Hi, I was reading a post that LisaGuthrie had typed to someone else. And I KNOW exactly how she is feeling.

My daughter is 7 now. We noticed speech delays when she was little. We didn't know at the time what the cause was, and we did all the testing that we could think of. Hearing, ENT's, the whole thing. She had these little "quirks" but I thought they were just her personality coming out. Little did I know that these were seizures and how my life would change.

I was wondering if there were others out there whose children are having delays due to "E", and what you are doing about it. I held Tiffani back this year in 1st grade again, and she is an inclusion student with modified work. It has been a long haul so far, and I dread to think how much harder it is going to be for her.

Lisa...does your little guy get any kind of services now to help him? When Tiff was little we had a speech therapist and a development specialist that came to my house twice a week, each, to work with her. And that has continued with her in school.

Lindy

Hi Lindy,

Yes, Jake is getting lots of help. He sees a PT, OT and ST an hour each - each week - insurance co. just loves us... http://www.healthboards.com/ubb/wink.gifNOT http://www.healthboards.com/ubb/wink.gif We were having it done at home to start with, but just couldn't see any real progress, they didn't explain things to us well etc.

We recently changed him over to All Childrens and in just 2 weeks we've seen much improvement. They've explained what Sensory Intergration Dysfunction is and how it effects development.

I wish I had known about this when Jenny was little. I'm reading "The Out-of-Sync Child" and I really see both of them. Jenny spent nearly 2 years in speech therapy. You should read this book if you haven't already. It's helped me so much understand their delays and how the nerves system and brain all work as a team and what happens when they don't.

Lindy, never beat yourself up about not seeing Tiff's issues sooner. Jenny was 14 before we knew for sure. So you're one up on my there lady. We're all doing everything we can to give our kids the best head start possable. I always just said the Jenny was my Wild Child. She was my Inner-Child incarnate! With Jake, well it's pretty hard to miss your baby turning blue on a regular basis http://www.healthboards.com/ubb/wink.gif

Need to scoot. ((((HUGS))))

Love and light

Lisa and kids

Hi - our Rebecca is now 18 and has global developmental delay - caused by her seizures.diagnosed with Lennox Gastaut as an infant (first with infantile spasms)....she functions at @age 4.......it was always a "wait and see what happens" kind of way for our family. The cause of her seizures are unknown and treatments have been unsuccessful......we love her to pieces, but the journey has been huge..........wishing you all the best.......Paula

Hi,
I to have a 7 yr old with E. My husband and I started to notice differences in him around the age of two. We could not quite put our finger on exactlyt what it was. We would talk to the pediatrician about it but were always told "he's still in the low end of normal" or "kids develope at different rates". Then when he was four he "passed out" out of the blue. An EEG was done and that was the beginning of our E journey. Three years into it and we are still frustrated and confused as to what is actually happening. We will be seeing our 5th pediatric neurologist in January and our son is scheduled for his first VEEG next Wednesday. I Pray this provides some more answers.
I'm also reading "The Out of Synch Child" by Carol Kranowitz and also recommend (if you haven't read it already) "Seizures and Epilepsy in Childhood" by John Freeman. Both have been very helpful.
Our son does receive occupational therapy, physical therapy, speech therapy-for sensory processing, memmory, following directions, etc... rather than actual speech issues. He also has adaptive PE twice a week. All of these are provided through the school. We know they are helping him, but at this point, it is not enough. We are schedules for an IEP (individual education plan) with the school this Monday. We have had several IEP's to date, but this one is to address the possibility of our son having an aid in the classroom. I don't know if you have ever had an IEP for your daughter, but these meetings can be intense to say the least. There are usually 8-12 people there, not including myself and my husband. Everyone from the principal, school psychologist, therapists, teacher, program specialist, etc...
So far, we have not had to hold our son back a grade, but he is only in first grade. We did wait an additional year to begin kindergarten. The learning issues we are experiencing are things like getting him to stay on task, attention problems, being able to follow simple directions. He also has some gross/fine motor issues. He falls out of his chair frequently, drops his pencil/crayon, has difficulty coloring/cutting. He is able to do what he is asked to do, it just takes him SOOOO much longer than the other kids. And he needs constant redirection from the teacher to complete any given task. If he feels he is falling behind, he becomes very upset and then it is extremely difficult to get him to complete his work. He is very emotional, cries easily. I think he feels overwhelmed by school and the pace of first grade. Especially since he requires so much additional help. Help that the teacher is not able to always give at the time he needs it. She has 19 other kids after all. One of the truly frustrating parts in this is convincing the school that he really does need this help. They have run countless tests on him, all coming back in the low-normal, & normal ranges. But as the therapist and teachers say, none of the test reflect how long and how difficult it was for him to complete them. When you have a child that on paper tests normally, they can't diagnose him with a learning disability. We are fighting this. If his epilepsy is causing him to zone out, even for a second or two, it greatly affects his day and ability to stay on task.
We have also consulted with a neuropychologist and are looking into having our son tested. A neuropsychologist testings go way beyond what our school district can provide. We hope this can give us a more detailed picture of what type of help he needs. I think it goes much deeper than what the school can address. This will be a battle with our insurance company, I'm sure.
Well, I hope I've given you some helpful information here. I know I can ramble on. I hope you are able to find the answers you need for your daughter. It's not an easy road. Let me know if I can help any further.
Take Care,
Cris

Thanks for you replies. I have been doing this about as long as you Cris...Tiff is 7, and we didn't know until she was 4 either!

You have made me feel better. She has had a rough week, and I guess her first few weeks of school were so successful that I was thinking maybe we were over the hump. Then she brings home a test with 35% right, after a few weeks of 100%!!! I should have known better.

She gets resource twice a week, and an aide comes in for a 1/2 hour a day to work with her during math time. That all helps out tremendously. We are taking her in for a 24 hour EEG next month, and then off to see a psychoneurologist ourselves. Hopefully they can tell us more than the school has.

Cris...let me give you a little advice as far as IEP's go. To make it easier for you, tell them that you want ALL reports one week BEFORE your IEP. I learned this the hard way, but it is your right, and it will help so much. I remember going into these meetings and coming out feeling like someone had just beaten the crap out of me! Her last IEP, I asked for the reports ahead of time...I went in with things highlighted, knowing what to ask...it was so much better!

If you are having trouble convincing them you want an aide for you child, tell them that you don't want him to be a problem for the other kids in the class. How does the teacher feel about this? If she thinks it is needed, ask her to say something about it too. If you have any parents you are close enough to, get their opinion. My daughter was in a class with a Down's Syndrome boy. They were fighting his mom on him having a full time aide. So I told her that my biggest problem, as another parent, was that if the teacher was having to deal with him...the other kids were not going to get what they needed. That helped her a lot to get the aide time.

Don't mean to ramble, but I am an inclusion aide, and I work one on one with a child. I also work at the same school my daughter goes to. So I have learned some of the in's and out's of special ed and parents rights! http://www.healthboards.com/ubb/smile.gif Funny how it seems clearer when I say all this to you.....now if I can just get it straight in my mind for my own daughter!! lol lol lol

Thanks Lisa and Cris!!
http://www.healthboards.com/ubb/smile.gif http://www.healthboards.com/ubb/smile.gif

Lindy

Hi Lindy,
So nice to talk to someone who is experiencing the same concerns/questions we are. Thank you so much for your insight regarding IEP's. You have obviously been through a few of those. Unfortunately mine is this Monday, not enough time to request the reports ahead of time. But I'll remember that in the future. My son's teacher is the one who brought up the possibility of an aide in the classroom. When she went to the school regarding this, she was told that was not possible because of his test scores. She told me this in confidence and that if I approach the school regarding this issue, often times parents get a different response. I do worry about how having an aide will affect my son. I don't want him to feel "different" or to be teased. I'm hoping the aide will be in the classroom and help him as needed, but not neccessarily have to sit right next to him during the entire day.

I would love to stay in touch and hear how your VEEG goes next month and your consultation with the neuropsychologist. It helps to share info and insight. It is so difficult to talk to my friends about this. They all care so much, but it is just so complicated. One friend said she had seen a whole program about epilepsy and why can't they just cut out that area of his brain where the epilepsy is happening? I just don't know how the respond to a question like that! I think I said something like that was a last resort and only used for very severe cases. Often times people see a program and how one method of treatment worked, them lump it all together with anyone with epilepsy. Because I can't explain everything I have learned about his epilepsy, I end up feeling as if they somehow feel I'm just not doing enough. Or that there are "cures" available that they want to tell me about. While at our son's soccer game last weekend, my husband was talking with another mom who had a friend with E. She told him that her friend takes this certain medication and that it takes care of the seizures and he is perfectly fine. I know people mean well and it's my own "mother bear" instinct coming out, but I want to scream "Don't you think we are doing everything we can to help our son? This is not a simple fix, take a pill, seizures gone, normal life". OK, I'll step down from my soap box now.

What type of epilepsy does your daughter have? My son has TLE. Do you believe your daughters learning difficulties are all related to the epilepsy? Does she have seizures you can see? I think you said when she was younger, you saw "quirks" but didn't know what they were. We don't really "see" anything physical (besides the one seizure were he lost conciousness). I ask these questions because our current neurologist doesn't feel the learning problems are because of the epilepsy. But another neurologist we saw over the summer felt that our son was having "breakthrough" seizures all the time, and that this was greatly affecting him in school. I have high hopes this VEEG will show our neurologist what is really happening. I think I mentioned before that we will be seeing another neurologist in January. He is an epileptologist and was recommended by the Epilepsy Foundation. Oddly enough, he is in the same office as our current neurologist. Also, do you have other children and if so, how does all this affect them? We have four kids-daughter 12, sons 8,7 and 3. For the most part, they are understanding. But they do get frustrated with him quite a bit.
There I go again, rambling on! It is just so nice to have this board and to meet people who are so willing to share insight/experiences and emotional support.

Take Care
Cris

Tiffani has complex/partial seizures. I am not sure what TLE is, I am not good with some of the abrev's they use here. http://www.healthboards.com/ubb/smile.gif
I do truly believe her "E" has ALL to do with her learning disabilities. And I think it is still affecting her. She has short term memory problems after a seizure, and if she has learned something, and then has a seizure..she will lose what she learned. Her doctor says, yes, she has probably had seizures since she was about 1. And her test scores from school are the reason he is getting the VEEG.

For as long as I can remember, I guess around 1 yr old, she would flap her arms like she was flying, and she would also bite her wrist and hand all the time. We thought this was something she did when she was excited, or nervous. Just "habits". So we didn't think anything of it. She wasn't speaking when she should have been, so I took her to the doc. We went through all the testing, when she was 4, we were in the van and she started making a strange noise, I looked in the rear view mirror and she was biting her hand BUT...her eyes were rolled back in her head! Scared the YOU-KNOW-WHAT out of me!!

I know how you feel about having the aide in the classroom. Someone suggested one for Tiffani, but I didn't feel it was necessary. She doesn't have any problems except for learning. So I just told them that all children learn differently, and they needed to find out how she learns. But, if you want an aide in the classroom, make it clear that you don't want them to SMOTHER your child. Tell them you want that Aide there to help the teacher as well as help your child.
I encourage you to sit down tomorrow, and write your questions down, write down what you want for your child, and take it to the meeting. You are the parent and you have the final say. AND....you DONT have to sign the papers right then. Take the papers, tell them you will take them home and look at everything, then get back to them. THAT IS YOUR RIGHT. Take them home, look over them, ask the teacher if she thinks they look good, and make sure everything you ask for is in there.
If they say he can not have an aide, then ask for a partial aide. Tiffani has a resource aide that comes in the classroom for one hour a day to touch base and make sure Tiffani is on task.
Ask for resource. They might suggest you think about putting him in a special ed classroom, if you don't want this you DON'T have to do it. like I said..YOU HAVE THE FINAL SAY. You can even ask for INDEPENDENT testing, and they have to pay for it, if you do not agree with their tests.

i have 2 boys and my beautiful girl. The boys are 14, and 11. Tiffani is 7. They were old enough to understand something was wrong, but too young to know what. Now they understand it all, and they write about her in the journals at school, and tell their friends. We aren't not ashamed by "E" at all around here. They are so great with her. Heck, they even remind me to get her meds sometimes! lol lol lol

Take care..didnt mean to get so long. I just LOVE having someone who is going through what i am going through. (not that I would wish this on anyone) but I am like you...my friends really try, and I love them. But they just don't get it.

bye for now!
Lindy

MOMOF3
OH MY GOD!! I FEEL LIKE GOD DREW ME TO THIS SITE .ALL THE ANSWERS MY DAUGHTER NEEDS TO SEEK AIDE FROM THE SCHOOL. PEDDY'S ALWAYS HAD PROBLEMS WITH SPEAK, AND RECEIVED THERAPY IN K AND 1ST. GRADE. HIS GRADES ARE NOT GOOD AND THE TEACHER IS ALWAYS COMPLAINING ABOUT HIS BEHAVIOR.
HE HAS PROBLEMS SITTING QUIETLY IN HIS DESK WITHOUT FALLING ON THE FLOOR. WE JUST THOUGHT HE WAS THE CLASS CLOWN AND THAT THE LAUGHTER FROM THE KIDS WAS WHAT HE WAS PREFORMING FOR. YOU HAVE SHREAD SO MUCH LIGHT ON THE SITUATION WE ARE DEALING WITH. I AM PRINTING THIS PAGE, NOW. THIS IS GOING TO HELP MY DAUGHTER UNDERSTAND HOW TO HANDLE THE DIFFICULTIES AT SCHOOL.
MAY GOD BLESS YOU AND YOUR FAMILY.
NANNER

Thanks Lindy for all the great advice. I'll let you know how the IEP goes today.
TLE is temporal lobe epilepsy. My son has complex partials as well, they occur in the temporal lobe. Usually right side only, but the last EEG showed them in the left temporal lobe. Go figure.
Sounds like you have a great and supportive troop there. My other kids are pretty good about it as well. My daughter is really the only one old enough to understand what is happening. But my 8 yr old knows things are often more difficult for Gavin (my son's name, hence my screen name which is my sons nickname. Kinda sorry I picked that, people often think I'm a man). He can be very patient with him and other times, NOT!
Well, I'll check back after the IEP and video EEG.
Take care
Cris