Re: Absence Seizures?? or What else could it be?

[Guest guest]

What kind of diet are you doing, if any? High oxalate can cause some issues, including seizures. My son has epileptiform activity as witnessed on EEG but not video. He has had 7-8 noticeable seizures in 2.5 years. Other things are just whacky behaviors, and I guess some of these may actually be the seizures themselves. Some seizures can be repetitive behavior that doesn't cause unconsciousness. Isn't that weird? Anyway... we do not have him on medication for it b/c the risks of some of the side effects outweighed the risk of seizure I guess (all of his seizures have been with febrile illness, except the last one, which was in May and was 2 days after a gluten exposure, so???)

We had tried b6 and magnesium before but not in significant doses and besides I probably started those at the same time as a bunch of other stuff and if I had seen improvement, I didn't know what I was looking for and what was causing it.

Now that I have studied my son's behavior more and have had him on a lot of the same stuff for a longer time, I am a better judge at what is typical of him on/off supps, etc. Not perfect, just better LOLWe just started b6 and magnesium in high doses about a month ago and we are seeing massive improvements in his behavior. So that makes me happy and sad... happy of course for the improvements and sad that we did not try b6 and mag in higher doses sooner... and that perhaps some of his behavior issues would not have happened at all!

We are on LOD (low oxalate diet) and when oxalate leaves the body it takes a lot of stuff with it. It messes with minerals so people doing LOD or who are eating A LOT of oxalate will get mineral imbalances very easily.

I watched Kara's video and, I'm no expert but, it does seem like seizures to me. I am sure it does not make you feel better but perhaps her body is actually detoxing better and as the toxins are leaving, they are doing a number on her. I'm sorry you are feeling helpless and freaked out right now.

B6 and mag (250 mg B6 plus 200 mg magnesium; for my 40 lb, 5 yr old son) have worked well and we also add 100mg B2 (R5P form) and some other Bs for support.Hang in there. FWIW I still sleep with my son b/c I worry about him too. :::hugs:::

 

Hi. Looking for input from anyone who may be able to relate:

Kara is 7y/o. Diagnosed 4 years ago with autistic disorder. The school/therapists/psychologists became increasingly concerned over the last year or so about Kara's behaviors. It is difficult to explain everything and way too long.....but I will try to condense it....

At one point she was hitting herself in the side of the head when she became frustrated or a demand was being put upon her, either in the school setting or at home. Her communication is greatly impaired so she is not able to tell us what is wrong when the head hitting occurs. Soon the head hitting began to occur when there were no demands upon her. NO ANTECEDENT OR IDENTIFIABLE TRIGGER OF ANY KIND.....during free time at school, appearing to be happy when suddenly a change would come over her facial expression and this head hitting behavior would begin.

That being said, eventually her R eye began to veer outward toward her ear. THE PEDIATIRIC OPTHAMOLOGIST FROM CHILDREN'S HOSPITAL OF PGH said it was a muscle issue, patch the good eye to strenthen the bad eye. This did not work and months later the other eye began to do the same. Eye doc still insists it is a muscle issue.

Went to the neurologist per the schools request, they want to rule out any type of medical issue that may be present. Neurologist sent me home with signs/symptoms of seizures??? Felt from what I told her she was not having seizures and to let her know if anything else happened.

A few weeks ago the TSS was recording Kara during a speech session at school. Over the last few months she has been doing " head bobbing " , not sure whether it is a stim or something to do with her vision. The doc determined she did not need glasses. On the video, she begins to " head bob " , eyes flutter, chin to chest and then she goes limp.....I have never seen her go limp, SHE NEVER SITS STILL...So needless to say I was freaked out. It lasted about 10 to 15 seconds and then she began to snap out of it.

The head hitting, the veering eyes, changes in behavior with no trigger or antecedent...............now the possible " atypical seizure " ....I am insane...We have an EEG scheduled for next week.

If anyone had the patience to read this and could provide me any information or support that might pertain to my situation it would be so greatly appreciated. If you are so inclined, the video of Kara can be seen on YOU TUBE, by searching CONCERNING KK. Thanks so much for your time.

Kara's Mom

-- Toni------Mind like a steel trap...Rusty and illegal in 37 states.

[Guest guest]

Thanks so much for your input. I appreciate you taking the time ! We have been gf/cf/sf/yf/low sugar, no oxalates, occasionally almond butter. Awhile back I tried some of the B's on her and she got so......hyper...your choice to start the b/mg have anything to do with seizures ? I never thought about a seizure occuring due to a diet infraction? Wow........When you say you are seeing improvements in his behavior? May I ask what his big behavior issues are? Just curious.

And Dan

dbklein34@...

Re: Absence Seizures?? or What else could it be?

What kind of diet are you doing, if any? High oxalate can cause some issues, including seizures.

My son has epileptiform activity as witnessed on EEG but not video. He has had 7-8 noticeable seizures in 2.5 years. Other things are just whacky behaviors, and I guess some of these may actually be the seizures themselves. Some seizures can be repetitive behavior that doesn't cause unconsciousness. Isn't that weird? Anyway... we do not have him on medication for it b/c the risks of some of the side effects outweighed the risk of seizure I guess (all of his seizures have been with febrile illness, except the last one, which was in May and was 2 days after a gluten exposure, so???)

We had tried b6 and magnesium before but not in significant doses and besides I probably started those at the same time as a bunch of other stuff and if I had seen improvement, I didn't know what I was looking for and what was causing it.

Now that I have studied my son's behavior more and have had him on a lot of the same stuff for a longer time, I am a better judge at what is typical of him on/off supps, etc. Not perfect, just better LOL

We just started b6 and magnesium in high doses about a month ago and we are seeing massive improvements in his behavior. So that makes me happy and sad... happy of course for the improvements and sad that we did not try b6 and mag in higher doses sooner... and that perhaps some of his behavior issues would not have happened at all!

We are on LOD (low oxalate diet) and when oxalate leaves the body it takes a lot of stuff with it. It messes with minerals so people doing LOD or who are eating A LOT of oxalate will get mineral imbalances very easily.

I watched Kara's video and, I'm no expert but, it does seem like seizures to me. I am sure it does not make you feel better but perhaps her body is actually detoxing better and as the toxins are leaving, they are doing a number on her. I'm sorry you are feeling helpless and freaked out right now.

B6 and mag (250 mg B6 plus 200 mg magnesium; for my 40 lb, 5 yr old son) have worked well and we also add 100mg B2 (R5P form) and some other Bs for support.

Hang in there. FWIW I still sleep with my son b/c I worry about him too. :::hugs:::

Hi. Looking for input from anyone who may be able to relate:

Kara is 7y/o. Diagnosed 4 years ago with autistic disorder. The school/therapists/psychologists became increasingly concerned over the last year or so about Kara's behaviors. It is difficult to explain everything and way too long.....but I will try to condense it....

At one point she was hitting herself in the side of the head when she became frustrated or a demand was being put upon her, either in the school setting or at home. Her communication is greatly impaired so she is not able to tell us what is wrong when the head hitting occurs. Soon the head hitting began to occur when there were no demands upon her. NO ANTECEDENT OR IDENTIFIABLE TRIGGER OF ANY KIND.....during free time at school, appearing to be happy when suddenly a change would come over her facial expression and this head hitting behavior would begin.

That being said, eventually her R eye began to veer outward toward her ear. THE PEDIATIRIC OPTHAMOLOGIST FROM CHILDREN'S HOSPITAL OF PGH said it was a muscle issue, patch the good eye to strenthen the bad eye. This did not work and months later the other eye began to do the same. Eye doc still insists it is a muscle issue.

Went to the neurologist per the schools request, they want to rule out any type of medical issue that may be present. Neurologist sent me home with signs/symptoms of seizures??? Felt from what I told her she was not having seizures and to let her know if anything else happened.

A few weeks ago the TSS was recording Kara during a speech session at school. Over the last few months she has been doing "head bobbing", not sure whether it is a stim or something to do with her vision. The doc determined she did not need glasses. On the video, she begins to "head bob", eyes flutter, chin to chest and then she goes limp.....I have never seen her go limp, SHE NEVER SITS STILL...So needless to say I was freaked out. It lasted about 10 to 15 seconds and then she began to snap out of it.

The head hitting, the veering eyes, changes in behavior with no trigger or antecedent...............now the possible "atypical seizure"....I am insane...We have an EEG scheduled for next week.

If anyone had the patience to read this and could provide me any information or support that might pertain to my situation it would be so greatly appreciated. If you are so inclined, the video of Kara can be seen on YOU TUBE, by searching CONCERNING KK. Thanks so much for your time.

Kara's Mom

--

Toni

------

Mind like a steel trap...

Rusty and illegal in 37 states.

[Guest guest]

Hi Kara's Mom, I just went to YouTube and watched that video. That was a good idea and I would encourage you to keep recording Kara. Our son has atypical seizures. I believe that video does show some type of seizure activity. Our son used to display Meltdowns, Rages, or Tantrums accompanied by self-injury. Often these episodes had NO ANTECEDENT. His pupils would dilate and he would get this " wild animal " look in his eyes. We found out years later that those were actually Seizures. They were caught on a Spect Scan by Dr. Rossignol. We began seizure meds and they went away. Listen to your gut on this. Get the EEG but understand that if it is Negative that does NOT mean she is not having Seizures. Myself and many other parents had to be very aggressive in getting seizures identified in our kids. Consider a 2nd opinion and/ or a Spect Scan. Pamela From: mb12valtrex [mailto:mb12valtrex ] On Behalf Of kleinb14Sent: Friday, September 30, 2011 4:22 PMTo: mb12valtrex Subject: Absence Seizures?? or What else could it be? Hi. Looking for input from anyone who may be able to relate:Kara is 7y/o. Diagnosed 4 years ago with autistic disorder. The school/therapists/psychologists became increasingly concerned over the last year or so about Kara's behaviors. It is difficult to explain everything and way too long.....but I will try to condense it....At one point she was hitting herself in the side of the head when she became frustrated or a demand was being put upon her, either in the school setting or at home. Her communication is greatly impaired so she is not able to tell us what is wrong when the head hitting occurs. Soon the head hitting began to occur when there were no demands upon her. NO ANTECEDENT OR IDENTIFIABLE TRIGGER OF ANY KIND.....during free time at school, appearing to be happy when suddenly a change would come over her facial expression and this head hitting behavior would begin.That being said, eventually her R eye began to veer outward toward her ear. THE PEDIATIRIC OPTHAMOLOGIST FROM CHILDREN'S HOSPITAL OF PGH said it was a muscle issue, patch the good eye to strenthen the bad eye. This did not work and months later the other eye began to do the same. Eye doc still insists it is a muscle issue. Went to the neurologist per the schools request, they want to rule out any type of medical issue that may be present. Neurologist sent me home with signs/symptoms of seizures??? Felt from what I told her she was not having seizures and to let her know if anything else happened.A few weeks ago the TSS was recording Kara during a speech session at school. Over the last few months she has been doing " head bobbing " , not sure whether it is a stim or something to do with her vision. The doc determined she did not need glasses. On the video, she begins to " head bob " , eyes flutter, chin to chest and then she goes limp.....I have never seen her go limp, SHE NEVER SITS STILL...So needless to say I was freaked out. It lasted about 10 to 15 seconds and then she began to snap out of it.The head hitting, the veering eyes, changes in behavior with no trigger or antecedent...............now the possible " atypical seizure " ....I am insane...We have an EEG scheduled for next week.If anyone had the patience to read this and could provide me any information or support that might pertain to my situation it would be so greatly appreciated. If you are so inclined, the video of Kara can be seen on YOU TUBE, by searching CONCERNING KK. Thanks so much for your time. Kara's Mom

[Guest guest]

We had seizure acitivity also and also some of our best supplements are

magnesium and B6. How much are you using of each in the higher doses (and what

weight is your child)? I would like to get a reality check on dosing amounts. I

think our magnesium is good, and it is easy to tell when we are doing too much.

But the B6 I am not very informed on.

Also, just a note, the KPU/Mauve thread going right now is talking about a

possible cause of B6 deficiency that may be of great interest to you all as

well?!

>

>

>

> Hi. Looking for input from anyone who may be able to relate:

>

> Kara is 7y/o. Diagnosed 4 years ago with autistic disorder. The

school/therapists/psychologists became increasingly concerned over the last year

or so about Kara's behaviors. It is difficult to explain everything and way too

long.....but I will try to condense it....

>

> At one point she was hitting herself in the side of the head when she became

frustrated or a demand was being put upon her, either in the school setting or

at home. Her communication is greatly impaired so she is not able to tell us

what is wrong when the head hitting occurs. Soon the head hitting began to occur

when there were no demands upon her. NO ANTECEDENT OR IDENTIFIABLE TRIGGER OF

ANY KIND.....during free time at school, appearing to be happy when suddenly a

change would come over her facial expression and this head hitting behavior

would begin.

>

> That being said, eventually her R eye began to veer outward toward her ear.

THE PEDIATIRIC OPTHAMOLOGIST FROM CHILDREN'S HOSPITAL OF PGH said it was a

muscle issue, patch the good eye to strenthen the bad eye. This did not work and

months later the other eye began to do the same. Eye doc still insists it is a

muscle issue.

>

> Went to the neurologist per the schools request, they want to rule out any

type of medical issue that may be present. Neurologist sent me home with

signs/symptoms of seizures??? Felt from what I told her she was not having

seizures and to let her know if anything else happened.

>

> A few weeks ago the TSS was recording Kara during a speech session at school.

Over the last few months she has been doing " head bobbing " , not sure whether it

is a stim or something to do with her vision. The doc determined she did not

need glasses. On the video, she begins to " head bob " , eyes flutter, chin to

chest and then she goes limp.....I have never seen her go limp, SHE NEVER SITS

STILL...So needless to say I was freaked out. It lasted about 10 to 15 seconds

and then she began to snap out of it.

>

> The head hitting, the veering eyes, changes in behavior with no trigger or

antecedent...............now the possible " atypical seizure " ....I am insane...We

have an EEG scheduled for next week.

>

> If anyone had the patience to read this and could provide me any information

or support that might pertain to my situation it would be so greatly

appreciated. If you are so inclined, the video of Kara can be seen on YOU TUBE,

by searching CONCERNING KK. Thanks so much for your time.

>

>

> Kara's Mom

>

>

>

>

>

>

>

>

>

> --

> Toni

>

> ------

> Mind like a steel trap...

> Rusty and illegal in 37 states.

>

[Guest guest]

Hi,

I noted earlier that our Mia has had siezure activity. We've been doing

intensive parasite treatment lately (the humaworm microscope family- we've also

been doing biomed with ND's, DO's, and an MD for 3 years). I am diving into the

discussion on PKU. The deficiencies associated with PKU and with parasitic

infection interested me as related to our seizure issues and this thread. So I

did a quick search and found that indeed seizures (in diagnosed epilepsy) are

specifically related to B6 deficiency (which are found in PKU)!!!!! Pasted below

is an article from an epilepsy website. This information is useful in its own

right- addressing the mineral deficiencies and supplementing with B6 will help

with seizures. The article also states that some minerals become deficient with

long term seizure medications, so could be helpful if you start on meds (or for

Pamela in case you didn't already know this? You may already?) I hope it helps!

But after just reading the PKU stuff, the mirror between seizures and PKU just

seems STUNNING to me.

------

FROM http://www.epilepsy.com/epilepsy/provoke_nutrition

Do vitamin deficiencies cause or worsen seizures?

The only vitamin deficiency known to cause or worsen seizures is a deficiency of

vitamin B6 (pyridoxine). This deficiency occurs mainly in newborns and infants

and causes seizures that are hard to control. In some cases, the doctor may give

the baby the vitamin through an IV while recording the EEG. If the EEG improves

dramatically, that shows that there is a B6 deficiency. Some doctors may also

try vitamin B6 in older children with difficult-to-control seizures, but there

is no solid evidence that it will be helpful.

Can low levels of minerals in the body affect seizure activity?

Minerals are essential nutrients. Low levels of the minerals sodium, calcium,

and magnesium can alter the electrical activity of brain cells and cause

seizures.

What factors cause low levels of minerals in the body?

Mineral deficiency is rare unless there is severe general malnutrition, but the

following factors may affect mineral levels in the body:

Low sodium levels may be caused by medications such as diuretics (water pills)

or carbamazepine and oxcarbazepine (Tegretol, Carbatrol, Trileptal), by

excessive water intake, or by hormonal disorders.

Low calcium levels most often result from kidney disease or hormonal disorders.

They also may be linked to low magnesium levels.

Low magnesium levels can be the result of chronic abuse of alcohol and poor

nutrition. Low magnesium levels can lead to seizures and also can cause low

calcium levels.

Should I take extra minerals?

Persons with epilepsy very seldom need to take extra sodium, calcium, or

magnesium for seizure control. If your doctor finds that you have low levels in

your body and no underlying disorder is identified, it may be reasonable to

change your diet or take a mineral supplement. Taking extra doses of certain

minerals can help to prevent side effects that may follow the long-term use of

some seizure medicines. Check the specific information about the medicines you

take to see if this applies to you.

>

> Hi Kara's Mom,

>

> I just went to YouTube and watched that video. That was a good idea and I

> would encourage you to keep recording Kara. Our son has atypical seizures.

> I believe that video does show some type of seizure activity.

>

> Our son used to display Meltdowns, Rages, or Tantrums accompanied by

> self-injury. Often these episodes had NO ANTECEDENT. His pupils would

> dilate and he would get this " wild animal " look in his eyes. We found out

> years later that those were actually Seizures. They were caught on a Spect

> Scan by Dr. Rossignol. We began seizure meds and they went away.

>

> Listen to your gut on this. Get the EEG but understand that if it is

> Negative that does NOT mean she is not having Seizures. Myself and many

> other parents had to be very aggressive in getting seizures identified in

> our kids. Consider a 2nd opinion and/ or a Spect Scan.

>

> Pamela

>

>

> From: mb12valtrex [mailto:mb12valtrex ] On

> Behalf Of kleinb14

> Sent: Friday, September 30, 2011 4:22 PM

> To: mb12valtrex

> Subject: Absence Seizures?? or What else could it be?

>

>

> Hi. Looking for input from anyone who may be able to relate:

>

> Kara is 7y/o. Diagnosed 4 years ago with autistic disorder. The

> school/therapists/psychologists became increasingly concerned over the last

> year or so about Kara's behaviors. It is difficult to explain everything and

> way too long.....but I will try to condense it....

>

> At one point she was hitting herself in the side of the head when she became

> frustrated or a demand was being put upon her, either in the school setting

> or at home. Her communication is greatly impaired so she is not able to tell

> us what is wrong when the head hitting occurs. Soon the head hitting began

> to occur when there were no demands upon her. NO ANTECEDENT OR IDENTIFIABLE

> TRIGGER OF ANY KIND.....during free time at school, appearing to be happy

> when suddenly a change would come over her facial expression and this head

> hitting behavior would begin.

>

> That being said, eventually her R eye began to veer outward toward her ear.

> THE PEDIATIRIC OPTHAMOLOGIST FROM CHILDREN'S HOSPITAL OF PGH said it was a

> muscle issue, patch the good eye to strenthen the bad eye. This did not work

> and months later the other eye began to do the same. Eye doc still insists

> it is a muscle issue.

>

> Went to the neurologist per the schools request, they want to rule out any

> type of medical issue that may be present. Neurologist sent me home with

> signs/symptoms of seizures??? Felt from what I told her she was not having

> seizures and to let her know if anything else happened.

>

> A few weeks ago the TSS was recording Kara during a speech session at

> school. Over the last few months she has been doing " head bobbing " , not sure

> whether it is a stim or something to do with her vision. The doc determined

> she did not need glasses. On the video, she begins to " head bob " , eyes

> flutter, chin to chest and then she goes limp.....I have never seen her go

> limp, SHE NEVER SITS STILL...So needless to say I was freaked out. It lasted

> about 10 to 15 seconds and then she began to snap out of it.

>

> The head hitting, the veering eyes, changes in behavior with no trigger or

> antecedent...............now the possible " atypical seizure " ....I am

> insane...We have an EEG scheduled for next week.

>

> If anyone had the patience to read this and could provide me any information

> or support that might pertain to my situation it would be so greatly

> appreciated. If you are so inclined, the video of Kara can be seen on YOU

> TUBE, by searching CONCERNING KK. Thanks so much for your time.

>

>

> Kara's Mom

>