Guest guest Posted August 24, 2012 Report Share Posted August 24, 2012 Hi Aga, Dr. Orrin Devinsky and his team at NY University in New York city specialize in pediatric epilepsy and polymicrogyria, I'm not totally sure, but my impression is that surgery is only done when everything else has failed (not only meds but that specialized diet (see JOhns Hopkins' website), as well as vagus nerve stimulation implants (which they probably don't do on babies). Best of luck, Thea in NY surgery Hi, my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? Many thanks for any answer! Aga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2012 Report Share Posted August 24, 2012 Aga We had surgery at Cleveland Clinic a year ago. Went to the reunion 2 weeks ago and met about 50 families who'd had the surgery there. It was amazing. Sent from my iPhone > Hi Aga, > Dr. Orrin Devinsky and his team at NY University in New York city specialize in pediatric epilepsy and polymicrogyria, I'm not totally sure, but my impression is that surgery is only done when everything else has failed (not only meds but that specialized diet (see JOhns Hopkins' website), as well as vagus nerve stimulation implants (which they probably don't do on babies). > Best of luck, > Thea in NY > > surgery > > Hi, > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > Many thanks for any answer! Aga > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2012 Report Share Posted August 24, 2012 who did it? and is your child on any meds now???? surgery > > Hi, > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > Many thanks for any answer! Aga > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2012 Report Share Posted August 24, 2012 Many places (academic facilities) may want you to wait and watch the brain develop so they can see it better on MRI film before they would consider surgery. I was told to wait until 3 yrs old to get best images for mor accurate surgery approach. We went to Boston Childrens and surgery was not an option. Frontal left lobe but there were 2 other areas effected with PMG. We did VNS and it helped a ton. He was 4 when he got VNS but it can be done much earlier. Sent from my Verizon Wireless BlackBerry surgery > > Hi, > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > Many thanks for any answer! Aga > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2012 Report Share Posted August 24, 2012 Dr. Bingaman did it. No seizures. Off all meds except one that's been reduced), starting final wean next week. EEG clean. Here's my number if you want to talk. . Sent from my iPhone > who did it? and is your child on any meds now???? > > > surgery > > > > Hi, > > > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > > Many thanks for any answer! Aga > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2012 Report Share Posted August 24, 2012 Aga, My daughter has right sided only PMG affecting all lobes. The worst of it is a very dense area in the frontal/temporal area causing left hemiparesis cerebral pasly. She also has epilepsy and her EEG just has abnormal spiking that sometimes leads to generalized seizures this is worse at night. Last summer she was getting very uncontrolled with regression and neurosurgery wanted to remove some of her frontal lobe but we had a second opinion. Dr. Dobyns is a PMG expert recommended that we see an epilepsy specialist in Detroit Dr Chugani. He did a PET scan and Video EEG and said that she would loose the total use of her left hand. He had medication changes and said their are many medication, diet and supplement options available. If you son is not making forward progress with development the EEG must be out of control but don't stop the therapy.On her PET scan is did show where their were areas where parts of her healthy brain has taken over for her malformation or missing areas. Understand that therapy and the focus on gross motor development helps to stimulate cognitive skills. Nisha looks nothing like her tests show. So I encourage to read a book The Brain that Changes Itself and seek good therapist to help your son. I did notice that having therapy on a horse really helps because the movement of the horse helps other skills to be focused on. Diane mom Nisha 5 just started Kindergarten all day To: polymicrogyria From: agamikulska@... Date: Fri, 24 Aug 2012 07:20:50 -0700 Subject: surgery Hi, my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? Many thanks for any answer! Aga Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2012 Report Share Posted August 24, 2012 At what age did you start the hippotherapy (horse therapy)? I'm very interested in this for my son. We are in MI. Thanks! “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > > Aga, My daughter has right sided only PMG affecting all lobes. The worst of it is a very dense area in the frontal/temporal area causing left hemiparesis cerebral pasly. She also has epilepsy and her EEG just has abnormal spiking that sometimes leads to generalized seizures this is worse at night. Last summer she was getting very uncontrolled with regression and neurosurgery wanted to remove some of her frontal lobe but we had a second opinion. Dr. Dobyns is a PMG expert recommended that we see an epilepsy specialist in Detroit Dr Chugani. He did a PET scan and Video EEG and said that she would loose the total use of her left hand. He had medication changes and said their are many medication, diet and supplement options available. If you son is not making forward progress with development the EEG must be out of control but don't stop the therapy.On her PET scan is did show where their were areas where parts of her healthy brain has taken over for her malformation or missing areas. Understand that therapy and the focus on gross motor development helps to stimulate cognitive skills. Nisha looks nothing like her tests show. So I encourage to read a book The Brain that Changes Itself and seek good therapist to help your son. I did notice that having therapy on a horse really helps because the movement of the horse helps other skills to be focused on. > Diane mom Nisha 5 just started Kindergarten all day > > To: polymicrogyria > From: agamikulska@... > Date: Fri, 24 Aug 2012 07:20:50 -0700 > Subject: surgery > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > > Many thanks for any answer! Aga > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2012 Report Share Posted August 25, 2012 4 years old Sent from Samsung Conquer™ 4G Kim Throgmartin wrote: At what age did you start the hippotherapy (horse therapy)? I'm very interested in this for my son. We are in MI. Thanks! “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > > Aga, My daughter has right sided only PMG affecting all lobes. The worst of it is a very dense area in the frontal/temporal area causing left hemiparesis cerebral pasly. She also has epilepsy and her EEG just has abnormal spiking that sometimes leads to generalized seizures this is worse at night. Last summer she was getting very uncontrolled with regression and neurosurgery wanted to remove some of her frontal lobe but we had a second opinion. Dr. Dobyns is a PMG expert recommended that we see an epilepsy specialist in Detroit Dr Chugani. He did a PET scan and Video EEG and said that she would loose the total use of her left hand. He had medication changes and said their are many medication, diet and supplement options available. If you son is not making forward progress with development the EEG must be out of control but don't stop the therapy.On her PET scan is did show where their were areas where parts of her healthy brain has taken over for her malformation or missing areas. Understand that therapy and the focus on gross motor development helps to stimulate cognitive skills. Nisha looks nothing like her tests show. So I encourage to read a book The Brain that Changes Itself and seek good therapist to help your son. I did notice that having therapy on a horse really helps because the movement of the horse helps other skills to be focused on. > Diane mom Nisha 5 just started Kindergarten all day > > To: polymicrogyria > From: agamikulska@... > Date: Fri, 24 Aug 2012 07:20:50 -0700 > Subject: surgery > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > > Many thanks for any answer! Aga > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2012 Report Share Posted August 25, 2012 My son started hippotherapy when he was two. He is three now and he loves it. I have seen a big improvement in his core strength and confidence. The place I take him to is in Illinois and the owner is the nicest man. He wants to expand his program and services to children who can't afford it, does anyone know of any grants he can apply for. Sent from my iPhone > 4 years old > > Sent from Samsung Conquer™ 4G > > Kim Throgmartin wrote: > > At what age did you start the hippotherapy (horse therapy)? I'm very interested in this for my son. We are in MI. Thanks! > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > > > > > > Aga, My daughter has right sided only PMG affecting all lobes. The worst of it is a very dense area in the frontal/temporal area causing left hemiparesis cerebral pasly. She also has epilepsy and her EEG just has abnormal spiking that sometimes leads to generalized seizures this is worse at night. Last summer she was getting very uncontrolled with regression and neurosurgery wanted to remove some of her frontal lobe but we had a second opinion. Dr. Dobyns is a PMG expert recommended that we see an epilepsy specialist in Detroit Dr Chugani. He did a PET scan and Video EEG and said that she would loose the total use of her left hand. He had medication changes and said their are many medication, diet and supplement options available. If you son is not making forward progress with development the EEG must be out of control but don't stop the therapy.On her PET scan is did show where their were areas where parts of her healthy brain has taken over for her malformation or missing areas. Understand that therapy and the focus on gross motor development helps to stimulate cognitive skills. Nisha looks nothing like her tests show. So I encourage to read a book The Brain that Changes Itself and seek good therapist to help your son. I did notice that having therapy on a horse really helps because the movement of the horse helps other skills to be focused on. > > Diane mom Nisha 5 just started Kindergarten all day > > > > To: polymicrogyria > > From: agamikulska@... > > Date: Fri, 24 Aug 2012 07:20:50 -0700 > > Subject: surgery > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > > > > Many thanks for any answer! Aga > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2012 Report Share Posted August 25, 2012 There is a grant my son gets since his dad is a veteran. They provide a scholarship for the year. We live in Texas. My son has been riding for 2.5 years. It really helps him! Sent from my iPhone > My son started hippotherapy when he was two. He is three now and he loves it. I have seen a big improvement in his core strength and confidence. The place I take him to is in Illinois and the owner is the nicest man. He wants to expand his program and services to children who can't afford it, does anyone know of any grants he can apply for. > > Sent from my iPhone > > > > > 4 years old > > > > Sent from Samsung Conquer™ 4G > > > > Kim Throgmartin wrote: > > > > At what age did you start the hippotherapy (horse therapy)? I'm very interested in this for my son. We are in MI. Thanks! > > > > “I am learning all the time. The tombstone will be my diploma.†> > — Eartha Kitt > > > > > > > > > > > > Aga, My daughter has right sided only PMG affecting all lobes. The worst of it is a very dense area in the frontal/temporal area causing left hemiparesis cerebral pasly. She also has epilepsy and her EEG just has abnormal spiking that sometimes leads to generalized seizures this is worse at night. Last summer she was getting very uncontrolled with regression and neurosurgery wanted to remove some of her frontal lobe but we had a second opinion. Dr. Dobyns is a PMG expert recommended that we see an epilepsy specialist in Detroit Dr Chugani. He did a PET scan and Video EEG and said that she would loose the total use of her left hand. He had medication changes and said their are many medication, diet and supplement options available. If you son is not making forward progress with development the EEG must be out of control but don't stop the therapy.On her PET scan is did show where their were areas where parts of her healthy brain has taken over for her malformation or missing areas. Understand that therapy and the focus on gross motor development helps to stimulate cognitive skills. Nisha looks nothing like her tests show. So I encourage to read a book The Brain that Changes Itself and seek good therapist to help your son. I did notice that having therapy on a horse really helps because the movement of the horse helps other skills to be focused on. > > > Diane mom Nisha 5 just started Kindergarten all day > > > > > > To: polymicrogyria > > > From: agamikulska@... > > > Date: Fri, 24 Aug 2012 07:20:50 -0700 > > > Subject: surgery > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > > > > > > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > > > > > > Many thanks for any answer! Aga > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2012 Report Share Posted August 25, 2012 Thanks so much for all the replies! My son will be two in November, so I am going to start investigating this now. And sorry to hijack this thread for a minute. When I read that Nisha was only five and had already had hippotherapy I had to ask. For some reason I had it in my head that they'd need to be a bit older for this therapy. Thanks again!! “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > There is a grant my son gets since his dad is a veteran. They provide a scholarship for the year. We live in Texas. My son has been riding for 2.5 years. It really helps him! > > Sent from my iPhone > > > > > My son started hippotherapy when he was two. He is three now and he loves it. I have seen a big improvement in his core strength and confidence. The place I take him to is in Illinois and the owner is the nicest man. He wants to expand his program and services to children who can't afford it, does anyone know of any grants he can apply for. > > > > Sent from my iPhone > > > > > > > > > 4 years old > > > > > > Sent from Samsung Conquer™ 4G > > > > > > Kim Throgmartin wrote: > > > > > > At what age did you start the hippotherapy (horse therapy)? I'm very interested in this for my son. We are in MI. Thanks! > > > > > > “I am learning all the time. The tombstone will be my diploma.†> > > — Eartha Kitt > > > > > > > > > > > > > > > > > Aga, My daughter has right sided only PMG affecting all lobes. The worst of it is a very dense area in the frontal/temporal area causing left hemiparesis cerebral pasly. She also has epilepsy and her EEG just has abnormal spiking that sometimes leads to generalized seizures this is worse at night. Last summer she was getting very uncontrolled with regression and neurosurgery wanted to remove some of her frontal lobe but we had a second opinion. Dr. Dobyns is a PMG expert recommended that we see an epilepsy specialist in Detroit Dr Chugani. He did a PET scan and Video EEG and said that she would loose the total use of her left hand. He had medication changes and said their are many medication, diet and supplement options available. If you son is not making forward progress with development the EEG must be out of control but don't stop the therapy.On her PET scan is did show where their were areas where parts of her healthy brain has taken over for her malformation or missing areas. Understand that therapy and the focus on gross motor development helps to stimulate cognitive skills. Nisha looks nothing like her tests show. So I encourage to read a book The Brain that Changes Itself and seek good therapist to help your son. I did notice that having therapy on a horse really helps because the movement of the horse helps other skills to be focused on. > > > > Diane mom Nisha 5 just started Kindergarten all day > > > > > > > > To: polymicrogyria > > > > From: agamikulska@... > > > > Date: Fri, 24 Aug 2012 07:20:50 -0700 > > > > Subject: surgery > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > > > > > > > > > > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > > > > > > > > Many thanks for any answer! Aga > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2012 Report Share Posted August 25, 2012 Thanks a lot for the info, do you know the name of the grant? Sent from my iPhone > There is a grant my son gets since his dad is a veteran. They provide a scholarship for the year. We live in Texas. My son has been riding for 2.5 years. It really helps him! > > Sent from my iPhone > > > > > My son started hippotherapy when he was two. He is three now and he loves it. I have seen a big improvement in his core strength and confidence. The place I take him to is in Illinois and the owner is the nicest man. He wants to expand his program and services to children who can't afford it, does anyone know of any grants he can apply for. > > > > Sent from my iPhone > > > > > > > > > 4 years old > > > > > > Sent from Samsung Conquer™ 4G > > > > > > Kim Throgmartin wrote: > > > > > > At what age did you start the hippotherapy (horse therapy)? I'm very interested in this for my son. We are in MI. Thanks! > > > > > > “I am learning all the time. The tombstone will be my diploma.†> > > — Eartha Kitt > > > > > > > > > > > > > > > > > Aga, My daughter has right sided only PMG affecting all lobes. The worst of it is a very dense area in the frontal/temporal area causing left hemiparesis cerebral pasly. She also has epilepsy and her EEG just has abnormal spiking that sometimes leads to generalized seizures this is worse at night. Last summer she was getting very uncontrolled with regression and neurosurgery wanted to remove some of her frontal lobe but we had a second opinion. Dr. Dobyns is a PMG expert recommended that we see an epilepsy specialist in Detroit Dr Chugani. He did a PET scan and Video EEG and said that she would loose the total use of her left hand. He had medication changes and said their are many medication, diet and supplement options available. If you son is not making forward progress with development the EEG must be out of control but don't stop the therapy.On her PET scan is did show where their were areas where parts of her healthy brain has taken over for her malformation or missing areas. Understand that therapy and the focus on gross motor development helps to stimulate cognitive skills. Nisha looks nothing like her tests show. So I encourage to read a book The Brain that Changes Itself and seek good therapist to help your son. I did notice that having therapy on a horse really helps because the movement of the horse helps other skills to be focused on. > > > > Diane mom Nisha 5 just started Kindergarten all day > > > > > > > > To: polymicrogyria > > > > From: agamikulska@... > > > > Date: Fri, 24 Aug 2012 07:20:50 -0700 > > > > Subject: surgery > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > > > > > > > > > > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > > > > > > > > Many thanks for any answer! Aga > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2012 Report Share Posted August 25, 2012 “Horses for Heroes Family Scholarshipsâ€. This scholarship is made possible by a grant from the Texas Veterans Commission Fund for Veterans’ Assistance. The Fund for Veterans’ Assistance provides grants to organizations serving veterans and their families. Sent from my iPhone > Thanks a lot for the info, do you know the name of the grant? > > Sent from my iPhone > > > > > There is a grant my son gets since his dad is a veteran. They provide a scholarship for the year. We live in Texas. My son has been riding for 2.5 years. It really helps him! > > > > Sent from my iPhone > > > > > > > > > My son started hippotherapy when he was two. He is three now and he loves it. I have seen a big improvement in his core strength and confidence. The place I take him to is in Illinois and the owner is the nicest man. He wants to expand his program and services to children who can't afford it, does anyone know of any grants he can apply for. > > > > > > Sent from my iPhone > > > > > > > > > > > > > 4 years old > > > > > > > > Sent from Samsung Conquerâ„¢ 4G > > > > > > > > Kim Throgmartin wrote: > > > > > > > > At what age did you start the hippotherapy (horse therapy)? I'm very interested in this for my son. We are in MI. Thanks! > > > > > > > > “I am learning all the time. The tombstone will be my diploma.†> > > > — Eartha Kitt > > > > > > > > > > > > > > > > > > > > > > Aga, My daughter has right sided only PMG affecting all lobes. The worst of it is a very dense area in the frontal/temporal area causing left hemiparesis cerebral pasly. She also has epilepsy and her EEG just has abnormal spiking that sometimes leads to generalized seizures this is worse at night. Last summer she was getting very uncontrolled with regression and neurosurgery wanted to remove some of her frontal lobe but we had a second opinion. Dr. Dobyns is a PMG expert recommended that we see an epilepsy specialist in Detroit Dr Chugani. He did a PET scan and Video EEG and said that she would loose the total use of her left hand. He had medication changes and said their are many medication, diet and supplement options available. If you son is not making forward progress with development the EEG must be out of control but don't stop the therapy.On her PET scan is did show where their were areas where parts of her healthy brain has taken over for her malformation or missing areas. Understand that therapy and the focus on gross motor development helps to stimulate cognitive skills. Nisha looks nothing like her tests show. So I encourage to read a book The Brain that Changes Itself and seek good therapist to help your son. I did notice that having therapy on a horse really helps because the movement of the horse helps other skills to be focused on. > > > > > Diane mom Nisha 5 just started Kindergarten all day > > > > > > > > > > To: polymicrogyria > > > > > From: agamikulska@... > > > > > Date: Fri, 24 Aug 2012 07:20:50 -0700 > > > > > Subject: surgery > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > > > > > > > > > > > > > > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > > > > > > > > > > Many thanks for any answer! Aga > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2012 Report Share Posted August 25, 2012 you can start hippotherapy anytime. The therapy is great for all of the kids. ________________________________ To: " polymicrogyria " <polymicrogyria > Sent: Friday, August 24, 2012 11:59 PM Subject: Re: surgery  At what age did you start the hippotherapy (horse therapy)? I'm very interested in this for my son. We are in MI. Thanks! “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt On Aug 24, 2012, at 10:58 PM, Diane Roy <mailto:deszone25%40hotmail.com> wrote: > > Aga, My daughter has right sided only PMG affecting all lobes. The worst of it is a very dense area in the frontal/temporal area causing left hemiparesis cerebral pasly. She also has epilepsy and her EEG just has abnormal spiking that sometimes leads to generalized seizures this is worse at night. Last summer she was getting very uncontrolled with regression and neurosurgery wanted to remove some of her frontal lobe but we had a second opinion. Dr. Dobyns is a PMG expert recommended that we see an epilepsy specialist in Detroit Dr Chugani. He did a PET scan and Video EEG and said that she would loose the total use of her left hand. He had medication changes and said their are many medication, diet and supplement options available. If you son is not making forward progress with development the EEG must be out of control but don't stop the therapy.On her PET scan is did show where their were areas where parts of her healthy brain has taken over for her malformation or missing areas. Understand that therapy and the focus on gross motor development helps to stimulate cognitive skills. Nisha looks nothing like her tests show. So I encourage to read a book The Brain that Changes Itself and seek good therapist to help your son. I did notice that having therapy on a horse really helps because the movement of the horse helps other skills to be focused on. > Diane mom Nisha 5 just started Kindergarten all day > > To: mailto:polymicrogyria%40yahoogroups.com > From: mailto:agamikulska%40yahoo.com > Date: Fri, 24 Aug 2012 07:20:50 -0700 > Subject: surgery > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > > Many thanks for any answer! Aga > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2012 Report Share Posted August 25, 2012 My son , who is now 5 yrs old, started hippo therapy when he was 2 years old. He continues to go every week. Sent from my iPhone > you can start hippotherapy anytime. The therapy is great for all of the kids. > > ________________________________ > > To: " polymicrogyria " <polymicrogyria > > Sent: Friday, August 24, 2012 11:59 PM > Subject: Re: surgery > > > > > At what age did you start the hippotherapy (horse therapy)? I'm very interested in this for my son. We are in MI. Thanks! > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > On Aug 24, 2012, at 10:58 PM, Diane Roy <mailto:deszone25%40hotmail.com> wrote: > > > > > Aga, My daughter has right sided only PMG affecting all lobes. The worst of it is a very dense area in the frontal/temporal area causing left hemiparesis cerebral pasly. She also has epilepsy and her EEG just has abnormal spiking that sometimes leads to generalized seizures this is worse at night. Last summer she was getting very uncontrolled with regression and neurosurgery wanted to remove some of her frontal lobe but we had a second opinion. Dr. Dobyns is a PMG expert recommended that we see an epilepsy specialist in Detroit Dr Chugani. He did a PET scan and Video EEG and said that she would loose the total use of her left hand. He had medication changes and said their are many medication, diet and supplement options available. If you son is not making forward progress with development the EEG must be out of control but don't stop the therapy.On her PET scan is did show where their were areas where parts of her healthy brain has taken over for her > malformation or missing areas. Understand that therapy and the focus on gross motor development helps to stimulate cognitive skills. Nisha looks nothing like her tests show. So I encourage to read a book The Brain that Changes Itself and seek good therapist to help your son. I did notice that having therapy on a horse really helps because the movement of the horse helps other skills to be focused on. > > Diane mom Nisha 5 just started Kindergarten all day > > > > To: mailto:polymicrogyria%40yahoogroups.com > > From: mailto:agamikulska%40yahoo.com > > Date: Fri, 24 Aug 2012 07:20:50 -0700 > > Subject: surgery > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > > > my one year old son has polymicrogyria in the righ frontal lobe. Because of this he suffer from epilepsy (medicaly resistnat) what results in psycho and physical retardation. I heard that in some cases sugery can help. Has any of you some experience, knowlage in this area? Is there any hospital in the world specialised in polymicrogyria? > > > > Many thanks for any answer! Aga > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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