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For the next year we went through the ordeal of trying to put weight on her, while she didn't want to eat. Charlotte behaved as though had anorexia. We would prepare a home cooked fattening meal and she would eat one or two bites and stop. Sometimes she would look at the food and cry. Dinnertime was a nightmare. Sometimes we spoonfed her, even though she was nine years old. Sometimes we forced her to eat. Other times she threw herself on the dining room floor and screamed and cried. We tried to talk to doctors and nutritionists about it. The doctors had no helpful comments, while the nutritionists gave us ineffective recipes. We pleaded, cajoled, insisted, bargained and coerced her to eat. There were days when the only thing she consumed was milk, which we supplied to her heart's content. Gradually, she gained some weight. After a while she had gained enough for us to slack off some.

These are her first steps, finally at 3 1/2 years old.

Eighteen months after the first hospital stay, she got sick again. This was one month before her 10th birthday. She was vomiting continuously, and was becoming dehydrated. We thought that she needed to be put on an IV for a few hours. In the ER after asking us dozens of questions, she was put on an IV, and the doctor ordered an abdominal X-Ray. When the X-Ray results came back, the doctor came over to me and asked if I knew of any reason why Charlotte had kidney stones? This was a symptom that could not be written off as caused by cerebral palsy. The doctor released Charlotte that night and advised us to follow up on the kidney stones. The next morning, Charlotte started vomiting again, this time she was admitted to the hospital right away. They couldn't keep her potassium up, even with potassium in the IV. We went through a series of visits from several specialists. The residents came back to her room over and over again to ask me additional questions. After four days, they consulted with Childrens Hospital of Detroit, a resident doctor came to her room and told me on Friday afternoon that a specialist from Childrens Hospital was on his way to meet Charlotte, and talk with us. Knowing that he was going to come from one hospital to another to meet with a patient struck me through with terror. What could be wrong with her that would cause him to come across town to meet us?

He is Dr. Rudolph Valentini, pediatric nephrologist. He was and remains to this day a wonderful person. He was reassuring, warm and personable. He explained Bartter's to us in understandable terms. He instructed the resident doctors on what to give Charlotte and in just a few hours she was feeling a lot better. The hospital staff was amazed to see her walking, talking, playing and laughing in the halls. She was released on Saturday morning. By that same afternoon she was getting tired and by early evening she was crying and in extreme distress. She held her arms and legs like she hurt all over. We had to go back to the emergency room again. When we got there, I asked one of the doctors to call Dr. Valentini, she seemed surprised, but did it. She came back and told me how nice he was. They had decided Charlotte needed to be transferred to Children's Hospital first thing in the morning. She remained there for about a week, and was given IV infusions of potassium and magnesium. Gradually, she got better. One evening, as Charlotte and I were eating our hospital tray dinners together, she was so hungry she finished all of her food and looked for more on my tray, of course she got it. One of the symptoms of magnesium deficiency is appetite loss, so when her magnesium level come up, the result was hunger. I can't tell you how happy we were to see her with an appetite. We realized her "anorexia" was due to the magnesium deficiency. When Dr. Valentine released her after six days, he told us that she might have to return. Her improvement in those six days was so dramatic we weren't even worried about having to bring her back to the hospital.

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A year later, Dr. Valentini told us he thought she was going to have to be back in the hospital within one week of her discharge. I'm happy to report he was wrong, she had not been hospitalized since. We are very careful to make sure she gets all her medications and supplements. If she isn't feeling well, we drop everything else and take her to the pediatrician or call Dr. Valentini. It's been over three years since Charlotte was diagnosed. During that time she has been healthier in general, getting fewer strep throat infections, growing like crazy, and is back to her happy personality.

Of the symptoms listed earlier;

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

GIGGLES

ALL OF THESE SYMPTOMS have been helped by her treatment for Bartter's Syndrome. She is stronger, has far fewer episodes of hand cramps, shakiness, confusion and constipation. She has a normal appetite, and has gone through a growth spurt. The most dramatic change was in her ankle posture, as soon as she got medications for Bartter's, her ankles were relaxed. She no longer held them stiffly. On our next visit to the orthopedic specialist I explained Bartter's Syndrome to him, and told him she wasn't holding herself stiffly anymore. He just looked at me like I was a crazy Mom, said absolutely nothing about it, and said she should wear the braces a little while longer. When the next checkup with him was due, we found out that he had left to work at a Shriner's hospital. We chose a Dr closer to home and he said she didn't have to wear the braces anymore. Now that I understand more about Bartter's, I realize she was having muscle cramps (tetany) in her legs and feet and that was why she wasn't bending her ankles normally. So that meant we were putting braces on her to force her to bend her ankles while she was having the same thing as a giant Charlie horse in both legs every day. It must have been SOOOO painful for her. Yet she endured, maintaining the most charming disposition ever.

Charlotte is now 13 years old and doing well. As of March 2001 her medications for the Bartter's Syndrome are;

  • Amiloride 5mg tablets, twice a day, to maintain her potassium level,
  • Bicitrate liquid, 2 tablespoons, three times a day, to prevent nephrocalcinosis,
  • Magnesium oxide, 800mg, three times a day, to maintain her magnesium level.

If you or someone you love has Bartter's Syndrome, I invite you to visit The Bartter Site You will find more information there about Bartter's and Gitelman's Syndromes than anywhere else. Please join our E-Mail list, the BananaBunch where we share information and ideas and offer support to each other.