the University Hospital of Innsbruck. The positive news are that during the last two years she has been growing constantly. That means that the Prednisone does not show a negative effect on her growing velocity at the moment because we slowly lowered the dosage two years ago and she takes it only every other day. Her doctor thinks that her bone age is about eight years by the moment (which is three years less than her real age) and her present height is that of a small eight year old girl. Therefore we are optimistic that she will reach a normal height when grown up and these are really great news. Hannah also gained some weight during the last half year; giving her as much high caloric food as possible obviously helped her.
When the doctor checked her heart with a stethoscope he heard a strange sound that worried him (Hannah was very nervous and her heart was beating very fast), therefore he performed an echocardiogram and he diagnosed a slight mitral valve prolapse with a mitral insufficiency. Our doctor said that it was nothing to worry about too much, we should only keep in mind to give her immediately antibiotics during bacterial infections or before having any invasive procedures done. This is a very new diagnosis; no doctor ever heard a strange sound of her heart during a medical examination in the last years. Hannah should perform an electrocardiography (EKG) recording for 24 hours in the following weeks in order to check her heart more carefully.
We are not sure whether this diagnosis is connected with the CED. Does anybody of you have some information about mitral valve prolapse or mitral insufficiency?
Thank you so much for your help,
Vera and Hannah

Welcome to the CED sight. It is so good to hear from people like us! I was diagnosed with CED when I was 17 years old. I had been in pain since I was a child but thought everyone felt that way! The doctors kept calling the disease by a different name and when I turned 17 they figured out that it was CED. I have taken high doses of steroids only to make my life more difficult. Yes, it did help with the pain but it caused so many other problems, it wasn't worth it. I take pain meds and have for many years. The thing the doctors need to realize is, this is not just a little bit of pain that can be helped with low doses of pain medications. They need to use the kind of medications that are for bad chronic pain. These also tend not to give you that "drunk" feeling that the lower quality drugs do. I take MSIR (Immediate release morophine sulfate) MS contin (Time release morophine) and an anti inflammatory called Tolmetin. It works pretty well for me./ The only time it doesn't work well is when it is about to rain. Almost nothing works when it's about to rain!

I know you probably don't want to start your child on big doses of pain meds. I would be very careful of the steroid use. It can cause a lot opf problems.

Welcome to the sight and feel free to get a hold of any of us to talk.

~Mary