e2farley
12-15-2006, 06:21 PM
Just to give a bit of a background...
My son, Sean, came to me early in November and noted to me that his pupil was quite dilated (nearly covered the color in his eye). He did not have a headache and so I opted to "keep an eye on it"...The dilation lasted for about 5 hours. No other symptoms at that time.
Then the next week Sean had a seizure - unexplained. He was lying on the couch and I heard a gurgling sound. Came out to the living room to find him unconscious. I pulled his clothes off, dripped water on his face - but no response. (Sean has never had a seizure before). I immediately called 911, at which time Sean was transported to the hospital. He did have a CT scan which was negative. We were then referred to a pediatric neurologist who did an EEG, this also which was negative.
Two evenings ago Sean reported to me that he had a sudden "numbing" (right side only)- it started in his shin, up his leg and buttock, up through his rib-cage area, throughout his entire arm, and up his neck, jaw and tongue. This episode lasted for about 15 minutes. It was preceded by a headache 10 minutes before. Again, he was taken to the emergency department (different hospital than where the neurological pediatrician is). No tests were done at that time as they "do not do emergency MRIs".
The doctor called back back today. Sean is going in next week for an MRI and MRA (angiogram). I am scared to death. Can anyone give me any advice? Thanks so much.
My son, Sean, came to me early in November and noted to me that his pupil was quite dilated (nearly covered the color in his eye). He did not have a headache and so I opted to "keep an eye on it"...The dilation lasted for about 5 hours. No other symptoms at that time.
Then the next week Sean had a seizure - unexplained. He was lying on the couch and I heard a gurgling sound. Came out to the living room to find him unconscious. I pulled his clothes off, dripped water on his face - but no response. (Sean has never had a seizure before). I immediately called 911, at which time Sean was transported to the hospital. He did have a CT scan which was negative. We were then referred to a pediatric neurologist who did an EEG, this also which was negative.
Two evenings ago Sean reported to me that he had a sudden "numbing" (right side only)- it started in his shin, up his leg and buttock, up through his rib-cage area, throughout his entire arm, and up his neck, jaw and tongue. This episode lasted for about 15 minutes. It was preceded by a headache 10 minutes before. Again, he was taken to the emergency department (different hospital than where the neurological pediatrician is). No tests were done at that time as they "do not do emergency MRIs".
The doctor called back back today. Sean is going in next week for an MRI and MRA (angiogram). I am scared to death. Can anyone give me any advice? Thanks so much.
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Alagaesia
12-16-2006, 03:29 AM
It could be a number of things. I hate to say this but has your son been doing any drugs? Has he been tested for drugs? I'm not saying that's the case I'm just thinking of all the possibilities. Could be a neurological condition or a heart condition. Does he get tired frequently or seem to have any other symptoms?
feelbad
12-16-2006, 07:35 AM
I see you live in MN,do you live around the twin cities area or more rural MN?what hosp did you go to?i am very very familiar with all hosps in the metro,believe me,between mine and my sons problems it has been an ongoing ride thru all the hospitals.if you have not already done so,gillette childrens is an excellent place to take him,really fantastic hosp.my son spent alot of time there after a traumatic brain injury which left him in a coma and then the need for extensive rehab,which he got at gillette.gillette is actually kind of part of Regions hosp in st paul.just a suggestion for you.
the symptoms your son has been having do indicate some sort of a definite neuro issue going on.a CT is not what you need,the MRI and the MRA are the best ways to really look at his symptoms.there could be any number of things going on from a possible bleed from a weakened vessel to cavernous hemangioma, to whats called an AVM?arteriovenous malformaton.The last two are congenital vascular malformations.i have a cavernous hemangioma within my spinal cord which at first was thought to be an AVM,thankfully it was not.it would have been much higher risk.these can show up in the brain as well.they say they are pretty rare,but i seem to be knowing people now that have these who never knew they did either,just like me,til it happened to show up on a routine MRI for a herniated disc problem.
what really caught my attention here was the pupil?only one being dialated?this "could" suggest possible sympathetic nervous system involvement or a change in the CNS pressure within the brain.you definitely did the right thing in calling 911.but all his symptoms do indicate something is just not right within the brain itself,you ARE getting the right tests tho,so thats great.these will be able to tell you for sure whther he has some sort of a vascular malformation in there.the MRA is a very difinitive type test and will normally be able to pick up on even slight bulges within any given arterial wall.this was the only test that actually picked up on my brain aneurysm.the MRI i had had done weeks before never showed it only because it was at a bend in the artery and also very very close to a junction with another artery.the MRA only shows strictly the brain arteries and no other structures which of course really shows any possible changes really well.
hopefully these tests will at least point you in a good direction.having all of these ***arre symptoms without an actual cause that you can actually see on some sort of test,well that alone can make you crazy.once you find the issue at least you know what you are dealing with.i wish you both luck here and hope it is something manageable.please let me know just what you find out.marcia
the symptoms your son has been having do indicate some sort of a definite neuro issue going on.a CT is not what you need,the MRI and the MRA are the best ways to really look at his symptoms.there could be any number of things going on from a possible bleed from a weakened vessel to cavernous hemangioma, to whats called an AVM?arteriovenous malformaton.The last two are congenital vascular malformations.i have a cavernous hemangioma within my spinal cord which at first was thought to be an AVM,thankfully it was not.it would have been much higher risk.these can show up in the brain as well.they say they are pretty rare,but i seem to be knowing people now that have these who never knew they did either,just like me,til it happened to show up on a routine MRI for a herniated disc problem.
what really caught my attention here was the pupil?only one being dialated?this "could" suggest possible sympathetic nervous system involvement or a change in the CNS pressure within the brain.you definitely did the right thing in calling 911.but all his symptoms do indicate something is just not right within the brain itself,you ARE getting the right tests tho,so thats great.these will be able to tell you for sure whther he has some sort of a vascular malformation in there.the MRA is a very difinitive type test and will normally be able to pick up on even slight bulges within any given arterial wall.this was the only test that actually picked up on my brain aneurysm.the MRI i had had done weeks before never showed it only because it was at a bend in the artery and also very very close to a junction with another artery.the MRA only shows strictly the brain arteries and no other structures which of course really shows any possible changes really well.
hopefully these tests will at least point you in a good direction.having all of these ***arre symptoms without an actual cause that you can actually see on some sort of test,well that alone can make you crazy.once you find the issue at least you know what you are dealing with.i wish you both luck here and hope it is something manageable.please let me know just what you find out.marcia
e2farley
12-17-2006, 09:57 PM
Thanks, you two, for your replies.
No, Sean does not do any drugs. There was NO question of that on my end, but the hospital did check, and it was negative. Sean does get tired, but he has been tired since he started going through puberty, really. I wouldn't say it is anything out of the "norm." However, Sean was EXTREMELY tired after his seizure and after the episode of the numbness. In fact, he slept nearly the entire day after both episodes. My sister has epilepsy, though, and she has ALWAYS needed LOTS of extra rest following a seizure.
Sean is being seen at the Mayo Clinic in Rochester. I appreciate their expertise there. My 8-year-old daughter has been going to Gillette's Children's Hospital since January for a pineal cyst on/near her pituitary gland which forced her into precocious puberty, but that is another issue. So, I agree that they too are a tremendous facility.
I just have a couple of questions. Wouldn't a congenital malformation show up earlier than at age 14? And what kinds of symptoms show up with autonomic nervous system disorders? Again, I thank you for your time in trying to give your advice/input. I really do appreciate it.
No, Sean does not do any drugs. There was NO question of that on my end, but the hospital did check, and it was negative. Sean does get tired, but he has been tired since he started going through puberty, really. I wouldn't say it is anything out of the "norm." However, Sean was EXTREMELY tired after his seizure and after the episode of the numbness. In fact, he slept nearly the entire day after both episodes. My sister has epilepsy, though, and she has ALWAYS needed LOTS of extra rest following a seizure.
Sean is being seen at the Mayo Clinic in Rochester. I appreciate their expertise there. My 8-year-old daughter has been going to Gillette's Children's Hospital since January for a pineal cyst on/near her pituitary gland which forced her into precocious puberty, but that is another issue. So, I agree that they too are a tremendous facility.
I just have a couple of questions. Wouldn't a congenital malformation show up earlier than at age 14? And what kinds of symptoms show up with autonomic nervous system disorders? Again, I thank you for your time in trying to give your advice/input. I really do appreciate it.
feelbad
12-20-2006, 12:05 PM
sorry you are having to deal with two children with major issues.one was more than enough for me to handle along with my crap.my congenital malformation was not Dxed til i was 40 years old(whether or not any sort of congenital problem will actually show itself depends on sooo many different factors.it all depends on how big it is,where it is,and what it is actually affecting.my sons congenital liver failure didn't show up til he started vomiting up blood one day at school and was actually down to having only 20% liver function left,and we NEVER knew he was even sick.he was only 12 at that time).it just happened to show up on my MRI when i went to just see how badly a particular disc was herniated.it was just there sitting inside my spinal cord.it had also bled at least once and had another about a year after the original finding of it.thats when i needed to have it out.i went up to the U of M and saw the head of neurosurgery there.he told me since mine was an active bleeder,that the chances of having another really soon were very high and that the next one would most likely paralyze me since i ws running out of cord space.so we had the surgery to try and remove it.during that surgery many things were damaged and they also had to stop before they were done since they had hit and lost the nerves that went to my legs,one nerve came back on the monitor and the other one did not,so that was it.
when i was sent to rehab to try and regain the use of my left hand and my left leg,the second day there all of the sudden when i went to brush my teeth one night,i noticed i had one pupil that was different from the other,the L one was almost pinpoint while the right one was about midrange in size.i thought i had developed a CSF leak at the surgical site or was having a stroke.here it was caused by the (til then unknown to me anyways)sympathetic nervous system damage that had occured during my surgery.
when i had awoken in recovery after that surgery,all i could hear was the nurses and docs talking about my heart rate and trying to stabilize it.i have never ever had any sort of heart issues,ever til then.this was also the first indicator of my SNS damage.an out of control heart rate.the SNS governs many areas,along with the para sympathetic.depending on what exactly has been affected you can have a range of symptoms.it can effect your heart rate,your BPs,i am now hypotensive in my BPs,its not all that unusual for my systolic to actually be under 100.which is good for me becaue i also suffer from kidney disease so the lower the better there.but there has been a definite affect in many little things,body system functions since this happened.i think in order to really see all of the signs and symptoms of SNS affectation,just research the sympathetic nervous system and the para sympathetic nervous system and see for yourself all of the possible affectations and then compare that with what you have been seeing in your son.just put like "signs and symptoms of sympathetic nervous system damage" into a search,and see what pops up and go from there.there are just so many different things that can be affected that i cannot even remeber them all so you would be much better off doing it this way so you can really see the full scope of them for yourself.
its really does sound like you are doing all the right things here and everything possible to try and find the answers for your son.if you have any other questions or anything,please don't hesitate to ask,K? i do wish you lots of luck here in finding the answers.hopefully you will at least know something here soon.marcia
when i was sent to rehab to try and regain the use of my left hand and my left leg,the second day there all of the sudden when i went to brush my teeth one night,i noticed i had one pupil that was different from the other,the L one was almost pinpoint while the right one was about midrange in size.i thought i had developed a CSF leak at the surgical site or was having a stroke.here it was caused by the (til then unknown to me anyways)sympathetic nervous system damage that had occured during my surgery.
when i had awoken in recovery after that surgery,all i could hear was the nurses and docs talking about my heart rate and trying to stabilize it.i have never ever had any sort of heart issues,ever til then.this was also the first indicator of my SNS damage.an out of control heart rate.the SNS governs many areas,along with the para sympathetic.depending on what exactly has been affected you can have a range of symptoms.it can effect your heart rate,your BPs,i am now hypotensive in my BPs,its not all that unusual for my systolic to actually be under 100.which is good for me becaue i also suffer from kidney disease so the lower the better there.but there has been a definite affect in many little things,body system functions since this happened.i think in order to really see all of the signs and symptoms of SNS affectation,just research the sympathetic nervous system and the para sympathetic nervous system and see for yourself all of the possible affectations and then compare that with what you have been seeing in your son.just put like "signs and symptoms of sympathetic nervous system damage" into a search,and see what pops up and go from there.there are just so many different things that can be affected that i cannot even remeber them all so you would be much better off doing it this way so you can really see the full scope of them for yourself.
its really does sound like you are doing all the right things here and everything possible to try and find the answers for your son.if you have any other questions or anything,please don't hesitate to ask,K? i do wish you lots of luck here in finding the answers.hopefully you will at least know something here soon.marcia
suze999
12-23-2006, 10:53 AM
stay on the dr's, read everything you can, and get into immediate rehab if he had a stroke...at his age they can so many things to help his ..
e2farley
12-29-2006, 02:17 AM
I just wanted to update you on Sean. We found out after his MRI/MRA that he has a brain tumor :( :(. He is having surgery tomorrow morning. Well, actually in looking at the time, it will be this morning. And although we are fearful and sad, we do know that his surgeon is ONE OF THE BEST IN THE WORLD! Wish us luck! And good luck to all of you.
Fillyelf
01-09-2007, 11:06 AM
I'm so sorry to hear about this. I sure hope your family is doing ok.
sawbuck44
01-12-2007, 11:37 AM
sorry double post -
sawbuck44
01-12-2007, 11:40 AM
My son is also 14 and had an MRI and ctscan when he had an episode of blurred vision and numbness in his arm and jaw preceeded by a headache. He was at baseball camp and the coach told him to 'ice it.' I was not happy with that response. They found nothing. He has had no reoccurrances. We are thinking it was due to exhaustion and the extreme heat. It was about 92 degrees that day and he had run the 2 mi track and was in the sun all day.
How did the surgery go? I'm sure you are extremely busy with your family right now. Update us when you can. God Bless
How did the surgery go? I'm sure you are extremely busy with your family right now. Update us when you can. God Bless
Ariaden
01-13-2007, 06:24 AM
i'm so sorry to hear about your son! i hope everything goes well with the surgery!!!
dcsnyder
02-20-2007, 01:51 AM
Just to give a bit of a background...
My son, Sean, came to me early in November and noted to me that his pupil was quite dilated (nearly covered the color in his eye). He did not have a headache and so I opted to "keep an eye on it"...The dilation lasted for about 5 hours. No other symptoms at that time.
Then the next week Sean had a seizure - unexplained. He was lying on the couch and I heard a gurgling sound. Came out to the living room to find him unconscious. I pulled his clothes off, dripped water on his face - but no response. (Sean has never had a seizure before). I immediately called 911, at which time Sean was transported to the hospital. He did have a CT scan which was negative. We were then referred to a pediatric neurologist who did an EEG, this also which was negative.
Two evenings ago Sean reported to me that he had a sudden "numbing" (right side only)- it started in his shin, up his leg and buttock, up through his rib-cage area, throughout his entire arm, and up his neck, jaw and tongue. This episode lasted for about 15 minutes. It was preceded by a headache 10 minutes before. Again, he was taken to the emergency department (different hospital than where the neurological pediatrician is). No tests were done at that time as they "do not do emergency MRIs".
The doctor called back back today. Sean is going in next week for an MRI and MRA (angiogram). I am scared to death. Can anyone give me any advice? Thanks so much.
My son, Sean, came to me early in November and noted to me that his pupil was quite dilated (nearly covered the color in his eye). He did not have a headache and so I opted to "keep an eye on it"...The dilation lasted for about 5 hours. No other symptoms at that time.
Then the next week Sean had a seizure - unexplained. He was lying on the couch and I heard a gurgling sound. Came out to the living room to find him unconscious. I pulled his clothes off, dripped water on his face - but no response. (Sean has never had a seizure before). I immediately called 911, at which time Sean was transported to the hospital. He did have a CT scan which was negative. We were then referred to a pediatric neurologist who did an EEG, this also which was negative.
Two evenings ago Sean reported to me that he had a sudden "numbing" (right side only)- it started in his shin, up his leg and buttock, up through his rib-cage area, throughout his entire arm, and up his neck, jaw and tongue. This episode lasted for about 15 minutes. It was preceded by a headache 10 minutes before. Again, he was taken to the emergency department (different hospital than where the neurological pediatrician is). No tests were done at that time as they "do not do emergency MRIs".
The doctor called back back today. Sean is going in next week for an MRI and MRA (angiogram). I am scared to death. Can anyone give me any advice? Thanks so much.
dcsnyder
02-20-2007, 02:02 AM
You may want to check for metals in the teeth etc. After surgically removing a metal clip from my body within a week the pain in my lower back went away. I will also be removing a titanium pin from my jaw. I believe that my right leg will also get better after it is removed. I had a Clifford Test for metals and it showed that I react to certain metals. They are not good for me. Good Luck!