Charlotte's Story

Charlotte's World

Charlotte's Room

Her Dog Beau

Online Support Group

The Bartter Site

The Bartter Site has loads of information on these syndromes.

 

This website is dedicated to my daughter Charlotte. She has a rare kidney defect,
Bartter's Syndrome
that causes her to lose potassium and magnesium. If you are looking for more information on Bartter's or Gitelman's Syndrome, you will find it here.

In the beginning, there was Charlotte, and she was such a beautiful baby! Now, you're probably thinking, all babies are beautiful, and I agree. The wonder of new life is beautiful. But I mean Charlotte was beautiful in the traditional way, cute and pretty. She had ivory colored skin, rosy cheeks, and a perfect tiny cupids bow mouth. She looked like a doll, and I actually dressed her in dolls' clothes a few times. She was very much a wanted baby. We were surprised to discover we would be parents, but most of all, happy and excited. I was careful about what I ate while pregnant, and never took any medications of any kind, not even over the counter drugs. As an infant she was a pleasure to care for, smiling, making eye contact and babbling with everyone. She giggled delightfully when put to sleep in her crib, she seemed comfortable in this world. Our next door neighbors, parents of eight children, asked in a disconcerted way, why they had never heard Charlotte cry? Because Charlotte rarely cried, that's why. As a toddler, she was even more delightful. She was happy as always, friendly, outgoing and charming. She made friends before she could walk or talk. When we took her to parties she would make friends with adults and engage them in games. People found her irresistible. We were amazed, both her father and I were extremely shy as children. My labor had been long and difficult, and the doctors warned us Charlotte might have suffered some brain damage. We naturally hoped not. Certainly her personality gave us reason to think she would be fine. I taped a progress chart on her bedroom wall to mark off typical development points, rolling over, sitting up, etc. Months and months went by with nothing to mark on the chart so I eventually removed it.

In spite of her delightful personality, she was not developing at a normal way. At two and a half years old, our HMO sent her to a neurologist who was very discouraging. The doctor was one of the few people who ever met Charlotte and was not enchanted by her. The doctor made Charlotte cry in less than two minutes, a record for sure. Once again we hoped it wasn't true. This doctor predicted that if Charlotte wasn't walking soon that she would never walk. About fourteen months later, at 3 years old, Charlotte did start to walk. So the neurologist was wrong, but Charlotte does have cerebral palsy and retardation, just not as severe as the doctor predicted. Now we were left with hoping she would be mildly affected instead of severely. It has been heartbreaking for us, but not for Charlotte. She continues to be the happiest child we (and all our relatives) have ever known. She rarely cries, and is still outgoing and charming. Charlotte was enrolled in preschool for handicapped children when she was 2 years old, run by the public school system at no cost to us. We took her to speech, occupational, swim therapy; summer camp for handicapped children and therapeutic horseback riding regularly. She has always enjoyed all of these activities, happily participating. Often she objects when the sessions end. We always felt her general physical health was very important, and tried to feed her a truly healthy diet. We consistently prepare home cooked meals with fresh vegetables, and often snack on cheese and fruit. During Charlottes' preschool years, she was thin but not sickly. She was a light and picky eater, she ate a good variety of foods and never cared much for sweets. She grew so slowly in her preschool years she was able to wear some of her clothes for three years in a row. Go to a dog story diversion.Woof woof
All about her doggie :)

Knock Knock, what's behind the door?

Go ahead, see what's behind the door.

 

 

Charlotte has had many vague symptoms since her diagnosis with cerebral palsy:

 
  • muscle weakness
  • cramping of her hands
  • stiff ankle posture
  • episodes of shakiness
  • episodes of confusion
  • constipation
  • poor appetite
  • stunted growth
  •  

    These things were all attributed to the cerebral palsy. When she was 8 years old we noticed she was holding her ankles stiff and straight, with her toes pointed. She wouldn't bend her foot in a normal 90 degree angle. The orthopedic specialist prescribed braces for her to keep her foot in a normal posture. We all thought this was due to her cerebral palsy.

    Despite a healthy diet, Charlotte seemed to get sick often. She had frequent strep throat infections. We would take her into the pediatrician and get antibiotics. Half the time we would go through the whole prescription and she would still be sick. Then we would have to get another prescription, a more expensive type, and give her that too. A single infection would drag on for weeks.

    Then when she was 9 years old, she got mono induced tonsilitis. Her throat hurt her so much that she wouldn't eat. And after a few more days she wouldn't drink anything either. That week we took her to doctor twice and consulted with him by phone three times. He tried three different combinations of prescriptions to bring her some relief and get her eating and drinking, but nothing worked and she got worse. Finally, he told us he could do no more, we would have to take her to the emergency room. So, early Saturday evening we went. The doctor we got didn't seem to understand how sick she was. She hadn't eaten five days and hadn't drank anything in twenty four hours. Yet Charlotte is not a crybaby, she was calm as she was examined and waited. We were there for hours waiting. They wanted her to try to eat a popsicle. I tried to explain she had never eaten one, and didn't like them. I guess they thought I was a mean Mommy and wouldn't let her have a treat. After five or six hours, the doctor told us he was going to send us home. She had never even been given an IV. We had to call the pediatrician at eleven thirty on a Saturday night and explain to him what was happening. He called the ER and requested that Charlotte be admitted, finally they put her on an IV. In a matter of minutes her color improved and she fell asleep. She was there for six days before she finally started to eat. She lost a lot of weight, since she had been thin to begin with this illness left her skeletal. A friend who came to visit said she looked like a concentration camp victim. She did, you could see every bone in her body, (half way through her hospital stay they moved her to intensive care and put her on a heart monitor, because her potassium was so low).

    More of her story on
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