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Possible seizures, loss of head control at night, any1 else?
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Liba




 
 
    
 

Post Thu, Sep 20 2012, 5:12 pm
We have a peer support group for parents of children with special needs (I am NOT suggesting that your child has special needs!!) that meets in Ramat Eshkol. About half of the parents have children who have siezures. One has children with a genetic siezure disorder who with the proper medication and diet are doing wonderfully. One is in a regular Beis Yaakov second grade class doing well accademically.

People most certainly can sleep through siezures.
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vintagebknyc




 
 
    
 

Post Thu, Sep 20 2012, 11:21 pm
OP, I have a seizure disorder and I only wish I were unconscious when they happened. not impossible they have happened in my sleep. though I'm so well medicated now I haven't had a problem in years, b'h
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amother


 

Post Fri, Sep 21 2012, 2:27 am
Liba wrote:
We have a peer support group for parents of children with special needs (I am NOT suggesting that your child has special needs!!) that meets in Ramat Eshkol. About half of the parents have children who have siezures. One has children with a genetic siezure disorder who with the proper medication and diet are doing wonderfully. One is in a regular Beis Yaakov second grade class doing well accademically.

People most certainly can sleep through siezures.


Good to know. If it comes to it, I will get the contact info from you. THank you

Are seizures considered special needs? Cuz first you say that there are moms of kdis with seizures but then you say theay are doing fine (the kids)
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amother


 

Post Fri, Sep 21 2012, 2:28 am
vintagebknyc wrote:
OP, I have a seizure disorder and I only wish I were unconscious when they happened. not impossible they have happened in my sleep. though I'm so well medicated now I haven't had a problem in years, b'h


HUGS!

Do you mind telling me what a seizure feels like so I can understand my baby better?
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Liba




 
 
    
 

Post Fri, Sep 21 2012, 7:08 am
Siezures often go hand in hand with other special needs like cerebral palsey or chromosomal disorders. It is very possible to have siezures and no other special needs, but other special needs often lead to a predesposition to/go hand and hand with siezures.

The mother who has children with siezure disorders also has another child with special needs, which is why she initially joined our group, but in reality she is dealing with many of the same issues with her children with siezure disorders, school placement issues, they both went to gan safa (pre-school for children with language issues) because they had delays caused by the siezures being out of control (it took a while to get them stabilized because it wasn't a simply epilepsy and standard medications didn't work) and bituach leumi issues. We help eachother navigate Israeli beuocracy as much as we can.

The support we give isn't just about the day to day issues of raising children with special needs, but also for the beuocratic things and school placement issues which are the simialar for parents of children with delays or medical issues no matter what they are.

You would be welcome to join our group if you were comfortable, I just didn't want you to think that I was implying that your child would have other issues/special needs. Smile
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cbsmommy




 
 
    
 

Post Fri, Sep 21 2012, 9:06 am
In case anyone in the US is reading and wondering - a seizure disorder allows a child to receive certain special "treatment" under a 504 plan (the same law that allows a child with asthma to carry an inhaler). An IEP (Individual education plan) or an IFSP (Individual family service plan - children 0-3) is a legally binding document between a school and a family that allows a child to receive special education services. While many children with seizure disorders have an IEP or IFSP, to my knowledge, the diagnosis of seizures does not lead to an automatic IEP.

That being said, many children who experience seizures have an accompanying delay/difference (in reading, writing, math, symbolic processing) and the diagnosis of a learning disability provides an IEP.
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cbsmommy




 
 
    
 

Post Fri, Sep 21 2012, 9:07 am
And its been awhile since I've attended an IEP meeting, so someone please correct me if I'm wrong.
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vintagebknyc




 
 
    
 

Post Fri, Sep 21 2012, 9:26 am
amother wrote:
vintagebknyc wrote:
OP, I have a seizure disorder and I only wish I were unconscious when they happened. not impossible they have happened in my sleep. though I'm so well medicated now I haven't had a problem in years, b'h


HUGS!

Do you mind telling me what a seizure feels like so I can understand my baby better?


amother, all seizures are different. sometimes I'm just staring into space. sometimes I feel as though I'm dreaming but I'm not. it's hard to explain. your pediatrician is wrong, and you need to find a new peds neurologist asap. I don't mean to sound harsh, but seizures can be very physically/neurologically harmful!
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amother


 

Post Fri, Oct 12 2012, 3:31 am
so... He had another incident. After a 5 week break. I took him in for an EEG the next morning. The EEG was 'suspicious'. I feel like if he was having typical seizures, he would be considered epileptic or whatever, but since they don't look regular, they don't know what to tell me. We are going to do an overnight 48 hour EEG. To me it seems a bit superfluous because I don't think they will see anything unless he has an incident, but of course we will go ahead with it. We have to decide where to do it and want to go to another doctor too. Anyone ever did an overnight? Any tips? What should I expect? If we do it out of Yerushalaim, I will be there alone because my husband will be home with the other kids. That doesn't thrill me, but I want to be in the best place for my baby...

Ouch, this hurts!
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amother


 

Post Sun, Oct 14 2012, 10:03 am
A new amother with seizure disorder here.

First I want to tell you that the ketonic diet (almost no carbs, high fat content) has been scientifically proven to reduce seizures in many children. I am not an alternative medicine gal, so I carefully researched peer reviewed research from well known hospitals before starting this diet. Although I'm an adult, I can't tell you how much the ketogenic diet lowered my seizure count. Over 90% possibly.

As for the 48 hour test, your son will have a seizure monitor attached to his head through the typical EEG materials and will have a cap to prevent him pulling it off. It will monitor minor activity as well as major seizures. In my case I had 72 mini-seizures within 3 days ( before my diet). It was very useful.
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vintagebknyc




 
 
    
 

Post Sun, Oct 14 2012, 5:04 pm
amother wrote:
A new amother with seizure disorder here.

First I want to tell you that the ketonic diet (almost no carbs, high fat content) has been scientifically proven to reduce seizures in many children. I am not an alternative medicine gal, so I carefully researched peer reviewed research from well known hospitals before starting this diet. Although I'm an adult, I can't tell you how much the ketogenic diet lowered my seizure count. Over 90% possibly.

As for the 48 hour test, your son will have a seizure monitor attached to his head through the typical EEG materials and will have a cap to prevent him pulling it off. It will monitor minor activity as well as major seizures. In my case I had 72 mini-seizures within 3 days ( before my diet). It was very useful.


it's so amazing to be reminded that this diet works, and that you have been able to follow it. I've not been able, and I know may more who have also not been able to . so glad you've found this to help you!
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amother


 

Post Mon, Oct 22 2012, 9:26 pm
I am so sorry for you and your baby. it definitly sounds like seizures. I am not a health professional but it even sounds like he is having them in his sleep and crying out at the end and you can catching him post seizure so you only see the mild ending (head back, screaming, etc).

I hope you can figure this out soon. Seizures are absolutely terrifying. please also consider talking to a friend, family member, husband every step of the way. you as the mother may find you are experiancing post traumatic stress after watching your baby go through a seizure.

r''s
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managingmomof3




 
 
    
 

Post Mon, Oct 22 2012, 10:32 pm
I rarely write replies on IMA mother..only because I'm usually in a relaxing mood and not interested in writing....but I must tell you my DD age 8 came home last year from school describing a seizure incident! There were 2 other incidents earlier on in the month at home early early morning that we didnt connect to seizures.
One night we heard screaming rather shrieking. My daughter was a wreck! We were terrified!! She was groggy and limp!
Another time I was right next to her room .. I heard tossing rapidly! Gasping for her breath..her arms flailing about ..it was a wild sight..and then came the screaming I was petrified...
We went to a neurologist ....we did the EEG ...he said she would mature out if it..when she hits puberty..basically a few receptors to the brain were "damaged" but when she would hit puberty the brain reverts to using the other side of the brain and the "damaged" receptors would no longer be of use.. he advised meds.. I said no and ran to alternative medicine..
after trial and error for a few months.. al tiftach peh... I say no more...
'we noticed when ever she had a late night ..she was bound to get a seizure.. we were given remedies...
now we are cautious... yet thankful to Hashem for alternative medicine and all His brachos in making the homeopath Simon Taffler the shliach for her refuah! if you want his number or info I will pass it along with pleasure...
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amother


 

Post Sat, Nov 17 2012, 9:59 pm
Your child is 1 1/2... Typical age for vaccinations...do you recall if the seizures started soon after being vaccinated, because apparently there are children who get seizure disorders a s part of a vaccine injury. Not saying this happened, but I would consider it.
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amother


 

Post Sun, Nov 18 2012, 2:07 am
Another amother with kids with seizures! At 3.5 month old my second baby suddenly started suffering full blown seizures! as in, too many to count in 1 day!...... Body shaking vigorously.......turning blue......!! They never figured out what it was, but got it "under control" with medication. After 2 years of not increasing the dose, or another incident, they slowly weaned him off the meds, and b"h its been almost 5 years and he's all fine and healthy!
And this all sounds so simple ......... Only a mother who went through this knows what it means! Its extremely traumatic! Exhausting! Terrifying!
When I had my next baby, naturally, I was on high alert, terrified! At 1 point she had this jerking of her legs in her sleep, the dr said its nothing, some babies do that, its not a seizure! Although I knew it wasn't cause I know what a seizure is! it just made me so nervous, it was sort of like a hiccup, every 3 seconds a jerk and non stop for a while!
Then came baby #4 I breathed a sigh of relief when that 3.5 month mark passed! Little did I now........! At 9 months old, she fell and acted "weird".....to make a long story short, she fell because of the seizure, not the other way around! She had those "staring into space" incidents, not that often, "only" a few times a day! she would just stare, get limp, and then become extremely tired! and like my son, they got her onto meds, cause they couldn't figure out the cause! And b"h its almost 2 years now since we've started the meds, she hasn't had any incidents since! we'll be starting to wean her off soon, and be"h she'll be ok, like my son!
I'm terrified of having more kids! Its just too much for a mother to watch! Hopefully I won't ever have to experience it again!

Op, being that this is the kind of response u were hoping to get, that there actually IS hope of outgrowing it, let me know if u want to pm me, believe me, I know what ur going through, I just wish I had s/o to talk to when I was going through it!
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amother


 

Post Mon, Nov 26 2012, 1:54 pm
Thanks everyone for responding again. I dont really get on here as much as I want.

We hadn't had an incident in about 6-8 weeks and I was starting to think he outgrew it, but he had one tonight. And I think I saw the seizure. He had rhythmic kicking and then he turned to his side and jerked around. I was able to video it.

We are going to a top specialist hopefully soon, Dr. Bruria Ben Zeev.

Will cheder want him? Will they decide he is special needs even though he isnt?

SOOOOO crazy.

Last amother, thank you so much! I could totally relate to tyour feelings. We can't pm as two amothers, I wonder how else we can be in touch...
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amother


 

Post Mon, Nov 26 2012, 1:56 pm
Quote:
I am so sorry for you and your baby. it definitly sounds like seizures. I am not a health professional but it even sounds like he is having them in his sleep and crying out at the end and you can catching him post seizure so you only see the mild ending (head back, screaming, etc).


can he cry through a seizure?
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amother


 

Post Mon, Nov 26 2012, 1:57 pm
Quote:
I rarely write replies on IMA mother..only because I'm usually in a relaxing mood and not interested in writing....but I must tell you my DD age 8 came home last year from school describing a seizure incident! There were 2 other incidents earlier on in the month at home early early morning that we didnt connect to seizures.
One night we heard screaming rather shrieking. My daughter was a wreck! We were terrified!! She was groggy and limp!
Another time I was right next to her room .. I heard tossing rapidly! Gasping for her breath..her arms flailing about ..it was a wild sight..and then came the screaming I was petrified...
We went to a neurologist ....we did the EEG ...he said she would mature out if it..when she hits puberty..basically a few receptors to the brain were "damaged" but when she would hit puberty the brain reverts to using the other side of the brain and the "damaged" receptors would no longer be of use.. he advised meds.. I said no and ran to alternative medicine..
after trial and error for a few months.. al tiftach peh... I say no more...
'we noticed when ever she had a late night ..she was bound to get a seizure.. we were given remedies...
now we are cautious... yet thankful to Hashem for alternative medicine and all His brachos in making the homeopath Simon Taffler the shliach for her refuah! if you want his number or info I will pass it along with pleasure...


Wow! o scary. what is the alternative medicine?
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amother


 

Post Mon, Nov 26 2012, 1:59 pm
Quote:
Your child is 1 1/2... Typical age for vaccinations...do you recall if the seizures started soon after being vaccinated, because apparently there are children who get seizure disorders a s part of a vaccine injury. Not saying this happened, but I would consider it.


which vaccines would cause s/th like that?

the first (well, second, but the first in this series) time it happened, was the night after a vaccine, but they dont think it was caused by the vaccines
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amother


 

Post Mon, Nov 26 2012, 2:37 pm
Another amother here with a similar story - first seizure of DS was the night after of the day he got shots - he was 7 weeks old. His seizures were also the screaming type in the middle of the night, about 3 or 4 hours after he went to sleep. The first time he turned blue. Hi slegs always got bright red, while the rest of his body was pale. This happened 4 or 5 times in his first year of life, The Dr.'s said to ignore it. A year went by with nothing, anfd then it happened again. This time I demanded more follow up. His EEG came back abnormal. We went to a neurologist, and had a 24 hour video eeg in the hospital. No seizures were recorded in the hospital. It has been 10 months now with no seizures that I am seeing - Thank You Hashem! He is on no medication B"H, because his seizures are infrequent. The Dr. feels that he will outgrow epilepsy. BTW - he also has asthma and a small congeintal heart defect.

If you want me to share more information, or have any questions, let me know.
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