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URGENT 10yr old girl with ALPS
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Posted by: Ragamuffin
I posted a few weeks ago about my friend Lissette and her daughter, Lauren, who has ALPS - a disease where her blood counts are very low, she seems unable to maintain the levels of red blood cells, white blood cells, platelets or break down the iron in her blood. She has a portocath so she can receive desforal, a med that breaks down the iron in her blood, and she regularly has been having blood transfusions. The problem is her blood counts are dropping sooner and faster than they were and even the doctors are dumbfounded. I need help, both the spiritual kind and the medical kind. Lauren has had transfusions two weeks in a row, and the one before that was two weeks prior. Her counts are so low that her ANC is below 1000 - and she is neutrapenic (spelling?) it means she is kind of like the boy in the plastic bubble (I'm dating myself, remember that movie with John Travolta?) She needs to stay away from germs because she is supcetible to infection. Lissette is beside herself, we're praying for a miracle, and we're looking anywhere for anyone who could help us in this quest for information about this disease. The doctors are suggesting steroids - Lauren is only 10, Lissette doesn't want to go there. So she is looking for medical boards, clinical trials/studies, a doctor that has treated this...any and all info is more than welcome, we are learning as we go. She is on the phone right now and they are putting Lauren on prednisone, 28mg/day and it will initially make her sick, and then there are of course the side effects of being on a steriod. She is homebound now for the next 2 months, pending... The blood transfusions cannot continue forever because she will eventually build up immunities to this. They are trying to come up with a medicine to combat this w/o the effects of the steriod, but there is sulfa in this drug and ALPS patients have been known to be allergic to this... so this is all kinds of crazy stuff, Please, anyone that could know anything, or someone, and PRAY, PLEASE.
Posted by: brighteyes_05
Hi Mary Ann,
My name is Mary Beth and I will certainly keep your friend and her preciouse daughter in my prayers. I wish her the best of luck, happiness, and love.God bless.
Posted by: Ragamuffin
Father God, I ask you to be with Lissette today as she scours the internet searching for answers, I pray that you help her find what she needs to help the doctors and herself.
I pray that you give Lissette peace in this and take away any negative thoughts that are racing through her mind, and most importantly, that she takes her questions to You first, and that you comfort her.
Please be with her family as the go through their days, protect them with your angels and help them help each other. I pray that what the enemy means to destroy this family, You use to bring them closer together and that through them You are glorified. You alone are the only One that knows how all of this will continue on, please comfort your children as we all wait patiently on You and Your will...
Posted by: Ragamuffin
God, I want to thank you today for Lissette's sister and her surfing the web and finding another web site on ALPS in Cincinnati Children's Hopital. I pray that the emails Lissette sent out bring some awesome information to help Lauren and that You are praised for giving the knowledge and wisdom that is being shown in the progress that will be made in understanding ALPS.
I ask for continued prayer in the healing of Lauren and that their family stays strong through You and that You are glorified through this. God, there are a lot of unspoken requests in this prayer, You know them, please, I ask you, help us to see You moving in these areas. In the name of Your Son, Jesus, Amen.