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Could my son be having strokelike events? seizures? both?

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Hi everyone,

My 8 year old son Craig has taken a downward turn in the last

month. I think he is having seizures again, but starting to wonder

if they could be strokelike events instead? Or maybe both?

He has so many strange neurological symptoms that come and go. This

morning he could not move his mouth or swallow for a few minutes. He

was completely paralyzed in that area. Yesterday, he could not move

his legs, and the other day just one leg. He is having severe

ataxia, times when he cannot walk, crawl or sit up (he is normally

mobile, although his gait is awkward), extreme hyperactivity,

difficulty talking (even more than usual), leg jerks, double vision,

occasional pain in his legs, the list goes on and on. He looks

tired and " out-of- it " often, and a few times has been truly altered

while losing motor control- these are the seizures, I think. (A lot

of the other symptoms have been recorded while on EEG and did not

correlate to seizures before.)

His current neurologist is not convinced that he has ever had

seizures because she has never caught any seizure activity on an

EEG. Craig has been doing so much better since we started seeing

her. He did have a five hour EEG the other day, but he did not have

a single episode while we were there. The EEG came out normal. She

was not around when he was first diagnosed, and I need to show her

the video footage from that time. I already faxed over the EEG

results from that time, but her fellow said they show " epileptic

form activity " and not full-blown seizures.

Craig has never been tested for MELAS. He has an unspecified mito

disorder, and Dr. Cohen did not think he fit any known category,

although said he was " open to correction " . He has never had high

lactate in his blood (a spinal tap was never done). He had a normal

MRI when he was five. He had a normal CT scan too when he was 6.

I am at a loss as to what to do for Craig. He is having so many

neurological " attacks. " Could SLE's be involved, even though he

doesn't fit a lot of the criteria? He does have a lot of brain

involvement, cognitively/behaviorally, like some with MELAS. Is it

possible Dr. Cohen could have missed something because of Craig's

unusual presentation? (I have the upmost respect for him and think

he would have tested for MELAS if there was any possibility of Craig

having it. )

The doctor refuses (speaking through nurses and the fellow on call,

not yet directly) to put Craig back on seizures meds without

documenting some seizure activity (following her advice, we weaned

him off when he was doing so well for the past several months ). I

am pretty convinced he is having some seizures, at least once a

week. He looks just how he looked before he ever started on seizure

meds, and we lost a lot of ground before his previous doctor

discovered he was having seizures (or so she thought?). He was on

Trileptal for over a year, and it seemed to work well with no side

effects. He did have breakthrough " seizures " every couple/few

months and the doctor upped the dose a little each time.

We have some Trileptal left over from before he came off, and we

have started using it anyway. It was a difficult decision, but we

cannot just wait for him to have more seizures and let them go

untreated. I cannot understand why the doctor is so opposed to using

it again, and not more concerned about leaving the seizures

untreated. I let the doctor's office know my decision. I will talk

directly to the doctor soon about it.

Could there be any other explanation for the altered state of

consciousness Craig gets sometimes besides seizures? Or SLE's?

Any insight is so appreciated.

Donna

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