There have been so many things going on around here that I am honestly not sure where to start! I guess I should go back and look at my last relevant post and see what it was about and start from there!
Ah yes, I said I would post Q&A about the meeting/appt with Phillip's neurologist... I wonder if I can find them... LOL. Let me see.....
Ah Ha!! I found them! Here they are:
1) What is your translation of his MRI?
The dr and I discussed this at length - but basically he said the white spots on his MRI are "from cells that did not 'make it' (migrate) to where they were supposed to and then calcified" He also has either scar tissue or a cyst - that formed from some sort of infection that I had while pregnant. This is considered a brain injury. He also has PMG, cortical dysplasia, and pachygyria. (These will be discussed on his website soon). Last but not least his Hippocampus is smaller than the age of his brain and also brighter - this is caused from multiple Status Epilepticus.
2) What is PVL and does he have it? Is it something I should be aware of?
Or something that can change over time?
PVL: Periventricular leukomalasia (PVL) is a type of brain injury involving an
ischemic infarction (inadequate blood circulation) of the white matter of the
brain adjacent to the lateral ventricles. Peri means near; ventricular refers to
the ventricles or fluid spaces of the brain, leukomalasia is softening of the
white matter of the brain. Phillip does not have PVL - it looks like it but it is actually calcification of malformed brain matter.
3) Does he have Lennox-Gastaut Syndrome??
No, his EEG is not typical of LGS.
4) I have been told that he has PMG, migrational anomolies (sp?), and
cortical dyslasia (dysgenesis).... but when I researched them - they seemed to
mean different things. Are they all the same thing? Does he have them
all?
No, they are not all the same thing and yes, Phillip's brain has all of them. **please see future page on his website for description/definition of each of these**
5) If the paralysis from the seizure in 2009 was Todd's Paralysis - why
didn't it ever go away completely? And why does it weaken him again when he has
generalized seizures?
Phillip's brain is already weakened due to the damage from Status Epilepticus lasting so long and when he has a tonic clonic seizure it weakens those cells further and they need time to re-strengthen.
6) Would it be good for us to have an oxygen supply at home for him - for
when he has trouble breathing during a seizure?
I do not generally suggest oxygen for patients with seizures because typically- if a seizure is causing them to not breath well it is because the muscles are contracting and cutting off air flow - therefore oxygen would not be able to get IN either.
7) Will we still be able to wean him off of his topomax even though he is
having these smaller seizures?
Yes if he remains convulsive seizure free until his next appointment we will discuss the weaning process. **Phillip has not remained seizure free so this will not be happening in the near future :( **
8) Is a Responsive Neurostimulator an option for him?
At this time they are not approved for children, but we will continue to watch the criteria and studies and maybe it will be a possibility in the future.
9) He has been having a facial "grimmacing" on one side of his face -
sometimes it only happens once - sometimes a few times in a row. Sometimes it
involves his face and shoulder - could this be a seizure?
Yes, this could be seizure activity but I do not feel that we need to try and medicate for it at this time. If they get worse or start causing him to have generalized seizures then we will re-evaluate.
THATS ALL FOLKS :)
Since my last blog - he has had another tonic clonic seizure (just a few days ago) that was much like the one in December. I am not sure if this one started as a complex partial because we were in bed asleep and he woke me up when he started jerking. This one was different in that his jaw was opening and closing - and he has never done this before. From my understanding - when different parts of the body are involved its because different parts of the brain are involved... I pray and wish they would just stop!
So much going on: He turned TWELVE!! Its so hard for me to believe that twelve years ago I gave birth to a beautifully perfect 'bouncing baby boy'.... and I had no idea what was to come. I think most people go into having a child assuming that everything is going to be fine - that they will just have a child that has normal growth and developmental milestones. Alot of people - especially younger mothers - I don't think realize the potential for 'trouble' with things that the Dr's just can't test for while the baby is inutero. When I talk to my younger cousins and family friends I always try to explain to them that even though the odds are small - there is ALWAYS a possibility for them to have a special child. And that with that special child comes So many more responsibilities than a typical infant. I think its important for them to know and be aware of the possibilities. Especially with things like Autism and Epilepsy on the rise in the populations.
Anyway - twelve years old. Its worrisome to me - thinking about all the changes that he will be going thru in the next year - new school, new teacher, new routines, new friends.... and he doesn't always do so great with change. Please pray for him as we continue thru the next year and all these changes.
We celebrated Christmas with our family on Christmas eve and he was so thrilled to have them here - especially his Meme who was here for a while with us. Also he had an extended visit with his cousins: Kayla, katie, Luke and Abi - before they made their long move to Alabama. He loved having them here - he and Katie have an awesome relationship- she is so kind and patient with him. I will forever be thankful for her love and kindness to him. Along with his cousins was his Uncle Scott who is growing quite a relationship with his "Uncle Silldip" (a long time nickname for Phillip). Phillip's eyes light up when you even mention his Uncle Scott and that just warms my heart. My brother means the world to me. :)
So anyway, Christmas was a wonderfully long even from preparation to the last present. All of the kids were thrilled and even Phillip got toys this year (instead of just his normal video's and books). They had a blast opening presents and oooh'ing and aaah'ing over each others' gifts. I have been truly blessed with children who are thankful for every gift no matter how big or small. <3
Christmas gave way to New Year which Phillip slept thru. And then back to school and starting practice for Special Olympics Swimming. Phillip ADORES swimming - and is awesome at it... his only problem is that during competition he is so distracted by all the sights and sounds - that he just wants to get in the water and play and wave to all the spectators. Hes so silly! He has won his share of first place ribbons - but the last few years its been more 2nd and down for him because he just doesn't quite get the concept of "winning"... but all that matters to us is that he gets out there and has an awesome time - and we are proud of him no matter what color ribbon he brings home!
Then along came his birthday - unfortunatly his birthday falls right when winter is finally picking up here in the south - so my family is never able to make it to a party for him. Typically we take him to dinner and have a cake for his actual birth day and then we celebrate later in the year - when my family is more able to travel to where we live. He loves a good pool party so we are planning another one for this summer for him. Who knows- maybe we will see you there :)
We have been so blessed where Phillip's health is concerned. He may have a runny/stuffy nose but he seldom ever gets really sick and we haven't had to deal with the flu with him in years. I am so thankful for that. Being sick lowers his seizure thresh hold so much that every sickness is scary. And he has hardly missed any school this year which is Awesome!
I guess that's all for now. If i think of anything else I will update as I can. Thank you for reading and caring. We are so thankful for you too. ~m
Ah yes, I said I would post Q&A about the meeting/appt with Phillip's neurologist... I wonder if I can find them... LOL. Let me see.....
Ah Ha!! I found them! Here they are:
1) What is your translation of his MRI?
The dr and I discussed this at length - but basically he said the white spots on his MRI are "from cells that did not 'make it' (migrate) to where they were supposed to and then calcified" He also has either scar tissue or a cyst - that formed from some sort of infection that I had while pregnant. This is considered a brain injury. He also has PMG, cortical dysplasia, and pachygyria. (These will be discussed on his website soon). Last but not least his Hippocampus is smaller than the age of his brain and also brighter - this is caused from multiple Status Epilepticus.
2) What is PVL and does he have it? Is it something I should be aware of?
Or something that can change over time?
PVL: Periventricular leukomalasia (PVL) is a type of brain injury involving an
ischemic infarction (inadequate blood circulation) of the white matter of the
brain adjacent to the lateral ventricles. Peri means near; ventricular refers to
the ventricles or fluid spaces of the brain, leukomalasia is softening of the
white matter of the brain. Phillip does not have PVL - it looks like it but it is actually calcification of malformed brain matter.
3) Does he have Lennox-Gastaut Syndrome??
No, his EEG is not typical of LGS.
4) I have been told that he has PMG, migrational anomolies (sp?), and
cortical dyslasia (dysgenesis).... but when I researched them - they seemed to
mean different things. Are they all the same thing? Does he have them
all?
No, they are not all the same thing and yes, Phillip's brain has all of them. **please see future page on his website for description/definition of each of these**
5) If the paralysis from the seizure in 2009 was Todd's Paralysis - why
didn't it ever go away completely? And why does it weaken him again when he has
generalized seizures?
Phillip's brain is already weakened due to the damage from Status Epilepticus lasting so long and when he has a tonic clonic seizure it weakens those cells further and they need time to re-strengthen.
6) Would it be good for us to have an oxygen supply at home for him - for
when he has trouble breathing during a seizure?
I do not generally suggest oxygen for patients with seizures because typically- if a seizure is causing them to not breath well it is because the muscles are contracting and cutting off air flow - therefore oxygen would not be able to get IN either.
7) Will we still be able to wean him off of his topomax even though he is
having these smaller seizures?
Yes if he remains convulsive seizure free until his next appointment we will discuss the weaning process. **Phillip has not remained seizure free so this will not be happening in the near future :( **
8) Is a Responsive Neurostimulator an option for him?
At this time they are not approved for children, but we will continue to watch the criteria and studies and maybe it will be a possibility in the future.
9) He has been having a facial "grimmacing" on one side of his face -
sometimes it only happens once - sometimes a few times in a row. Sometimes it
involves his face and shoulder - could this be a seizure?
Yes, this could be seizure activity but I do not feel that we need to try and medicate for it at this time. If they get worse or start causing him to have generalized seizures then we will re-evaluate.
THATS ALL FOLKS :)
Since my last blog - he has had another tonic clonic seizure (just a few days ago) that was much like the one in December. I am not sure if this one started as a complex partial because we were in bed asleep and he woke me up when he started jerking. This one was different in that his jaw was opening and closing - and he has never done this before. From my understanding - when different parts of the body are involved its because different parts of the brain are involved... I pray and wish they would just stop!
So much going on: He turned TWELVE!! Its so hard for me to believe that twelve years ago I gave birth to a beautifully perfect 'bouncing baby boy'.... and I had no idea what was to come. I think most people go into having a child assuming that everything is going to be fine - that they will just have a child that has normal growth and developmental milestones. Alot of people - especially younger mothers - I don't think realize the potential for 'trouble' with things that the Dr's just can't test for while the baby is inutero. When I talk to my younger cousins and family friends I always try to explain to them that even though the odds are small - there is ALWAYS a possibility for them to have a special child. And that with that special child comes So many more responsibilities than a typical infant. I think its important for them to know and be aware of the possibilities. Especially with things like Autism and Epilepsy on the rise in the populations.
Anyway - twelve years old. Its worrisome to me - thinking about all the changes that he will be going thru in the next year - new school, new teacher, new routines, new friends.... and he doesn't always do so great with change. Please pray for him as we continue thru the next year and all these changes.
We celebrated Christmas with our family on Christmas eve and he was so thrilled to have them here - especially his Meme who was here for a while with us. Also he had an extended visit with his cousins: Kayla, katie, Luke and Abi - before they made their long move to Alabama. He loved having them here - he and Katie have an awesome relationship- she is so kind and patient with him. I will forever be thankful for her love and kindness to him. Along with his cousins was his Uncle Scott who is growing quite a relationship with his "Uncle Silldip" (a long time nickname for Phillip). Phillip's eyes light up when you even mention his Uncle Scott and that just warms my heart. My brother means the world to me. :)
So anyway, Christmas was a wonderfully long even from preparation to the last present. All of the kids were thrilled and even Phillip got toys this year (instead of just his normal video's and books). They had a blast opening presents and oooh'ing and aaah'ing over each others' gifts. I have been truly blessed with children who are thankful for every gift no matter how big or small. <3
Christmas gave way to New Year which Phillip slept thru. And then back to school and starting practice for Special Olympics Swimming. Phillip ADORES swimming - and is awesome at it... his only problem is that during competition he is so distracted by all the sights and sounds - that he just wants to get in the water and play and wave to all the spectators. Hes so silly! He has won his share of first place ribbons - but the last few years its been more 2nd and down for him because he just doesn't quite get the concept of "winning"... but all that matters to us is that he gets out there and has an awesome time - and we are proud of him no matter what color ribbon he brings home!
Then along came his birthday - unfortunatly his birthday falls right when winter is finally picking up here in the south - so my family is never able to make it to a party for him. Typically we take him to dinner and have a cake for his actual birth day and then we celebrate later in the year - when my family is more able to travel to where we live. He loves a good pool party so we are planning another one for this summer for him. Who knows- maybe we will see you there :)
We have been so blessed where Phillip's health is concerned. He may have a runny/stuffy nose but he seldom ever gets really sick and we haven't had to deal with the flu with him in years. I am so thankful for that. Being sick lowers his seizure thresh hold so much that every sickness is scary. And he has hardly missed any school this year which is Awesome!
I guess that's all for now. If i think of anything else I will update as I can. Thank you for reading and caring. We are so thankful for you too. ~m