Aa
13 yr. old in pain for months need your wisdom
Hello I am new at this forum. I really need advice that I think this forum family could help me with. This maybe long but I really need to give you alot of details, so that you're up to date and possibly able to help me find the right way to help my son.
my son has always complained of leg pain. We have went to Dr.'s from Oklahoma to texas. Everyone has different ideas.
He was deaf for 2 years. Diagnosed at age 6.
He had hearing aids for two years. Now hearing is fine.
He had 3 roundtrips of sinus surgeries.
After sinus surgery he developed Entro bactor hymophillus clocae influenza and had a pickline for 6 weeks.
Eye sight went down to 20/50 for 2 years at age 9. Then eye sight went o.k. now 20/15.
Asthma for 7 years now asthma seems to be good for 1 yr. and counting.
Sep. 07 left leg developed clonus within 2 weeks severe. Oct. clonus in both legs. Different drugs, nothing works.
For about 2 yrs. he has been on monthly basis having symptoms of vomiting and flu like.
Nov. 07 Diagnosed with CP. Missed many days of school because he could not walk the halls.
Jan.08 Homebound 13 neurologists, 3 hospitals, tons of GP's and nothing. He kept falling and in MARCH 08 fell and hit head. Next day went to Chiropractor and was told call Neuro. They did not see him until Wed. By this time he was passing out looks like sleep for 1-2 min. Then Disoriented and slurred speech for 20-30 min. at that time. Dr. Seen all of this and sent home until the next day after trying a porphyria test. Thurs. Ended up in Hospital And was there 25 days in APRIL08. In May we had a eye field test 1 of 3 we did. Left eye as of yesterday 6-17-08 was 2x worse in 3wks. since last test. Vision is 20/15 but peripheal is fastly declining. The Eye Dr. told my Neuro That if 1 eye is MS and 2 eyes affected is the Brain.
He has been tested for everything even stickman disease as well as Lyme's. The 6 MRI"S showed nothing accept a syrnx on the Thorasic Part of his spine but after 2 Spinal taps went away. We go Thurs. for 4 more MRI's w/wo contrast. Had High Spinal Pressure, Diagnosed with dedgenrative cognitive disorder of unknown etiology. He complains of chest pains, and his upper ribs being squeezed. Has good and bad days. On bad days he is like a body with no one there. Insomnia bad. Tingle and numbness inleft side more.
Tells me alot he thinks he has the flu and will try to sleep it off. Wakes up and his legs are hurting by the time he puts them off the bed. He has a horse voice sometimes and weak in the afternoon and evening.
My son always has had a smile all through this until this last week. One time our Doctor told him maybe he was depressed or it was in his head. He told her I wake up everyday with a smile on my face. We were coming home and he said " Just because she can't do her job and figure out my problem she wants to blame my head." I thought that was vey well put and let him know they are trying. Not to give up.
They did have psych evaluate and everything is fine on good days. Except his short term memory is gone. There seems to be no depression just pain. They gave him Dimox on Sat.for a pseudo Tumor and brain swelling but the eye Dr. does not think at all this A PSEUDO Tumor. He has gained 50 pds. since Nov.07.
I have tried so long to help him and we were going to look at wheelchairs this week to start school. Now I do not know how else to help him get help faster. We are seeing a ms neuro next week. Can anyone tell me how to make things go faster to get them to treat him with the proper meds before his left eye is gone.
He has been on prednisone on/off all his life. Is this what he needs now?
I AM SORRY this is SO LONG but I wanted togive as much info as I could to let the forum try to understand and help.
Also they told me when my 13 yr. old was in the hospital my 11 yr. old had an MRI and has a 4in lesion on the frontal lobe of his brain. He has epilepsy so that was the reason for his MRI. They are testing him soon for Ms with another MRI but he has no symptoms otherwise. To read this forum gave me hope. With the thoughts and stories of all of your pain has let me know WE ARE NOT ALONE.
Again I am sorry this is so long but I would value and appreciate any ideas.
Thank you for your time.
GOD BLESS!
my son has always complained of leg pain. We have went to Dr.'s from Oklahoma to texas. Everyone has different ideas.
He was deaf for 2 years. Diagnosed at age 6.
He had hearing aids for two years. Now hearing is fine.
He had 3 roundtrips of sinus surgeries.
After sinus surgery he developed Entro bactor hymophillus clocae influenza and had a pickline for 6 weeks.
Eye sight went down to 20/50 for 2 years at age 9. Then eye sight went o.k. now 20/15.
Asthma for 7 years now asthma seems to be good for 1 yr. and counting.
Sep. 07 left leg developed clonus within 2 weeks severe. Oct. clonus in both legs. Different drugs, nothing works.
For about 2 yrs. he has been on monthly basis having symptoms of vomiting and flu like.
Nov. 07 Diagnosed with CP. Missed many days of school because he could not walk the halls.
Jan.08 Homebound 13 neurologists, 3 hospitals, tons of GP's and nothing. He kept falling and in MARCH 08 fell and hit head. Next day went to Chiropractor and was told call Neuro. They did not see him until Wed. By this time he was passing out looks like sleep for 1-2 min. Then Disoriented and slurred speech for 20-30 min. at that time. Dr. Seen all of this and sent home until the next day after trying a porphyria test. Thurs. Ended up in Hospital And was there 25 days in APRIL08. In May we had a eye field test 1 of 3 we did. Left eye as of yesterday 6-17-08 was 2x worse in 3wks. since last test. Vision is 20/15 but peripheal is fastly declining. The Eye Dr. told my Neuro That if 1 eye is MS and 2 eyes affected is the Brain.
He has been tested for everything even stickman disease as well as Lyme's. The 6 MRI"S showed nothing accept a syrnx on the Thorasic Part of his spine but after 2 Spinal taps went away. We go Thurs. for 4 more MRI's w/wo contrast. Had High Spinal Pressure, Diagnosed with dedgenrative cognitive disorder of unknown etiology. He complains of chest pains, and his upper ribs being squeezed. Has good and bad days. On bad days he is like a body with no one there. Insomnia bad. Tingle and numbness inleft side more.
Tells me alot he thinks he has the flu and will try to sleep it off. Wakes up and his legs are hurting by the time he puts them off the bed. He has a horse voice sometimes and weak in the afternoon and evening.
My son always has had a smile all through this until this last week. One time our Doctor told him maybe he was depressed or it was in his head. He told her I wake up everyday with a smile on my face. We were coming home and he said " Just because she can't do her job and figure out my problem she wants to blame my head." I thought that was vey well put and let him know they are trying. Not to give up.
They did have psych evaluate and everything is fine on good days. Except his short term memory is gone. There seems to be no depression just pain. They gave him Dimox on Sat.for a pseudo Tumor and brain swelling but the eye Dr. does not think at all this A PSEUDO Tumor. He has gained 50 pds. since Nov.07.
I have tried so long to help him and we were going to look at wheelchairs this week to start school. Now I do not know how else to help him get help faster. We are seeing a ms neuro next week. Can anyone tell me how to make things go faster to get them to treat him with the proper meds before his left eye is gone.
He has been on prednisone on/off all his life. Is this what he needs now?
I AM SORRY this is SO LONG but I wanted togive as much info as I could to let the forum try to understand and help.
Also they told me when my 13 yr. old was in the hospital my 11 yr. old had an MRI and has a 4in lesion on the frontal lobe of his brain. He has epilepsy so that was the reason for his MRI. They are testing him soon for Ms with another MRI but he has no symptoms otherwise. To read this forum gave me hope. With the thoughts and stories of all of your pain has let me know WE ARE NOT ALONE.
Again I am sorry this is so long but I would value and appreciate any ideas.
Thank you for your time.
GOD BLESS!
Thank you and my message was to you also. I was just tryimg to think in a hurry.
Thank you for your messages and prayers. my prayers are with you also. Catch you later and let you know what happens. Just hope it is good for a change.
God Bless
MDHATTON
Thank you for your messages and prayers. my prayers are with you also. Catch you later and let you know what happens. Just hope it is good for a change.
God Bless
MDHATTON
I glad you were able to turn today around and get in early to the MS specialist. I hope that they will give him the VEP which can help with a diagnosis.
Take care and you and your family are still in my prayers.
God Bless, Pat :)
Take care and you and your family are still in my prayers.
God Bless, Pat :)
Just a quick note to the nice people at the forum that have been helping me with messages, thoughts and prayers.
I was taking my 13 yr. old for another MRI at 830a.m. this morning. They canceled it after 5 yesterday because they no longer accept our insurance. Well after a very sleepless night I called at 730am this morning and managed to get him into the ms specialist that I made for next week to gave this MRI. They took him for 11am this morning I talked to my pedi Neuro and she said that was good because she talked to his Opto yesterday and said he had progressive Neuritis that needs to be addressed ASAP.
So I guess everything happens for a reason. Sometimes you just cannot see it until you calm down and think of alternatives. I was determine this day was not going to be wasted. I will post hopefully with some news later. Everyone just cross your fingers and say a prayer we can atleast have a VEP and start something to save his eye sight.
GOD BLESS and THANK YOU>
This forum has saved me the past few days.
Even when I was not posting but just reading. I was just scared and confused on what to do but you guys gave me answers, hope and support for that I am very greatful.
MDHATTON
I was taking my 13 yr. old for another MRI at 830a.m. this morning. They canceled it after 5 yesterday because they no longer accept our insurance. Well after a very sleepless night I called at 730am this morning and managed to get him into the ms specialist that I made for next week to gave this MRI. They took him for 11am this morning I talked to my pedi Neuro and she said that was good because she talked to his Opto yesterday and said he had progressive Neuritis that needs to be addressed ASAP.
So I guess everything happens for a reason. Sometimes you just cannot see it until you calm down and think of alternatives. I was determine this day was not going to be wasted. I will post hopefully with some news later. Everyone just cross your fingers and say a prayer we can atleast have a VEP and start something to save his eye sight.
GOD BLESS and THANK YOU>
This forum has saved me the past few days.
Even when I was not posting but just reading. I was just scared and confused on what to do but you guys gave me answers, hope and support for that I am very greatful.
MDHATTON
Hi, again. I've been reading your answers hoping to get enough information to get a idea of what to say to you.
This is all very confusing to me. But, we are talking about your 13 year old who has a history of temporary hearing loss about 7 years ago. Then some other stuff like asthma (wihich is not neurological), ongoing weird things with his vision, suspicion of a pseudotumor (increased pressure inside the head, but without a tumor) but the neuro-ophthalmologist disagrees. He has tingling and numbness on the left side, has had many falls, cycles of nausea and vomiting, lots of leg pain for years, history of a syrinx which resolved with removing spinal fluid,
and has episodes of seeming to fall a sleep suddenly even during activities, but has had EEG and seizures have been ruled out.
Now he is swollen all over and is on Diamox which is normally used for Pseudotumor, but is being used to take the fluid off of him.
My first concerns are with the indicators of Pseudotumor. I would want to know that this has been carefully ruled out. It can cause episodes of vomiting, seizures, cognitive dysfunction, other neurologic things like the tingling. It can cause the falling. And it often causes vision loss. I believe that it also can cause the syrinx, from the high pressure. It seems to answer almost all of the unusual things your son is going through. However, I don't know if you can have Pseudotumor and have a normal eye (fundoscopic) exam. Also, it would be rare in a boy at this age.
I would also want to know that your son does not have something called Chiari Malformation, though I don't see how they would miss that with all of the MRIs.
Since the episodes he has of passing out sound so much like seizures, I would hope the Pediatric Neuro would do a 24 hour or even 5 day EEG to rule this out. I also thought of narcolepsy.
If he has pseudotumor, and it sounds like he doesn't (from the Neuro-Ophthalmologist), he would need a full workup for autoimmune diseases, like Lupus. He should also be tested for Lyme disease. Pseudotumor is also seen sometimes with a clotting disorder called Hughes Syndrome. Pseudotumor is also sometimes seen with different endocrine problems. If the neurologist and the neuro-optho can't agree on Pseudotumor, then ask for a second opinion form another neuro-ophthalmologist.
I am very worried about the fluid retention and the bloating up. This has nothing to do with MS unless it is just due to the steroids. Has he been on steroids recently? If he hasn't been on steroids then he needs his kidneys checked out and also his endocrine status looked at.
Now, all of the stuff above is just me playing around with the information you have given us. If he has a good Pediatric Neurologist who is interested in finding the problem, then you are in good hands.
If they are really considering MS (if he were my son) I would want him seen at one of the Pediatric MS Centers of Excellence. There are six of these. If you are in OK or TX then the closest to you is in Birmingham, AL. These are Pediatric Neurologists who have sub-specialized in pediatric MS. Here is a link that discusses all of them.
http://www.nationalmssociety.org/about-multiple-sclerosis/who-gets-ms/pediatric-ms/pediatric-ms-centers-of-excellence/index.aspx
Perhaps your pedi neuro could discuss his case with them.
Finally, do NOT place any great weight on my ideas, PLEASE! I haven't practiced Pediatrics for more than 7 years, I was not knowledgeable about neurology when I was in practice. Beyond what I have told you here, I am not capable of helping to diagnose your son. But, I hope you stay here for support and to let us know what is going on.
Best of luck,
Quix
This is all very confusing to me. But, we are talking about your 13 year old who has a history of temporary hearing loss about 7 years ago. Then some other stuff like asthma (wihich is not neurological), ongoing weird things with his vision, suspicion of a pseudotumor (increased pressure inside the head, but without a tumor) but the neuro-ophthalmologist disagrees. He has tingling and numbness on the left side, has had many falls, cycles of nausea and vomiting, lots of leg pain for years, history of a syrinx which resolved with removing spinal fluid,
and has episodes of seeming to fall a sleep suddenly even during activities, but has had EEG and seizures have been ruled out.
Now he is swollen all over and is on Diamox which is normally used for Pseudotumor, but is being used to take the fluid off of him.
My first concerns are with the indicators of Pseudotumor. I would want to know that this has been carefully ruled out. It can cause episodes of vomiting, seizures, cognitive dysfunction, other neurologic things like the tingling. It can cause the falling. And it often causes vision loss. I believe that it also can cause the syrinx, from the high pressure. It seems to answer almost all of the unusual things your son is going through. However, I don't know if you can have Pseudotumor and have a normal eye (fundoscopic) exam. Also, it would be rare in a boy at this age.
I would also want to know that your son does not have something called Chiari Malformation, though I don't see how they would miss that with all of the MRIs.
Since the episodes he has of passing out sound so much like seizures, I would hope the Pediatric Neuro would do a 24 hour or even 5 day EEG to rule this out. I also thought of narcolepsy.
If he has pseudotumor, and it sounds like he doesn't (from the Neuro-Ophthalmologist), he would need a full workup for autoimmune diseases, like Lupus. He should also be tested for Lyme disease. Pseudotumor is also seen sometimes with a clotting disorder called Hughes Syndrome. Pseudotumor is also sometimes seen with different endocrine problems. If the neurologist and the neuro-optho can't agree on Pseudotumor, then ask for a second opinion form another neuro-ophthalmologist.
I am very worried about the fluid retention and the bloating up. This has nothing to do with MS unless it is just due to the steroids. Has he been on steroids recently? If he hasn't been on steroids then he needs his kidneys checked out and also his endocrine status looked at.
Now, all of the stuff above is just me playing around with the information you have given us. If he has a good Pediatric Neurologist who is interested in finding the problem, then you are in good hands.
If they are really considering MS (if he were my son) I would want him seen at one of the Pediatric MS Centers of Excellence. There are six of these. If you are in OK or TX then the closest to you is in Birmingham, AL. These are Pediatric Neurologists who have sub-specialized in pediatric MS. Here is a link that discusses all of them.
http://www.nationalmssociety.org/about-multiple-sclerosis/who-gets-ms/pediatric-ms/pediatric-ms-centers-of-excellence/index.aspx
Perhaps your pedi neuro could discuss his case with them.
Finally, do NOT place any great weight on my ideas, PLEASE! I haven't practiced Pediatrics for more than 7 years, I was not knowledgeable about neurology when I was in practice. Beyond what I have told you here, I am not capable of helping to diagnose your son. But, I hope you stay here for support and to let us know what is going on.
Best of luck,
Quix
Im not good with words,have read your post and my prayers go out to you and your two sons,hope you get some answers soon.
theresa
theresa
In Nov. 07 they said he had CP. Because they just did not know After our hospital stay 25 days in april 08 They did a Vision field test. It came out right eye normal. Left eye abnormal. Went to a joke of a Neuro Opto. You know the one with the GOD syndrome. He did not even speak to my son. Talked in a recorder for 2 min. Looked in his eyes for 2 min. and left. we were there 4 hours. Had a field test there with his staff. It was two weeks after the other one. Was a little worse in left eye. That was three weeks ago. Tues. this week had a third field test and it was double the damage in three weeks. Now Thurs. we are having 4 more mri's then trying to get a VEP next week and are seeing the MS Neuro next week. His Neuro called to night and said to get off of the Diamox. I told her that his body was so bloated that it looked like if you squeezed his legs water would come out. So she left him on the Diamox for now. He lost 5 pds. since Sat. when we started the medicine. Hopefully they will get the right meds soon to help his eyes.
Out of all the Doctors this one seems to care but is lost. Now that she has a direction she is running with it. Seems to be anyway. she told me to bring him up at noon tomorrow and she would squeeze him in to make sure we do not need to do other things for the fluid retention. When I talked to her and told her the opto seen him and commenetd on how much bigger he was in three weeks she wanted to see him. His legs are so big (better some ) but were so bad they had red stretch marks on his calves. His arm and hand looked like one. She is concerned about retaining that much fluid so fast. In April in the hospital he was I think about 140pds. This last week we weighed in at152. He is 5'3. That is spooky. They said last Tues. He had a heart murmur. I did not think about it but my Aunt said that fluid would cause that and possible congestive heart failure because the fluid had to go somewhere. I did not think about it like that. This part is new to me. Would MS cause that?
They told me yesterday that there is three stages of diagnosis and he is at probable MS.
Better than we were. Believe it or not this forum has helped me alot in one day just having people that know what is going on and not as in the dark as I am. I am learning though.
Sep. 07 they thought MS and somehow it got thrown out. Now new neuro since Jan. 08. has thought it was ruled out. Now since the eye Dr.'s told her she is back on the ball. In all seriousness if it was not for her we would be nowhere right now. She was slow but pretty thorough. I have learned from this forum that appearantly it is a SLOW process anyway. After the VEP hopefully we can start meds. Who knows just a wait and see.
I am doing a lot better just having one set answer instead of 50.
What do they do on the VEP?
Thanks for writing me And if you want go to pm.
You all have been very helpful today.
Thanks
Prayers for all
Out of all the Doctors this one seems to care but is lost. Now that she has a direction she is running with it. Seems to be anyway. she told me to bring him up at noon tomorrow and she would squeeze him in to make sure we do not need to do other things for the fluid retention. When I talked to her and told her the opto seen him and commenetd on how much bigger he was in three weeks she wanted to see him. His legs are so big (better some ) but were so bad they had red stretch marks on his calves. His arm and hand looked like one. She is concerned about retaining that much fluid so fast. In April in the hospital he was I think about 140pds. This last week we weighed in at152. He is 5'3. That is spooky. They said last Tues. He had a heart murmur. I did not think about it but my Aunt said that fluid would cause that and possible congestive heart failure because the fluid had to go somewhere. I did not think about it like that. This part is new to me. Would MS cause that?
They told me yesterday that there is three stages of diagnosis and he is at probable MS.
Better than we were. Believe it or not this forum has helped me alot in one day just having people that know what is going on and not as in the dark as I am. I am learning though.
Sep. 07 they thought MS and somehow it got thrown out. Now new neuro since Jan. 08. has thought it was ruled out. Now since the eye Dr.'s told her she is back on the ball. In all seriousness if it was not for her we would be nowhere right now. She was slow but pretty thorough. I have learned from this forum that appearantly it is a SLOW process anyway. After the VEP hopefully we can start meds. Who knows just a wait and see.
I am doing a lot better just having one set answer instead of 50.
What do they do on the VEP?
Thanks for writing me And if you want go to pm.
You all have been very helpful today.
Thanks
Prayers for all
You're welcome!
I figured that any good neuro would have ruled this out already because of the sudden sleep episodes. But I thought of it when you mentioned that part in your son's symptoms because of my cousin having this.I am glad that this has been ruled out for your son. It must be so frustrating for you! As Mothers we want to fix our childrens pain and problems, it is in a mothers nature to do this. Not knowing what is wrong must be so hard for you to deal with! I am sorry that your son is going through this, no one deserves to be sick, but it is especially hard when it is your child!
You had mentioned 13 Neurologist that had seen him, do none of them have a clue what is going on? Are they thinking MS or are there other possibilities that they are ruling out? Did any of the visual field test show any defects? Did he have a VEP done, and if so what were the results? Most of this I know nothing about, but I have studied a lot of vision conditions and a fair amount of neurological conditions, but I am still learning myself. All I can offer for now is my friendship and support!
I hope someone on here can help you figure out what to do or that the doctors could figure it out! I feel so heavy in my heart for your son and all of your family!
You all are in my thoughts and prayers!
~Santana~
I figured that any good neuro would have ruled this out already because of the sudden sleep episodes. But I thought of it when you mentioned that part in your son's symptoms because of my cousin having this.I am glad that this has been ruled out for your son. It must be so frustrating for you! As Mothers we want to fix our childrens pain and problems, it is in a mothers nature to do this. Not knowing what is wrong must be so hard for you to deal with! I am sorry that your son is going through this, no one deserves to be sick, but it is especially hard when it is your child!
You had mentioned 13 Neurologist that had seen him, do none of them have a clue what is going on? Are they thinking MS or are there other possibilities that they are ruling out? Did any of the visual field test show any defects? Did he have a VEP done, and if so what were the results? Most of this I know nothing about, but I have studied a lot of vision conditions and a fair amount of neurological conditions, but I am still learning myself. All I can offer for now is my friendship and support!
I hope someone on here can help you figure out what to do or that the doctors could figure it out! I feel so heavy in my heart for your son and all of your family!
You all are in my thoughts and prayers!
~Santana~
Thanks for the idea. They did a sleep study at a different time as the 2 EEGs. I had thought of that. Thank GOD that was ruled out. Thanks for telling me and for caring enough for taking time to look things up for me. I appreciate it. That is a good thought but ruled out. I was actually grateful that was ruled out.
Also after his spinal taps he has not done it so far anymore. He has started swelling up very bad but hopefully the Diamox will help take off the pressure and swelling before it gets bad again. Of course just because they said that it was ruled out. It would not be the first time it was not true.
Thanks and GOD BLESS.
Also after his spinal taps he has not done it so far anymore. He has started swelling up very bad but hopefully the Diamox will help take off the pressure and swelling before it gets bad again. Of course just because they said that it was ruled out. It would not be the first time it was not true.
Thanks and GOD BLESS.
Sorry I forgot something, it also stated that it commonly manifest in the adolecense age and that a DX is usually delayed by about 15 years. This was true for my cousins case.
~Santana~
~Santana~
Hi again,
Something in your son's story sounded familar to me today and then I remembered my first cousin who is in his 40's told me that they found out the reason that he keeps just falling asleep out of nowhere and it can happen at any time, standing up, sitting up, in the middle of an activity or while walking. He had had this problem since his teenage years and didn't know why!
Some people thought he was lazy or slow in his thinking, he had some hyperactivity but nothing outrageous! I remember he also started having problems with his vision in childhood and his eyes would not focus or be still when he looked at you. They would focus above you or to the side. He was very smart, but you could tell that something neurological was wrong with him!
Interestingly he had two other brothers out of the five boys that had that had this same appearance neurologically, but one of them had very bad eyesight that progressively got worse as he got older. He did not go blind or anything but has to have a very strong prescription in his glasses. The other brother didn't have any vision issues at all and neither of these two had the falling asleep problem like this one did.
There father has epilepsy, a pretty severe form of it. Anyway my cousin Phillip, was finally dx a couple years ago with something called Narcolepsy! This was the reason for the falling asleep at any time no matter what he was doing. Because of this he can no longer drive.
I Just looked this up and found some similar things that you mentioned about your 13 year old. For example the passing out sort of like falling asleep for a few min and then waking up disoriented and with slurred speech. Also the insomnia. It also mentions loss of muskle control in parts of the body!
It also states that there may be an inheritable factor and that it is not uncommon for a sibling or other member of the family to have a neurological disorder as well.
I am not sure if this is something that might be a possibility with your son, but I wanted to pass this along to you so you can look into it to see if you think any of it fits your son's symptoms. Again it is spelled NARCPLEPSY, I think this is the correct spelling. Let me know what you think about this after you read about it!
~Santana~
Something in your son's story sounded familar to me today and then I remembered my first cousin who is in his 40's told me that they found out the reason that he keeps just falling asleep out of nowhere and it can happen at any time, standing up, sitting up, in the middle of an activity or while walking. He had had this problem since his teenage years and didn't know why!
Some people thought he was lazy or slow in his thinking, he had some hyperactivity but nothing outrageous! I remember he also started having problems with his vision in childhood and his eyes would not focus or be still when he looked at you. They would focus above you or to the side. He was very smart, but you could tell that something neurological was wrong with him!
Interestingly he had two other brothers out of the five boys that had that had this same appearance neurologically, but one of them had very bad eyesight that progressively got worse as he got older. He did not go blind or anything but has to have a very strong prescription in his glasses. The other brother didn't have any vision issues at all and neither of these two had the falling asleep problem like this one did.
There father has epilepsy, a pretty severe form of it. Anyway my cousin Phillip, was finally dx a couple years ago with something called Narcolepsy! This was the reason for the falling asleep at any time no matter what he was doing. Because of this he can no longer drive.
I Just looked this up and found some similar things that you mentioned about your 13 year old. For example the passing out sort of like falling asleep for a few min and then waking up disoriented and with slurred speech. Also the insomnia. It also mentions loss of muskle control in parts of the body!
It also states that there may be an inheritable factor and that it is not uncommon for a sibling or other member of the family to have a neurological disorder as well.
I am not sure if this is something that might be a possibility with your son, but I wanted to pass this along to you so you can look into it to see if you think any of it fits your son's symptoms. Again it is spelled NARCPLEPSY, I think this is the correct spelling. Let me know what you think about this after you read about it!
~Santana~
Hi Sunnytoday.
They did 2 EEg's (24 hr). They came out Normal. They think that the pressure on the brain caused the seizure type activity. After 2 spinal taps and a blood patch he did not have anymore so far. They relieved the pressure and the spine supposed syrnx did not show after that. They started Dimox on Sat. to relieve the pressure again. He weighed this morning and he has lost 5 pds. since Sat. They were trying for Psuedo Tumor. That was ruled out for sure Sat. and yesterday.
I appreciate any ideas. I do not mind any ?'S or suggestions. thank your prayers. mine are with you.
They did 2 EEg's (24 hr). They came out Normal. They think that the pressure on the brain caused the seizure type activity. After 2 spinal taps and a blood patch he did not have anymore so far. They relieved the pressure and the spine supposed syrnx did not show after that. They started Dimox on Sat. to relieve the pressure again. He weighed this morning and he has lost 5 pds. since Sat. They were trying for Psuedo Tumor. That was ruled out for sure Sat. and yesterday.
I appreciate any ideas. I do not mind any ?'S or suggestions. thank your prayers. mine are with you.
Thank you for the welcome and the message. This forum has done me alot of good today.
I am always busy and not around people that understand what is going on. It is nice to pick up the lap top and know that people you talk understand what you are going through.
Thank you for your prayers and my prayers are with you and your family.
I am always busy and not around people that understand what is going on. It is nice to pick up the lap top and know that people you talk understand what you are going through.
Thank you for your prayers and my prayers are with you and your family.
I want to give you a big warm welcome and say that you and your family inspire me. I'm 20 and have just landed the "probable MS" diagnosis, I'm going to keep looking until I find answers.
One quick note, I tried to reread you post a few times, (sorry the eyes not good today) did your 13 year old son ever have an EEG? The episodes you are describing with him "falling asleep" and then waking up disoriented and slurring speech are sounds like a type of seizure, I can attest to this because my father and also my mom's best friend both have seizures and I've witnessed several different kids of seizures. I've seen both the petit mal and the gran mal seizures and these both affect a child differently, one may simply cause a child to be vacant minded for a few seconds and the other can cause them to lose conciousness and wake up not knowing what happened and be very confused.
I understand that he is having other neurological problems as well that need to be figured out, BUT, I would have this documented and checked out vigorously by a doc. if it hasn't been. Please don't let them brush you off. With your younger son having epilepsy it is more likely that your older son may have it too, it does have a small genetic link I've found in the research I've done for school.
If this has been checked out, forgive me and how wonderful that you don't have to worry about that!
This place is full of loving and caring people, please stick around no matter what happens and join in and share your knowledge, pain and joy. I'm so glad you found us.
Feel free to PM me if you have any questions or just want to talk.
~Sunnytoday~
One quick note, I tried to reread you post a few times, (sorry the eyes not good today) did your 13 year old son ever have an EEG? The episodes you are describing with him "falling asleep" and then waking up disoriented and slurring speech are sounds like a type of seizure, I can attest to this because my father and also my mom's best friend both have seizures and I've witnessed several different kids of seizures. I've seen both the petit mal and the gran mal seizures and these both affect a child differently, one may simply cause a child to be vacant minded for a few seconds and the other can cause them to lose conciousness and wake up not knowing what happened and be very confused.
I understand that he is having other neurological problems as well that need to be figured out, BUT, I would have this documented and checked out vigorously by a doc. if it hasn't been. Please don't let them brush you off. With your younger son having epilepsy it is more likely that your older son may have it too, it does have a small genetic link I've found in the research I've done for school.
If this has been checked out, forgive me and how wonderful that you don't have to worry about that!
This place is full of loving and caring people, please stick around no matter what happens and join in and share your knowledge, pain and joy. I'm so glad you found us.
Feel free to PM me if you have any questions or just want to talk.
~Sunnytoday~
Welcome to the Forum!!
I admire your sons strength. God works in many ways and a child's spirit is one of them. I know I am a mother of 2 wonderful children and their spirit keeps me going even on the worst of days. I am undx and don't have any medical advice that I can hand out but I can say; you came to a place with many kind and caring people. These people are welling to lend an ear, give advice, and share experiences that help others in the process know that you are not alone.
As you push forward I will pray that you will find some answers. You must remember that there are good and and not so good doctors out there. You will find one that will welcome you with open arms, and if they do not have the answers they will search until they find them. You son is lucky to have a mother like you!! Don't let the intimidation knock you down, remember God well not give you any more than you can handle.
God Bless You!!
Aura
I admire your sons strength. God works in many ways and a child's spirit is one of them. I know I am a mother of 2 wonderful children and their spirit keeps me going even on the worst of days. I am undx and don't have any medical advice that I can hand out but I can say; you came to a place with many kind and caring people. These people are welling to lend an ear, give advice, and share experiences that help others in the process know that you are not alone.
As you push forward I will pray that you will find some answers. You must remember that there are good and and not so good doctors out there. You will find one that will welcome you with open arms, and if they do not have the answers they will search until they find them. You son is lucky to have a mother like you!! Don't let the intimidation knock you down, remember God well not give you any more than you can handle.
God Bless You!!
Aura
My 11 yr. old was diagnosed with Epilepsy a year ago and never put on meds because of no seizure activity. We got a new pedi neuro and she said he was showing seizures as well as on the EEG He was showings signs by behavior Because his Epilepsy is in the frontal lobe that has to deal with behavior, ADHD, Anxiety, and OCD. All of this is caused by Epilepsy. When my 13 yr. old was getting a blood patch after spinal taps I took My 11 yr. for an Mri and found the lesion on the brain Last Month she told me we would have another Mri In a few months and if it is worse we will look at MS. Then This last week I find out that the ball was dropped in September 07 on my 13 yr. old and is being diagnosed with MS. Probable at this point. Then I read through your forum that siblings do get it.
11 is suspected of an MS lesion.
I am trying to find out if MS is because of Epilepsy or Epilepsy because of Ms or is there anything to do with each other at all. 2 different issues. I do not know.
God Bless and thanks for your posts.
11 is suspected of an MS lesion.
I am trying to find out if MS is because of Epilepsy or Epilepsy because of Ms or is there anything to do with each other at all. 2 different issues. I do not know.
God Bless and thanks for your posts.
I've only been on this journey for 1.5 years. Quite a short time and not as rough a road as compared to many on this forum.
Thank you for your prayers. You're right, it always affects everyone in the family. I truely wish I had your son's attitude!!!
You mention that your 11 yo son has a 4 inch lesion in his brain. Do they believe that is MS lesion?
Take care and God Bless you too! Pat :)
Thank you for your prayers. You're right, it always affects everyone in the family. I truely wish I had your son's attitude!!!
You mention that your 11 yo son has a 4 inch lesion in his brain. Do they believe that is MS lesion?
Take care and God Bless you too! Pat :)
Thank you for your post.
How long have you been looking for answers?
My prayers are with you and your Family. It not only hits the person in pain it hits the whole family. This is not an easy road but I figure if he can make it at 13 through this then So can I.
Keep in Touch
God Bless
How long have you been looking for answers?
My prayers are with you and your Family. It not only hits the person in pain it hits the whole family. This is not an easy road but I figure if he can make it at 13 through this then So can I.
Keep in Touch
God Bless
Thank you for that advice. I will check into that about the eye and steroids. One of the things I have been told that they may do steroids because his bloodwork shows inflammation and he had high spinal pressures, so that may be the reason for the steroids. They mentioned after a VEP that they would go from there.
I think that is next week.
I will also look at Disovery Health and see if I can find it online for the story you are talking about. My fiance likes that channel.
Thank you and please keep in touch.
GOD BLESS
I think that is next week.
I will also look at Disovery Health and see if I can find it online for the story you are talking about. My fiance likes that channel.
Thank you and please keep in touch.
GOD BLESS
I cannot give much advice as I'm still looking for a diagnosis as well, but I just want to say that as a mother of 4 kids, my heart goes out to you and your family have been through looking for answers for your sons. I can't imagine what you're going through seeing your child in pain.
Your son is wise beyond his years and his attitude is such an inspiration!!
I'm sure that there will be others here that can give you some great words of advice and they will be along.
Take care and may hugs and prayers for you that you can get some answers soon!
Pat :)
Your son is wise beyond his years and his attitude is such an inspiration!!
I'm sure that there will be others here that can give you some great words of advice and they will be along.
Take care and may hugs and prayers for you that you can get some answers soon!
Pat :)
I think (others cut me off if I'm way off) that there is some controversy as to whether steroid treatment for neurological vision problems affects the long term vision recovery, or just the speed. That is, steroids may speed things up (if your son has something like optic neuritis) but they may not affect the end rersult of how well his vision is restored.
I think you are doing the right thing by continuing to seek help for this. Not sure if you are into television, but there is a program on Discovery Health called "Mystery Diagnosis," something of a favorite of mine. Anyway, I saw a recent episode that moved me in which a mother of 3 had two sick boys, and no answers! She also had some thick-skulled doctors. Anyway, when told to wait a long time for an appointment, she refused and instead would not leave the office until a doctor saw her boys. I see you have the same FIGHT in you, and along with the refusal of your son to be labeled "depressed" will hopeful take you toward treatment and recovery.
I think if you have not seen them yet, look at the community health pages for this forum. There is a lot of info about what to expect going into the MS diagnosis process.
I think you are doing the right thing by continuing to seek help for this. Not sure if you are into television, but there is a program on Discovery Health called "Mystery Diagnosis," something of a favorite of mine. Anyway, I saw a recent episode that moved me in which a mother of 3 had two sick boys, and no answers! She also had some thick-skulled doctors. Anyway, when told to wait a long time for an appointment, she refused and instead would not leave the office until a doctor saw her boys. I see you have the same FIGHT in you, and along with the refusal of your son to be labeled "depressed" will hopeful take you toward treatment and recovery.
I think if you have not seen them yet, look at the community health pages for this forum. There is a lot of info about what to expect going into the MS diagnosis process.
I want to Thank all of you for your messages. I am O.K with the message today. I know that the message that was wrote earlier bothered you all almost as much as me. for that I thank you all.
God Bless You All and keep on writing. I appreciate it.
Thanks
MDHatton
God Bless You All and keep on writing. I appreciate it.
Thanks
MDHatton
You are welcome! One of my boys is going to be 13 in August, he is my middle son. My oldest will be 16 in August and my youngest son will be 8 in Sept. My boys have been my stregnth through this all! Mom's and son's have a wonderful bond, don't they! I admire your son for his possitive outlook on things, we could all learn a thing or two from children! I will keep in touch, and will keep you and your family in my prayers!
~Santana~
~Santana~
Thank you Santana for your warm message. I appreciate it. I am sorry that you are going through. My 13 yr. old has a very good outlook and never gives up. I had to learn from him with all his pain that if he does not give up I can't either. My 11 yr. old shows no signs accept for the MRI and He has Epilepsy. Otherwise he is a normal boy.
Hope you get to feeling better. Please keep in touch and let me know how you are feeling.
Hope you get to feeling better. Please keep in touch and let me know how you are feeling.
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