Aa
?? about my 9 yr old sons MRI and EEG results
Hello. My 9 year old son, Brent, has been going through testing for the last few months due to neuroligical issues. Heres a little history of the symptoms hes having which have for the most part just developed over the last year and a half ~ *Abnormal gait- his right foot drags and at times it even bends at the ankle and drops
* falling or tripping often, can hardly run sometimes,
*severe pain and weakness in legs, feet (sometimes to the point he can hardly walk), and hands
*complains of a "shocking feeling" in legs, feet, and hands
*bouts of confusion and memory loss and forgetting how to do some simple tasks
*major decline in handwritting, struggling with school work
*problems comprehending some things.
All this is worse at times than others like it comes and goes except for the foot dragging is always present just not as bad at times. Heres some of his medical history: He has asthma.
*At the age of 6 months he was seen by a pediatric eye specialist for a 1 to 2 mm Anisocoria with left eye being slightly larger in dark. Both responded with light with the left being slightly more sluggish also a moderate hyperopic error of aprox. +4.50 -.50x180 and +4.00 -.75 x180 but they felt since no other neurological issues were present it wasn't a major concern. Every year his farsightedness has gotten a little worse.
*No history of head trama.
*Mild speech stuttering problem
* Had lymphnode removed in kneck in 2004 and tested for cancer cells because it was enlarged for 2+yrs
After being diagnosed with an abnormal gait and upper extremeties weakness on 12/27/07 by his PCP and a foot dr. he saw a neurologist on 2/4/08.
*Had an MRI of brain w/o contrast on 2/27/08 FINDINGS:"There is an area of abnormal increased T2 signal noted in white matter adjacent to the posterior horn of the right lateral ventricle.This appears asymmetric when compared to the left side. This is nonspecific but consistent with an area of demyelination or gliosis. No other abnormal areas of signal intensity are noted in the brain."
*On 3/2/08 had a Very Long Chain Fatty Acids in the blood test RESULTS: "normal but also noted that the % of C22:6w3 (DHA) was lower than normal."
*On 3/19/08 had an EEG performed FINDINGS:"There was no evidence for epileptiform discharge but some
excessive slowing in the fronto polar derivations, slightly more prominent on the left. This physiologic asymmetry
does raise the question of structural problems in the frontal regions. Would consider neuroimaging."
He has a follow up app on 4/28/08 with the neurologist. His neurologist isn't telling us much of anything. I got actual test results by requesting a copy of them through the hospital they were done at. I have called the office over and over to get results and a week later a nurse would return my call and only tell me that "they came back abnormal he needed to come in for the next test." I haven't talked to his neurologist since our app on 2/4/08. Now, Brent has alot of low self esteem since this started especially with not being able to remember how to do, having strength to do, and coordination to do simple every day tasks. He feels hes not smart anymore. He has also just recently starting showing bouts of anger, frusteration, and withdrawl. He is scaired and constantly asking why all this is happening and whats causing it. It is so hard to see him like this and to not be able to help him understand any of this. Can someone help me to understand what these results mean. I have been told that this sounds alot like MS. Are these common signs and symptoms of MS?
Also I was wondering if anyone knew where I could find the normal ranges for the very long chain of fatty acids testing. If you have made it to reading all this THANK YOU very much and any information is appreciated.
Sincerely,
Shelly and Brent
* falling or tripping often, can hardly run sometimes,
*severe pain and weakness in legs, feet (sometimes to the point he can hardly walk), and hands
*complains of a "shocking feeling" in legs, feet, and hands
*bouts of confusion and memory loss and forgetting how to do some simple tasks
*major decline in handwritting, struggling with school work
*problems comprehending some things.
All this is worse at times than others like it comes and goes except for the foot dragging is always present just not as bad at times. Heres some of his medical history: He has asthma.
*At the age of 6 months he was seen by a pediatric eye specialist for a 1 to 2 mm Anisocoria with left eye being slightly larger in dark. Both responded with light with the left being slightly more sluggish also a moderate hyperopic error of aprox. +4.50 -.50x180 and +4.00 -.75 x180 but they felt since no other neurological issues were present it wasn't a major concern. Every year his farsightedness has gotten a little worse.
*No history of head trama.
*Mild speech stuttering problem
* Had lymphnode removed in kneck in 2004 and tested for cancer cells because it was enlarged for 2+yrs
After being diagnosed with an abnormal gait and upper extremeties weakness on 12/27/07 by his PCP and a foot dr. he saw a neurologist on 2/4/08.
*Had an MRI of brain w/o contrast on 2/27/08 FINDINGS:"There is an area of abnormal increased T2 signal noted in white matter adjacent to the posterior horn of the right lateral ventricle.This appears asymmetric when compared to the left side. This is nonspecific but consistent with an area of demyelination or gliosis. No other abnormal areas of signal intensity are noted in the brain."
*On 3/2/08 had a Very Long Chain Fatty Acids in the blood test RESULTS: "normal but also noted that the % of C22:6w3 (DHA) was lower than normal."
*On 3/19/08 had an EEG performed FINDINGS:"There was no evidence for epileptiform discharge but some
excessive slowing in the fronto polar derivations, slightly more prominent on the left. This physiologic asymmetry
does raise the question of structural problems in the frontal regions. Would consider neuroimaging."
He has a follow up app on 4/28/08 with the neurologist. His neurologist isn't telling us much of anything. I got actual test results by requesting a copy of them through the hospital they were done at. I have called the office over and over to get results and a week later a nurse would return my call and only tell me that "they came back abnormal he needed to come in for the next test." I haven't talked to his neurologist since our app on 2/4/08. Now, Brent has alot of low self esteem since this started especially with not being able to remember how to do, having strength to do, and coordination to do simple every day tasks. He feels hes not smart anymore. He has also just recently starting showing bouts of anger, frusteration, and withdrawl. He is scaired and constantly asking why all this is happening and whats causing it. It is so hard to see him like this and to not be able to help him understand any of this. Can someone help me to understand what these results mean. I have been told that this sounds alot like MS. Are these common signs and symptoms of MS?
Also I was wondering if anyone knew where I could find the normal ranges for the very long chain of fatty acids testing. If you have made it to reading all this THANK YOU very much and any information is appreciated.
Sincerely,
Shelly and Brent
I am not shure if it is all over or just his face. I didn't even think to ask about that. When this happens he gets so cranky and irritable that I just do what I can to try n get him cooled off and not bother him too much til hes calmed down. I will ask him when he gets home though.( He went to spend the night with his dad for the first time in over 2 months.) Thanks for the link will definately check it out. Hope you are having a good weekend so far.
Shelly
Shelly
I'm in tears while reading about Brent. He has almost every symptom that I have. Especially the ankle turning and foot drop. I have special made braces and they are wonderful. Go to a medical supply place and see if you can find an ankle brace for him that is made of hard plastic or at least has metal braces to keep his ankle from twisting. I wore them while waiting on the ones I had made and they did a pretty good job.
Your doctor sounds like the kind that we put on a stick and roast on Friday nights. This is your child and he is more important to you than anything in this world. You need a doctor that understands this. If this was my Zach I would be a complete basket case. You sound like a very wonderful caring mother who is going to help her son one way or the other. I could only hope and pray that I would be as brave as you are being,
When you do see the neurologist the next time, you need to do exactly what Quix said and that's to have a time line showing the doctor everything about Brent since this all started. I think personally I would also explain to him that you need answers and already having been dealing with this for over a year is not acceptable. He needs to know that if he is unable to speed up the process of tests and appointments then you will need a referral to someone who can help Brent in a more timely fashion. Personally that all sounds very nice. In the same situation I more than likely wouldn't be quite that nice while talking to the doctor. haha
Honey please hang in there and be strong. We will be here to help you in any way possible. I personally have very good shoulders for crying on. If you just need a friend, a place to go, please remember all of us. We know first hand what Brent is going through, but I cannot begin to imagine what you are going through.
I'm sure that Quix or Heather can tell you where to look for a sample of a time-line. Start working on it right away and once you get caught up to date with it you can keep it updated more easily.
I'll be praying,
Carol
Your doctor sounds like the kind that we put on a stick and roast on Friday nights. This is your child and he is more important to you than anything in this world. You need a doctor that understands this. If this was my Zach I would be a complete basket case. You sound like a very wonderful caring mother who is going to help her son one way or the other. I could only hope and pray that I would be as brave as you are being,
When you do see the neurologist the next time, you need to do exactly what Quix said and that's to have a time line showing the doctor everything about Brent since this all started. I think personally I would also explain to him that you need answers and already having been dealing with this for over a year is not acceptable. He needs to know that if he is unable to speed up the process of tests and appointments then you will need a referral to someone who can help Brent in a more timely fashion. Personally that all sounds very nice. In the same situation I more than likely wouldn't be quite that nice while talking to the doctor. haha
Honey please hang in there and be strong. We will be here to help you in any way possible. I personally have very good shoulders for crying on. If you just need a friend, a place to go, please remember all of us. We know first hand what Brent is going through, but I cannot begin to imagine what you are going through.
I'm sure that Quix or Heather can tell you where to look for a sample of a time-line. Start working on it right away and once you get caught up to date with it you can keep it updated more easily.
I'll be praying,
Carol
Is Brent hot all over, or is it mainly on his face? I sometimes get the feeling that fire is shooting out of my cheeks. I am not flushed or running a fever, but it sure feels like I am. (I had to ask my gynecologist if I was too young for hot flashes) I'm pretty sure it is some kind of nerve dysfunction, (maybe mononeuritis multiplex?)
I am not sure what to tell you if he has it all over?? Here is a link where Quix is talking about heat intolerance related to autonomic neuropathy:
http://www.medhelp.org/posts/show/3752I would make a list of all these problems/questions for the neurologist to address. I agree with Quix...I don't understand the 2 month wait to hear about an abnormal MRI report??? I just remember wanting my report that day and then having to wait over the weekend which was torture enough! Your family deserves some answers and soon!
((hugs)),
Stacey
I am not sure what to tell you if he has it all over?? Here is a link where Quix is talking about heat intolerance related to autonomic neuropathy:
http://www.medhelp.org/posts/show/3752I would make a list of all these problems/questions for the neurologist to address. I agree with Quix...I don't understand the 2 month wait to hear about an abnormal MRI report??? I just remember wanting my report that day and then having to wait over the weekend which was torture enough! Your family deserves some answers and soon!
((hugs)),
Stacey
Hello. Brent is having really bad hott spells again today. He is still not running a fever and shows no signs of a cold or anything else. He is setting in front of a fan, with a ceiling fan above him, and the air conditioner on. I am setting here freezing even though I have on sweats, my house coat, and a blanket. I was just wondering if anyone else has ever experienced something like this.
Thanks,
Shelly
Thanks,
Shelly
Thank you all so much for the warm welcome. I look forward to getting to know everyone. It helps a great deal to be reassured that I am not alone in all this. It has been extreemly difficult causing alot of heartache, breakdowns, and many sleepless nights. My heart breaks every time I watch him walk or when he has an episode of memory loss, or when he has to ask me or his 6 year old sister for help with big tears in his eyes because he's too week or hurting. My daughter has been such a big help through all this. At first she didn't understand why her big brother couldn't do some things she could do like running or tyeing his own shoes etc. I tried to explain some of it to her the best I could without worrying them and ever since she has been eager to help and even trys to help rub his legs and feet when hes in pain. Other than not knowing what is causing all this the worst part is watching how it has affected him mentally. If he struggles with something he is so quick to give up now and even says hes not smart anymore. He has always been a little shy but now hes become very withdrawn. I am in the process of trying to find him a good counselor. And his teacher has been a great deal of help through all this. Brent really likes her and shes been going the extra mile to make school easier on him right now and tries to get him to focus on his strengths.
SOONERMOM from my understanding the very long chain of fatty acids test was to rule out the perioxosomal and genetic disorders but that is just from the information I have gathered. I am very unhappy with Brents dr at this point. When I was called with the MRI results I was only told this exactly" The MRI showed up scars and lesions in the white matter of his brain and you need to bring him to Childrens hospital in the next 2 days for a blood test called very long chain of fatty acids in the blood." I tried to ask questions about size, location, amount, and was told that she didn't know that that was all the dr had told her. When I was called with the eeg results I was told " His EEG showed no seizure activity but a slight abnormality. Make sure you keep your follow up appointment on 4/28." I had to go to Childrens Hospital and request a copy of his records to get any information. They did give me a disk with his MRI on it also. I requested a copy of his records from the neurologists office and have still yet to recieve them 3 1/2 weeks later. I have been checking into changing Drs but there are only 2 neurologists within 4 hours of me that take his insurance and right now my truck is messed up so I am not able to travel a great distance to see one. The neurologist hes seeing now is a little over an hour from us at East Tennessee Childrens Hospital. He has no people skills. I am planning on changing drs as soon as I can though.
When it all first started over a yr ago it started with his feet turning in when he walked so his pediatrician had me buy him special insoles for his shoes since he doesn't have a lot of arch and said the pain was probablly just growing pains. Then the right foot started dragging so she sent him to a foot dr. who actually was the one that diagnosed him with an abnormal gait and upper extremities weakness and suggested he see a neurologist.It took over 2 mths to get an appointment with the neurologist. Then the bending at the ankle and dragging started. The only tests the neurologist has done on Brentwas the MRI i mentioned, the very long chain fatty acids test, and the EEG. Thats it. It seems like it takes a month to get a test done and the results back. If he doesn't tell me something or speed up his methods of trying to find an exact cause when we are there on the 28th then I am changing drs.
Brent has had times of improvement and his symptoms don't occur all the time some days or even weeks seem better than others. The foot dragging and the enlarged pupil are all the time and the weakness and pain occur everyday but most everything else comes and goes even the bending at the ankle of his right foot. He also has an appointment with a pediatric optimologist on 4/22. I am very grateful for your help and the information. I look forward to getting to know everyone here. I will post any other information I get when i get it. Sorry this is so long. oh yea one more thing the last few days Brent has been complaining of being really hot( to the point he has even been waking up at night hot but has no fever) and wanting the fan on which is unusual, especially since we have had a cold spell lately. Speaking of the lil raskel Brent just woke up time to go rub his legs for him.
Sincerely,
Shelly, Brent, and Bryonna
SOONERMOM from my understanding the very long chain of fatty acids test was to rule out the perioxosomal and genetic disorders but that is just from the information I have gathered. I am very unhappy with Brents dr at this point. When I was called with the MRI results I was only told this exactly" The MRI showed up scars and lesions in the white matter of his brain and you need to bring him to Childrens hospital in the next 2 days for a blood test called very long chain of fatty acids in the blood." I tried to ask questions about size, location, amount, and was told that she didn't know that that was all the dr had told her. When I was called with the eeg results I was told " His EEG showed no seizure activity but a slight abnormality. Make sure you keep your follow up appointment on 4/28." I had to go to Childrens Hospital and request a copy of his records to get any information. They did give me a disk with his MRI on it also. I requested a copy of his records from the neurologists office and have still yet to recieve them 3 1/2 weeks later. I have been checking into changing Drs but there are only 2 neurologists within 4 hours of me that take his insurance and right now my truck is messed up so I am not able to travel a great distance to see one. The neurologist hes seeing now is a little over an hour from us at East Tennessee Childrens Hospital. He has no people skills. I am planning on changing drs as soon as I can though.
When it all first started over a yr ago it started with his feet turning in when he walked so his pediatrician had me buy him special insoles for his shoes since he doesn't have a lot of arch and said the pain was probablly just growing pains. Then the right foot started dragging so she sent him to a foot dr. who actually was the one that diagnosed him with an abnormal gait and upper extremities weakness and suggested he see a neurologist.It took over 2 mths to get an appointment with the neurologist. Then the bending at the ankle and dragging started. The only tests the neurologist has done on Brentwas the MRI i mentioned, the very long chain fatty acids test, and the EEG. Thats it. It seems like it takes a month to get a test done and the results back. If he doesn't tell me something or speed up his methods of trying to find an exact cause when we are there on the 28th then I am changing drs.
Brent has had times of improvement and his symptoms don't occur all the time some days or even weeks seem better than others. The foot dragging and the enlarged pupil are all the time and the weakness and pain occur everyday but most everything else comes and goes even the bending at the ankle of his right foot. He also has an appointment with a pediatric optimologist on 4/22. I am very grateful for your help and the information. I look forward to getting to know everyone here. I will post any other information I get when i get it. Sorry this is so long. oh yea one more thing the last few days Brent has been complaining of being really hot( to the point he has even been waking up at night hot but has no fever) and wanting the fan on which is unusual, especially since we have had a cold spell lately. Speaking of the lil raskel Brent just woke up time to go rub his legs for him.
Sincerely,
Shelly, Brent, and Bryonna
Hi, my name is Quix. I am a former pediatrician, but I had to retire because of MS. I want to tell you how sorry I am that you have to go through this. We all would do it ourselves if we could keep it from our children, whatever the diagnosis is. I am no longer in practice for several years now, and I was not a neurologist.
Many things about your son's symptoms are suggestive of either MS or of an illness that is often caused by an infection called ADEM or Acute Disseminated Encephalomyelitis.
There are several things I need to ask you. The first is whether Brent has had an MRI of his cervical and thoracic (neck and chest) spinal cord. This is VERY important. I also think he should have had the MRIs with the use of contrast, as this can give a great deal of information. Also, what did the results of his spinal tap show? This is another extremely important test.
When I practiced pediatrics (which I did for 23 years) I was very quick to refer my patients to the best doctor or academic center available to us. Sometimes this meant sending them to another state. I am assuming that Brent is seeing a child neurologist and that is good, but it seems to me (and of course I don't have all of your data) that there should be more information by now. You said that Brent has been having trouble for over a year now.
Yes, I can see why you have come to an MS forum looking for help. Brent's symptoms and problems do suggest MS or ADEM - they are very similar, except that ADEM usually just happens once and MS has repeated attacks or, less often, continuous progression.
Has Brent ever had any periods of improvement, where some of the symptoms improved or even went away?
I would like to hear your answers to these questions, but in all honesty, no one can make a diagnosis online. If he were my patient, I would be trying to get him into the best pediatric neurologic center I could. Because, he does have so much going on that suggests possible MS, I would see if you could get a second opinion at a nationally recognized Pediatric Multiple Sclerosis Center of Excellence. There are 6 or 7 of them in the US.
Here is a website listing all of them. They each also have their own websites. Even if Brent does not have MS, these very special doctors can help determine what the problem is. You could ask your neurologist to contact one of these centers or you could initiate the contact yourself. No doctor should be offended by a parent's desire for as much information and as many opinions as possible. This site also has a lot of information on Pediatric MS.
Each center also gives contact information to whom you could send the information you have sent us.
http://www.nationalmssociety.org/about-multiple-sclerosis/who-gets-ms/pediatric-ms/pediatric-ms-centers-of-excellence/index.aspx
Only a tiny percentage of people with MS are under the age of 10, but it does happen and has been diagnosed as young as 18 months of age. The disease acts much like it does in adults.
Two things about the lab tests that you provided. The EEG is similar to that seen in people with MS. The diffuse slowing is often seen because of the slowing of nerve signals in demyelinating conditions.
The slight abnormality in the long-chain fatty acids is beyond my knowledge, but I suspect it doesn't mean anything.
I hope to hear back from you about Brent's MRI of his spine and what the spinal tap showed. I am concerned that you are having to wait 2 months to see the neurologist to follow up his MRI, especially knowing that it is abnormal. I would find this completely unacceptable in my practice.
One of the things that we could help you with, maybe, is getting together all of Brent's information, especially copies of his MRI (and the one's he has had done before). If you haven't done it I would recommend a Timeline of when each of the symptoms appeared and whether it ever improved and came back and when.
Brent should not have to wait like this, unless, ALL of the testing has been done and second opinions are already in, but there are just no answers. I hope to hear from you soon and we'll talk more.
His anger and frustration are normal, but you all need answers.
Please go to the website (you can copy and paste it into the "address" window of your browser,) and read all you can.
We will all be thinking about you,
Quix, MD
Many things about your son's symptoms are suggestive of either MS or of an illness that is often caused by an infection called ADEM or Acute Disseminated Encephalomyelitis.
There are several things I need to ask you. The first is whether Brent has had an MRI of his cervical and thoracic (neck and chest) spinal cord. This is VERY important. I also think he should have had the MRIs with the use of contrast, as this can give a great deal of information. Also, what did the results of his spinal tap show? This is another extremely important test.
When I practiced pediatrics (which I did for 23 years) I was very quick to refer my patients to the best doctor or academic center available to us. Sometimes this meant sending them to another state. I am assuming that Brent is seeing a child neurologist and that is good, but it seems to me (and of course I don't have all of your data) that there should be more information by now. You said that Brent has been having trouble for over a year now.
Yes, I can see why you have come to an MS forum looking for help. Brent's symptoms and problems do suggest MS or ADEM - they are very similar, except that ADEM usually just happens once and MS has repeated attacks or, less often, continuous progression.
Has Brent ever had any periods of improvement, where some of the symptoms improved or even went away?
I would like to hear your answers to these questions, but in all honesty, no one can make a diagnosis online. If he were my patient, I would be trying to get him into the best pediatric neurologic center I could. Because, he does have so much going on that suggests possible MS, I would see if you could get a second opinion at a nationally recognized Pediatric Multiple Sclerosis Center of Excellence. There are 6 or 7 of them in the US.
Here is a website listing all of them. They each also have their own websites. Even if Brent does not have MS, these very special doctors can help determine what the problem is. You could ask your neurologist to contact one of these centers or you could initiate the contact yourself. No doctor should be offended by a parent's desire for as much information and as many opinions as possible. This site also has a lot of information on Pediatric MS.
Each center also gives contact information to whom you could send the information you have sent us.
http://www.nationalmssociety.org/about-multiple-sclerosis/who-gets-ms/pediatric-ms/pediatric-ms-centers-of-excellence/index.aspx
Only a tiny percentage of people with MS are under the age of 10, but it does happen and has been diagnosed as young as 18 months of age. The disease acts much like it does in adults.
Two things about the lab tests that you provided. The EEG is similar to that seen in people with MS. The diffuse slowing is often seen because of the slowing of nerve signals in demyelinating conditions.
The slight abnormality in the long-chain fatty acids is beyond my knowledge, but I suspect it doesn't mean anything.
I hope to hear back from you about Brent's MRI of his spine and what the spinal tap showed. I am concerned that you are having to wait 2 months to see the neurologist to follow up his MRI, especially knowing that it is abnormal. I would find this completely unacceptable in my practice.
One of the things that we could help you with, maybe, is getting together all of Brent's information, especially copies of his MRI (and the one's he has had done before). If you haven't done it I would recommend a Timeline of when each of the symptoms appeared and whether it ever improved and came back and when.
Brent should not have to wait like this, unless, ALL of the testing has been done and second opinions are already in, but there are just no answers. I hope to hear from you soon and we'll talk more.
His anger and frustration are normal, but you all need answers.
Please go to the website (you can copy and paste it into the "address" window of your browser,) and read all you can.
We will all be thinking about you,
Quix, MD
Hi,
Just want to say I am thinking of you and your son! I am a mom too and I am sure your scared silly. I would think if it was very urgent they would have him in to see the neuro very fast! Sorry not an expert, on this subject tests etc...
The only advise I do feel I can give is a counsler for your son and maybe you also to help with his frustration (I am going to school for this) and many may not feel they do much good but it is very normal to get frustrated and hard to deal with as an adult if you can find one that is a child specialist in cognitive behavior that would be my favorite and they speak english not Freud and deal with the NOW.
I know like you want another doctor to see but I would like to see your spirts raised both of yours!!! Also nice to have someone close to you and family for emotional support or to vent to. OF course this forum is great at that!
I hope he gets to feeling better soon and he is still very bright just because his legs are giving him a hard time and is forgetful well that may be just temporary plus my child is forgetful and so are my older kids they are not sick. oh I sure can understand why he is feeling frustrated. Maybe he needs to get a punching bag to work out his frustration? UM just thinking and typing I don't know what to say just want to be helpful!
Many many hugs sent your way,
Mary
Just want to say I am thinking of you and your son! I am a mom too and I am sure your scared silly. I would think if it was very urgent they would have him in to see the neuro very fast! Sorry not an expert, on this subject tests etc...
The only advise I do feel I can give is a counsler for your son and maybe you also to help with his frustration (I am going to school for this) and many may not feel they do much good but it is very normal to get frustrated and hard to deal with as an adult if you can find one that is a child specialist in cognitive behavior that would be my favorite and they speak english not Freud and deal with the NOW.
I know like you want another doctor to see but I would like to see your spirts raised both of yours!!! Also nice to have someone close to you and family for emotional support or to vent to. OF course this forum is great at that!
I hope he gets to feeling better soon and he is still very bright just because his legs are giving him a hard time and is forgetful well that may be just temporary plus my child is forgetful and so are my older kids they are not sick. oh I sure can understand why he is feeling frustrated. Maybe he needs to get a punching bag to work out his frustration? UM just thinking and typing I don't know what to say just want to be helpful!
Many many hugs sent your way,
Mary
I am so sorry about everything that is happening to your son. My son just turned 11 and so my heart just really goes out to you!
Have you had any doctors discuss a group of inherited disorders called leukodystrophies with you? Did you ever see the movie "Lorenzo's Oil"?-(it was about adrenoleukodystrophy) When I saw that they had tested his blood for very long chain fatty acids it made me think of this. Read these links and see what you think:
http://www.ninds.nih.gov/disorders/leukodystrophy/leukodystrophy.htm
http://www.ulf.org/whatis.html
I wish you both the best!! Hang in there! Our prayers go out to you,
Stacey
Have you had any doctors discuss a group of inherited disorders called leukodystrophies with you? Did you ever see the movie "Lorenzo's Oil"?-(it was about adrenoleukodystrophy) When I saw that they had tested his blood for very long chain fatty acids it made me think of this. Read these links and see what you think:
http://www.ninds.nih.gov/disorders/leukodystrophy/leukodystrophy.htm
http://www.ulf.org/whatis.html
I wish you both the best!! Hang in there! Our prayers go out to you,
Stacey
Oh gosh I cried when I read your post. I'm so sorry your son is going through all this. I wish I could help you out here but I am in limbo land myself and just have no idea what to tell you. I do know that Quix will do her best to help you out.
Please know that we are here to support you and I pray that you get answers and help for Brent soon.
Hugs
Moki
Please know that we are here to support you and I pray that you get answers and help for Brent soon.
Hugs
Moki
I just wanted to add a Welcome to the forum, and say that I too am so sorry for all that your son's going through. It must be incredibly difficult to watch not only his physical issues develop, but also watch the psychological aftermath of all these neurological problems.
I certainly hope Quix or someone can give you some ideas. As a mom myself, I can imagine how terrifying it would be to see all this happen, and not have answers. I'm sorry Brent's neurologist isn't keeping you in the loop.
Welcome, these are amazing people, you found the right place to ask your questions, even if no one has any ideas. Everyone here will welcome you with open arms.
Christine
(un-dx)
I certainly hope Quix or someone can give you some ideas. As a mom myself, I can imagine how terrifying it would be to see all this happen, and not have answers. I'm sorry Brent's neurologist isn't keeping you in the loop.
Welcome, these are amazing people, you found the right place to ask your questions, even if no one has any ideas. Everyone here will welcome you with open arms.
Christine
(un-dx)
I wish that I could give you some answers. I am so glad that you posted your story about your precious son.
We have a Community Leader named Quixotic1 that comes on in the evenings, that is a retired pediatrician with MS. Hopefully she will get a chance to look all of this information over and give you some insight. I am sure that she would be glad to help if she knows the answers. She is the type of person, that researchs the Internet looking up answers, if she does not have them. If she has an opinion about your son's testing, I am sure that she will respond.
I will send her a quick email and alert her to this post.
Again, welcome. Hang in there.
Heather
We have a Community Leader named Quixotic1 that comes on in the evenings, that is a retired pediatrician with MS. Hopefully she will get a chance to look all of this information over and give you some insight. I am sure that she would be glad to help if she knows the answers. She is the type of person, that researchs the Internet looking up answers, if she does not have them. If she has an opinion about your son's testing, I am sure that she will respond.
I will send her a quick email and alert her to this post.
Again, welcome. Hang in there.
Heather
I am so sorry your son is having all of these problems. I would like to welcome you to our Cyber Family. It breaks my heart hearing about Brent. There are many here who can tell you about the abnormal MRI, I am not knowledgeable in that area. I do apologize. Take a look at our health pages, they are a wealth of information.
I have a niece and nephew who have MS and they were young like Brent when they were dx'd. I was told many years ago that it was unusual for a person to be dx'd under age 20. But it does happen.
Again Welcome to the best forum ever!
Many Hugs to You and Brent,
Ada
I have a niece and nephew who have MS and they were young like Brent when they were dx'd. I was told many years ago that it was unusual for a person to be dx'd under age 20. But it does happen.
Again Welcome to the best forum ever!
Many Hugs to You and Brent,
Ada
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