Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Hi All, My son is 4 he has BP PMG. In the past 2 months he has slowly been going cross eyed the right eye almost always looks at his nose now. Who should I call, the Ped, the ophthalmologist or the neurologist? Also does anyone have any experience with this? Thanks, Angus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 , I would go to a pediatric opthamologist. A pediatrician or neurologist won't be able to do anything. More than likely they will put a patch over the good eye which will force the cross eye to work. Good luck! Stacey  http://lifeonmysterylane.blogspot.com/ ________________________________ To: polymicrogyria Sent: Mon, May 16, 2011 1:27:15 PM Subject: crossed eyes  Hi All, My son is 4 he has BP PMG. In the past 2 months he has slowly been going cross eyed the right eye almost always looks at his nose now. Who should I call, the Ped, the ophthalmologist or the neurologist? Also does anyone have any experience with this? Thanks, Angus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 , You can try an pediatric opthomologist, but it would be even better if you have a pediatric neuro- opthomologist near you to take your son to see. My son has several eye and vision issues, one being eye crossing. Some eye crossing is simply what is called strabismus which can be treated with patching or if not reponding to patching, surgery.  But since your son has other neurological issues, it may be something a bit different or a combination of things. We found that my son's crossig was a bit more involved than strabismus when we took him to a pediatric neuro-opthomologist. I will say, they are not easy to come by, but may be a beneficial option for him just to ensure there isn't something neurological going on that has brought about the crossing. Subject: crossed eyes To: polymicrogyria Date: Monday, May 16, 2011, 3:27 PM  Hi All, My son is 4 he has BP PMG. In the past 2 months he has slowly been going cross eyed the right eye almost always looks at his nose now. Who should I call, the Ped, the ophthalmologist or the neurologist? Also does anyone have any experience with this? Thanks, Angus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 My son had crossed eyes for the first 6/7 years of life. We saw several experts in SF and Bay Area and got opinions for surgery and some strongly against. The glasses and pat hinge were useless, he refused to wear. Now Josh is 9 and his eyes have self corrected . I'm glad we opted against surgery. Sent from my iPad , You can try an pediatric opthomologist, but it would be even better if you have a pediatric neuro- opthomologist near you to take your son to see. My son has several eye and vision issues, one being eye crossing. Some eye crossing is simply what is called strabismus which can be treated with patching or if not reponding to patching, surgery. But since your son has other neurological issues, it may be something a bit different or a combination of things. We found that my son's crossig was a bit more involved than strabismus when we took him to a pediatric neuro-opthomologist. I will say, they are not easy to come by, but may be a beneficial option for him just to ensure there isn't something neurological going on that has brought about the crossing. Subject: crossed eyes To: polymicrogyria Date: Monday, May 16, 2011, 3:27 PM Hi All, My son is 4 he has BP PMG. In the past 2 months he has slowly been going cross eyed the right eye almost always looks at his nose now. Who should I call, the Ped, the ophthalmologist or the neurologist? Also does anyone have any experience with this? Thanks, Angus Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2011 Report Share Posted May 20, 2011 Message flagged Wednesday, May 18, 2011 10:58 AM Hi, As you know every child will present symptoms of this disorder at different stages and vary in degree. From my experience, my daughter Leah has severe PMG and when she was 8 weeks old, I noticed her eyes would cross and I did mention this to her Pediatrician but he said it was probably normal and that she would probably outgrow it soon. This started right before she had any other significant problems. One day after she was 10 weeks old, I noticed her eyes would not stop crossing, but after a while she fell asleep. I had to work so my mom was caring for her, later that evening my mom called me and said that something was wrong with Leah, that she might be having a seizure. I told her to call 911 and I will meet them at the ER. I got a call from the paramedic stating that my baby did not have a temp and if I still wanted them to take her, of course I said yes because I knew my mom saw something that concerned her enough to call me. I got to the ER first and when they arrived my baby was in a grand mal seizure. I was so scared at that moment, how any moment of life can drastically change forever. It was so hard to watch a team of ER nurses and techs working hard on this little baby of mine. The ER Dr was so caring and attentive too. Anyway at this point Leah was in Status Epilepticus and that is why they were working hard on her. Someone was finally able to get an IV started and they gave her IV Ativan twice before she stopped seizing. They did a CT Head scan and they discovered a cyst vs tumor in the left frontal lobe. At the time I was working in another hospital and had been in the medical field for more than 15 yrs so I had medical knowledge, but that does not matter when something happens to a loved one. I thought since they were able to stop her seizure I was going to be able to take her home and follow up with her doctor, wrong! The ER dr said that Leah has to be transferred to a Hospital with a peds ICU. That was another unexpected thing I had to take in. I couldn't ride in the ambulance with her because a Dr, a nurse, a resp therapist, along with two paramedics were coming to pick her up therefore no room for me. My aunt took me because I was in no shape to drive. Now you know it is serious when a medical team is in the transport with your child. Later on in the ER note her condition was listed as Guarded. Sorry this is so long. My advice to you is to contact your child's neuro for a visit, and he/she will probably refer you to an ophthalmalogist. I read later that crossing of the eyes is one of the many symptoms or indicators of PMG. Take care, hope this helped a little, and good luck, Elena, mom to Leah 8 yrs old with severe PMG, Intractable seizures, Quadriplegia, G-tube dependant, severe developmentally delayed, profound mental retardation, etc., Emilio 17 yrs old, and 23 yrs old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2011 Report Share Posted May 20, 2011 We have a Leah too (although pronounced Lay-a), and she has PMG, had strabismus (corrected by surgery after an unsuccessful stint at patching), and also has seizures...I also noticed the eyes crossing, and the peds thought it was just normal " infant stuff " . There is a sub specialty called pediatric neuro opthamologist. Do you have one around you? Thea Re: crossed eyes Message flagged Wednesday, May 18, 2011 10:58 AM Hi, As you know every child will present symptoms of this disorder at different stages and vary in degree. From my experience, my daughter Leah has severe PMG and when she was 8 weeks old, I noticed her eyes would cross and I did mention this to her Pediatrician but he said it was probably normal and that she would probably outgrow it soon. This started right before she had any other significant problems. One day after she was 10 weeks old, I noticed her eyes would not stop crossing, but after a while she fell asleep. I had to work so my mom was caring for her, later that evening my mom called me and said that something was wrong with Leah, that she might be having a seizure. I told her to call 911 and I will meet them at the ER. I got a call from the paramedic stating that my baby did not have a temp and if I still wanted them to take her, of course I said yes because I knew my mom saw something that concerned her enough to call me. I got to the ER first and when they arrived my baby was in a grand mal seizure. I was so scared at that moment, how any moment of life can drastically change forever. It was so hard to watch a team of ER nurses and techs working hard on this little baby of mine. The ER Dr was so caring and attentive too. Anyway at this point Leah was in Status Epilepticus and that is why they were working hard on her. Someone was finally able to get an IV started and they gave her IV Ativan twice before she stopped seizing. They did a CT Head scan and they discovered a cyst vs tumor in the left frontal lobe. At the time I was working in another hospital and had been in the medical field for more than 15 yrs so I had medical knowledge, but that does not matter when something happens to a loved one. I thought since they were able to stop her seizure I was going to be able to take her home and follow up with her doctor, wrong! The ER dr said that Leah has to be transferred to a Hospital with a peds ICU. That was another unexpected thing I had to take in. I couldn't ride in the ambulance with her because a Dr, a nurse, a resp therapist, along with two paramedics were coming to pick her up therefore no room for me. My aunt took me because I was in no shape to drive. Now you know it is serious when a medical team is in the transport with your child. Later on in the ER note her condition was listed as Guarded. Sorry this is so long. My advice to you is to contact your child's neuro for a visit, and he/she will probably refer you to an ophthalmalogist. I read later that crossing of the eyes is one of the many symptoms or indicators of PMG. Take care, hope this helped a little, and good luck, Elena, mom to Leah 8 yrs old with severe PMG, Intractable seizures, Quadriplegia, G-tube dependant, severe developmentally delayed, profound mental retardation, etc., Emilio 17 yrs old, and 23 yrs old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2011 Report Share Posted May 20, 2011 Hi, Your story sounds very familiar to ours, our girl had her first seizure in my arms at 11 weeks of age, she had been having regular crossed eyes for weeks prior and I was also told it was normal newborn stuff. It is def very traumatic watching your baby having endless tests done, needles, people handling them non stop, we had a whole night of that too before being admitted to a ward, was an awful time. It sounds like you have done so well, very inspiring. Thank you for sharing your story. Kat ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Sat, 21 May, 2011 3:19:44 AM Subject: Re: crossed eyes Message flagged Wednesday, May 18, 2011 10:58 AM Hi, As you know every child will present symptoms of this disorder at different stages and vary in degree. From my experience, my daughter Leah has severe PMG and when she was 8 weeks old, I noticed her eyes would cross and I did mention this to her Pediatrician but he said it was probably normal and that she would probably outgrow it soon. This started right before she had any other significant problems. One day after she was 10 weeks old, I noticed her eyes would not stop crossing, but after a while she fell asleep. I had to work so my mom was caring for her, later that evening my mom called me and said that something was wrong with Leah, that she might be having a seizure. I told her to call 911 and I will meet them at the ER. I got a call from the paramedic stating that my baby did not have a temp and if I still wanted them to take her, of course I said yes because I knew my mom saw something that concerned her enough to call me. I got to the ER first and when they arrived my baby was in a grand mal seizure. I was so scared at that moment, how any moment of life can drastically change forever. It was so hard to watch a team of ER nurses and techs working hard on this little baby of mine. The ER Dr was so caring and attentive too. Anyway at this point Leah was in Status Epilepticus and that is why they were working hard on her. Someone was finally able to get an IV started and they gave her IV Ativan twice before she stopped seizing. They did a CT Head scan and they discovered a cyst vs tumor in the left frontal lobe. At the time I was working in another hospital and had been in the medical field for more than 15 yrs so I had medical knowledge, but that does not matter when something happens to a loved one. I thought since they were able to stop her seizure I was going to be able to take her home and follow up with her doctor, wrong! The ER dr said that Leah has to be transferred to a Hospital with a peds ICU. That was another unexpected thing I had to take in.. I couldn't ride in the ambulance with her because a Dr, a nurse, a resp therapist, along with two paramedics were coming to pick her up therefore no room for me. My aunt took me because I was in no shape to drive. Now you know it is serious when a medical team is in the transport with your child. Later on in the ER note her condition was listed as Guarded. Sorry this is so long. My advice to you is to contact your child's neuro for a visit, and he/she will probably refer you to an ophthalmalogist. I read later that crossing of the eyes is one of the many symptoms or indicators of PMG. Take care, hope this helped a little, and good luck, Elena, mom to Leah 8 yrs old with severe PMG, Intractable seizures, Quadriplegia, G-tube dependant, severe developmentally delayed, profound mental retardation, etc., Emilio 17 yrs old, and 23 yrs old. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2011 Report Share Posted May 20, 2011 Hi Thea, Leah's eyes do not cross anymore and I think it's because of medications. She does have bilateral nystigsma (bouncing eye), which seems less bothersome and is less noticeable. I live in the Low Desert of Southern California 17 miles east of Palm Springs. There are not many if any specialists for children here. We have to travel to Loma or Riverside for any specialists or specialized treatments. I know Leah can see even though she may not comprehend what she sees. Sincerely, Elena. > > We have a Leah too (although pronounced Lay-a), and she has PMG, had strabismus (corrected by surgery after an unsuccessful stint at patching), and also has seizures...I also noticed the eyes crossing, and the peds thought it was just normal " infant stuff " . > >There is a sub specialty called pediatric neuro opthamologist. Do you have one around you? > >Thea > > > > > > > > > Re: crossed eyes > > > > > >Message flagged >Wednesday, May 18, 2011 10:58 AM >Hi, > >As you know every child will present symptoms of this disorder at different stages and vary in degree. From my experience, my daughter Leah has severe PMG and when she was 8 weeks old, I noticed her eyes would cross and I did mention this to her Pediatrician but he said it was probably normal and that she would probably outgrow it soon. This started right before she had any other significant problems. One day after she was 10 weeks old, I noticed her eyes would not stop crossing, but after a while she fell asleep. I had to work so my mom was caring for her, later that evening my mom called me and said that something was wrong with Leah, that she might be having a seizure. I told her to call 911 and I will meet them at the ER. I got a call from the paramedic stating that my baby did not have a temp and if I still wanted them to take her, of course I said yes because I knew my mom saw something that concerned her enough to call me. I got to the ER first > and when they arrived my baby was in a grand mal seizure. I was so scared at that moment, how any moment of life can drastically change forever. It was so hard to watch a team of ER nurses and techs working hard on this little baby of mine. The ER Dr was so caring and attentive too. Anyway at this point Leah was in Status Epilepticus and that is why they were working hard on her. Someone was finally able to get an IV started and they gave her IV Ativan twice before she stopped seizing. They did a CT Head scan and they discovered a cyst vs tumor in the left frontal lobe. At the time I was working in another hospital and had been in the medical field for more than 15 yrs so I had medical knowledge, but that does not matter when something happens to a loved one. I thought since they were able to stop her seizure I was going to be able to take her home and follow up with her doctor, wrong! The ER dr said that Leah has to be transferred to a Hospital with a > peds ICU. That was another unexpected thing I had to take in. I couldn't ride in the ambulance with her because a Dr, a nurse, a resp therapist, along with two paramedics were coming to pick her up therefore no room for me. My aunt took me because I was in no shape to drive. Now you know it is serious when a medical team is in the transport with your child. Later on in the ER note her condition was listed as Guarded. Sorry this is so long. My advice to you is to contact your child's neuro for a visit, and he/she will probably refer you to an ophthalmalogist. I read later that crossing of the eyes is one of the many symptoms or indicators of PMG. > >Take care, hope this helped a little, and good luck, > >Elena, mom to Leah 8 yrs old with severe PMG, Intractable seizures, Quadriplegia, G-tube dependant, severe developmentally delayed, profound mental retardation, etc., Emilio 17 yrs old, and 23 yrs old. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2011 Report Share Posted May 20, 2011 Thank you Kat. It is so hard for all of us and the intense depth of what we go through can only be understood by those who are going through the same thing. How old is your child? I do not post often nor get to read many posts so forgive me if I have missed anything. Sincerely, Elena. >Hi, > >Your story sounds very familiar to ours, our girl had her first seizure in my >arms at 11 weeks of age, she had been having regular crossed eyes for weeks >prior and I was also told it was normal newborn stuff. > >It is def very traumatic watching your baby having endless tests done, needles, >people handling them non stop, we had a whole night of that too before being >admitted to a ward, was an awful time. > >It sounds like you have done so well, very inspiring. Thank you for sharing your >story. > >Kat > > > > > >________________________________ > >To: " polymicrogyria " <polymicrogyria > >Sent: Sat, 21 May, 2011 3:19:44 AM >Subject: Re: crossed eyes > > >Message flagged >Wednesday, May 18, 2011 10:58 AM >Hi, > >As you know every child will present symptoms of this disorder at different >stages and vary in degree. From my experience, my daughter Leah has severe PMG >and when she was 8 weeks old, I noticed her eyes would cross and I did mention >this to her Pediatrician but he said it was probably normal and that she would >probably outgrow it soon. This started right before she had any other >significant problems. One day after she was 10 weeks old, I noticed her eyes >would not stop crossing, but after a while she fell asleep. I had to work so my >mom was caring for her, later that evening my mom called me and said that >something was wrong with Leah, that she might be having a seizure. I told her to >call 911 and I will meet them at the ER. I got a call from the paramedic stating >that my baby did not have a temp and if I still wanted them to take her, of >course I said yes because I knew my mom saw something that concerned her enough >to call me. I got to the ER first >and when they arrived my baby was in a grand mal seizure. I was so scared at >that moment, how any moment of life can drastically change forever. It was so >hard to watch a team of ER nurses and techs working hard on this little baby of >mine. The ER Dr was so caring and attentive too. Anyway at this point Leah was >in Status Epilepticus and that is why they were working hard on her. Someone was >finally able to get an IV started and they gave her IV Ativan twice before she >stopped seizing. They did a CT Head scan and they discovered a cyst vs tumor in >the left frontal lobe. At the time I was working in another hospital and had >been in the medical field for more than 15 yrs so I had medical knowledge, but >that does not matter when something happens to a loved one. I thought since they >were able to stop her seizure I was going to be able to take her home and follow >up with her doctor, wrong! The ER dr said that Leah has to be transferred to a >Hospital with a >peds ICU. That was another unexpected thing I had to take in.. I couldn't ride in >the ambulance with her because a Dr, a nurse, a resp therapist, along with two >paramedics were coming to pick her up therefore no room for me. My aunt took me >because I was in no shape to drive. Now you know it is serious when a medical >team is in the transport with your child. Later on in the ER note her condition >was listed as Guarded. Sorry this is so long. My advice to you is to contact >your child's neuro for a visit, and he/she will probably refer you to an >ophthalmalogist. I read later that crossing of the eyes is one of the many >symptoms or indicators of PMG. > >Take care, hope this helped a little, and good luck, > >Elena, mom to Leah 8 yrs old with severe PMG, Intractable seizures, >Quadriplegia, G-tube dependant, severe developmentally delayed, profound mental >retardation, etc., Emilio 17 yrs old, and 23 yrs old. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2011 Report Share Posted May 20, 2011 Hi Elena No worries at all, and I agree it can only really be understood by parents who are going through it. Siera is 8mths old now, we found out at 11 weeks and she also had a brain tumour removed on 1 Feb this year, so the poor girl has been through alot! She is my gift though, I love her will all my being. I hope your family is doing well. thanks Kat ________________________________ To: polymicrogyria Sent: Sat, 21 May, 2011 11:00:43 AM Subject: Re: crossed eyes Thank you Kat. It is so hard for all of us and the intense depth of what we go through can only be understood by those who are going through the same thing. How old is your child? I do not post often nor get to read many posts so forgive me if I have missed anything. Sincerely, Elena. >Hi, > >Your story sounds very familiar to ours, our girl had her first seizure in my >arms at 11 weeks of age, she had been having regular crossed eyes for weeks >prior and I was also told it was normal newborn stuff. > >It is def very traumatic watching your baby having endless tests done, needles, >people handling them non stop, we had a whole night of that too before being >admitted to a ward, was an awful time. > >It sounds like you have done so well, very inspiring. Thank you for sharing your > >story. > >Kat > > > > > >________________________________ > >To: " polymicrogyria " <polymicrogyria > >Sent: Sat, 21 May, 2011 3:19:44 AM >Subject: Re: crossed eyes > > >Message flagged >Wednesday, May 18, 2011 10:58 AM >Hi, > >As you know every child will present symptoms of this disorder at different >stages and vary in degree. From my experience, my daughter Leah has severe PMG >and when she was 8 weeks old, I noticed her eyes would cross and I did mention >this to her Pediatrician but he said it was probably normal and that she would >probably outgrow it soon. This started right before she had any other >significant problems. One day after she was 10 weeks old, I noticed her eyes >would not stop crossing, but after a while she fell asleep. I had to work so my >mom was caring for her, later that evening my mom called me and said that >something was wrong with Leah, that she might be having a seizure. I told her to > >call 911 and I will meet them at the ER. I got a call from the paramedic stating > >that my baby did not have a temp and if I still wanted them to take her, of >course I said yes because I knew my mom saw something that concerned her enough >to call me. I got to the ER first >and when they arrived my baby was in a grand mal seizure. I was so scared at >that moment, how any moment of life can drastically change forever. It was so >hard to watch a team of ER nurses and techs working hard on this little baby of >mine. The ER Dr was so caring and attentive too. Anyway at this point Leah was >in Status Epilepticus and that is why they were working hard on her. Someone was > >finally able to get an IV started and they gave her IV Ativan twice before she >stopped seizing. They did a CT Head scan and they discovered a cyst vs tumor in >the left frontal lobe. At the time I was working in another hospital and had >been in the medical field for more than 15 yrs so I had medical knowledge, but >that does not matter when something happens to a loved one. I thought since they > >were able to stop her seizure I was going to be able to take her home and follow > >up with her doctor, wrong! The ER dr said that Leah has to be transferred to a >Hospital with a >peds ICU. That was another unexpected thing I had to take in.. I couldn't ride >in > >the ambulance with her because a Dr, a nurse, a resp therapist, along with two >paramedics were coming to pick her up therefore no room for me. My aunt took me >because I was in no shape to drive. Now you know it is serious when a medical >team is in the transport with your child. Later on in the ER note her condition >was listed as Guarded. Sorry this is so long. My advice to you is to contact >your child's neuro for a visit, and he/she will probably refer you to an >ophthalmalogist. I read later that crossing of the eyes is one of the many >symptoms or indicators of PMG. > >Take care, hope this helped a little, and good luck, > >Elena, mom to Leah 8 yrs old with severe PMG, Intractable seizures, >Quadriplegia, G-tube dependant, severe developmentally delayed, profound mental >retardation, etc., Emilio 17 yrs old, and 23 yrs old. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2011 Report Share Posted May 20, 2011 Was your daughter ever misdiagnosed? With anyhting else, like Lissencephaly? >Hi, > >Your story sounds very familiar to ours, our girl had her first seizure in my >arms at 11 weeks of age, she had been having regular crossed eyes for weeks >prior and I was also told it was normal newborn stuff. > >It is def very traumatic watching your baby having endless tests done, needles, >people handling them non stop, we had a whole night of that too before being >admitted to a ward, was an awful time. > >It sounds like you have done so well, very inspiring. Thank you for sharing your > >story. > >Kat > > > > > >________________________________ > >To: " polymicrogyria " <polymicrogyria > >Sent: Sat, 21 May, 2011 3:19:44 AM >Subject: Re: crossed eyes > > >Message flagged >Wednesday, May 18, 2011 10:58 AM >Hi, > >As you know every child will present symptoms of this disorder at different >stages and vary in degree. From my experience, my daughter Leah has severe PMG >and when she was 8 weeks old, I noticed her eyes would cross and I did mention >this to her Pediatrician but he said it was probably normal and that she would >probably outgrow it soon. This started right before she had any other >significant problems. One day after she was 10 weeks old, I noticed her eyes >would not stop crossing, but after a while she fell asleep. I had to work so my >mom was caring for her, later that evening my mom called me and said that >something was wrong with Leah, that she might be having a seizure. I told her to > >call 911 and I will meet them at the ER. I got a call from the paramedic stating > >that my baby did not have a temp and if I still wanted them to take her, of >course I said yes because I knew my mom saw something that concerned her enough >to call me. I got to the ER first >and when they arrived my baby was in a grand mal seizure. I was so scared at >that moment, how any moment of life can drastically change forever. It was so >hard to watch a team of ER nurses and techs working hard on this little baby of >mine. The ER Dr was so caring and attentive too. Anyway at this point Leah was >in Status Epilepticus and that is why they were working hard on her. Someone was > >finally able to get an IV started and they gave her IV Ativan twice before she >stopped seizing. They did a CT Head scan and they discovered a cyst vs tumor in >the left frontal lobe. At the time I was working in another hospital and had >been in the medical field for more than 15 yrs so I had medical knowledge, but >that does not matter when something happens to a loved one. I thought since they > >were able to stop her seizure I was going to be able to take her home and follow > >up with her doctor, wrong! The ER dr said that Leah has to be transferred to a >Hospital with a >peds ICU. That was another unexpected thing I had to take in.. I couldn't ride >in > >the ambulance with her because a Dr, a nurse, a resp therapist, along with two >paramedics were coming to pick her up therefore no room for me. My aunt took me >because I was in no shape to drive. Now you know it is serious when a medical >team is in the transport with your child. Later on in the ER note her condition >was listed as Guarded. Sorry this is so long. My advice to you is to contact >your child's neuro for a visit, and he/she will probably refer you to an >ophthalmalogist. I read later that crossing of the eyes is one of the many >symptoms or indicators of PMG. > >Take care, hope this helped a little, and good luck, > >Elena, mom to Leah 8 yrs old with severe PMG, Intractable seizures, >Quadriplegia, G-tube dependant, severe developmentally delayed, profound mental >retardation, etc., Emilio 17 yrs old, and 23 yrs old. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2011 Report Share Posted May 21, 2011 Not that I know of, we got told when she was 3mths that it was PG, and then the follow up MRI went to the childrens neuro team and they also said the same? Why is that? Is tumours related to Lissencephaly? ________________________________ To: polymicrogyria Sent: Sat, 21 May, 2011 3:51:33 PM Subject: Re: crossed eyes Was your daughter ever misdiagnosed? With anyhting else, like Lissencephaly? >Hi, > >Your story sounds very familiar to ours, our girl had her first seizure in my >arms at 11 weeks of age, she had been having regular crossed eyes for weeks >prior and I was also told it was normal newborn stuff. > >It is def very traumatic watching your baby having endless tests done, needles, >people handling them non stop, we had a whole night of that too before being >admitted to a ward, was an awful time. > >It sounds like you have done so well, very inspiring. Thank you for sharing your > > >story. > >Kat > > > > > >________________________________ > >To: " polymicrogyria " <polymicrogyria > >Sent: Sat, 21 May, 2011 3:19:44 AM >Subject: Re: crossed eyes > > >Message flagged >Wednesday, May 18, 2011 10:58 AM >Hi, > >As you know every child will present symptoms of this disorder at different >stages and vary in degree. From my experience, my daughter Leah has severe PMG >and when she was 8 weeks old, I noticed her eyes would cross and I did mention >this to her Pediatrician but he said it was probably normal and that she would >probably outgrow it soon. This started right before she had any other >significant problems. One day after she was 10 weeks old, I noticed her eyes >would not stop crossing, but after a while she fell asleep. I had to work so my >mom was caring for her, later that evening my mom called me and said that >something was wrong with Leah, that she might be having a seizure. I told her to > > >call 911 and I will meet them at the ER. I got a call from the paramedic stating > > >that my baby did not have a temp and if I still wanted them to take her, of >course I said yes because I knew my mom saw something that concerned her enough >to call me. I got to the ER first >and when they arrived my baby was in a grand mal seizure. I was so scared at >that moment, how any moment of life can drastically change forever. It was so >hard to watch a team of ER nurses and techs working hard on this little baby of >mine. The ER Dr was so caring and attentive too. Anyway at this point Leah was >in Status Epilepticus and that is why they were working hard on her.. Someone was > > >finally able to get an IV started and they gave her IV Ativan twice before she >stopped seizing. They did a CT Head scan and they discovered a cyst vs tumor in >the left frontal lobe. At the time I was working in another hospital and had >been in the medical field for more than 15 yrs so I had medical knowledge, but >that does not matter when something happens to a loved one. I thought since they > > >were able to stop her seizure I was going to be able to take her home and follow > > >up with her doctor, wrong! The ER dr said that Leah has to be transferred to a >Hospital with a >peds ICU. That was another unexpected thing I had to take in.. I couldn't ride >in > >the ambulance with her because a Dr, a nurse, a resp therapist, along with two >paramedics were coming to pick her up therefore no room for me. My aunt took me >because I was in no shape to drive. Now you know it is serious when a medical >team is in the transport with your child. Later on in the ER note her condition >was listed as Guarded. Sorry this is so long. My advice to you is to contact >your child's neuro for a visit, and he/she will probably refer you to an >ophthalmalogist. I read later that crossing of the eyes is one of the many >symptoms or indicators of PMG. > >Take care, hope this helped a little, and good luck, > >Elena, mom to Leah 8 yrs old with severe PMG, Intractable seizures, >Quadriplegia, G-tube dependant, severe developmentally delayed, profound mental >retardation, etc., Emilio 17 yrs old, and 23 yrs old.. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2011 Report Share Posted May 21, 2011 Hi again Kat, Well it sounds like your family is dealing with so much right now. I am to the point where I am focused and my priority is keeping Leahs' quality of life at the best as possible. I have sacrificed so much but I couldn't have it any other way. My family support and help has been there and that does make a difference. I am a single mom and Leah's dad and his family have chosen not to be part of her life. They live in the same mobile home park as we do, so they have access to be part of her life. I lost my job of almost 10 yrs at a hospital because my supervisor acted like my daughter was a burden to her, so she constantly harrassed me, made my work enviroment hostile, etc. I was terminated for tardiness which was due to my daughters' seizures. They did not let me use my intermittent family medical leave either. The tardiness hardly exceeded ten mins and if it did I would call or try cuz they would not be reachable most times. So for the past 2 1/2 yrs, we have been struggling financially, but that's ok cuz we have a roof over our heads and Leah is here with us. My son is 17 and I am being patient with him to come around to whats important. My oldest is 23 and has a family of her own. They are coming to visit on Monday staying till Thursday. I can't wait to see my beautiful granddaughter who is 18 months old and talking so much. Take Care, keep the faith, learn everything about your child's condition so you can stay on top of treatment, and listen to your inner voice, intuition, or instincts as they present themselves. Elena. >Hi Elena > >No worries at all, and I agree it can only really be understood by parents who >are going through it. > >Siera is 8mths old now, we found out at 11 weeks and she also had a brain tumour >removed on 1 Feb this year, so the poor girl has been through alot! > > She is my gift though, I love her will all my being. I hope your family is >doing well. > >thanks >Kat > > > > > >________________________________ > >To: polymicrogyria >Sent: Sat, 21 May, 2011 11:00:43 AM >Subject: Re: crossed eyes > > >Thank you Kat. It is so hard for all of us and the intense depth of what we go >through can only be understood by those who are going through the same thing. >How old is your child? I do not post often nor get to read many posts so forgive >me if I have missed anything. Sincerely, Elena. > > > >>Hi, >> >>Your story sounds very familiar to ours, our girl had her first seizure in my >>arms at 11 weeks of age, she had been having regular crossed eyes for weeks >>prior and I was also told it was normal newborn stuff. >> >>It is def very traumatic watching your baby having endless tests done, needles, > >>people handling them non stop, we had a whole night of that too before being >>admitted to a ward, was an awful time. >> >>It sounds like you have done so well, very inspiring. Thank you for sharing your >> >>story. >> >>Kat >> >> >> >> >> >>________________________________ >> >>To: " polymicrogyria " <polymicrogyria > >>Sent: Sat, 21 May, 2011 3:19:44 AM >>Subject: Re: crossed eyes >> >> >>Message flagged >>Wednesday, May 18, 2011 10:58 AM >>Hi, >> >>As you know every child will present symptoms of this disorder at different >>stages and vary in degree. From my experience, my daughter Leah has severe PMG >>and when she was 8 weeks old, I noticed her eyes would cross and I did mention >>this to her Pediatrician but he said it was probably normal and that she would >>probably outgrow it soon. This started right before she had any other >>significant problems. One day after she was 10 weeks old, I noticed her eyes >>would not stop crossing, but after a while she fell asleep. I had to work so my > >>mom was caring for her, later that evening my mom called me and said that >>something was wrong with Leah, that she might be having a seizure. I told her to >> >>call 911 and I will meet them at the ER. I got a call from the paramedic stating >> >>that my baby did not have a temp and if I still wanted them to take her, of >>course I said yes because I knew my mom saw something that concerned her enough > >>to call me. I got to the ER first >>and when they arrived my baby was in a grand mal seizure. I was so scared at >>that moment, how any moment of life can drastically change forever. It was so >>hard to watch a team of ER nurses and techs working hard on this little baby of > >>mine. The ER Dr was so caring and attentive too. Anyway at this point Leah was >>in Status Epilepticus and that is why they were working hard on her. Someone was >> >>finally able to get an IV started and they gave her IV Ativan twice before she >>stopped seizing. They did a CT Head scan and they discovered a cyst vs tumor in > >>the left frontal lobe. At the time I was working in another hospital and had >>been in the medical field for more than 15 yrs so I had medical knowledge, but >>that does not matter when something happens to a loved one. I thought since they >> >>were able to stop her seizure I was going to be able to take her home and follow >> >>up with her doctor, wrong! The ER dr said that Leah has to be transferred to a >>Hospital with a >>peds ICU. That was another unexpected thing I had to take in.. I couldn't ride >>in >> >>the ambulance with her because a Dr, a nurse, a resp therapist, along with two >>paramedics were coming to pick her up therefore no room for me. My aunt took me > >>because I was in no shape to drive. Now you know it is serious when a medical >>team is in the transport with your child. Later on in the ER note her condition > >>was listed as Guarded. Sorry this is so long. My advice to you is to contact >>your child's neuro for a visit, and he/she will probably refer you to an >>ophthalmalogist. I read later that crossing of the eyes is one of the many >>symptoms or indicators of PMG. >> >>Take care, hope this helped a little, and good luck, >> >>Elena, mom to Leah 8 yrs old with severe PMG, Intractable seizures, >>Quadriplegia, G-tube dependant, severe developmentally delayed, profound mental > >>retardation, etc., Emilio 17 yrs old, and 23 yrs old. >> >> >> Quote Link to comment Share on other sites More sharing options...
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