Hey all!

[Jeanne28]

My name is Jeanne and I'm 28 years old. I have two sons. Alexander is 4 months old and Maddox will be three years old next month. A few months ago Maddox started having these twitches, myoclonic jerks. He has them a lot and everytime I would see it, I would get this bad feeling. I knew it wasn't right. So, we took him to a neurologist. He had an EEG, which came back abnormal. The dr. said it wasn't just abnormal, it was highly unusual. Whatever that means. The EEG suggests that he has primary (idiopathic) generalized epilepsy with myoclonic seizures. I guess idiopathic just means they have no idea yet what is causing them. The dr. has us lined up to do genetic testing and an MRI. They are also testing him for an enzyme disorder. He actually thinks that none of these things will tell us anything and we just may never know what is causing the epilepsy. That is hard for me to accept. The dr. prescribed keppler for now. I don't know much about it except that it is new and I was hoping that someone could tell me more about it if they have had any experience with it.

My father has epilepsy, but his epilepsy came from having menegitis as a baby. His fever was so high it left scar tissue on his brain. He actually had surgery to remove it by lazor about 10 years ago and he has only had one seizure since.

My father is a very closed off unemotional person. I've always felt that he was cold. He has been a bachelor since my mom left him when I was a baby.

Will my son be like that? I want him to have a normal life. The dr. doesn't think that he will be able to outgrow it. Will he ever be able to drive. I really have a lot of questions. Does anyone have a child his age with epilepsy. I've done research and the children are usually older.

I'm also courious what possiblilites are there for the cause of his epilepsy if it isn't genetic.

He is a very intelligent boy although he has been slow in the language department. He talks a lot, but mostly he repeats things he hears. He has some behavior problems, but not really unusual for his age. He likes to line things up too. He has an obsession with numbers and letters and he repeats words over and over again. He might say sandwich, sandwich, sandwich or one one one one. He tears paper up or books into little pieces. He also has night sweats and is very pale with white hair and eye lashes and brows (looks almost albino, but he is not). We origionally thought he was autistic, but he passed the screening. He is very affectionate most of the time and gives kisses and makes good eye contact. He responds to his name and calls me mommy and his father daddy.

We are still trying to wrap our heads around this any advise or support would be great.

 

[drarvindr]

Dear Jeanne,
First of all , welcome ! :hello:. Sorry to hear about Maddox.Don't freak out too much about his behavior. every child is different , which makes pediatrics the hardest medical science.A normal 3 year old( completed 3 years , not in third year) should be able to:
1)Movement
* Climbs well
* Walks up and down stairs, alternating feet
* Kicks ball
* Runs easily
* Pedals tricycle
* Bends over easily without falling

2)Hand and Finger Skills
* Makes vertical, horizontal and circular strokes with pencil or crayon
* Turns book pages one at a time
* Builds a tower of more than six blocks
* Holds a pencil in writing position
* Screws and unscrews jar lids, nuts and bolts
* Turns rotating handles

3)Language
* Follows a two- or three-component command
* Recognizes and identifies almost all common objects and pictures
* Understands most sentences
* Understands physical relationships ("on," "in," "under")
* Uses four- and five-word sentences
* Can say name, age and sex
* Uses pronouns (I, you, me, we, they) and some plurals (cars, dogs, cats)
* Strangers can understand most of her words

4)Cognitive
* Makes mechanical toys work(jack-in-the-box or spring toys)
* Matches an object in her hand or room to a picture in a book
* Plays make-believe with dolls, animals and people
* Sorts objects by shape and color
* Completes puzzles with three or four pieces
* Understands concept of "two"
Social
* Imitates adults and playmates
* Spontaneously shows affection for familiar playmates
* Can take turns in games
* Understands concept of "mine" and "his/hers"
Emotional
* Expresses affection openly
* Expresses a wide range of emotions
* By 3, separates easily from parents
* Objects to major changes in routine

This is a complete list. It doesn't mean he's abnormal if he cannot do one or two things on this list. If many items are missing from his behavior , you may want to see a pediatrician.As for the drug i think you mean keppra (LEVETIRACETAM). it's pretty good for kids compared to the other medication. Don't worry. I have almost exactly the same diagnosis - juvenile myoclonic epilepsy. it is an idiopathic (amongst doctors we call it idiot-pathic because we're too dumb to figure out the cause) generalised disorder with myoclonic jerks.) . I've turned out ok even if i do say so myself. i drive , i treat people , i read , i play video games .... Don't lose hope.I don't think he should have the same problems as your dad.. Have you considered a metabolic disorder? maybe phenylketonuria considering the whitish hair. Could also be something diet related. what does he eat? if he eats a lot of mentos or minty candy it could be PKU. feel free to ask any questions. we're here for you at CWE

 

[Jeanne28]

I believe he is being tested for PKU. We did a blood and urine sample yesterday that is being sent off. I did do some research on that disorder and it could fit, except he doesn't show any signs of MR. Wouldn't he show signs of that by age 3? I also thought they were supposed to be tested for that as an infant. He doesn't have rough skin and his urine has never really smelled musty. He was very colicky as a baby. Screamed a lot up until 8 months. He was diagnosed with Pyloric stenosis as a 5 week old and had pylorotomy. Can a child have PKU and not be MR as old as he is?

 

[skillefer]

Hi Jeanne! Welcome to CWE. Feel free to ask questions. Right now, you're going through a rough time. The waiting is probably the hardest. Ok...as a person with epilepsy, I'll say that most likely, your child won't end up like his grandfather, unless you raise him to be that way. Also, many of us drive, and have productive careers. It honestly depends on whether or not you can get the seizures under control. If you can, then he should have very few problems, be able to drive, go on to college, etc. Epilepsy is not a death sentence. And how you face it can help determine how your son faces it. What kind of attitude he has about it.....So please don't panic or freak out too much.

 

[sixpack]

hi and welcome,

wow you are being put through it aren't you? I understand your fear. I have a disabled daughter and feel like a whacked out mom!

There can be many reasons for seizures. Genetics is only one. Your father's case is definitely not the reason in your son's case. I don't see any connection from what you've said to think so.

I think it is a very good thing to get an MRI. You may well find the cause there. Many times you can solve seizure issues. So take it one step at a time. The doc on here has helped me a good bit. I think he's made some very good points too.:clap:

I don't know about the PKU test. You are right that it's done on newborns and I think it only needs to be done once. so don't know how to advise there.

Reading your son's list of behaviors and habits does remind of autism, but there maybe other reasons for that too. Have you looked into the early intervention programs that public schools have in all 50 states? Each state has their own ways of doing things but that's a great resource. I've used it for 3 of my 6 kids. My eldest is severely disabled so her issues are apparent, but two of my girls also benefited. What you do is call your school district's special ed or early intervention dept. Tell them you issues and ask to have your son screened. School's test for language, motor, speech, cognitive, and hearing delays. If your son shows a delay in one or all areas, you can receive services at no cost to you (well you've paid your taxes). Your child could receive speech or ot/pt or even qualify for preschool. It really helps. Often the service comes straight to your home. My youngest had articulation probs so got her tested and she received speech for a year. We got her all fixed up before she ever went to school.:rock: It's really a great service. So that might be a great resource for you.

(by the by I posted earlier and deleted it cuz I looked back at it and it sounded a little snotty to me:bigmouth:. Not my intention so........

I hope you find out your son's issue very soon and that you can fix him up right as rain.

 

[Bernard]

Hi Jeanne, welcome to the forum. :hello:

... He actually thinks that none of these things will tell us anything and we just may never know what is causing the epilepsy.

There are a *lot* of people on that boat (never knowing what caused their epilepsy).

The dr. prescribed keppler for now. I don't know much about it except that it is new and I was hoping that someone could tell me more about it if they have had any experience with it.

Keppra seems to be fairly effective at controlling seizures, but it is infamous for "Kepprage" - a side effect that increases moodiness and angry outbursts. Some people find that vitamin B6 helps curb the side effect (but too much can interfere with the drug).

Keppra info from drugs.com

My father is a very closed off unemotional person. I've always felt that he was cold. He has been a bachelor since my mom left him when I was a baby.

Will my son be like that?

I don't think it's pre-ordained. Give him love and guidance and the freedom to grow and he will likely do just fine.

I want him to have a normal life. The dr. doesn't think that he will be able to outgrow it.

There are more options for treating epilepsy all the time. Don't give up hope.

... He also has night sweats ...

http://www.coping-with-epilepsy.com/forums/f23/night-sweats-sleep-apnea-799/ - a sleep study might be a good idea.

 

[seizures4ever]

Hi Jeanne,

I will be keeping your family, and most especially your baby, in my thoughts and prayers.

Welcome to the site, I am so glad you joined us, but I am sorry it is because of such troubles. Please keep us updated.

All hugs. -Julie

 

[drarvindr]

Here's the thing , jeanne. The mental retardation in PKU isn't be-all and end-all. it could be mild moderae , severe depending on the diet you've had him on. If he's just started developing a liking for candy (artificial sweeteners are the biggest problem in PKu pts.) then you've got a possible culprit. I've provided you a list of milestones to use for screening out MR. if you feel that several milestones are lagging behind , then take him to a pediatrician for a full work up.
I don't think the pylorotomy is relevant. Ramstedt's pylorotomy is one of the safest surgeries today , and has few complications. Recent studies have put that there are no long term complications to a ramstedt when one was a baby , so i don't think that's the answer.

We origionally thought he was autistic, but he passed the screening. He is very affectionate most of the time and gives kisses and makes good eye contact. He responds to his name and calls me mommy and his father daddy.

doesn't sound like a mentally disabled child to me. Let me know what the PKU test says.

 

[Jeanne28]

Thanks Everyone! I appreciate all the advise and support.

Sixpack: ha ha, I didn't think it was snotty, no need to worry.

Drarvindr: I did go through your checklist and meets most if not all of the milestones. The only area he isn't 100% on is language. However, he meets most of that criteria too. I'm thinking maybe we should have someone come in and work with him on speech a little. I guess that is why I was confused about the PKU. You are right though about the diet, we are a very organic family meaning we only eat organic foods, no artificial sweetners or candy or soda of any kind. He does eat a lot of protein. The only difference lately is that he has been eating eggs for breakfast. I don't give him candy. He did get into some gum several months ago. I will let you know about the PKU test, he had the bloodwork done on wednesday, so I'm not sure when we will hear back about it. Maybe early next week. I am going to call today though to check just in case.

I'm starting him on Keppra tomorrow. He has had a cough for a long time now off and on, so I'm taking him to his ped. today. Is it okay for him to take antibiotics with the keppra?

 

[sixpack]

yes it's fine for keppra and antibiotics. Well my Lindsay takes 3 anti-conv, one being keppra. She's had amoxicillin several times with that med. Another antibiotic as well but it's been a while so I don't remember that one.

Just make sure you tell the doc his meds though

good glad you didn't think it was snotty. lol

 

[drarvindr]

btw are those your kids in the avatar ? very cute