DisneyWorldMimi
Mimi to a new Disney Lover
- Joined
- Jan 25, 2016
My granddaughter is 10 years old and recently went to Shand's in Gainesville for some tests.
From the time she was little she has had different problems. She was in the hospital for a week and when she was released they diagnosed her with Acid Reflux. She went in vomiting and not being able to keep anything down. Every day, she would eat and it would come back up.
Eventually they gave her an laxative and cleaned her out. She was fine after that. While she was still in the hospital, they did an endoscopy as well. Diagnosing her with Acid Reflux when she was totally constipated is ridiculous.
She also had some trouble with her legs and feet and how she walked. As she has gotten older, she complains of her legs hurting after a certain amount of time walking.
When she goes to sleep, her temperature rises. At first her primary doctor didn't believe my daughter. Then at an appointment one day, the nurse took her temp and it was normal. While waiting for the doctor, she fell asleep. The doctor touched her forehead and could tell it had gone up. He checked it and it was just above 100.
While at Shand's they took 22 vials of blood, did CT scans, ultrasounds, and an EMG test on her arms and legs. The numbing solution they used on her leg, she had a reaction to, so she had to be treated for that. Now we are waiting on the results of the blood and genetic tests.
When my daughter found out prior to going down that they would be taking a lot of blood, we all knew that was going to be next to impossible. I have watched my granddaughter climb a wall in the ER to get away from someone with a needle. They explained to her that they would stick a needle in and then switch out the vials without removing the needle. They were able to do most in one arm until it started to clot. Then they changed arms. My daughter said she did very good on that.
With the EMG, they were checking her nerves and muscles, thinking that maybe there was something going on there to cause the pain, which she describes as a painful tingling, kind of like when you foot/leg has fallen asleep and it really hurts when you first try to walk around on it. But nothing showed on that.
My daughter found that they have been trying to send her down to Shand's for the last 5 years and nothing was ever done. Shand's found referrals that were never submitted by some of her doctors to the insurance company. Just after Covid came here, my granddaughter had to go to the ER for something and they put her in a room right away because as they told my daughter "she is immuno-compromised." This was the first my daughter had ever been told this. We have no idea how long she has been like this.
She is a beautiful little girl who has a very big heart and loves helping people. The 2019 school year after Hurricane Michael, she wanted to raise money to give pencil bags to all the school age kids, so that they would have them. She knew that a lot of children in our area lost so much. She and my daughter have sponsored children at Christmas the past couple of years.
We would just like some answers to her medical problems instead of being ignored or given to someone else to try and figure it out. If you could keep her in your thoughts and prayers, I would greatly appreciate it.
From the time she was little she has had different problems. She was in the hospital for a week and when she was released they diagnosed her with Acid Reflux. She went in vomiting and not being able to keep anything down. Every day, she would eat and it would come back up.
Eventually they gave her an laxative and cleaned her out. She was fine after that. While she was still in the hospital, they did an endoscopy as well. Diagnosing her with Acid Reflux when she was totally constipated is ridiculous.
She also had some trouble with her legs and feet and how she walked. As she has gotten older, she complains of her legs hurting after a certain amount of time walking.
When she goes to sleep, her temperature rises. At first her primary doctor didn't believe my daughter. Then at an appointment one day, the nurse took her temp and it was normal. While waiting for the doctor, she fell asleep. The doctor touched her forehead and could tell it had gone up. He checked it and it was just above 100.
While at Shand's they took 22 vials of blood, did CT scans, ultrasounds, and an EMG test on her arms and legs. The numbing solution they used on her leg, she had a reaction to, so she had to be treated for that. Now we are waiting on the results of the blood and genetic tests.
When my daughter found out prior to going down that they would be taking a lot of blood, we all knew that was going to be next to impossible. I have watched my granddaughter climb a wall in the ER to get away from someone with a needle. They explained to her that they would stick a needle in and then switch out the vials without removing the needle. They were able to do most in one arm until it started to clot. Then they changed arms. My daughter said she did very good on that.
With the EMG, they were checking her nerves and muscles, thinking that maybe there was something going on there to cause the pain, which she describes as a painful tingling, kind of like when you foot/leg has fallen asleep and it really hurts when you first try to walk around on it. But nothing showed on that.
My daughter found that they have been trying to send her down to Shand's for the last 5 years and nothing was ever done. Shand's found referrals that were never submitted by some of her doctors to the insurance company. Just after Covid came here, my granddaughter had to go to the ER for something and they put her in a room right away because as they told my daughter "she is immuno-compromised." This was the first my daughter had ever been told this. We have no idea how long she has been like this.
She is a beautiful little girl who has a very big heart and loves helping people. The 2019 school year after Hurricane Michael, she wanted to raise money to give pencil bags to all the school age kids, so that they would have them. She knew that a lot of children in our area lost so much. She and my daughter have sponsored children at Christmas the past couple of years.
We would just like some answers to her medical problems instead of being ignored or given to someone else to try and figure it out. If you could keep her in your thoughts and prayers, I would greatly appreciate it.
