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BeckyLee

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I'm new to all of this and dont really understand everything that i going on... here's the story:

My 9 month old son was diagnosed with epilepsy when he was about 4 months old. His first seizure was a focal seizure in his right arm, very short, about 30 seconds and then his arm was completly limp. Not knowing what was going on, we took him to the ER. The Dr. there said that as far as he was concerned he didnt know if it was a focal seizure (later the neurologist confirmed it was) and that we could do all of the tests to see but that thats a lot to put a 4 month old through when we werent sure if it was just a pinched nerve or something like that. We didnt get the tests done but ended up back in the ER the next evening. He was having a full grand-mal. This seizure lasted 2 and 1/2 hours and with a lot of meds ended up being able to stop it. They were ready to intibate him (I think thats right) when he finally started to stop and he was airlifted down to a children's hospital where he was in ICU for 3 days and in the hospital for a week. They ran all of the tests and everything came back normal. They put him on phenobarbatol (spelling) and sent us home. Since then hes probably had 12 or so seizures. All of them gand-mal, none that stop on their own. They also sent us home with Diastat (which from what I understand is rectal valume). Every seizure that he has had since stops after we give him the diastat but never on its own. They now think because of the way his seizures start (always a focal seizure in the right arm and generalize from there) that he may have a malformation in the left hemisphere that may not have showed up on the first set of tests because his brain wasnt as developed yet. We will have more tests done soon and until then its just a wait, watch, and record everything time.
 
Hi BeckyLee

It sounds like you are going through a really rough time at the moment, hang in there, hopefully you will see some light at the end of the tunnel soon.

You have come to the right place for support and information, I personally don't have tonic clonics (Grand mal), I have absences, but I am sure the others will be along shortly who are more knowledgable on these.

Welcome to CWE

Take care

The Crazy Monkey
 
Oh, BeckyLee

Big (((HUGS))). You all have been through so much in such a short period of time! I hope you get answers soon. Do the doctors know how long you will have to wait for the tests? An MRI should be able to give them a quick insight into whether or not there are any structural abnormalities. I WELCOME you to our sight. Feel free to ask questions, vent, and share your story.

Take care. God Bless. -Julie
 
Wow- that must be awful to have to go through as a parent!! I hope everything turns out well and that things are taken care of soon. Best of luck to you and your little one!
 
It sounds like you have an excellent grip on his condition and his treatment. I've heard that once one seizure starts, then it takes a while for subsequent seizures to stop. It takes a bit of patience.

It sounds like your kid has had a rough time, but he's starting to come around. Personally, my seizures are probably very similar to his 'cause I'd have exhaustion after one and my right arm would feel some pain afterwards.

Kids are incredibly resilent. Welcome!
 
Hi BeckyLee ( I have a friend with that name)

I am so sorry that you are having to go through this with your little guy. Very rough.
My daughter was 14 when her began, and they started as simple partials and then generalized. My daughter does have a heterotopia on her right frontal lobe.

However, meds made hers much worse. So she is med free now and nutritional choices, and vitamins and minerals are helping control them. We have just found that she has a blood glucose issue.

In little ones a lack of Vit B6 can cause seizures, as can allergies to certain foods.

Keep searching for the cause. Don't let them just throw drugs at you and say that is all there is. They are certainly helpful in an emergency, but keep a journal and maybe you will see a cause.
 
Hi BeckyLee, welcome to the forum. :hello:

I'm so sorry to hear about your son's status seizures. It's good to hear that he responds to the Diastat though! Diastat has never worked for my wife when she has had status seizure clusters.

I'm wishing you and your son all the best.
 
:hello: Becky Lee,

Welcome to CWE, and so sorry you are having
to undergo all that you are going through at this
with a precious little one. We do have a padded
room where you can yell, scream, vent, and unleash
it all if you want. We are here to listen as well as
to give you (((( hugs )))). Much prayers and
thoughts will continue, and please do visit the
link that Bernard has provided to you and here is
wishing you and your little one and your family
all the best during this rough times!
 
I am so sorry you have to go through such scary things with your little guy. Seeing your child go through all of this is heartbreaking especially when you don't have any real answers.

I do understand what you are going through. My daughter (who is now 21) was diagnosed with unilateral schizencephaly--a serious brain malformation, when she was 4mos old. Her's was dx'd with a CTscan. We were warned that she'd have seizures, but her's didn't start until she was 13.

It seems to me that the doctors will or should give your son an MRI. That will show any significant malformations. I assume he's had an EEG. However often EEG's show normal even when seizure activity is present.

This community is very supportive. Hang around and I'm sure you'll get a lot of good information.
 
Welcome BeckyLee :hello: I can only imagine what you must be going through. It's difficult to watch my 7 year old seize and scary being med-flighted(experienced this with my son 2 times now). It must be even harder to be going through epilepsy with an infant.

We're now controlling my son's seizures with natural alternatives such as diet, proper rest, and cranial therapy. He's med free. I do keep rectal diastat on hand for peace of mind, but we've not had to use it. My son had a stroke while developing in the womb, effecting his brain on the left side. This is what caused his epilepsy.

Hopefully, the doctors will be able to find a cause that will relieve some of the haunting questions you must have. I recommend doing as Robin suggested and keeping a journal, you may find the cause long before the tests can be run again. Also, medications treat the symptoms, but they don't provide the cure or treat the cause. If you know the cause and have researched alternative methods (which usually treat the cause, not the symptom), you are well equipped to help you precious son develop into a perfectly healthy child.

Good luck :)
 
Thank you so much!!!

Thank you so much for all of the welcomes and information. I have just a few questions if anyone may have answers. My first question is, could I still do something about his diet if he's on formula? My second question, has anyone ever tried chiropractic care for seizures? It was suggested to me and I dont know how I feel about it.
 
He did go through testing at 4 months but the dr. said sometimes their brains arent developed enough to show the small malformations.
 
Hi BeckyLee! Welcome to CWE. :) As you can see, a good group of people.... I'm sorry about your child. I have a question, is there any particular reason that your son is on formula? The reason I ask is that perhaps he's allergic or not processing one of the ingredients well.
 
IF my daughter started having seizures at a young age, and was just beginning with food experimentation.
IF I knew then what I know now about how diet (I prefer the word nutrition) plays a role in neurological health , or at least gave it some thought at the time

I WOULD have my child tested for food allergies
I WOULD most definitely remove the foods that are known to be allergic, even if the tests were not conclusive. Removing them would prove whether or not my child was sensitive to the foods.
I WOULD find alternatives to formula
I WOULD do research on vaccinations, their role in neuro development, and make a point not to let any with mercury be injected into my child. I would also be extremely cautious about the number given, and perhaps reduce that or spread out the schedule.

:soap:
 
RobinN said:
IF my daughter started having seizures at a young age, and was just beginning with food experimentation.
IF I knew then what I know now about how diet (I prefer the word nutrition) plays a role in neurological health , or at least gave it some thought at the time

I WOULD have my child tested for food allergies
I WOULD most definitely remove the foods that are known to be allergic, even if the tests were not conclusive. Removing them would prove whether or not my child was sensitive to the foods.
I WOULD find alternatives to formula
I WOULD do research on vaccinations, their role in neuro development, and make a point not to let any with mercury be injected into my child. I would also be extremely cautious about the number given, and perhaps reduce that or spread out the schedule.

:soap:
Click to expand...

:clap::agree::clap:
 
Well.... he was breast fed until about a month and a halfago. Between when his seizures started (When he was just over 4 months) and about a month and a half ago, he hadnt gained any weight at all (a few ounces at the most) with me going back to work and still trying to finish my college career, we switch to formula. It may just be age aslo but until about a month and a half ago, he was quite behind developmentally and since he has been on formula he has gained almost 3 pounds (hes still between the 10th and 25th percentile, but its far better than the 3rd percentile) and is almost crawling, he is doing so great!!! I guess my question is if there wasnt a change in his diet when the seizures started is there still a chance that nutrition could have something to do with it?
 
Even if the seizures did not start the day you switched to formula, it could still be diet related. It can take a little time for whatever is causing the seizure to build up in his body and trigger the seizures.
 
The seizures started before he was experiencing with solids or switched to formula. He started having seizures at 4 months, we started cereal at 6 months, and switched to formula at about 8 months. I will look into it though thansk for the input.... just lots of questions!!!

And its amazing that RobinN mentioned the immunizations. He ALWAYS has a cluster of seizures after his immunizations. His first set, nothing happened, he was 2 months old, but every shot there after he has (we think because of his fevers, but we're not quite sure). He has the same reaction wheather its one at a time or many. We have a really hard time keeping his fevers down after being immunized. No matter how deligent we are about tylenol or how we dress him, or how many luke warm baths we take.
 
You also have to take into account what you have going on in your body that could have been passed through breast milk to him.

Any dental work? Any flu shots? So many things to consider.

I would research vaccinations and your alternatives to that.
Are you aware that they are still putting mercury into some immunizations as a preservative? and many other curious ingredients... You need to be informed. There is a lot of studies being done in this area, and when the past president of the NIH claims that there is a connection between vaccinations and autism I straighten up and listen.
(I have a child on the spectrum and another with seizures)

Just my opinion folks.
 
Hmmm...could be that his system can't handle the multiple vaccinations given at one time. I know that I've read other medical sites that suggest that parents go back for seperate vaccinations instead of having them clumped into one like the MMR.

As to the breastfeeding/formula...have you considered having a food allergy test done on your infant? They can do it via blood test. The reason I ask is that, if your child does have an allergy, and you were consuming the thing that he's allergic to while breastfeeding, that might explain the failure to gain weight....Also, if you still would rather do formula, check and see what the ingredients are on the brand you buy and switch to one that has different ingredients. Most common food allergies are cow's milk, wheat, and eggs...so check the ingredients..
 
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