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

March 26, 2005

Hi Donna,

I have no experience with SLE, only seizures. My daughter had 4 EEGs

before seizure activity showed up, also a normal MRI, and normal CT scans

everytime, but she definately has seizures. She was still in them when she

got to the ER

so the doctors documented it. Her doctor put her on the seizure meds even

though the EEG came out normal, it took over a year for any seizure activity

to show up. I hope someone else on here can give you more insight on SLE,

a know a lot of the parents here deal with them. I don't know what your

insurance

will allow, but it really sounds like it might be time to get a second

opinion if the neuro

isn't willing to listen to you. You have to follow your heart, our neuro

told us that

it's a partnership with them, because they depend on the parents to let

them know

when something is wrong, they only see them in the office and we are here

all the time.

They have to listen for it to work though. We had to be seizure free for a

year before

weaning off the seizure meds, then 2 months, and the first strep throat

after it being

out of her system we were right back where we started except worse.

Sometimes

we have to make hard decisions on what to do for our kids, you have to do

the

best you can, and sometimes its not exactly what everybody else would do,

but

you know your child better than anyone, and you just have to follow that gut

instinct and experience. I hope you can find out what is going on with

Craig.

I will be sending many, many prayers for Craig.

Lois

> [Original Message]

>

> To: <Mito >

> Date: 3/27/2005 12:45:23 AM

> Subject: Could my son be having strokelike events? seizures? both?

>

> 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

>

> Please contact mito-owner with any problems or questions.

>

March 27, 2005

Donna

sorry tohear about Craig. It must not only frightening but also frustrating. you may have to find a new neuro to look at him with fresh eyes. Sounds like you may want to revisit with Dr. Cohen too.

There is so much they do not know about mito. Yet the symptoms have to be treated and adressed. I am glad you have video to show. That will hopefully help. How sad we have to provide our doctors with video....

Keep us posted.

rosy, mom to max, 5

March 27, 2005

Donna, Hi. My son, age 6, has been having the same problems. We have

been dealing with seizures since December that we can not get under

control. He is now on 3 seizure meds and we are still having 3-4

seizures a day, 3-4 times a week. I was very concerned a month ago

that he might be having SLE's because he also was losing control of

his mouth and the ability to swallow for up to 6 hours after having a

seizure. He does wake up quite a few mornings and can not use his

mouth. We were in the hospital for 4 days at the end of January and

he was hooked up to an EEG for all 4 days. We took him off of all of

his meds and he did not have a single seizure. He does have abnormal

background activity. As soon as we got him home he started having the

seizures again. So here is what I found out. Yes he does have

seizures even though the EEG is slightly abnormal and his last MRI a

year ago shows no brain damage. He does not have SLE's. The loss of

mouth use is due to the seizures affecting that part of the brain very

intensly. That is where they most likely start and do not spread to

the whole brain. We are now on lamictal, keppra, and zonisamide in

hopes of controling them. We were told at this point we only have a

15% chance of control due to all of the meds we have tried and are

currently on. HTH.

Geri-Anne and Wyatt, Complex I