Graysons fight for medical help.
Donation protected
My name is Kimberly and my sons name is Grayson. He’s 2 My name is Kimberly and my sons name is Grayson. He’s 2 years old and such a sweet boy!
Since birth I knew something was off. We spent many, many days in and out of the hospital and doctors offices. He was born a month early with the cord wrapped around his neck. He spent 3-4 days in NICU with oxygen help. He didn’t have any of his newborn reflexes and failed his newborn screen, hospital forget to repeat his tests- which were done 2 weeks later. His thyroid levels were off the charts. NICU doc said to tell our pediatrician that he’s a “floppy baby- she’ll know what to do.” Well apparently that isn’t a well known term and Grayson didn’t get any of the help he needed or any at all the first few months of his life. Unfortunately, our local doctors and pediatricians knew nothing of Graysons conditions..it was so scary watching and knowing something was wrong but not knowing how to help him. He was misdiagnosed over and over again, I’d bring him to the doctor desperate for help only to be told they “didn’t know, I’m sure he’ll grow out of it”. He had extremely low muscle tone, his head looked to be placed on his body awkward because he couldn’t move it straight from low neck muscles. He had a poor latch, didn’t gain weight, had more weakness on one side, gagged and choked in his sleep terribly (told was reflux, when in fact it was central AND obstructive sleep apnea that wasn’t found till he was a year old and from a clinic I was thankfully able to get him in without referral 4 hours away), he developed unequal pupils. He was jaundice and in and out the hospital until he was put on thyroid meds at 6 weeks old. He developed torticollis at 3 months and was referred to physical therapy. She said he scored 5% for his age and mentioned low tone (hypotonia). He also slept 18-20 hours a day, tongue tie, lips ties, very small jaw (a neurosurgeon we saw for possible craniosynostosis said he might need jaw surgery- this was at 6-8 months old. PT asked why he hasn’t seen cardio, neuro, or genetics yet. Which was news to me, both relieving and worrisome. We finally got referrals there and it was found he has a PFO (hole in his heart) and low tone was confirmed. We spent the next year getting labs, learning, therapies, the works. He had SO MUCH blood work, still does. Sweet boy knows it’s coming now, he knows the doctors and the hospitals.
His neurologist and pulmonologist referred him to a bigger facility, farther away because they said he needed “tertiary” care, they explained it as needing a higher level of care than they could offer. I had to scour Facebook groups looking for something similar, some advice, a direction to turn. I had to call and find specialists that would take us without referrals. And those wonderful doctors would then refer us to other specialists and that’s how we built our medical team.
So many doctors just don’t know, they don’t look, they don’t do what Grayson needs. And it is debilitating for a parent to have doctors just sit and tell you they don’t know what’s wrong or how to help your child.
We started seeing a team of doctors that couldn’t pin point his symptoms. Some new doctors we have now don’t have an exact answer but they are seeing his problems and aren’t giving up on him. They’ve mentioned dysautonomia, we’ve heard possible connective, neuromuscular, maybe autoimmune. Genetics immediately said it’s genetic because of how many symptoms he has, it must be genetic. Insurance denied us for a while but we finally got approval for a small panel. Which wasn’t that helpful so now we’re awaiting the larger panel. I’ve driven as far as I have too to help my son and find him answers. Recently he started developing some new, concerning, and down right terrifying symptoms. I and many doctors thought cancer at first. I brought him many different places, including the ER multiple times. No answers.His heart rate started malfunctioning so we started seeing cardio a lot. It started months ago and now I watch his heart rate every day, take pictures of his lips that turn blue and purple and his tongue. Again no one knows… he needs help. His heart rate would drop and I’d have to arouse him to get it back up. It drops into the 50’s, 60’s and has the 40’s a few times. It also gets up to the 200’s. It’s terrifying, especially when no one around us can tell us why. He may need a pacemaker, but we have to wait to see if our new EP thinks he needs one. He has temperature regulation issues, he gets so cold he hurts. He sweats at night and gets hot easy. He has pains all over. Swollen lymph nodes. Teeth problems. He started losing weight, so tired all the time. We finally got admitted into a Childrens hospital hours away that I drove him too. He couldn’t be out of bed for 5 minutes without tiring out and needing to sleep. They had high suspicion he had a brain problem and did a MRI which came back normal. We then saw more new doctors desperately trying to find answers and help, and they started saying autonomic dysfunction makes sense. EP wants to implant a device in Graysons chest to monitor his heart. I’ve never wanted to ask for help, most of our money goes directly to gas and road trip expenses for all of his appointments. We also have to be prepared to pay for any tests he needs. These new doctors were seeing said going to Boston would be good for him because they deal with special cases and rare condition kids. I called Boston, faxed some of his medical reports and they think they can help. We have an appointment set up with genetics and neuro for November. However, cardio said they can get him in sooner, august or before. Preferably before because he needs help now and it’s so hard to wait when your child needs medical care. And that’s why I’m creating this go fund me and asking for help now. We live in Louisiana. Boston is very far from us, not to mention I’m not sure what or if insurance will pay. We desperately need help to fund this trip, gas, food, hotel and to be prepared to pay for all of his tests. We may have to go other places that requires thousands of dollars just to visit them.
This is so scary. His new doctors call him a puzzle. That he’s intriguing. I hear “I’m sorry I don’t have an answer for you” a lot. We have one ER doctor who is so interested in him. I spend my days trying to find doctors on different sites, people with real experiences, on the phone with his specialists, looking over his results, making more appointments, bringing him to get more tests.
But we need answers. He needs help and we can’t get it where we are. And it’s come done to a financial issue and that’s not something I want to stand in the way of my son’s medical care.
Everything will go towards his medical expenses. Gas to get there, tests he needs, hotel stays for treatments. I have no idea where we all will have to go but I know we have to keep fighting for Grayson. We appreciate absolutely anything, even if you just pray for my son. Thank you so much for listening to our story. Thank you if you donate to help us find my son a diagnosis and get treatment, thank you for praying for my son, thank you and please share his story! old and such a sweet boy!
Since birth I knew something was off. We spent many, many days in and out of the hospital and doctors offices. He was born a month early with the cord wrapped around his neck. He spent 3-4 days in NICU with oxygen help. He didn’t have any of his newborn reflexes and failed his newborn screen, hospital forget to repeat his tests- which were done 2 weeks later. His thyroid levels were off the charts. NICU doc said to tell our pediatrician that he’s a “floppy baby- she’ll know what to do.” Well apparently that isn’t a well known term and Grayson didn’t get any of the help he needed or any at all the first few months of his life. Unfortunately, our local doctors and pediatricians knew nothing of Graysons conditions..it was so scary watching and knowing something was wrong but not knowing how to help him. He was misdiagnosed over and over again, I’d bring him to the doctor desperate for help only to be told they “didn’t know, I’m sure he’ll grow out of it”. He had extremely low muscle tone, his head looked to be placed on his body awkward because he couldn’t move it straight from low neck muscles. He had a poor latch, didn’t gain weight, had more weakness on one side, gagged and choked in his sleep terribly (told was reflux, when in fact it was central AND obstructive sleep apnea that wasn’t found till he was a year old and from a clinic I was thankfully able to get him in without referral 4 hours away), he developed unequal pupils. He was jaundice and in and out the hospital until he was put on thyroid meds at 6 weeks old. He developed torticollis at 3 months and was referred to physical therapy. She said he scored 5% for his age and mentioned low tone (hypotonia). He also slept 18-20 hours a day, tongue tie, lips ties, very small jaw (a neurosurgeon we saw for possible craniosynostosis said he might need jaw surgery- this was at 6-8 months old. PT asked why he hasn’t seen cardio, neuro, or genetics yet. Which was news to me, both relieving and worrisome. We finally got referrals there and it was found he has a PFO (hole in his heart) and low tone was confirmed. We spent the next year getting labs, learning, therapies, the works. He had SO MUCH blood work, still does. Sweet boy knows it’s coming now, he knows the doctors and the hospitals.
His neurologist and pulmonologist referred him to a bigger facility, farther away because they said he needed “tertiary” care, they explained it as needing a higher level of care than they could offer. I had to scour Facebook groups looking for something similar, some advice, a direction to turn. I had to call and find specialists that would take us without referrals. And those wonderful doctors would then refer us to other specialists and that’s how we built our medical team.
So many doctors just don’t know, they don’t look, they don’t do what Grayson needs. And it is debilitating for a parent to have doctors just sit and tell you they don’t know what’s wrong or how to help your child.
We started seeing a team of doctors that couldn’t pin point his symptoms. Some new doctors we have now don’t have an exact answer but they are seeing his problems and aren’t giving up on him. They’ve mentioned dysautonomia, we’ve heard possible connective, neuromuscular, maybe autoimmune. Genetics immediately said it’s genetic because of how many symptoms he has, it must be genetic. Insurance denied us for a while but we finally got approval for a small panel. Which wasn’t that helpful so now we’re awaiting the larger panel. I’ve driven as far as I have too to help my son and find him answers. Recently he started developing some new, concerning, and down right terrifying symptoms. I and many doctors thought cancer at first. I brought him many different places, including the ER multiple times. No answers.His heart rate started malfunctioning so we started seeing cardio a lot. It started months ago and now I watch his heart rate every day, take pictures of his lips that turn blue and purple and his tongue. Again no one knows… he needs help. His heart rate would drop and I’d have to arouse him to get it back up. He has temperature regulation issues, he gets so cold he hurts. He sweats at night and gets hot easy. He has pains all over. Swollen lymph nodes. Teeth problems. He started losing weight, so tired all the time. We finally got admitted into a Childrens hospital hours away that I drove him too. He couldn’t be out of bed for 5 minutes without tiring out and needing to sleep. They had high suspicion he had a brain problem and did a MRI which came back normal. We then saw more new doctors desperately trying to find answers and help, and they started saying autonomic dysfunction makes sense. EP wants to implant a device in Graysons chest to monitor his heart. I’ve never wanted to ask for help, most of our money goes directly to gas and road trip expenses for all of his appointments. We also have to be prepared to pay for any tests he needs. These new doctors were seeing said going to Boston would be good for him because they deal with special cases and rare condition kids. I called Boston, faxed some of his medical reports and they think they can help. We have an appointment set up with genetics and neuro for November. However, cardio said they can get him in sooner, august or before. Preferably before because he needs help now and it’s so hard to wait when your child needs medical care. And that’s why I’m creating this go fund me and asking for help now. We live in Louisiana. Boston is very far from us, not to mention I’m not sure what or if insurance will pay. We desperately need help to fund this trip, gas, food, hotel and to be prepared to pay for all of his tests. We may have to go other places that requires thousands of dollars just to visit them.
This is so scary. His new doctors call him a puzzle. That he’s intriguing. I hear “I’m sorry I don’t have an answer for you” a lot. We have one ER doctor who is so interested in him. I spend my days trying to find doctors on different sites, people with real experiences, on the phone with his specialists, looking over his results, making more appointments, bringing him to get more tests.
But we need answers. He needs help and we can’t get it where we are. And it’s come done to a financial issue and that’s not something I want to stand in the way of my son’s medical care.
Everything will go towards his medical expenses. Gas to get there, tests he needs, hotel stays for treatments. I have no idea where we all will have to go but I know we have to keep fighting for Grayson. We appreciate absolutely anything, even if you just pray for my son. Thank you so much for listening to our story. Thank you if you donate to help us find my son a diagnosis and get treatment, thank you for praying for my son, thank you and please share his story!
Since birth I knew something was off. We spent many, many days in and out of the hospital and doctors offices. He was born a month early with the cord wrapped around his neck. He spent 3-4 days in NICU with oxygen help. He didn’t have any of his newborn reflexes and failed his newborn screen, hospital forget to repeat his tests- which were done 2 weeks later. His thyroid levels were off the charts. NICU doc said to tell our pediatrician that he’s a “floppy baby- she’ll know what to do.” Well apparently that isn’t a well known term and Grayson didn’t get any of the help he needed or any at all the first few months of his life. Unfortunately, our local doctors and pediatricians knew nothing of Graysons conditions..it was so scary watching and knowing something was wrong but not knowing how to help him. He was misdiagnosed over and over again, I’d bring him to the doctor desperate for help only to be told they “didn’t know, I’m sure he’ll grow out of it”. He had extremely low muscle tone, his head looked to be placed on his body awkward because he couldn’t move it straight from low neck muscles. He had a poor latch, didn’t gain weight, had more weakness on one side, gagged and choked in his sleep terribly (told was reflux, when in fact it was central AND obstructive sleep apnea that wasn’t found till he was a year old and from a clinic I was thankfully able to get him in without referral 4 hours away), he developed unequal pupils. He was jaundice and in and out the hospital until he was put on thyroid meds at 6 weeks old. He developed torticollis at 3 months and was referred to physical therapy. She said he scored 5% for his age and mentioned low tone (hypotonia). He also slept 18-20 hours a day, tongue tie, lips ties, very small jaw (a neurosurgeon we saw for possible craniosynostosis said he might need jaw surgery- this was at 6-8 months old. PT asked why he hasn’t seen cardio, neuro, or genetics yet. Which was news to me, both relieving and worrisome. We finally got referrals there and it was found he has a PFO (hole in his heart) and low tone was confirmed. We spent the next year getting labs, learning, therapies, the works. He had SO MUCH blood work, still does. Sweet boy knows it’s coming now, he knows the doctors and the hospitals.
His neurologist and pulmonologist referred him to a bigger facility, farther away because they said he needed “tertiary” care, they explained it as needing a higher level of care than they could offer. I had to scour Facebook groups looking for something similar, some advice, a direction to turn. I had to call and find specialists that would take us without referrals. And those wonderful doctors would then refer us to other specialists and that’s how we built our medical team.
So many doctors just don’t know, they don’t look, they don’t do what Grayson needs. And it is debilitating for a parent to have doctors just sit and tell you they don’t know what’s wrong or how to help your child.
We started seeing a team of doctors that couldn’t pin point his symptoms. Some new doctors we have now don’t have an exact answer but they are seeing his problems and aren’t giving up on him. They’ve mentioned dysautonomia, we’ve heard possible connective, neuromuscular, maybe autoimmune. Genetics immediately said it’s genetic because of how many symptoms he has, it must be genetic. Insurance denied us for a while but we finally got approval for a small panel. Which wasn’t that helpful so now we’re awaiting the larger panel. I’ve driven as far as I have too to help my son and find him answers. Recently he started developing some new, concerning, and down right terrifying symptoms. I and many doctors thought cancer at first. I brought him many different places, including the ER multiple times. No answers.His heart rate started malfunctioning so we started seeing cardio a lot. It started months ago and now I watch his heart rate every day, take pictures of his lips that turn blue and purple and his tongue. Again no one knows… he needs help. His heart rate would drop and I’d have to arouse him to get it back up. It drops into the 50’s, 60’s and has the 40’s a few times. It also gets up to the 200’s. It’s terrifying, especially when no one around us can tell us why. He may need a pacemaker, but we have to wait to see if our new EP thinks he needs one. He has temperature regulation issues, he gets so cold he hurts. He sweats at night and gets hot easy. He has pains all over. Swollen lymph nodes. Teeth problems. He started losing weight, so tired all the time. We finally got admitted into a Childrens hospital hours away that I drove him too. He couldn’t be out of bed for 5 minutes without tiring out and needing to sleep. They had high suspicion he had a brain problem and did a MRI which came back normal. We then saw more new doctors desperately trying to find answers and help, and they started saying autonomic dysfunction makes sense. EP wants to implant a device in Graysons chest to monitor his heart. I’ve never wanted to ask for help, most of our money goes directly to gas and road trip expenses for all of his appointments. We also have to be prepared to pay for any tests he needs. These new doctors were seeing said going to Boston would be good for him because they deal with special cases and rare condition kids. I called Boston, faxed some of his medical reports and they think they can help. We have an appointment set up with genetics and neuro for November. However, cardio said they can get him in sooner, august or before. Preferably before because he needs help now and it’s so hard to wait when your child needs medical care. And that’s why I’m creating this go fund me and asking for help now. We live in Louisiana. Boston is very far from us, not to mention I’m not sure what or if insurance will pay. We desperately need help to fund this trip, gas, food, hotel and to be prepared to pay for all of his tests. We may have to go other places that requires thousands of dollars just to visit them.
This is so scary. His new doctors call him a puzzle. That he’s intriguing. I hear “I’m sorry I don’t have an answer for you” a lot. We have one ER doctor who is so interested in him. I spend my days trying to find doctors on different sites, people with real experiences, on the phone with his specialists, looking over his results, making more appointments, bringing him to get more tests.
But we need answers. He needs help and we can’t get it where we are. And it’s come done to a financial issue and that’s not something I want to stand in the way of my son’s medical care.
Everything will go towards his medical expenses. Gas to get there, tests he needs, hotel stays for treatments. I have no idea where we all will have to go but I know we have to keep fighting for Grayson. We appreciate absolutely anything, even if you just pray for my son. Thank you so much for listening to our story. Thank you if you donate to help us find my son a diagnosis and get treatment, thank you for praying for my son, thank you and please share his story! old and such a sweet boy!
Since birth I knew something was off. We spent many, many days in and out of the hospital and doctors offices. He was born a month early with the cord wrapped around his neck. He spent 3-4 days in NICU with oxygen help. He didn’t have any of his newborn reflexes and failed his newborn screen, hospital forget to repeat his tests- which were done 2 weeks later. His thyroid levels were off the charts. NICU doc said to tell our pediatrician that he’s a “floppy baby- she’ll know what to do.” Well apparently that isn’t a well known term and Grayson didn’t get any of the help he needed or any at all the first few months of his life. Unfortunately, our local doctors and pediatricians knew nothing of Graysons conditions..it was so scary watching and knowing something was wrong but not knowing how to help him. He was misdiagnosed over and over again, I’d bring him to the doctor desperate for help only to be told they “didn’t know, I’m sure he’ll grow out of it”. He had extremely low muscle tone, his head looked to be placed on his body awkward because he couldn’t move it straight from low neck muscles. He had a poor latch, didn’t gain weight, had more weakness on one side, gagged and choked in his sleep terribly (told was reflux, when in fact it was central AND obstructive sleep apnea that wasn’t found till he was a year old and from a clinic I was thankfully able to get him in without referral 4 hours away), he developed unequal pupils. He was jaundice and in and out the hospital until he was put on thyroid meds at 6 weeks old. He developed torticollis at 3 months and was referred to physical therapy. She said he scored 5% for his age and mentioned low tone (hypotonia). He also slept 18-20 hours a day, tongue tie, lips ties, very small jaw (a neurosurgeon we saw for possible craniosynostosis said he might need jaw surgery- this was at 6-8 months old. PT asked why he hasn’t seen cardio, neuro, or genetics yet. Which was news to me, both relieving and worrisome. We finally got referrals there and it was found he has a PFO (hole in his heart) and low tone was confirmed. We spent the next year getting labs, learning, therapies, the works. He had SO MUCH blood work, still does. Sweet boy knows it’s coming now, he knows the doctors and the hospitals.
His neurologist and pulmonologist referred him to a bigger facility, farther away because they said he needed “tertiary” care, they explained it as needing a higher level of care than they could offer. I had to scour Facebook groups looking for something similar, some advice, a direction to turn. I had to call and find specialists that would take us without referrals. And those wonderful doctors would then refer us to other specialists and that’s how we built our medical team.
So many doctors just don’t know, they don’t look, they don’t do what Grayson needs. And it is debilitating for a parent to have doctors just sit and tell you they don’t know what’s wrong or how to help your child.
We started seeing a team of doctors that couldn’t pin point his symptoms. Some new doctors we have now don’t have an exact answer but they are seeing his problems and aren’t giving up on him. They’ve mentioned dysautonomia, we’ve heard possible connective, neuromuscular, maybe autoimmune. Genetics immediately said it’s genetic because of how many symptoms he has, it must be genetic. Insurance denied us for a while but we finally got approval for a small panel. Which wasn’t that helpful so now we’re awaiting the larger panel. I’ve driven as far as I have too to help my son and find him answers. Recently he started developing some new, concerning, and down right terrifying symptoms. I and many doctors thought cancer at first. I brought him many different places, including the ER multiple times. No answers.His heart rate started malfunctioning so we started seeing cardio a lot. It started months ago and now I watch his heart rate every day, take pictures of his lips that turn blue and purple and his tongue. Again no one knows… he needs help. His heart rate would drop and I’d have to arouse him to get it back up. He has temperature regulation issues, he gets so cold he hurts. He sweats at night and gets hot easy. He has pains all over. Swollen lymph nodes. Teeth problems. He started losing weight, so tired all the time. We finally got admitted into a Childrens hospital hours away that I drove him too. He couldn’t be out of bed for 5 minutes without tiring out and needing to sleep. They had high suspicion he had a brain problem and did a MRI which came back normal. We then saw more new doctors desperately trying to find answers and help, and they started saying autonomic dysfunction makes sense. EP wants to implant a device in Graysons chest to monitor his heart. I’ve never wanted to ask for help, most of our money goes directly to gas and road trip expenses for all of his appointments. We also have to be prepared to pay for any tests he needs. These new doctors were seeing said going to Boston would be good for him because they deal with special cases and rare condition kids. I called Boston, faxed some of his medical reports and they think they can help. We have an appointment set up with genetics and neuro for November. However, cardio said they can get him in sooner, august or before. Preferably before because he needs help now and it’s so hard to wait when your child needs medical care. And that’s why I’m creating this go fund me and asking for help now. We live in Louisiana. Boston is very far from us, not to mention I’m not sure what or if insurance will pay. We desperately need help to fund this trip, gas, food, hotel and to be prepared to pay for all of his tests. We may have to go other places that requires thousands of dollars just to visit them.
This is so scary. His new doctors call him a puzzle. That he’s intriguing. I hear “I’m sorry I don’t have an answer for you” a lot. We have one ER doctor who is so interested in him. I spend my days trying to find doctors on different sites, people with real experiences, on the phone with his specialists, looking over his results, making more appointments, bringing him to get more tests.
But we need answers. He needs help and we can’t get it where we are. And it’s come done to a financial issue and that’s not something I want to stand in the way of my son’s medical care.
Everything will go towards his medical expenses. Gas to get there, tests he needs, hotel stays for treatments. I have no idea where we all will have to go but I know we have to keep fighting for Grayson. We appreciate absolutely anything, even if you just pray for my son. Thank you so much for listening to our story. Thank you if you donate to help us find my son a diagnosis and get treatment, thank you for praying for my son, thank you and please share his story!
Organizer
Kimberly Duganne
Organizer
Iowa, LA