Anyone with seizure experience in babies

[coloradochick]

Lucky good luck to you and your baby girl. I'm so glad the ball is rolling for you and hopefully it won't stop until they find something. Have faith that it will be found and she'll be seizure free. Keep your chin up, she'll need to see your smile through it all.

Our thoughts are with you

Cara

 

[PineBurrowPeeps]

Oh honey, how scared you must be

I am so sorry you are going through this. I can't imagine how helpless you all must feel watching your baby go through that.
PLEASE keep up updated. I'm going to be thinking about you and your family a lot.
Gosh, I hope everything is alright.
My 8 year old son freaks when anything happens to his sisters too. I can picture your older girl

 

[mom'sfolly]

Good luck tomorrow. I'm glad you have your MIL with you; sometimes it helps to have someone who knows what questions to ask and understands the answers.

 

[Wifezilla]

Diet is often used to help control seizures in children or in adults who do not respond to medication....

"Before the invention of seizure medicine, a ketogenic diet (one high in fat and low in carbohydrates) was the only available treatment for people with epilepsy. As medicines were developed, it fell out of favor. But even the array of modern medicines doesn't work for all patients and the Atkins-like ketogenic diet is back in the spotlight.

"A modified version of the high protein Atkins diet is becoming widely used among those dissatisfied with traditional epilepsy medication, according to Dr. Eric Kossoff, a pediatric neurologist at Hopkins. The modified version does not place caps on calories or fluids.

For a study published in January, Kossoff and other researchers took 30 epileptic adults and prescribed a diet loaded with meat, oil, and eggs. Before the protein boost, the patients had an average of 10 seizures per week. After months of tracking, about half of the patients significantly reduced the frequency of their seizures. A follow-up study is under way." (full story)

Recently, the use of the ketogenic diet has been restricted to children. But as people have become dissatisfied with anti-seizure medicine effectiveness and side effects, it is gaining more acceptance. The help from this type of diet to children is well documented.

"Several studies have shown that the ketogenic diet does reduce or prevent seizures in many children whose seizures could not be controlled by medications. Over half of children who go on the diet have at least a 50% reduction in the number of their seizures. Some children, usually 10-15%, even become seizure-free."
http://www.examiner.com/x-798-Denver-LowCarb-Examiner?mode=search&q=epilepsy&Submit.x=0&Submit.y=0

 

[conroy]

I didnt read all of the replies but I had a similar exp with my daughter. When she was about 1 I noticed she would stiffen and space out. She couldn't walk or talk and had a terrible temper. She'd cry for hours on end. I had mentioned it to family memeber sand they blew me off... even my husband until one night in our kitchen she was on my arms and had an "episode" and then he realized. I took her to the doctor and they said to write down when she is having these "episodes " and how long they last. Well by the next evening she had had about 12 and I went to the doctor and said this isn't right. The doctor concurred but said he couldn't get me an appointment with the neurologist for 4 weeks. Well, I tried calling myself and was unsuccessful. The next week we had a stomach virus go through the house and she would seizure and vomit and not come out and I said, "That's it I'm taking her to the ER" My husband had been against this because he didnt want to get a doctor screwing with his kid that didn't know what he was doing. But he knew I was going with or without him. We ended up seeing the exact Neurologist that we wanted to and they confirmed that she infact was having seizures. Tonic Clonic, or grand mal, we were int he hospital for 4 nights and 5 days. There was nothing physically causing the seizures. Which we were happy about she was having misfirings in her brain and they said it was usually genetic. She was on Tegretol for 2 years and then (so far) she has been successfully weened. She is going to be 9 next month. We do have to watch her when puberty starts or if she spikes a high fever or if there is any sort of shock to her system because they could start again. I don't know if I can help but if you want to pm me with any questions, I'll see if I can answer them

 

[ams3651]

i dont have Epilepsy in either side of my sons family but my dad and my sister both had febrile seziure as a baby and our Dr said thats really all it takes to say its an increased risk. My son was also 2 months premie so that may put him at risk too. Glad to hear you are on your way. Take it one day at a time and try not to think bad thoughts. Honestly after we were under the Drs care the seizures became not so scary and he said that happens alot. My mom on the other hand still gets very worked up about them. You have to be calm for them, its scary for them and mom being calm is a big help.

 

[ams3651]

Quote:
this is very helpful to some families but it is very involved, difficult and expensive. But it is an option for some.

 

[PamsPride]

My 4 yo DD has vasal vagal. First episode was when she was 8 months old. Ironic I should find this thread today because she just stoved her fingers on the wall and passed out....it has been a LONG time since she has passed out. Do some research on vasal vagal...if I remember correctly they can check if it is that by pressing on their eyes...it will cause them to pass out. NOT something I have ever tried.
When my DD starts into an episode of vasal vagal we hold her in our arms and dip her upside down real quick causing her to catch her breath. When she has a real bad episode it does resemble a seisure. We find that she does it automatically when she get hurt....drops a can out of the cupboard on her foot...bam out! Trip over a toy...bam out! Now that she is older it is very rare. We found that she did it most often when she was over tired or missed her nap.

I hope you find the answer soon!!

 

[Hangin Wit My Peeps]

My daughter had them as well and she turned blue and it lasted for about a minute or so. She had a total of four of them about once a month the same time of day and the same day in the month. They put her on Phenobarbatol (sp?) and she was on it for almost 2 years. I did some research on the stuff and learned that it can do a lot of damage to a child if on it for long periods of time. She hadn't had any seizures for a year after they put her on it and they did have to up the dosage a few times because she had had another one. I started weaning her off of it slowly and she had never had another (she is now 20). What your daughter is having sounds like something more then just reg seizures. I'm glad they are sending you to a specialist. I know how scary it can be to watch your daughter go through that. I called 911 while it was happening becasue I was 19 and had NEVER seen one before so I thought she was choking! She was a year and 1/2. It's SO scary! My prayers go out to you and please keep us informed on how she does and what's wrong. Just know that you are doing all you can do for her

 

[Wifezilla]

it is very involved, difficult and expensive

Involved? At first. There is a learning curve. Difficult? Nope. Not one bit. Expensive? There is some expense at first, but then it works out to be about the same cost for regular food.

http://www.atkinsforseizures.com/

My typical carb intake is around 40g a day or less without even trying. It's just 2nd nature to me after nearly 2 years.​