Infantile Spasms

[Guest guest]

My son (11 weeks old ) did the same thing with his legs.....quick tremors/

spasms that lasted just a few seconds. He's not vaccinated either. My

sister-in-law said her two children did this as well. Her ped said it was

due to an immature nervous system and eventually goes away.

infantile spasms

>From: art de mano < " artdemano@... " @earthlink.net>

>

>Regarding such spasms and vaccines, while I know that certain vaccines

>can and do cause seizures/spasms in some children(like pertussis, as it

>did with my son at 2 mths; stiffening, spasming, etc.) my daughter has

>had a few episodes which sound like what is being described here. She

>was about 4 wks. at the time, and would twitch, tremble, and jerk, eyes

>rolling back in the head for a few seconds, usually when on the verge of

>falling asleep or waking up to nurse. It freaked me out the first time,

>and I watched her very carefully.(Fearing epilepsy or some such thing.)

>It happened a few more times over the next few days, but there were

>never any more extreme or lasting symptoms. She hasn't had any other

>instances since then, and is almost 3 mths now. She has not been

>vaccinated at all (and was born at home so I KNOW this is the case). I

>asked my sis-in-law about it at the time, and she said her kids had done

>similar things and she thought it was just one of those things that

>babies sometimes do, like their weird breathing patterns in the first

>few months. Could be a normal adjustment of the nervous system, or akin

>to us startling on the edge of sleep/waking. Just my 2 cents! Love,

>Kim, mom to Forest, 7 and Lily, 3 mths.

>

>>

[Guest guest]

I have experience with infantile spasms. My son was diagnosed with infantile

spasms at 7 months old. We went through so many medications and nothing worked

to stop the seizures. We even tried ACTH. These are steroid shots I had to give

my son daily for a few weeks. That did not work. He is now 16 years old and is

mildly mentally retarded. His seizures have not stopped but they do not call it

infantile spasms anymore they just diagnose it as an uncontrolled seizure

disorder. The only relief we got from seizures is when they came out with the

drug felbatol. That stopped his seizures for 4 years but unfortunately he broke

through that medication as well. He has been seeing a brain mapping surgeon for

possible surgery but because he is also autistic, testing is very difficult. He

is very uncooperative! I just had a consultation last week with a surgeon who

implants the vegas nerve stimulator and it looks like that will be our only

option at this time. I had never heard of

infantile spasms before and the literature the hospital gave me to read about

it left me devasted. The prognosis did not seem good at all for my son. I had no

one that I could talk to and I felt so scared and alone. Good luck with your

daughter and if you would ever like to talk more about it please e-mail me @

luciousgreeneyedlady@... Theresa

duggandonna <donnaduggan@...> wrote: We went to the

neurologist today to get the results of the 4 hour

video EEG that was done last week. I thought I saw 4 small seizures

during this procedure. It turned out that she actually had 18

seizures during the 4 hour period. The neurologist spent an hour

talking with me and is going to try another medicine called Topmax.

He is the doctor who was there the night in June (june 6) when she

was so sick. His heart is tender toward us because he saw

everything we went through in June. He said you know she almost died

several times. I said yes. What else can you say? He is not sure

if the medicine will help or not. He said her seizures are similar

to infantile spasms which are very hard to treat and usually lead to

mental retardation. He said I really do not need to be worried

about her talking and walking. I need to concentrate on the

seizures as they are keeping her from making much progress. He also

went on to say that he does not know her long term prognosis but

reminded me that she had been very very sick and had a severe brain

injury. He said just take it one day at a time. That is all any of

us really can do anyway. No one knows the future. We can plan and

plan but ultimately we must trust GOD. He holds ALL the future in

his hands. I know he still has an awesome plan for Hannah. Does

anyone have experience with infantile spasms ?

Donna (mom to Hannah aka Princess of the Universe)

---------------------------------

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[Guest guest]

Dear Donna,

Please do not give up hope. My son had Infantile Spasms (IS). He is now 17 years

old and has a normal IQ. At one time, he was even 2 years above his grade level.

So trust me, miracle does happen. It happened to , my son.

First, if it is IS, it is usually refractive to almost all anti-convulsants.

My son's neurologist has to use ACTH injection to stop his seizures. To me,

seizure is almost like a flood gate. Once opened, it is hard to close. ACTH was

effective for my son. Once ACTH (90 injections) stops his seizure, then

anti-convulsants worked. So has your daughter had ACTH injections?

In Germany and Japan, actually the first choice of defense for IS is megadose

of B6 or pyridoxine HCl. Recently Dr. Wang published a paper in 2005 and

reported that PLP is even more effective. PLP is the active form of B6. This is

possibly due to the fact that B6 needs cofactors such as Zinc and Magnesium. For

example, if your daughter's kinase process is impaired then PLP will allow her

to bypass the issues of the cofactors. So ask your neurologist about Dr. Wang's

work.

Unfortunately many doctors do not believe in vitamins and nutritional

treatments. They are wrong. Dr. Bruce Ames, known for the famous Ames test and

is one of the topmost researchers in the country, has recently published a paper

discussing over 50 illnesses can be corrected by megadose of appropriate

vitamins.

Please see Dr. Wang's abstract below. An impressive 46% of infantile spasms

respond to PLP or PN (same as B6) treatments. This will be my first choice since

there was some concerns regarding possibly ACTH would cause some brain atrophy.

Best of luck. Have faith in your God. I have faith in my Buddha and he guided

us through hard times and just like you there were times I thought we might lose

but he is still with me. Your God will provide the anchor for you.

CY

Arch Dis Child. 2005 May;90(5):512-5.

Links

Comment in:

Arch Dis Child. 2005 May;90(5):441-2.

Pyridoxal phosphate is better than pyridoxine for controlling idiopathic

intractable epilepsy.

Wang HS, Kuo MF, Chou ML, Hung PC, Lin KL, Hsieh MY, Chang MY.

Division of Pediatric Neurology, Chang Gung Children's Hospital, and Medical

College of Chang Gung University, Taoyuan, Taiwan. wanghs444@...

AIM: To study the difference between pyridoxine (PN) and its active form,

pyridoxal phosphate, (PLP) in control of idiopathic intractable epilepsy in

children. METHODS: Among 574 children with active epilepsy, 94 (aged 8 months to

15 years) were diagnosed with idiopathic intractable epilepsy for more than six

months. All received intravenous PLP 10 mg/kg, then 10 mg/kg/day in four divided

doses. If seizures recurred within 24 hours, another dose of 40 mg/kg was given,

followed by 50 mg/kg/day in four divided doses. For those patients whose

seizures were totally controlled, PLP was replaced by the same dose of oral PN.

If the seizure recurred, intravenous PLP was infused followed by oral PLP 50

mg/kg/day. RESULTS: Fifty seven patients had generalised seizures (of whom 13

had infantile spasms) and 37 had focal seizure. Eleven had dramatic and

sustained responses to PLP; of these, five also responded to PN. Within six

months of treatment with PLP or PN, five of the 11

patients were seizure free and had their previous antiepileptic medicine

tapered off gradually. Two were controlled with pyridoxine and the other three

needed PLP to maintain seizure freedom. The remaining six responders needed PLP

exclusively for seizure control. Six of the 11 responders to PLP had infantile

spasms (46%); four of them needed PLP exclusively. The other five responders

were in the remaining 81 patients with other seizure type. CONCLUSIONS: PLP

could replace PN in the treatment of intractable childhood epilepsy,

particularly in the treatment of infantile spasms.

duggandonna <donnaduggan@...> wrote:

We went to the neurologist today to get the results of the 4 hour

video EEG that was done last week. I thought I saw 4 small seizures

during this procedure. It turned out that she actually had 18

seizures during the 4 hour period. The neurologist spent an hour

talking with me and is going to try another medicine called Topmax.

He is the doctor who was there the night in June (june 6) when she

was so sick. His heart is tender toward us because he saw

everything we went through in June. He said you know she almost died

several times. I said yes. What else can you say? He is not sure

if the medicine will help or not. He said her seizures are similar

to infantile spasms which are very hard to treat and usually lead to

mental retardation. He said I really do not need to be worried

about her talking and walking. I need to concentrate on the

seizures as they are keeping her from making much progress. He also

went on to say that he does not know her long term prognosis but

reminded me that she had been very very sick and had a severe brain

injury. He said just take it one day at a time. That is all any of

us really can do anyway. No one knows the future. We can plan and

plan but ultimately we must trust GOD. He holds ALL the future in

his hands. I know he still has an awesome plan for Hannah. Does

anyone have experience with infantile spasms ?

Donna (mom to Hannah aka Princess of the Universe)

---------------------------------

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[Guest guest]

Hi Donna,

There is another group called infantilespasms@groups,com

that I am on which would be helpful to join. I only read this group

every so often so I may have missed it but what happened in June,

how did your daughter almost die? Have you had a CT or MRI done.

There are some important things to check for such as pyridoxine (B6)

dependancy and biotinidase deficiency. These metabolic problems can

cause IS.

My son has been having IS for almost a year and he is only 13 mths.

I too want to beleive that he is here for a purpose(other than for

me to adore). has just begun the Ketogenic Diet, fingers

crossed this helps.

Vigabatrin often works for IS, it reduced 's seizures but

apparently he is having so much bad activity on his EEG that it is

stopping all normal development. I used to think that if we couldn't

see a seizure then it didn't matter but now the neuros tell me that

he is having no normal activity even when we see no seizures so my

aim is to normalise his EEG as much as possible with as little drugs

as possible,

was found to have a brain malformation on a sml part of his

brain which makes his brain hyperexcitable. I hope you find a

solution soon.

Stay positive, best wishes.

Rose and the beautiful

>

> We went to the neurologist today to get the results of the 4 hour

> video EEG that was done last week. I thought I saw 4 small

seizures

> during this procedure. It turned out that she actually had 18

> seizures during the 4 hour period. The neurologist spent an hour

> talking with me and is going to try another medicine called

Topmax.

> He is the doctor who was there the night in June (june 6) when she

> was so sick. His heart is tender toward us because he saw

> everything we went through in June. He said you know she almost

died

> several times. I said yes. What else can you say? He is not sure

> if the medicine will help or not. He said her seizures are similar

> to infantile spasms which are very hard to treat and usually lead

to

> mental retardation. He said I really do not need to be worried

> about her talking and walking. I need to concentrate on the

> seizures as they are keeping her from making much progress. He

also

> went on to say that he does not know her long term prognosis but

> reminded me that she had been very very sick and had a severe

brain

> injury. He said just take it one day at a time. That is all any

of

> us really can do anyway. No one knows the future. We can plan and

> plan but ultimately we must trust GOD. He holds ALL the future in

> his hands. I know he still has an awesome plan for Hannah. Does

> anyone have experience with infantile spasms ?

>

> Donna (mom to Hannah aka Princess of the Universe)

>

[Guest guest]

Hi Donna.

I don't know anything about them but I wanted to let you know that you are in my

thoughts and prayers!

Brightest Blessings =)

Jenna

duggandonna <donnaduggan@...> wrote: We went to the neurologist today

to get the results of the 4 hour

video EEG that was done last week. I thought I saw 4 small seizures

during this procedure. It turned out that she actually had 18

seizures during the 4 hour period. The neurologist spent an hour

talking with me and is going to try another medicine called Topmax.

He is the doctor who was there the night in June (june 6) when she

was so sick. His heart is tender toward us because he saw

everything we went through in June. He said you know she almost died

several times. I said yes. What else can you say? He is not sure

if the medicine will help or not. He said her seizures are similar

to infantile spasms which are very hard to treat and usually lead to

mental retardation. He said I really do not need to be worried

about her talking and walking. I need to concentrate on the

seizures as they are keeping her from making much progress. He also

went on to say that he does not know her long term prognosis but

reminded me that she had been very very sick and had a severe brain

injury. He said just take it one day at a time. That is all any of

us really can do anyway. No one knows the future. We can plan and

plan but ultimately we must trust GOD. He holds ALL the future in

his hands. I know he still has an awesome plan for Hannah. Does

anyone have experience with infantile spasms ?

Donna (mom to Hannah aka Princess of the Universe)

[Guest guest]

Donna,

There are several things I need to clarify. First, my son's IS happened 16

years ago so even though I still watch out for medical journal papers on this

subject, I would have to say I am not on top of this area completely. Second, I

am not a neurologist nor a doctor, so do NOT do things without consulting with

your doctor first. People in general believe that B6 is harmless since it is a

vitamin and it is supposed to be water soluble. That is not exactly correct. Too

high a dose can result in peripheral nerve damages and that is why it is

important to consult with your daughter's doctors even if it may be just

vitamin. Thirdly, my son went through ACTH treatments 3 times then later on

maintained by using B6 then PLP.

Good luck.

CY

duggandonna <donnaduggan@...> wrote:

We went to the neurologist today to get the results of the 4 hour

video EEG that was done last week. I thought I saw 4 small seizures

during this procedure. It turned out that she actually had 18

seizures during the 4 hour period. The neurologist spent an hour

talking with me and is going to try another medicine called Topmax.

He is the doctor who was there the night in June (june 6) when she

was so sick. His heart is tender toward us because he saw

everything we went through in June. He said you know she almost died

several times. I said yes. What else can you say? He is not sure

if the medicine will help or not. He said her seizures are similar

to infantile spasms which are very hard to treat and usually lead to

mental retardation. He said I really do not need to be worried

about her talking and walking. I need to concentrate on the

seizures as they are keeping her from making much progress. He also

went on to say that he does not know her long term prognosis but

reminded me that she had been very very sick and had a severe brain

injury. He said just take it one day at a time. That is all any of

us really can do anyway. No one knows the future. We can plan and

plan but ultimately we must trust GOD. He holds ALL the future in

his hands. I know he still has an awesome plan for Hannah. Does

anyone have experience with infantile spasms ?

Donna (mom to Hannah aka Princess of the Universe)

---------------------------------

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[Guest guest]

Hi Donna,

Just wanted to comment on felbatol. My son has complex partials that

secondary generalize almost immediately. 2 months ago he was in the hospital

for testing which showed seizure activity at least every 10 seconds all day

long, every day. He's 5 and his sz's have caused him to regress in cognitive

functioning and speech/language to where he's now at about a 3 1/2 year old

level.

Shortly after that testing we opted to put him on felbatol. It was either

that or surgery, which I didn't want to do. Many people fear felbatol. I've

heard of some dr's who will not even prescribe it. My son has gone over 5 weeks

now without a sz and during a followup EEG, the epi came in and said, " this is

the EEG of a normal child " .

We are not celebrating, but we are grateful and taking it one day at a time.

I'm scared of breakthroughs but can't think about that. This is the only sz

control we've ever had.

I need to tell you this though - we see a naturpath who is guiding us in

supplements that are getting my son healthy again. I think both the supplements

and the felbatol are what have lead to this recent control.

Best of luck to you. This is no easy ride.

[Guest guest]

I just posted about my 8 mo. old having seizures. We went back to the

neuologist and she said they are actually Infantile Spasms. Does

anyone have info./experience regarding this? Thanks.