MaryO

They think that the adrenal glands are in the brain! "A tumor in the adrenal gland of Kyle's brain..." http://www.fortmorgantimes.com/Stories/0,1...3213158,00.html Article Last Updated: Tuesday, January 24, 2006 - 5:30:39 PM MST Morgan boy, 11, wins battle after close brush with death By CAMERON MATHEWS Times Staff Writer When Kyle Hopkins, an 11-year-old Fort Morgan boy, complained to his mother, Angela, of having a headache, his symptom quickly spiraled into a violent swarm of events that would change his and his family's life forever. The Hopkins family was spending the day together at Flatirons Mall June 4, 2005, when Kyle told his mother he was having sharp pains in his head. After a light lunch of Chinese noodle bowls and soft drinks -- an unusually light lunch for a big eater like Kyle who ate barely any of his food -- the family decided to walk around a bit more before heading back to Fort Morgan. As the strong scent of perfume seeped out of one of the stores, it was the triggering effect that somehow skyrocketed Kyle's headache into a world none of them thought existed. As Angela rushed off the escalator to grab some Aleve for her son, Kyle began to cry. As he took two steps off the escalator, the crying turned to screaming. A seizure in Kyle's brain caused him to collapse and instantly paralyzed the entire right side of his body. He began to throw up as the Flatirons Mall security quickly called 911 for further assistance. A North Metro Fire and Rescue ambulance arrived at the scene shortly after to pick up Kyle, and he was rushed to Avista Hospital right across the street from the mall. Looking back, Angela knew the hospital's close location was the reason Kyle survived. The headache he felt turned out to be a hemorrhagic stroke caused by hypertension. Too much pressure on Kyle's brain from the hypertension caused several arteries to blow, which led to the stroke. "He was a perfectly healthy boy like every other boy," Angela said. "Doctors told us he is an absolute miracle. The hospital that saw him is the only reason he is still here today." Just 45 minutes after Kyle's stroke, neurosurgeons were performing brain surgery on him to do an emergency pressure release operation on his head. A tumor in the adrenal gland of Kyle's brain had caused the pressure overload, and the surgeons had to work quickly as he was losing blood fast. Surgeons cut off a large piece on the left side of Kyle's skull in order to perform the surgery. Kyle was in a coma at that point and would stay that way for the next two months. He was on life support for many days as his body became stronger, and his brain came back to having normal neurological patterns. Once the swelling in his brain subsided, the spinal chord fluid tube was removed. He was also tube fed through his mouth for two months while he remained in a coma. He was finally released from the hospital on Aug. 29. Kyle remained in the hospital for nearly three months before he was released. While Kyle's dad, Thomas, came down to see him in the hospital every week, Angela stayed with Kyle the entire three months of his recovery. Doctors had placed a bed beside Kyle's bed for her to sleep on. He even celebrated his 11th birthday in the hospital. One thing Kyle will not miss was the number of needles that had to be put into his body during his time in the hospital. Angela said he was never afraid to get shots or to have blood drawn before the stroke, but if Kyle so much as sees a needle now, he screams. Because of Kyle's stroke, he not only had to learn to walk all over again, but had to re-learn to talk as well. His short-term memory was lost, and the right side of his body, specifically his right shoulder and leg, are still paralyzed. Doctors still don't know what caused the stroke, but they do know he is lucky to be alive today, Angela said. It was extremely tough for Angela and Thomas to realize Kyle's dreams of becoming an all-star baseball player and starting football halfback icon, but Kyle is intent on getting better and maybe following through with those dreams at a later time. From September to October of 2005, Kyle went though physical therapy treatment where he currently attends school at the Abner S Baker Central School, 300 Lake St. He stopped doing his therapy at the school shortly after that, but his mother said he is non-stop active when he does therapy at his home. He practices walking, squatting and bending every day. Kyle still uses the aid of a cain when he walks. Angela and Kyle run through several exercises to get his body working and adrenaline running. Kyle loves walking on the treadmill and even does inclined sit-up's until his stomach burns. The biggest challenge for Kyle's family has been rebuilding his memory. He knows the answers to many of the questions his family asks him, but sometimes the words can't come out. "It was almost like he lost his entire vocabulary," Angela said. "We have had to re-train his brain to work and remember things again. We have to teach him everything he used to know." Because of his stroke, Kyle is also legally blind in his right eye. The right side of his body received the most damage due to the stroke taking place on the left side of his brain. The optic nerve above his right eye was so close to his brain that the stroke impaired the vision there and peripheral vision in either eye is also gone. While Kyle might have successfully and heroically overcome the stroke, Angela said he is also more susceptible for another stroke in the future. Even that won't keep the family from forcing a smile and living life as it presents itself every day. The Hopkinses were given someone beautiful: their son. "Kyle still loves going to school, and he wakes up every day with a smile," Angela said. "He will never quit." Angela described the stroke as a silent killer because by the time you figure out what is happening, many times a person will already be dead. Kyle's 8-year-old brother, Mason, thought his brother had died after the stroke. "I think we have come to better understand how fast you can lose someone you love," Thomas said. "This was a life-changing event for all of us." The support through many of the Hopkinses' friends helped them pull though the event a little more easily. Angela said one of Kyle's friends, a boy named Justin, came to see him in the hospital all the time. Justin would sit with Kyle, hug him and talk to him; keep him in good company. When a doctor asked if Justin was Kyle's brother, he said with tears in his eyes, no, but he wished he could be. He would give anything to be his brother. Kyle's situation was so rare, Angela explained, but the problem was meant to be found. "We want everyone else to know that as healthy as children can be, things can happen in a split second," Thomas said. "If a child has a headache or a loss of vision or a stomach ache, don't take any of those situations for granted. You never know if something like this could happen to your own child." Angela and Thomas know Kyle is supposed to be in this life for a reason, and they just have to figure out what that reason is. Through Kyle's fight, will, determination and love, he was able to pull though his struggle with death. He is a miracle child and all his dreams are still with him at the end of the day, Angela said. "He still wants to be a normal boy," she said. "He wants to be the boy he used to be." {SECTION}-- Contact Cameron Mathews at business@fmtimes.com .

One of our early members, Janice, died on Tuesday 9/4/2001. She was the first person that I knew of on the message boards who had ever passed away and it was so sad. Janice's family wore Cushing's awareness ribbons at her funeral. They chose the blue and yellow colors of the website and message boards. Later on, when the first CUSH pins were designed, they were copied from Janice's Cushing's awareness ribbons but it was easier to get half one color and half the other instead of both colors on each side.

I finally checked on this. The answer is: And there are stamps in other denominations besides the new (starting Sunday) 39 cent stamps. There are also 6 other denominations available. Even though it said that these rates would be udated yesterday, I don't see that it's been done yet.

from http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=305108&in_page_id=1774 Warning over 'wonder cures' for eczema Parents risk harming their children because of misinformation about the best treatments for eczema, experts said today. While some parents turn to herbal lotions of unknown quality to treat their youngsters' skin, others are shunning prescribed steroid creams because of misconceptions about the side effects, a meeting of dermatologists was told. Dr Sue Lewis-Jones, a specialist in paediatric dermatology from Dundee, said a network of nurses focusing on the management of childhood eczema and other skin problems was urgently needed. She said that a lack of money and focus on the speciality was to blame for the small number of nurses working in this area. "These nurses can help parents manage their children's condition, keep an eye on their progress and lead to fewer admissions to hospital."But there is no money for it. "It is an obvious thing to do and it would ultimately save the NHS money," Dr Lewis-Jones said. The consultant dermatologist, speaking at the British Skin Foundation meeting in central London, also highlighted concerns about parents opting for herbal Chinese remedies to treat their children. She said there were examples of companies springing up promising "wonder cures" for eczema and psoriasis. "There are lots of reputable companies and there is no reason why some remedies shouldn't work because most medicines originally came from plants. "But the problem is that we don't know what part of the plant is having the effect and there is less known about the side effects."With modern medicines much more is known about the side effects. "Some people out there just want to make money and will dishonestly promote small pots of cream that cost £30 each," Dr Lewis-Jones said.She said that these creams often contained hidden steroids which produced the desired effect and led patients to believe the treatments were working. But this led to the danger that young children could be exposed to very strong steroids normally only given to adults. Dr Lewis-Jones said she knew of a case where a parent had used a very strong steroid called Dermovate which was bought from Hong Kong to treat her 12-year-old's psoriasis. Although the product was clearly labelled, the mother used the cream on her child for 18 months without knowing the dangers of such heavy steroid use. The girl went on to develop Cushing's Syndrome which leads to weight gain, thinning of the bones and blood pressure problems and is caused by too many steroids. The condition can cause patients to collapse and die and the child had spent three weeks in hospital while she was treated.But Dr Lewis-Jones said under-treatment was a much more serious concern for children with skin conditions. She said research had shown that three-quarters of parents were worried about using steroid creams on their children and a quarter stopped using them all together. They were apparently concerned about products would thinning the skin with some even believing they would lead to muscle development such as that seen in bodybuilders who abuse steroids."The thing about eczema is that we can get it under control and are not going to have to use steroids for very long. "There is also widespread ignorance of the public and health professionals about the use of steroids but they are a life-saver for people with eczema," Dr Lewis Jones said. One in three-children under the age of three-and-a-half suffers from eczema. Psoriasis is also very common, affecting 1.2 million people in the UK. Dr Colin Holden, trustee of the British Skin Foundation, said: "The number of people suffering from skin disease is increasing every day."It's vital we keep investing money in life-changing research."

Yes, Cathy, that's right. They're actually from stamps.com. Stamps.com started making photo stamps ( http://photo.stamps.com ) and Cafepress, as I understand it, got stamps.com to allow the cafepress members (including us Cushies) to be able to use images instead of just photos. So, that was where I came in with the image for the stamp. They are available now, if anyone is interested. If anyone wants, they can look into the process of getting official USPS-issued stamps, but I'm sure that there's a ton of paperwork and time involved in that project. From http://photo.stamps.com/PhotoStamps/learn-more/real/ :

I'm going on vacation August 20, so there will be no deliveries of wristbands between August 20 and September 6. Of course, you can still order, but they won't be shipped until I get home. Also, there are only 5 left of the yellow large, and 6 of the small blue bands. I don't think I'll be ordering any more, so if you want these, act quickly Should I ever place another order for these, they would probably be blue large and medium.

Now that I have the hang of this on the new boards, I was thinking of having a smilier thing for a quick way to identify us. I was thinking of having Recurrence; Post-op; diagnosed but no surgery yet; not yet diagnosed; friend / family Any thoughts on this?

The gender thing is ready, although this time, if your gender isn't listed, I'm not finding about any more! This works the same as the flags. You on't have to choose anything, if you don't want, but if you do: Go into "My Controls". Click on edit profile. At the bottom is a dropdown list of some of the two genders. At some time, I might use smaller images - some of these info boxes on the left side are getting pretty big!

And now they're back, on this new board. People who did this before should have their original flag back. If you've moved, you'll want to change your flag As always, if your country is not listed, post it here and I'll try to get it for you.

Well, I have no idea who worked on it from the stamps.com side, but I'm the one who did the Cushing's version. So... you're welcome

These will be in the regular Cushing's Store. $2.00 of each purchase will go the the running of these boards and the rest of the websites. The stamps will come in sheets of 20. This Custom Postage cannot be purchased or shipped outside the U.S.

Here are the size ranges: Apparel White & Ash Grey T-shirt, Long Sleeve, Sweatshirt, Tank Top, Baseball Jersey, Ringer T, Golf Shirt, Men's Sleeveless T-Shirt, Value T-ShirtSize Chest (inches) Small 34-36" Medium 38-40" Large 42-44" X-large 46-48" 2X-large 50-52" 3X-large 54-56" 4X-large 58-60" Fitted T-shirt - Made in U.S.A. Organic T-shirt Size Chest Length Small 36" 27 1/8" Medium 40" 28 1/8" Large 44" 29 1/2" X-large 48" 30 1/2" 2X-large 52" 31 1/2" 3X-large 56" 32 1/2" Women's Junior Apparel Jr. Ringer T-Shirt, Jr. Baby Doll T-shirt, Jr. Spaghetti Tank, Jr. Raglan, Jr. Hoodie and Camisole This item fits snug and sizes run small. Order a larger size for a looser fit. Size Bust Waist Hips Dress Size Small 30-32" 25-26" 35" 0-2 Medium 32-34" 27-28" 37" 4-6 Large 36-38" 30-32" 40" 8-10 X-Large* 40-42" 33-35" 42" 12-14 Sizing is always controversial when it comes to women's T's. Classic Girl by American Apparel is not a "junior's" line. It is designed for women of all ages who desire a youthful fit. Because their fabrics are stretchy (especially their Baby Rib, which has a stretch factor of over 100%), each size can fit a wide range of women. * Not available in all styles

Erin, I'm not sure what size you need, but the white shirts come in this range: Available Sizes: KS, KM, KL, S, M, L, XL, 2XL, 3XL, 4XL Yellow Available Sizes: S, M, L, XL, 2XL Ash grey Available Sizes: S, M, L, XL, 2XL, 3XL Green (we don't have any shirts in this color, but they could be made if anyone is interested) Available Sizes: M, L, XL, 2XL Pink (we don't have any shirts in this color, but they could be made if anyone is interested) Available Sizes: S, M, L, XL, 2XL If you wanted, say, a white shirt but wanted a saying that's not on the white shirts, let me know, and I can have that changed

It absolutely amazes me. I went to a whole lot of trouble putting up a new membermap for the boards, as of this writing 29 people read the post about it and not one said it looked good or thanks, or acknowledged that it was even there - although 2 people added their info to it. At various times people have said that they'd like this feature. Guess they changed their minds. Lots of people email me asking for help, information, asking me to do things for them, but so few rarely take the time to ask if I'm ok, to say that they noticed I hadn't posted here on the boards for weeks, hadn't been in the chat. When the site's birthday rolled around last week the responses were fewer than for many people's birthdays. This site, which is supposedly so helpful to many wasn't worth a word or 2 of congratulations. I know if I post this on the boards, people will rally around for a day or so, then I'll go back to being invisible, the one who is supposed to do all the work in the background, but who is always supposed to be "ok", to never have any problems, to never need any kind words or help or support herself. Whine, whine, whine. Guess it's time for a little wine, wine, wine!

You'll be in this area in a couple hours, then. Woo Hoo! Please remember to call. No signs of any hurricaines here, yet. We had some rain on Friday night, but nothing serious. Yesterday was beautiful and today looks even better, just because it's a bit cooler. Sounds like your family is suffering from serious issues, too, but it's time to take care of YOU and get you on the road to recovery. Talk to you soon.

(((Sherry))) No one here is sick of you! I hope you get some answers soon! Hugs, Mary

What questions do you have about what to expect? I've spent a LOT of time at NIH and can probably answer most of them. So can others who have been there. Myra was just there last week - she usually comes to the chats, so if you come tonight, she might also and the two of you could talk. I have a Music Camp at my church that I have to play for next week, in the afternoons. Since you're going to be at NIH for 2 weeks, I'll probably come the second week, if it's ok with you. I prefer to come in the afternoons to avoid rush hour traffic, and the testing at NIH and doctor visits are usually in the morning (but not always) so the afternoons usually work out better for me. If you find that you'll be leaving sooner, I'll try to come one of the mornings instead, or over the weekend. My number is 703-378-6805. Please call when you get there to leave your room phone number and your room number. If I'm somehow not here, we always have an answering machine on. I also have a cell phone, number 571-239-7352. Looking forward to talking to you and meeting you soon!

Making a comment

And did Christy get this from elsewhere, too? LOL I was thinking that this, or something similar, might be good to put on the boards as a kind of "getting to know you" thing. Thoughts?

Unfortunately, I can't change the numbers on a poll. That would be too much like some real elections we've had recently!

I'm not quite sure to post this, so it will probably be in a couple different places I want to thank the people who generously contributed so that NIH visitors could get Cushie wrist bands. I delivered the first of them last week to Myra B, Lisa J and to the chaplain on the floor. He came in while I was waiting for Myra, was new to NIH and new to Cushing's. I figured he could learn a lot from the included pamphlets and maybe understand his patients a little better as he talks with them each day. I also left a "package" with Myra to give to another Cushie on their floor who I hadn't met but both Lisa and Myra knew. So, I distributed the first 4 of the Cushie bands...so far, and I thank you for your generosity in doing this for them. In addition to the awareness bands, each bag includes a CUSH brochure, my own brochure (the same as I send out with the regular awareness bands), and a Cushings-Help business card. Each of my brochures was edited to include the name of the person who donated the bands, so that the patients will know that there's another patient out there who did this for them. Thanks again - you made several Cushies smile last week!

Just trying to get an idea which skins people like best (or don't like at all!)

Done with this one, I think! Whew. Then, there are 2 more and I'll be done for the time being, unless there are any requests.

Darn! Looks like I need some new images for the blog om Skyscape: e_pub.gif. p_sendtb.gif, p_draft.gif and p_lock.gif

Thanks for the responses, Adrienne and Cristy. I've always wanted a blog and even set up one elsewhere, but never found the time or the energy to actually write anything in it, so it went by the wayside. This is a bit easier, since it's right here, where I am most of the time, anyway. Thanks for the positive comments! This disease is so terrible, b ut no one can see how badly we're feeling. Since I had my surgery so long ago, everyone assumes that I'm ok, recovered, that Cushing's is behind me. That's one of the good things I'm finding out about these Cushing's awareness bracelets - people are asking me what they mean and I can educate them about Cushing's. No one ever asked me what was on my Medic Alert bracelet. LOL In just the last 5 days, 6 people have asked and learned a bit about this who wouldn't have had a clue otherwise. Anyway, one more piano student for today and then NAPTIME! Sometimes I think that my life is little bits inbetween long naps. Swell fun....NOT!