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	<title>HowIWasCured.com &#187; Children</title>
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		<title>Matthew&#8217;s Story</title>
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		<pubDate>Tue, 19 Jan 2010 22:10:55 +0000</pubDate>
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				<category><![CDATA[Children]]></category>
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		<description><![CDATA[My son was born nine years ago. He was always different from other children, even from birth. He was colicky for four months, crying inconsolably every day for hours on end. None of the standard calming techniques worked. Matthew couldn't even ride in the car seat.


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<p><img src="http://howiwascured.com/media/2010/01/autism-matt-savage.jpg" alt="" title="autism-matt-savage" width="300" height="225" class="alignleft size-full wp-image-942" /><strong>by Diane Savage</strong></p>
<p><em>Diane Savage&#8217;s son, Matt, is a highly accomplished professional jazz musician, with many public appearances and several CDs to his name—and he&#8217;s not even a teenager yet! Matt (who was born in May 1992) lives with his parents and his sister in Massachusetts. This story was written in September 2001.</em></p>
<p>My son was born nine years ago. He was always different from other children, even from birth. He was colicky for four months, crying inconsolably every day for hours on end. None of the standard calming techniques worked. Matthew couldn&#8217;t even ride in the car seat like most children—he would scream hysterically until we stopped and took him out of the seat. As you can guess, we never went anywhere. Changing diapers and giving baths were traumatic. All Matthew wanted to do was to nurse, in the dark, with nothing going on around him. He was very jumpy, never slept, and was very fussy. He would line up toys and do things over and over again. He would be traumatized if one of his rituals could not be followed exactly as he expected it should be. He always walked (actually, ran) on his tiptoes, turned his head sideways, and waved his arms. My husband and I couldn&#8217;t understand how other parents could just let their children loose to play nicely with other children. Our son would not play with others. He&#8217;d usually be dismantling something he shouldn&#8217;t be touching, or running away from any sort of interactive experience. Every outing ended in a tantrum. What misled us was the fact that Matthew had an extensive vocabulary (because he was echolalic), he was reading everything in sight (because he was hyperlexic), and he was highly intelligent. We thought his hyperactivity and distraction were due to his constant curiosity about how things worked.</p>
<p>Matthew was extremely defensive in response to sensory input. We couldn&#8217;t watch television when he was around. Vacuum noise, popcorn poppers, any unusual sound would cause him to cover his ears and become agitated. He was also tactilely defensive and highly perseverative. His saving graces were his hyperlexia and extreme intelligence.</p>
<p>Needless to say, my husband and I searched for answers. We were told that Matthew had pervasive developmental disorder (PDD), possibly Asperger syndrome, with hyperlexia. After contacting the Autism Support Center for information, we followed through with extensive research and got into the “parent network” to find the best help for our son. Fortunately, we found a wonderful program for him, and he has blossomed in the years since his diagnosis. He has had the benefit of private speech, occupational, and psychological therapy, in addition to an excellent school environment flexible in balancing mainstreaming with separate classroom situations. You&#8217;d never know this was the same child.</p>
<p>One thing that was difficult for us was that although as a young toddler Matthew seemed to enjoy singing and quiet music, he lost this ability at approximately 18 months of age. He couldn&#8217;t tolerate listening to music in any form and wouldn&#8217;t sing. We couldn&#8217;t sing “Happy Birthday,” listen to music, or sing songs with him the way we used to. When he was approximately four years old, we heard about a controversial therapy called auditory integration therapy (AIT), created by Dr. Guy Berard in France. We spoke with many people about it, and came to the conclusion that it certainly wouldn&#8217;t hurt for us to try it on Matthew, and it might possibly help. We had heard of other children who had shown positive results, ranging from speaking to focusing better to being less hyperactive. There was an individual who performed this treatment locally, so we decided to try it. Matthew had all of the classic symptoms of a child who might be helped by AIT, including extreme sensitivity to sounds and sensory defensiveness.</p>
<p>Even during the treatment, we noticed immediate and dramatic changes in Matthew. By the time he had completed the ten-day treatment, Matthew noticed the world around him &elip; the sound of birds singing, the hair on my husband&#8217;s arm, plants in the garden, the texture of our carpet. Even more miraculously, his sensitivity to music and voices was greatly reduced. Suddenly, he was singing, loved math, and started asking questions! He had never asked questions before. He started making great strides in his development. We had not told his teachers that he had received the therapy, but suddenly we were receiving reports of new things Matthew was accomplishing. We were thrilled.</p>
<p>Not long after this, we started looking for other “nontraditional” therapies. We ordered a copy of the Defeat Autism Now! Protocol, and started testing for things like allergies, heavy metals, yeast, and intestinal problems. Matthew had always been very small for his age and had had constant diarrhea. We found several things we were able to address, including leaky gut problems, allergies, yeast, and absorption problems. We completely revamped his diet to become wheat-free, dairy-free, dye- and chemical-free, and as organic as possible, and we eliminated foods to which he had shown an allergy. We saw immediate results. Within 24 hours, Matthew started writing. He had avoided it entirely before this because it was so difficult for him. Now he was writing whole sentences, drawing pictures, and just HAD to get things down on paper, especially anything related to mathematics. Matthew started taking special supplements and vitamins to give his body what it needed: nystatin to combat systemic yeast, Super Nu-Thera (a B6/magnesium supplement created by Dr. Bernard Rimland and sold by Kirkman Labs), Creon5 (an enzyme) to help him break down food, and lots of other vitamins prescribed to him by his doctor. He started making even more progress. He had better eye contact, more energy, normal digestion, more desire to interact, and better focus. The only thing that was difficult initially was Matthew&#8217;s adjustment to the changes in his body. Once he adjusted, the results were more and more positive.</p>
<p>Now that Matthew is nine, he has come very far. We tried a second round of AIT therapy when he was almost 6 1/2 and found that he showed even more improvement. Suddenly he started playing music. He started with a toy piano, graduating to a keymonica and then to a piano. I taught him the basics and then gave him several beginner piano books. From there, he took off on his own. Before he took his first teacher-taught piano lesson, he could sight-read perfectly. He had absolute pitch, knew a great deal about piano terminology, automatically knew music theory, and could play anything “by ear.”</p>
<p>He took one year of classical music lessons, flying through books and piano pieces that normally take years to learn. He loved playing, and especially loved playing variations on the music. He would transpose the piece to another key, play improvisations, turn the music upside down and play it. We were amazed at his great flexibility, and at his ability to cross midline with his hands and cross one hand over the other with ease. These are monumental accomplishments for a child with autism. The only issue with which Matthew sometimes struggles is his fear of “making mistakes.” Sometimes he wants to avoid a piece because he looks at it and says he won&#8217;t be able to play it perfectly. We are always reassuring him that mistakes are part of life, and that if he breaks the piece down into two parts (the right hand and left hand separately), he can learn each part and THEN try playing the parts together. He has become much, much better about this, and this step-by-step approach is starting to make its way into his life in general. Breaking down a big problem into smaller pieces will always be difficult for him, however.</p>
<p>We wanted to encourage Matthew&#8217;s natural improvisational ability, so we contacted the New England Conservatory of Music and had him audition. They were amazed at his abilities and knowledge, and took him on as a jazz student for private lessons. Matthew can immediately tell the key in which a piece is written, can identify four notes played simultaneously, and plays everything from jazz to blues to classical to improv at a moment&#8217;s notice. He just loves piano. I&#8217;ve even seen him face away from the piano, put his arms back, and play a blues piece! My husband and I love to listen to him play. He has played in several piano recitals, including one for gifted and talented students. He was the first autistic child allowed to play at this particular recital. I think half the people in the audience were people who have been involved in Matthew&#8217;s life and wanted to see how far he has come.</p>
<p>Don&#8217;t misunderstand me. There are many, many difficulties with which Matthew copes every day. He still shows signs of his autism. People immediately notice him in a group! He still has inappropriate behaviors and regresses in new situations. But he is making progress. We focus on how many things he has been able to accomplish, not on the things with which he will always struggle. He made the transition to a fully mainstreamed third grade class at school last year. And although there have been a few glitches, fourth grade this year has been wonderful. Matthew LOVES school. We are very proud of him.</p>
<p>To raise awareness (and funds) for autism research and support, we put together a CD of solo piano (jazz/blues/improvisation) on which Matthew performed. The title of this first CD was “One Is Not Fun, but 20 Is Plenty.” The name was taken from a poem written by Matthew. The CD includes many elements—readings of my own poetry describing life in a “special needs family,” interpretation and performance of these poems in music form by Matthew&#8217;s professor at the New England Conservatory, readings of poems written and performed by Matthew, and many, many original piano pieces composed and performed by Matthew. It is really remarkable to hear Matthew being a child, and then hear him playing a magnificent piece. But that&#8217;s the nature of autism. Different children have different levels of abilities, and different behaviors.</p>
<p>Matthew released a second CD (and first solo piano effort). You DEFINITELY will enjoy the CD. Matthew composed or improvised ALL of the piano pieces on it except for three tracks. The name of the new CD is “Live at The Olde Mill.” It was recorded in two parts. The first part was recorded at a live performance given by Matthew last summer at The Olde Mill Restaurant in Harrison, Maine. The second part of the CD was recorded this past December in a studio. Matthew still sounds like a young musician; however, his emerging talent shines through and makes for a wonderful collection of music. Matthew listens to jazz and classical music constantly, and is composing increasingly impressive pieces. His most recent ventures have been into the world of jazz ensembles. You need tremendous awareness of other people and subtle interpersonal communication skills to play in an ensemble. Matthew is already making great strides. He is truly gifted — gifted beyond imagination.</p>
<p>The most recent news is that Matthew has started his own trio, The Matt Savage Trio. It is composed of two adult sidemen, John Funkhouser on bass and Steve Silverstein on drums. Both men are accomplished, world-class musicians who teach as well as perform.</p>
<p>The Matt Savage Trio has recorded their first CD as a group. It is entitled “All Jazzed Up,” a name taken from one of Matthew&#8217;s original compositions. It is a professionally recorded live performance by the trio during August of 2001 at The Deertrees Theatre in Harrison, Maine. Most of the pieces on the CD are original compositions by Matthew, although there are tunes by Charlie Parker, Miles Davis, and Billy Strayhorn. It is unbelievable to witness Matthew&#8217;s musical accomplishments over such a short time.</p>
<p><em>Update:</em></p>
<p>Matthew is almost 11 now. He continues to make daily progress, and I believe his music and the experiences he is having because of his music have contributed to this progress. He is still taking his vitamins and supplements and is starting to grow and put on a little weight, although he is still small for his age. He is also still on his GFCF diet, although we allow a bit more flexibility now as his most recent allergy tests indicated a great reduction in allergic reactions to foods. He is also getting stronger, and is more coordinated. He is able to do many things he wasn&#8217;t able to do even a year ago, such as ice-skating. At the same time, he is beginning to show signs of preadolescent angst and emotionality.</p>
<p>Matthew is still the leader of his own trio, The Matt Savage Trio. And they have recently released their third CD, entitled “Chasing Your Tail.” It was recorded at a live concert and contains mostly original material written by Matt.</p>
<p>We take everything on a day-to-day basis, and do NOT push the music. Matthew makes all of the decisions about where and when he performs. And I limit his travel. I believe that being with family is more important than performing gigs for both him and us! But we do encourage him and support him. We also encourage and support our daughter. I believe that both of our children are thriving because we love them no matter what they do, we accept them for who they are as individuals, and we listen to them. We listen to their needs, their fears, and their dreams, and help to guide them along their path. But we let them set their path, as winding as it may be.</p>
<p>You can order the group&#8217;s newest CD (or any of Matthew&#8217;s CDs), learn more about Matthew, or find out where Matthew is performing by visiting our website: <a href="http://www.savagerecords.com">http://www.savagerecords.com</a>.</p>
<p><em>Second Update:</em></p>
<p>Matt has continued to thrive, as he has continued using the Defeat Autism Now! Protocol. He is still on the GFCF diet and still takes supplements such as Super Nu-Thera and other vitamins to help him maintain his health and energy level.</p>
<p>He continues with his love of jazz, performing worldwide and traveling.</p>


<p>Related posts:<ol><li><a href='http://howiwascured.com/general/angies-story-of-coping-with-ms/' rel='bookmark' title='Permanent Link: Angie&#8217;s Story of Coping With MS'>Angie&#8217;s Story of Coping With MS</a></li>
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		<title>I Love My Scoliosis!</title>
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		<pubDate>Thu, 06 Aug 2009 03:11:06 +0000</pubDate>
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		<description><![CDATA[“I love my Scoliosis!” I bet you don’t hear that everyday. Well, I do. Having Scoliosis is the best thing that has ever happened to me. I know right now you are probably thinking, “Who is this kid?” and “How can she possibly like having Scoliosis?”


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<p><img src="http://howiwascured.com/media/2009/08/emily-scoliosis-300x225.jpg" alt="emily-scoliosis" title="emily-scoliosis" width="300" height="225" class="alignleft size-medium wp-image-593" /><strong>by Emily</strong></p>
<p>&#8220;I love my Scoliosis!&#8221; I bet you don&#8217;t hear that everyday. Well, I do. Having Scoliosis is the best thing that has ever happened to me. I know right now you are probably thinking, &#8220;who is this kid?&#8221; and &#8220;how can she possibly like having Scoliosis?&#8221; So let me introduce myself.</p>
<p>My name is Emily and I am 16 years old and had surgery at the age of 13. Scoliosis is not uncommon in my family. In fact my younger sister, Audrey, who is 18 months younger than me, also has Scoliosis. Her story was not as dramatic as mine. She knew about hers since she was six years old. Mine, on the other hand, couldn&#8217;t of come at a worse time.</p>
<p><em>The News</em><br />
June 24th, the day I had been waiting for. It was the day I was finally able to graduate the Junior High. I only had two things planned for that day. One to graduate, and two, to go to Children&#8217;s Hospital San Diego for a doctors appointment for my back. I never thought that I would have Scoliosis. The thought never even crossed my mind. I thought that they would tell me to go to the Chiropractor since I was experiencing pain around my shoulder blade. When I arrived, the doctors took x-rays and had me bend down and touch my toes. After that I waited in a room for a while. When the doctors came in, the look on their faces didn&#8217;t look like they were bringing good news. They told my mom and I that I had a 43-degree thoracic curve and I needed surgery as soon as possible. The news hit me hard. I remember going home and thinking how can this happen to me? What did I do to deserve this?</p>
<p>The next day my mom decided to take my sister in to be re-x-rayed because she had not been to the doctor in over 6 months or wearing her Boston Brace. After x-rays it was revealed that my sister&#8217;s Scoliosis had progressed to a 43-degree thoracic curve also. She too would need surgery as soon as possible. My sister and I tried our hardest to get our mom to postpone the surgery. But with no luck she scheduled the surgery dates the next week. I was to go in August 18, 1999, and Audrey August 19, 1999.</p>
<p><em>Pre-Surgery</em><br />
Since we only had a little over a month until the surgery, it seemed like we were at the hospital everyday. Between giving blood and running tests, my family received a very important phone call. One that would not only make an impact on our surgery but on our lives as well. My Doctor had reviewed mine and my sister&#8217;s case. He said that we were perfect candidates to have a new Thoracoscopic surgery. Instead of cutting all the way down the back, he was going to make 6 tiny incisions (about 1.5 cm big) and go in through the side. If this surgery were to be done, my sister and I would have a quicker and less painful recovery. With that in mind, we jumped at the chance to have this new type of surgery. Now it was only a matter of time until the big day.</p>
<p><em>Surgery Day</em><br />
Surgery day I woke up at 5:00 in the morning to be to the hospital at 6:00. When I got there, they weighed me and took my blood pressure. Then my family and I went into a small waiting room to wait for the doctor. When my Doctor arrived, he reviewed what the plan was. After that a very nice nurse walked me into the operating room. I was surprised that they didn&#8217;t wheel me in. She said that since I was so calm I could walk in. I hopped onto the operating table and the next thing I knew I was lying in the Recovery Room. Audrey&#8217;s surgery went excellent as well. The hospital managed to get a big room for Audrey and I to share. I found it much easier to go through since I had my sister right by my side. Whatever pain I felt, she felt and it became easy to sympathize with her. We had fun bugging the nurses and doctors from time to time and joked that we should get a two for one discount!</p>
<p><em>Results</em><br />
I can&#8217;t believe how much Scoliosis has changed my life. It let me meet wonderful people that I will never forget. From nurses and other kids going through the same experience my sister and I went through, the Scoliosis has done so many things for me that I will never forget. From this I have started Volunteer work at Children&#8217;s Hospital and set my goals on becoming a Pediatric Orthopedic Surgeon. It helped me develop a closer relationship with my sister. We have learned that we can depend on each other when we need it the most and have become best friends along the way. I thank my Doctor for giving Audrey and I the chance to have this wonderful surgery. He is not only a good doctor but also a good friend. Because of this new surgery and the positive experience I had, I am truly proud to say, &#8220;I love my Scoliosis!&#8221;</p>


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		<title>Starting My Period</title>
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		<pubDate>Thu, 06 Aug 2009 02:59:33 +0000</pubDate>
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		<description><![CDATA[I really think I’m a lucky girl. Well, you see, I can talk to my mom about anything and she really makes a point of explaining things to me. I don’t get embarrassed at all… and neither does she. When I was ten years old, she told me about starting my periods—this is called ‘menstruation’.


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<p><img src="http://howiwascured.com/media/2009/08/young-girl-on-hardwood.jpg" alt="young-girl-period" title="young-girl-period" width="298" height="289" class="alignleft size-full wp-image-587" /><strong>by Britney Davidson</strong></p>
<p>I really think I&#8217;m a lucky girl. Well, you see, I can talk to my mom about anything and she really makes a point of explaining things to me. I don&#8217;t get embarrassed at all&#8230; and neither does she.</p>
<p>When I was ten years old, she told me about starting my periods&#8212;this is called &#8216;menstruation&#8217;. She said straight away that I mustn&#8217;t be frightened by anything she was going to tell me because it&#8217;s all perfectly natural. Girls can start having their periods when they reach the age of about eleven years, though they can begin slightly earlier than this, or they may not begin until as late as sixteen years.</p>
<p>She explained that when girls start having periods it is all part of growing up and becoming a woman. What happens is that about once a month various changes take place inside a woman&#8217;s body. These changes are brought about by substances called hormones. Hormones are released by certain glands in your body, pass into your bloodstream and cause your period to begin.</p>
<p>The main thing you&#8217;ll notice is that for a few days each month you will lose a little blood from your vagina (the opening between your legs, near where you do a wee). I know this sounds really scary, but honestly it&#8217;s not as awful as you think. The hormones I told you about just before cause the inner lining of your uterus (at the top of your vagina) to come away down your vagina. This is your period or it can be called menstrual bleeding.</p>
<p>Don&#8217;t worry about the blood making a mess on your clothes. All you have to do is put a special little pad called a &#8216;sanitary towel&#8217; inside your knickers and that catches the drops of blood. You will need to replace the pads a few times during the day and at night but it really isn&#8217;t a problem.</p>
<p>If you want, instead of a pad, you can use a tampon made of cotton wool inside your vagina to absorb the blood. You put the tampon into your vagina &#8230; your mom may be able to show you how to do it &#8230; or just follow the instructions on the packet. You need to change your tampons regularly, though. It&#8217;s really very simple and doesn&#8217;t hurt at all. You will quickly learn the knack of putting it in correctly.</p>
<p>It&#8217;s entirely up to you whether you want to use pads or tampons. Some girls wait a few years before they try tampons &#8230; it really all depends how you feel about using them and also how active you are. For example, you may not realise it but tampons mean you can go swimming! There&#8217;s no problem &#8230; the tampon stays inside your body and it won&#8217;t leak.</p>
<p>When you want to take out your tampon just pull the little string that hangs outside of your body and it will come out easily. It&#8217;s fine to flush it down the loo, but don&#8217;t do that with a sanitary towel because it could block the loo &#8230; wrap it up and put it in a bin.</p>
<p>When you have your period you might get a bit of tummy ache, a headache or feel a bit yucky. Not everyone feels like this &#8230; you might not notice any difference at all. But if you do, ask for some painkillers or have a lie down in a warm bed and you will start to feel a bit better.</p>
<p>You may also find that for a couple of days before your period starts, you feel a bit ratty or fed-up &#8230; this is called &#8216;pre-menstrual tension/syndrome&#8217; or PMT or PMS for short. Don&#8217;t panic because it&#8217;s entirely normal and as soon as your period starts, you will feel lots better.</p>
<p>Last week I had a sleep-over at my house. Amy and Sarah came to stay. We had a great time playing CDs and trying out my mom&#8217;s make-up (with permission of course!). During the night, Amy woke me up. She was crying because she had a bit of blood on her nightie and down her leg. She thought she was really poorly. I felt so sorry for her because her mom hadn&#8217;t explained to her about periods. She didn&#8217;t know that she had just started her first period.</p>
<p>All I did was tell her not to be scared and explained about starting periods and that I had already had a few of them. She stopped crying then and calmed down a lot. I gave her some of my sanitary towels to be going on with until she got home.</p>
<p>I don&#8217;t know why Amy&#8217;s mom didn&#8217;t tell her about periods like my mom did. If you know what to expect and are prepared, you won&#8217;t have anything to worry about.</p>


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		<title>My 2-Year-Old Has Addison&#8217;s disease</title>
		<link>http://howiwascured.com/children/2yearold-addisons-disease/</link>
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		<pubDate>Sun, 26 Jul 2009 02:37:59 +0000</pubDate>
		<dc:creator>Admin</dc:creator>
				<category><![CDATA[Children]]></category>
		<category><![CDATA[General Health]]></category>
		<category><![CDATA[addison's]]></category>
		<category><![CDATA[disease]]></category>
		<category><![CDATA[hyperpigmentation]]></category>
		<category><![CDATA[icterus]]></category>
		<category><![CDATA[influenza]]></category>
		<category><![CDATA[Jaundice]]></category>
		<category><![CDATA[pigmentation]]></category>
		<category><![CDATA[toddler]]></category>

		<guid isPermaLink="false">http://howiwascured.com/?p=393</guid>
		<description><![CDATA[by Amy Orlando, Florida, United States Olivia was born Sep. 2005. She was a healthy baby, other than some short term issues with jaundice. She was a adorable baby with pale skin and chubby cheeks. At about 7 months, Olivia was rushed to the hospital and was diagnosed with Step pneumo. ( We now know [...]


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<p><img src="http://howiwascured.com/media/2009/07/080409_faith_cephus3.jpg" alt="080409_faith_cephus3" title="080409_faith_cephus3" width="320" height="240" class="alignright size-full wp-image-394" /><b>by Amy</b><br />
Orlando, Florida, United States</p>
<p>Olivia was born Sep. 2005. She was a healthy baby, other than some short term issues with jaundice. She was a adorable baby with pale skin and chubby cheeks. At about 7 months, Olivia was rushed to the hospital and was diagnosed with Step pneumo. ( We now know it was bacterial meningitis). She spent 8 days in the hospital being treated with strong antibiotics. This was in April 2006. At the beginning of June 2006 we took a family vacation to South Florida. When we came back, we noticed that Olivia was the only one who came back with a golden tan.</p>
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<p>My husband and I both got sun, but wound up peeling, and returning to our regular pale selves. I discussed her coloring with my mom and mother in law, and was reassured that we had family members that were tan as children and that it must have just &#8220;skipped generations&#8221;. September 2006, Olivia had her first seizure. We were sent to a neurologist. She was put on seizure meds and sent home. Over the next 3 months she had 3 more minor seizures. January 2007 Olivia was sick with a minor throat infection and was seen at the doctors and put on normal antibiotics. The next morning, my husband went in to check on Olivia before he left for work and to his horror, found her unresponsive in her crib at 9:45am having a seizure. We immediately called 911 and she was rushed to our local ER. After an hour of failed attempts to obtain an IV line, they decided to put an IO (large needle that looks like a spiral yard stake) into Olivias left lower leg. It took them almost another horrifying hour. After they were able to draw blood, they came back in and said that Olivia&#8217;s blood sugar was 14!!!! Yes, 14!! After stabilizing her, they transferred her to the local children&#8217;s hospital. We stayed for 8 days and she was seen by a geneticist, as well as a endocrinologist. The endocrinologist told us that Olivia had ketones in her urine and that she had ketotic hypoglycemia. After being treated for the low blood sugar, seizures, and osteomyelitis and influenza that she developed while in the hospital, we were sent home and told to follow up with the geneticist and endocrinologist. We followed up a month later with the Endo and she ran some blood work and stated that Olivia didn&#8217;t have anything that was related to what she deals with and that we didn&#8217;t need to follow up with her. =( After a few more episodes with low blood sugar and seizures, a new symptom arose. May 2007 I noticed that Olivia&#8217;s tongue had blackish blueish patches on her tongue. I took her immediately to her pediatrician, and she sent us to the geneticist. He ran several blood as well as urine test and could find nothing to explain it. At this time Olivia had been seen by 7 specialist ( pulmonologist, neurosurgeon, ENT were unrelated to her illness and she outgrew those illnesses by 18 months.) Her pediatrician was fed up and decided to send us to Shand&#8217;s at the University of Florida to see a endocrinologist, immunologist, neurologist, and geneticist. We were seen July 22nd at Shands and the geneticist there was basically stumped and we heard nothing new. He said he &#8220;needed time to wrap his brain around her case, because it was so complex&#8221;. The one thing that he mentioned that we hadn&#8217;t heard before was when he asked if she has has her adrenal system checked. We said no. He didn&#8217;t order any test other then one to check chromosomes. When we got home my mom decided to look up adrenal glands and see what they controlled. She came across something that said &#8220;adrenal disease&#8221;. There was a long list of diseases. She started at the top and clicked on Addison&#8217;s. She immediately started reading the symptoms related to it and we were on the verge of hysterics. This was the first time that we saw something that lumped all her symptoms together. By coincidence she had an appointment to be seen by her neurologist that Friday. I asked the nurse practitioner if Olivia&#8217;s seizures could be related to something called Addisons. She said, &#8220;no, I don&#8217;t think so. That&#8217;s more common in boys. Have you looked at Retts syndrome&#8221;? I left feeling discouraged and looked up retts only to be horrified that she would even mention it, when Olivia shows none of the symptoms, which include severe mental retardation. Not convinced that it wasn&#8217;t Addison&#8217;s, I scheduled an appointment with her pediatrician for the following monday. She didn&#8217;t know much about it, and in fact, had only seen one case in a child while she was a medical student! She said I should follow up with the Endo. Yeah, the one that told us she couldn&#8217;t do anything for us. I asked for a different doctor and made the first appt available. I was satisfied and was anticipating the appt.</p>
<p>Much to my surprise, I woke up the next morning to a horrible scream by Olivia. My husband ran in and picked her up. She was acting quite strange and we decided to take her to the fire dept just down the street to have them check her blood sugar. Sure enough, it was 34! They took her to the hospital where I mentioned possible Addison&#8217;s to the ER dr. He seemed skeptical until he saw her skin tone next to ours. That night, they ran a CT of her adrenal glands and that came back that they were smaller than usual. The next day they ran a blood test where they drew blood to establish a baseline cortisol level. They then put a synthetic version of ACTH into her IV. An hour later they drew it again and checked cortisol levels. Sure enough, the same endo we didn&#8217;t like came in and said that Olivia does indeed have Addison&#8217;s. We have started her on hydro cortisone pills 3 times a day and half a salt pill once a day. We are to follow up with her this upcoming week and are anxious to learn more about this disease that has caused my family so much pain. Pretty bad that it took my mom finding Addison&#8217;s online and us mentioning it to the doctor to finally get a diagnosis. We find humor in the fact that my mom found something that 5 doctors couldn&#8217;t. Even when she was seen a year and a half ago by the same doctors and she had the same symptoms!</p>
<p>Here is a list of Olivia&#8217;s symptoms:</p>
<p>Hyperpigmentation<br />
Hyperpigmentation of the tongue<br />
Low blood sugar<br />
Dizziness<br />
Muscle weakness (Especially in the abdomen and mouth)<br />
Poor appetite<br />
Seizures induced by low blood sugar<br />
Fatigue</p>


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		<title>My Poor, Sick Baby</title>
		<link>http://howiwascured.com/children/poor-sick-baby/</link>
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		<pubDate>Thu, 23 Jul 2009 09:07:17 +0000</pubDate>
		<dc:creator>Admin</dc:creator>
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		<description><![CDATA[On August 6, 2008, my 5 year old got her immunizations. By August 14th, she was extremely ill with high fever for 3 days vomiting and lethargic. We called her doctor and they said they weren't sure but it surely was not the shots. We brought her to quick care due to the severity of her fever. They really weren't sure but after a urine test said it was a urinary tract infection...


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<p><img class="alignright size-medium wp-image-98" title="sick_girl_003" src="http://howiwascured.com/media/2009/07/sick_girl_003-200x300.jpg" alt="sick_girl_003" width="200" height="300" />On August 6, 2008, my 5 year old got her immunizations. By August 14th, she was extremely ill with high fever for 3 days vomiting and lethargic. We called her doctor and they said they weren&#8217;t sure but it surely was not the shots. We brought her to quick care due to the severity of her fever. They really weren&#8217;t sure but after a urine test said it was a urinary tract infection.</p>
<p>At that point they prescribed her amoxicillin. She started to feel better. By Sept 5th she started to come down with a cough and congestion by Sept 18th she had a high fever once again with the same symptoms. We went to the Drs. They encouraged us to use Advil and Tylenol also gave us singular thinking maybe it was allergies. By Sept 29th she still was sick so back to the Drs. we went. They still weren&#8217;t sure so they said just continue with the singular and Tylenol. There were no big signs with the exception of the fever and cough no earaches or fluids in the ears.</p>
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<p>Oct 6th she is still not better. So I switch Drs and go to a pediatrician. Here they say the symptoms don&#8217;t make much sense. Cough, congestion, runny nose, fever. Eating well and sleeping OK though. So they prescribe more singular, flonase, an inhaler and Omnicef. Within 10 days she&#8217;s still not doing better so by Oct 17th we are back at the pediatricians and they prescribe Amox Tr/clav in combination with everything else. Once she finished this one she felt good for about 2 weeks and then slipped back into the fever, coughing, throwing up from coughing to hard and she said her cheeks hurt. So by Nov. 10th we are back at the pediatricians where they now prescribe Augmentin and make an appointment to see and asthma and allergy specialist in December. She finished her antibiotics but was still sick all of December which then pushed our Appt into January of this year because they cannot take any medicine before the appt. So January 6th we go and see the allergy specialist. They did the allergy tests and they came back negative and they took x rays of her chest and face. Chest was clear but around the nose area was a little gray. So this appt they prescribe Amoclan for 20 days make us rinse her nose with a saline water mixture and send us on our way. She gets a little better and February seems she is Ok but by the end of Feb. she is not feeling well again. So, I wait it out because March is a huge pollen month for us and by the end of March she is high fever lethargic throwing up again this time a new symptom is ear pain. Back to the Drs on April 6th, 09 back on antibiotics this time Suprax for 10 days and we go to see an Ears Nose and Throat Dr. With in 2 minutes of him being in there he says she needs tubes. We explain to him that this is the first time she really had an earache so why would it be beneficial to do tubes. He said it helps with the drainage but she still can get infections. We opted out of this because we felt it a rush diagnosis. Here it is she has finished her antibiotics on the 6th and by the 24th she started coughing again and now the fever with tummy issues. No earpain but this time she has a headache and the one new thing that has come up is when she scratches any where on her body her skin welts up. I want to call the Dr again but am frustrated for my daughter whom has been sick so long. They have no answers. Any ideas? Please.</p>


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