Hi I'm New

[Chestnut_ mare]

Just a quick hello and to tell a little of my story (and to rant a little to get it of my chest)
My son is 20months old, has has seizures of a sort since 3months. we have had a video EEG at 4months that showed that his "jerking" is/was seizures. Eadweard is also developmentally delayed. He can not crawl, grasp, hold things feed himself, talk, walk etc The dr's say that he is globally delayed and at a 4month old stage.
One of his dr's is now saying that one of the types of "movement" that we thought was seizure is not seizure up a "movement" disorder.
We currently are have a "good run" with treating all Eadweard's stuff and are only in hospital once a week (not the 1 to 5 times that it can be)
Although I have ranted about all the "bad" stuff. Eadweard is starting to interact with us, giving us eye contact, smiling, and responding to what we do.
I try to stay positive, as the dr's have no answers for us.
I also have a 6month old baby girl Morag.
My husband and I work strongly together.
Its been great to be able to read other peoples experiences and no that others no what your going though.
I'm happy to have found this form.
I have now finished ranting and raving

 

[Bernard]

Development delays seem to be pretty common with children experiencing seizures (or on AEDs). The good news is that most seem to catch up with the crowd eventually.

 

[Nakamova]

Hi Chestnut_mare, and welcome to the site.

Your rant seems pretty restrained. Feel free to rant and rave plenty more! That's what the site's here for, among other things. You must have your hands full with two little kids. It's great that you and your husband are a good team, and that you are staying positive about Eadweard's health.

There are forums/threads on this site for people with young kids, as well as information about alternate/complementary treatments involving diet. I hope you can get a chance to the explore all the resources.

Best,
Nakamova

 

[Dutch mom]

Hi, welcome from another mom!

My son is age 10 now. As a baby and toddler his development was delayed like you describe your son: did'nt sit up, didn't roll over, grabbed no toys, didn't crawl, walk and talk.
At age 1,5 he started having seizures and at age 2 braindammage was diagnosed. Epilepsy developped into Lennox Gastaut syndrome. His seizures have been acceptable controlled thanx to he ketogenic diet for 5 years now.
He's a special needs child and will stay totally depended from others as he grows up. But he is a very happy, energetic boy and makes good contact, we're so blessed with him in spite of his handicap.

 

[Ruth]

Hi Chestnut Mare, welcome to the forum. It was started out of Bernard's love for his wife Stacy. This love has spread throughout the forum.

We all rant and rave sometimes, it is all right. My children are older now. I have 3 sons who have epilepsy. When they were children, they were deveopmentally delayed, as well. One in particurlar did not know how to use the public bathroom when he was a small child. He was in 1st grade and my husband had to come and teach him how. The school was not teaching them everything they needed to learn When they came home from school, I taught them for 4 more hours. I used simple things to teach them. It worked. They did catch up when they were in high school. Ruth

 

[Chestnut_ mare]

Thank You

Thank you for the posts, they give me hope. Right now we are in a position where we are considering if we are going to need a wheel chair or not. Its hard to make these decisions not knowing what sort of Epilepsy Eadweard has.
He is getting heavy to be lifting each time we have to do "something" or "go some where" There are some prams that we are also looking at that are double so that it will be easier with our baby girl.
Not sure which way to go.
We hope to go to some show rooms in Melbourne in the next week or so to see the choices rather then just looking in catalogs or on the net.

 

[Ruth]

Hi Chestnut mare,

You can find out what sort of Epilepsy, Eduard has. Have your doctor do a Video EEG. That will show up what kind he has.

 

[McGill]

Chestnut Mare, my seizures started @ 9 mos. of age. I know that I have had several developmental delays as a result of being a premie, but not to the extent to which you describe your situation. I can give you the name of another person via PM to contact in Australia for a support person. Will have to get her permission first.

 

[Chestnut_ mare]

thanks

We have had 2 video eeg's already and the dr's are discussing another one already.
I went to the pead on Friday and although he is supportive and kind, he has no answers for us.
We have yet another neuro dr appointment this coming Friday. I'm pushing for more info on the ketogenic diet. Also if a date has been set for the muscle and liver biopsy.
McGill I would be happy to be contacted for support or to give support.

 

[Ruth]

Hi Chestnut mare

Why do you need a muscle and liver biopsy?

I am sorry that you have not gotten any answers. A Video EEG usually shows up the answer on the first one.

 

[Chestnut_ mare]

Biopsy's

Hi Ruth,
The muscle and liver biopsy's are to "try" and rule out (or in) metabolic epilepsy. Eadweard has already had a skin biopsy done but the other two require surgery. I funny thing is, that the doctors insist that the biopsy's are done but the chance of getting conclusive information is very low. I'm not sure if many people know what metabolic epilepsy is but the way I understand it in simple terms is:
Metabolic epilepsy- is related to the way the cell (in the brain) converts sugars into energy. Hence the ketongentic diet feeds the body fats instead of sugars.
Although I also understand that the ketongentic diet is used in many different cases not knowingly related to metabolic epilepsy. I don't fully understand how it all works together.
If anyone has a better way of explaining it please let me know (reading back over what a I typed, I don't thing I have made sense).

 

[McGill]

chestnut Mare: please check this link to try & explain for you what metabolic epilepsy is. Here's the link: http://www.epilepsy.com/discussion/980290

 

[Ruth]

Chestnut Mare: I looked up the link that McGill gave and I understand it. I also understand your explanation. You are making sense. I hope the surgeries rule out metabolic epilepsy. It is to bad that Eadweard has to go through surgeries. I wish you both well. Ruth

 

[Loudmouth]

I have epilepsy and so does my 11 yr old daughter. My daughter was development delayed also, and she still is. She was slow to hold her head up (at 1 yr she was still as floppy as a newborn, couldn't support her head). She Learnt to crawl when she was 16 months old and stand up on the furniture at 18 months old and to walk when she was 23 months old. She has had a lot of problems with school, and although she is in a mainstream school, she has a lot of extra help, and she is quite a way behind with her learning, her english (reading, spelling and comprehension) she is working at a 7 yr old's level (she is 11 1/2) and her maths she is roughly at a 6 yr old's level. She is making progress, but just a lot slower than her peers. On thursday, she starts at secondary school, which is a huge jump over here in England, and the school are not sure how well she is going to cope with it, she may end up being educated at a special school by next year. I'm not fussed, I just want her to acheive HER full potential, and although it may not be the same as for other children without epilepsy, I will be happy as long as she is happy.

 

[Ruth]

Hi Loudmouth,

Over here, they call it special education. My last born son went through it. He went through school. He wanted to be mainstreamed in High School. I had to go through an attorney to do it. The school district would not cooperate even though they said that my husband and I were part of the team.

When he came home from school every day, I taught him for 4 hours each day. I used simple things to teach him. We got small computers for spelling, reading and math. They did not have the internet back then. The Computers were new. I also said that I was a teacher in order to get him a magazine to teach him other things, like news, science etc. That gave him an all around education. I took him to the library every Saturday. We read books together, including things like the states. I made learning fun!! To graduate from High School, he had to pass tests. He successfully passed all of his tests and graduated.

 

[Loudmouth]

I do do a lot of work at home with her, but I have a 5 yr old son who also has learning difficulties (for other reasons) so I need to give him time as well, and my 7 yr old son has extension work sent home each night as he is working about 3 yrs ahead of his age. The most I can give each of them is an hour each evening, as I have to spread myself between the 3 of them and there's only me to do it all! I try my best and she is making progress, but not through anything the primary school had done, they were working 4 years over her head and she was getting about 4 hrs a week at school on things she actually needed to learn...just hoping secondary can give her more help as otherwise I will have no choice but to try to get her into a special school. The Local Education Authority won't let me home school her as I left school at 16 when I was pregnant with my daughter, and have no formal qualifications. (I was predicted good grades but due to family circumstances, i asked to be moved down a year as I moved from England to Scotland halfway through my GSCE's, and the education system is different up there, they do Standard Grades, and I didn't have enough time to catch up on the coursework, so went down a year then found out I was pregnant and at 4 months,just before my exams,I got kicked out of the school...)

 

[Ruth]

I do do a lot of work at home with her, but I have a 5 yr old son who also has learning difficulties (for other reasons) so I need to give him time as well, and my 7 yr old son has extension work sent home each night as he is working about 3 yrs ahead of his age.

I, actually had 3 children with learning difficulties. Two of them were twins. The other one was born much later. The twins, I taught together.They were in special education. I did not have as much time I wanted to spend with them. One, ended up in a high school that is called a magnet program in California. That is a special 2 year course on just one thing. Since his name is common, I had him keep all of the letters that he received. Sure enough, my son was not the right person. They had to take him since they had invited him. It was for computers. He is great with computers and passed high school with an A plus.

You might not have as much time as you would like to spend teaching your children. That is all right. The effort will pay off. I do not have formal teaching, as well. I graduated from high school. I had a C average. It is a shame that they kicked you out of high school because you were pregnant. Here, they let teenagers stay in school, unless they want to leave.

You should have been allowed to pass your tests and graduate.