Cathy in IL Posted July 18, 2008 Share Posted July 18, 2008 My 4 year old ds was in the hospital again this week. He has sickle cell and moyamoya which makes him a high stroke risk. Tuesday was a great day. He was playing and having fun all day. He had no complaints of pain or anything until that evening. Out of nowhere he started screaming and raging. He was completely out of control. Then he grabbed his forehead and laid down on his back on the ground. I asked him if his head hurt and he screamed, "Yes!" I asked how bad it hurt and he screamed, "Bad!" I told the children to get in the car immediately. We got to Children's Memorial as quickly as we could. I was scared and trying to stay calm enough to keep everyone else calm and get there as fast as we could. The ambulance would take him to a community hospital that doesn't have pediatrics, so his "Stroke Action Plan" states that I drive him to the nearest children's hospital. He was seen quickly and was still asking for morphine when we got to Children's. Morphine helped the pain. A head CT was normal, but they admitted him for observation. He looked good overnight, so he was discharged in the morning. We don't know what caused it. His doctor wants to do an MRI/MRI soon because they CT can't rule out transient ischemic attack - similar to a small stroke. Children with moyamoya are prone to multiple TIA's and they often precede a full stroke. The MRI will be essential in guiding his medical care. He needs a blood transfusion before the MRI, so it isn't something we can just schedule for tomorrow. While we wait they said to bring him back to the ER if he has more headaches or any signs of neuro involvement. A child should not have to live this way. It makes me sad to be on edge like this. I keep trying to hold fast to my faith, and I know that ultimately, no matter what the medical statistics are, there is One who holds his future and cares about him more than I do. When I dwell on that, it doesn't all seem as overwhelming. Quote Link to comment Share on other sites More sharing options...
Quiver0f10 Posted July 18, 2008 Share Posted July 18, 2008 So sorry you are dealing with this and know that we will be praying for you all. :grouphug: Quote Link to comment Share on other sites More sharing options...
Faithr Posted July 18, 2008 Share Posted July 18, 2008 Wow, my prayers are with you. Quote Link to comment Share on other sites More sharing options...
Tammyla Posted July 18, 2008 Share Posted July 18, 2008 (((Cathy))) Hugs and prayers coming your way. :grouphug: Quote Link to comment Share on other sites More sharing options...
sleepy Posted July 18, 2008 Share Posted July 18, 2008 Oh Cathy, my heart is breaking for your sweet boy. You are right, no child should have to live this way. Holding you both in my heart... :grouphug: Quote Link to comment Share on other sites More sharing options...
DB in NJ Posted July 18, 2008 Share Posted July 18, 2008 (((((Cathy))))) I'll be praying for you all. Quote Link to comment Share on other sites More sharing options...
Old Dominion Heather Posted July 18, 2008 Share Posted July 18, 2008 Cathy, I have been keeping up to date on the carepage. We are praying for your little one. Quote Link to comment Share on other sites More sharing options...
summer Posted July 18, 2008 Share Posted July 18, 2008 I am so sorry!!!! ((((hugs)))) Quote Link to comment Share on other sites More sharing options...
Natalieclare Posted July 18, 2008 Share Posted July 18, 2008 (((Cathy))) I hope all the scans come back with good news. I wish I could fix you dinner and clean your bathrooms for you, you know, just to take a load off. Praying for you here... Quote Link to comment Share on other sites More sharing options...
Tarheel Heather Posted July 18, 2008 Share Posted July 18, 2008 My 4 year old ds was in the hospital again this week. He has sickle cell and moyamoya which makes him a high stroke risk. Tuesday was a great day. He was playing and having fun all day. He had no complaints of pain or anything until that evening. Out of nowhere he started screaming and raging. He was completely out of control. Then he grabbed his forehead and laid down on his back on the ground. I asked him if his head hurt and he screamed, "Yes!" I asked how bad it hurt and he screamed, "Bad!" I told the children to get in the car immediately. We got to Children's Memorial as quickly as we could. I was scared and trying to stay calm enough to keep everyone else calm and get there as fast as we could. The ambulance would take him to a community hospital that doesn't have pediatrics, so his "Stroke Action Plan" states that I drive him to the nearest children's hospital. He was seen quickly and was still asking for morphine when we got to Children's. Morphine helped the pain. A head CT was normal, but they admitted him for observation. He looked good overnight, so he was discharged in the morning. We don't know what caused it. His doctor wants to do an MRI/MRI soon because they CT can't rule out transient ischemic attack - similar to a small stroke. Children with moyamoya are prone to multiple TIA's and they often precede a full stroke. The MRI will be essential in guiding his medical care. He needs a blood transfusion before the MRI, so it isn't something we can just schedule for tomorrow. While we wait they said to bring him back to the ER if he has more headaches or any signs of neuro involvement. A child should not have to live this way. It makes me sad to be on edge like this. I keep trying to hold fast to my faith, and I know that ultimately, no matter what the medical statistics are, there is One who holds his future and cares about him more than I do. When I dwell on that, it doesn't all seem as overwhelming. I had a neighbor whose three year old was similar. The little girl had a series of strokes in a matter of months. She goes to a hospital in NY, they fly from NC to take her, no one in NC would take on her case. She is doing much better. My prayers are with your family.:grouphug: Quote Link to comment Share on other sites More sharing options...
WTMindy Posted July 18, 2008 Share Posted July 18, 2008 :grouphug::grouphug::grouphug: Wow, I am so sorry that he (and you) have to go through this!! How terrifying. I'm praying for your family right now!! Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted July 18, 2008 Share Posted July 18, 2008 :grouphug: Quote Link to comment Share on other sites More sharing options...
chaik76 Posted July 18, 2008 Share Posted July 18, 2008 :grouphug: Quote Link to comment Share on other sites More sharing options...
CalicoKat Posted July 18, 2008 Share Posted July 18, 2008 My 4 year old ds was in the hospital again this week. He has sickle cell and moyamoya which makes him a high stroke risk. Tuesday was a great day. He was playing and having fun all day. He had no complaints of pain or anything until that evening. Out of nowhere he started screaming and raging. He was completely out of control. Then he grabbed his forehead and laid down on his back on the ground. I asked him if his head hurt and he screamed, "Yes!" I asked how bad it hurt and he screamed, "Bad!" I told the children to get in the car immediately. We got to Children's Memorial as quickly as we could. I was scared and trying to stay calm enough to keep everyone else calm and get there as fast as we could. The ambulance would take him to a community hospital that doesn't have pediatrics, so his "Stroke Action Plan" states that I drive him to the nearest children's hospital. He was seen quickly and was still asking for morphine when we got to Children's. Morphine helped the pain. A head CT was normal, but they admitted him for observation. He looked good overnight, so he was discharged in the morning. We don't know what caused it. His doctor wants to do an MRI/MRI soon because they CT can't rule out transient ischemic attack - similar to a small stroke. Children with moyamoya are prone to multiple TIA's and they often precede a full stroke. The MRI will be essential in guiding his medical care. He needs a blood transfusion before the MRI, so it isn't something we can just schedule for tomorrow. While we wait they said to bring him back to the ER if he has more headaches or any signs of neuro involvement. A child should not have to live this way. It makes me sad to be on edge like this. I keep trying to hold fast to my faith, and I know that ultimately, no matter what the medical statistics are, there is One who holds his future and cares about him more than I do. When I dwell on that, it doesn't all seem as overwhelming. I'm praying for your precious little boy and for you. My prayers is for a quick, accurate diagnosis. And for peace for you, Cathy. God bless you. Quote Link to comment Share on other sites More sharing options...
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