A new diagnosis to add to the list...
Well, it was confirmed that what Willow had about a week ago was indeed a seizure - there is no doubt in the mind of her neurologist; but the EEG came back clear for any seizure activity... So my question was where does that leave us? It leaves us adding a new diagnosis to her medical dictionary. :(
She has Encephalopathy, a real big fancy word for something we already knew she had - only this is a bit worse. The National Institute of Health defines it as this, "Encephalopathy is a term for any diffuse disease of the brain that alters brain function or structure". Diffuse meaning brain loss, well we knew that Willow has quite a bit of white matter loss, but honestly she is 2 1/2 years old and aside from currently being behind in speech you wouldn't know anything was wrong. I guess I had it deep in my head that we wouldn't really see what this 'white matter loss' meant to her or for her until school started. I don't know why, but I felt for a bit, we were doing great.
Then the seizure took place about a week ago and that turned our world upside down. It gave us a quick reminder that no matter how much we have on our plates in our life we still have Willow that can turn it upside down real quick! LOL So we spoke with neurosurgeon's office and they called in a CT and chest series of X-rays to be done on the next day, neurology said to go ahead with the EEG and we will go from there. So we thought honestly we were heading down the road to surgery! Wow were we wrong.
To explain a bit more about Encephalopathy, is a bit hard honestly. I can say there are many factors that can lead to this condition. For Willow it has been her extensive surgeries in a short time period as well as her hydrocephalus in general. We have to remember the first initial diagnosis in her journey was she had no brain due to the size of her ventricles! NO BRAIN!! Well, we know that isn't true, but it suffered a lot of damage for being squished. :(
What will this mean for her future, well after sleeping on it for a night, I will say I am not sure. I can say this though - Alzheimer's and Dementia are two forms of Encephalopathy, and we can expect things associated with those two conditions to happen to her. Other symptoms can include: "progressive loss of memory and cognitive ability, subtle personality changes, inability to concentrate, lethargy, and progressive loss of consciousness. Other neurological symptoms may include myoclonus (involuntary twitching of a muscle or group of muscles), nystagmus (rapid, involuntary eye movement), tremor, muscle atrophy and weakness, dementia, seizures, and loss of ability to swallow or speak". (http://www.ninds.nih.gov/disorders/encephalopathy/encephalopathy.htm)
Willow has already had quite a few of those symptoms 'pop up' over the last couple of months, that we never put much thought into, but now upon reading it, can say - oh yeah.... Some things such as lethargy, the myoclonus (involuntary twitching), nystagmus, and of course the seizure. So with all that said, we can say that her brain loss is progressing in a way that is affecting her life (not hugely at this time), but is beginning to show signs. There will be a point in her life where she will reach her peak, and then begin to digress downhill. We don't know when that will happen, but that it will.
We have tried to place this all into perspective for our lives, but the first initial day of news is always a shocker. We have tried to remember the things we have been told about Willow on this journey of her's such as she has no brain (turned out to be false), that she will have global delays - both physical and mental, well she has a speech delay currently - All others she has overcome thus far. We were also told a few months back that she has a tumor in the center of her brain that is in an inoperable location and will affect her senses, motor functions and speech some day... Well, we are not sure if the tumor has anything to do with helping with what he have been seeing; but to have this new information was a big blow to Jon and I. We are moving ahead as we always do though, and taking each day as it comes - as we have this entire journey. There is a lot to be learned from Willow I can say that much, but wow some days sure are harder than others!
Here are a few links about Encephalopathy that are a bit more credible and have some good information if you would like to read more about it:
http://www.ninds.nih.gov/disorders/encephalopathy/encephalopathy.htm
http://www.medicinenet.com/encephalopathy/article.htm
Thank you all for your love, prayers and support.
A few random pictures from our summer adventures that I may not have shared:
She has Encephalopathy, a real big fancy word for something we already knew she had - only this is a bit worse. The National Institute of Health defines it as this, "Encephalopathy is a term for any diffuse disease of the brain that alters brain function or structure". Diffuse meaning brain loss, well we knew that Willow has quite a bit of white matter loss, but honestly she is 2 1/2 years old and aside from currently being behind in speech you wouldn't know anything was wrong. I guess I had it deep in my head that we wouldn't really see what this 'white matter loss' meant to her or for her until school started. I don't know why, but I felt for a bit, we were doing great.
Then the seizure took place about a week ago and that turned our world upside down. It gave us a quick reminder that no matter how much we have on our plates in our life we still have Willow that can turn it upside down real quick! LOL So we spoke with neurosurgeon's office and they called in a CT and chest series of X-rays to be done on the next day, neurology said to go ahead with the EEG and we will go from there. So we thought honestly we were heading down the road to surgery! Wow were we wrong.
To explain a bit more about Encephalopathy, is a bit hard honestly. I can say there are many factors that can lead to this condition. For Willow it has been her extensive surgeries in a short time period as well as her hydrocephalus in general. We have to remember the first initial diagnosis in her journey was she had no brain due to the size of her ventricles! NO BRAIN!! Well, we know that isn't true, but it suffered a lot of damage for being squished. :(
What will this mean for her future, well after sleeping on it for a night, I will say I am not sure. I can say this though - Alzheimer's and Dementia are two forms of Encephalopathy, and we can expect things associated with those two conditions to happen to her. Other symptoms can include: "progressive loss of memory and cognitive ability, subtle personality changes, inability to concentrate, lethargy, and progressive loss of consciousness. Other neurological symptoms may include myoclonus (involuntary twitching of a muscle or group of muscles), nystagmus (rapid, involuntary eye movement), tremor, muscle atrophy and weakness, dementia, seizures, and loss of ability to swallow or speak". (http://www.ninds.nih.gov/disorders/encephalopathy/encephalopathy.htm)
Willow has already had quite a few of those symptoms 'pop up' over the last couple of months, that we never put much thought into, but now upon reading it, can say - oh yeah.... Some things such as lethargy, the myoclonus (involuntary twitching), nystagmus, and of course the seizure. So with all that said, we can say that her brain loss is progressing in a way that is affecting her life (not hugely at this time), but is beginning to show signs. There will be a point in her life where she will reach her peak, and then begin to digress downhill. We don't know when that will happen, but that it will.
We have tried to place this all into perspective for our lives, but the first initial day of news is always a shocker. We have tried to remember the things we have been told about Willow on this journey of her's such as she has no brain (turned out to be false), that she will have global delays - both physical and mental, well she has a speech delay currently - All others she has overcome thus far. We were also told a few months back that she has a tumor in the center of her brain that is in an inoperable location and will affect her senses, motor functions and speech some day... Well, we are not sure if the tumor has anything to do with helping with what he have been seeing; but to have this new information was a big blow to Jon and I. We are moving ahead as we always do though, and taking each day as it comes - as we have this entire journey. There is a lot to be learned from Willow I can say that much, but wow some days sure are harder than others!
Here are a few links about Encephalopathy that are a bit more credible and have some good information if you would like to read more about it:
http://www.ninds.nih.gov/disorders/encephalopathy/encephalopathy.htm
http://www.medicinenet.com/encephalopathy/article.htm
Thank you all for your love, prayers and support.
A few random pictures from our summer adventures that I may not have shared:
Willow working the bake sale table at our yard sale in June
Willow and Canyon playing
Willow and Hawke saying good bye! :) I love this pic
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