Posted By CCF Neuro[P] MD, RPS on September 26, 1998 at 10:36:31:
In Reply to: RE: Focal Cortical Dysplasia posted by Angelina Thio on September 26, 1998 at 04:06:26:
In Reply to: Re: Focal cortical dysplasia posted by CCF NSG MD /gsh on September 23, 1998 at 09:43:30:
Sorry if I had re-post this message as it might had been posted the wrong place. I had a few more questions about my son, whom I had posted for an interpretation of his MRI Examination report on 23th September 1998,
"Focal Cortical dysplasia".
First of all, I would like to thank you for your prompt replies. After doing some reading and searching for his MRI report's facts, I had come to conclusion that he is suffering some some sort of cortical dysplasia. I understand that this is an abnormality in development. But since I found that he is 'different' from mormal childern in Nov 97, I quit my job ( both my husband and I are full-time employed and I admitted that I neglect my son for around three years in the hand of a relative-baby-sitter. Since his birth until almost three years old, he is isolated to a clean-empty room with only television programs to grown-up with him. Other than feeding time, he seldom get out of the room.). At that time, he just know how to claw and of course is unable to walk let alone run or climb and jump.
Since I realised his problem, I've talk/sing to him and teach him to do all the necessary things. In less than three months, he is able to walk. Now after 10 months, his improvement is tremendious.(He can speak to me, at least express his hunger, toilet need, anger, frustration, happiness/ unhappiness, jump on the spot, climb-up staircase, step-bu-step down staircase, draw a human --with eyes, nose, mouth, neck, head, hair, ears, hands, leg, body plus two dots for nipples and one for cord. His reading skill can catch-up with his six-year-old elder brother. He likes music and can follow and hymes a song the second time he heard the music. There is not much problem in counting. ( But I've just beginning to teach him, He can count to hundred but addition is quite slow). Moreover, he likes schooling and do not beat, bite and disturb classmates like he used to anymore. Lastly, even his teacher praises him for his improvement.
Is he improving? Can he be like normal if I presistently care and teach him? Losing a job for me is crucial for my family of three young children. I planned to use one year for him only and I need to go back to work-force again. You see, I need to care for the other two children. If as my doctor suggesting that he is hopeless, I will consider putting him in full-day day-care center and let him learn to take care of himself( I'm told that there is the only thing he can learn, it will be fatal to teach him skills and a waste to give him education as he will never be able to catchup in anyhing. The only thing I can do is not to let him burden the family thus he had to learn to take care of his basic nees ---hygine.And that will be final. But I do not want to be unfair to him. He had his right to be somebody in life. Not a burden to the society I hope. This is very crucial for me as the decision will influent his whole life. I hate to give up on my son. I also understand that if his family do not support him, there will be nobody else to stand by him volunterily. Maybe this is a test of patient and love. But Human can control all living organism why can't Human correct his impairness?
I understand that seizures can occur with this condition, but so far, he had none. Will he had any other symthom in the future? Is there any past record of other patients known that had other illness? Must I learn a technic or prepare any medication in case he had any symthom?
As you mentioned, there is no specific therapy for cortical dysplasias, I do not really know what is the 'relative paucity of underlying white matter was noted over the temporo-parietal regions bilaterally'? Is the "white matter" is the one called "UBO" -- The Unidentified Bright Object? Is the temporo-parietal region means at both temporal lobe and parietal lobe or at the center of the two region? What is the white matter? Is it the old cells that do not die away after the growth of new cell ( Reproduction of new cell)? If it's at the upper temporal lobe, my son had tessed for his hearing and it's supposed to be normal. Moreover, he had a very good memory which is supposed to be influenced by the lower temporal lobe. The parietal lobe which let him recognize people had no problem in him. He do had comprehension and sensational problem. Moreover he likes to 'talk nonsense' but speak and pronounce well. Can I conclude that he has no problem in Broca's area but had a damaged Wernicke's area which is at the upper part of the temporal lobe?
My child as I had gathered (I hope correct) sounds like he has a migrational abnormality. ( Which I don't know what is migrational)
He has either focal cortical dysplasia, or polymicrogyria or focal pachygyria. (What are polymicrogyria and pachygyria mean?).
I also know that my child will probably have learning difficulties in addition to his developmental delay. But is it curable? Will he be normal? Will his speed of learning and pace of improvement be parallel to any normal children? What is the cause of the problem?
I'm told also that my family might have tuberous sclerosis. ( What is this ?) Is it inherited? And must I send my other two boys for examination?
I would appreciate if you could recommend any neurogist to evaluate and confirm his diagnosis. I'm living in Hong Kong. And I do not mind to travel within Asia. If treatment can only be done in outside Asia, I would also like to find out the duration needed and cost of the surgery. And of course his chances of curing at least to what percentage.
Thank you for your answer and again I appologized if I had posted this the second time at the wrong place. I hope my letter do not sound too complicated as my English usage is not good. Sorry to take your time in reading this long letter. For all the above, I thank you.
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Dear Angelia Thio:
It sounds like you have done a wonderful job in helping your young son progress. In our pediatric neurology clinic we often see children to young adults who have abnormalities on their MRI and have language and motor abilities far better than we would think they should have, just based on the MRI. So, your efforts have shown their fruitition in your son. Yes, it sounds like he is improving dramatically to your stimulation. Is his situation hopeless, obviously from the improvements you mention that this is entirely false. It does not sound like he has plateaued yet, and if the speed at which he is gathering new skills is any indication, he likely has alot of improvement potential untapped. I don't think you should think of him as burdening your family. Sure, the caring of a handicapped child puts alot of stressors on the family. However, I have seen family after family rally around their handicapped child and have their family become closer, more caring, and develop compassionate behavior that is wonderful. However, I have also seen families go the other way and become very dysfunctional. It is, in alot of ways, how you approach and handle the problem. Concerning correcting his problem. We know very little about reversing brain dysfunction. The underlying problem is neurons that haven't migrated to their proper position in the brain. How to get them to the correct position is apart of current research but medical solutions are not on the horizon. Maybe someday down the road. But, you can see how much he has improved since you began to help him develop what skills he has attained. Good work! You will have to just take a wait-and-see perspective on whether he develops seizures. Since he has not had any thus far, I think that this is good. I wouldn't do anything unless he has seizures. What is meant by "paucity of white matter" is the following. Neurons send part of their cell to other areas of the brain, spinal cord, muscles, and other tissues. These long processes from the cell body of the
neuron are called axons. These axons are ensheathed by a fatty substance called myelin. This allows each neuron to be separate from the other neurons that surround it. As axons run through the brain to other parts of the body and brain, they a part of a group of neurons that generally go to the same part of the brain or body. These groups of neurons (axons) are called tracts. The myelin substance has a high lipid or fat content that looks white in coloration. In your son's case, there seems to be a reduced number or paucity of these tracts that run from the temporal and parietal lobes of the brain to the other areas of the brain and body. An UBO is a MRI finding that usually has little to do with tracts, these are small areas of high intensity signal on the MRI. Thus in your son's case, both these lobes have decreased white matter tracts. Not only on one side of the brain, but both sides of the brain. Unfortunately, neurons do not divide after the first few months of life. In fact, all the major
neurons are in place by the time we are born and since neurons do not divide after this time, once a neuron dies it is no longer present and there are no new neurons to take it's place. So, as you can see, during the course of everyone's life, there are fewer and fewer neurons in our brains. There are different areas of the brain that have specific functions, like you mentioned Broca's area and Wernicke's area for spoken speech and language understanding. If you son is making words and understanding your speech, it means that these areas are somewhat functional. To conclude that he has no problem in these functions would be premature. The understanding of language is probably not fully complete until well into schooling and is not known until his potential is reached and this we have no currently knowledge of, as he is still improving in this area. I wouldn't worry about this, it is far more important to have your son reach his potential than worrying about if the areas are present (which they are).
neurons develop in certain areas of the brain and then they migrate to their final position in the brain before birth. A migrational disorder means that the neurons did not reach their ultimate position in the brain. Hence, this is called a migrational disorder, as the neurons did not migrate to their final position correctly. I did not read in the MRI report that your son has polymicrogyria or pachygyria. Both of these conditions can occur with neuronal migration problems. Polymicrogyria means that there are a great number of very small plications in the cortical surface. Instead of large wide gyri, the brain is multiple small gyri. Pachygyria means that the brain has fewer gyri, and the gyri are flatter in shape. Both of these conditions are the result of varying degrees of migrational deficits. When you ask about your son's condition being curable, you have seen for yourself that through your efforts your son has vastly improved. The speed at which he has improved indicated that he has not reached his potential yet. What is potential might be is only known by the maker of your child and we do not know what this might be. All we can do is try and help him reach his potential. Tuberous sclerosis has a genetic component and it doesn't sound like your child has TS. You would know if your other children have TS and since they are normal, they do not have TS and you do not need to get them tested. I'm sorry but I do not know of any pediatric neurologist in your area. I hope that things go well with your son. I hope I answered your questions.
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