development slightly delayed...

[jennilee]

Hi,

Our baby daughter is now ten months old and has had epilepsy from birth. We havehad her on phenobarbital for about 6 months ands then went onto epilim and Camabazipam, all of which didnt work and now we are on Keppra which is the first drug which has worked! She is only having 1 seizure every week now which is amazing compared to how shw was, she was having up to four some days. Her development is slightly delayed, she cant sit unaided etc and we are wondering if this could be the effects of the drugs she has been on. Im wondering if anyone has had any similar experiences?

Would love to hear from anyone with a child with epilepsy as I dont know anyone and have felt quite alone in that respect.

Look forward to hopefully getting some replies...

 

[RobinN]

I can imagine how alone you must feel. I can't give you any advice or share stories, because my daughter did not have her first seizure until the age of 14.

I would say, give her extra time to do the developmental steps. It might be med related or it just might be she is not ready to sit unaided. Play games with her to get her to practice, and roll up towels or put pillows around her so she can fall softly. She will do it I am sure, just on her own schedule.

Don't forget to give yourself time to sit unaided too. You will need it, after all the time you give to your little one. Do you have other children?

 

[Chestnut_ mare]

not alone

Hi i'm new, but can relate. my son is 20 months old and had his first seizure at 3months. He has been on "lots" of meds and is currently on keppra but we can't tell what is working He is also delayed. My opinion is to see a phyiso as soon as you can to start working with if it is possible.

 

[jennilee]

sitting unaided

Hi,

Thanks for your response. Yes I am trying hard with her to help her, it has been a very difficult 10 mths as we have had daily seizures which are, as you know very difficult arent they?

I have 2 other children, a son who is 3 and a daughter who is 6 so it is also a case of trying to keep things as normal as possible, as well as seizures, time in hospital.....

I try to be positive all the time so that the other 2 dont worry about Beth when they see her having seizures and hold it in, after all they are to young to have owrry on their shoulders.

Anyway, on a positive note, we are doing well on Keppra so fingers crossed, things are getting better.

We are going to hospital tomorrow to get Beths eyes checked as the Drs arent sure that she can see properly, I think she can but you start to wonder, so will be pleased when we get that out of the way.

Does anyone know if epilepsy and eye problems are related at all?

 

[epileric]

Does anyone know if epilepsy and eye problems are related at all?

I know that during a seizure my eyes tend to dart as well it is common for pupils to dilate during a seizure but I don't know of any eye pathologies that are connected to epilepsy.

 

[Dutch mom]

Welcome Jennilee,

Oh yes, I can relate to your story.

My son is 10 years old now. He started out bad as a newborn baby with serious hypoglycamia and spend 6 weeks on the PICU. In his first year he was a slightly delayed baby, couldn't sit up by himself, didn't roll over, didn't grasp toys. As he got older, his development slowed down more and more while the epilepsy popped up and developed worse and worse. All the medications we tried, did only have very bad side effects and slowed down his development even more, physical as well as cognitive. Especially phenobarbital made him very doozy and non responding.
Later on we found out our boy had suffered braindamage shortly after birth, wich makes him a special needs child. As as result of this he has CVI. He can and does see, there's nothing wrong with his eyes, but his brain has problems/slows down in receiving visual stimuli. So his actual sight is limited.
His epilepsy developed into a bad epilepsy syndrome. We've managed to reduce his seizures and improve his EEG significantly thanks to the ketogenic diet at age 5 and got him med free at 6. Both -diet for seizure reduction and weaning him of meds- turned out to be essential factors for him to develop within the limits of his (dis)abilities. He's a happy handicapped boy now, active, makes good contact, enjoys life. He won't be sz free for 100%, but he will be med free as long as possible as far as I'm concerned.
I do know many parents who have small children with difficult to control types of epilepsy or an epilepsy syndrome. We're united on a Dutch forum for parent support. Our kids do turn out very different. One gets sz control and others don't, one learns to walk and talk, others don't. One gets a bad diagnosis as a cause of the seizures, others don't.
But one thing is the same for all of us: we do learn most and get the best support from other parents who do travel in the same boat with us.

Check out this one as a good start: http://www.kidsepilepsy.com/

 

[RobinN]

My daughter had vision problems on one of the meds we tried.

 

[Kayleesmom]

Hey Jennilee. Just wanted to welcome you to our group. Their are many great parents here to help. My daughter has had grand mals since she was 5 months old. She's three now. The only problems we have seen have been with her speech, but our neuro tells us that it is very common. My husband began having sz's when was 9 months old. He had developmental delays, but he caught up and is fine now. I think your daughter will be fine, too. She just needs a little more time.
Hugs and prayers
Leslie G.

 

[Loudmouth]

Hi. My daughter is 11 1/2 now, and she was diagnosed with epilepsy when she was 10. She was diagnosed originally with global development delay, she didn't walk till 2 or speak till 4 and she is 3 1/2 yrs behind her peer group in english ( she learnt to read at 8 ) and she is 5 yrs behing her peer group in maths. she was a floppy baby, and i think that there is a chance your baby will catch up, it may just take a lot longer and take a lot more hard work on your part. Physiotherapy, Occupational Therapy and speech therapy all help. Good Luck.

 

[Meetz1064]

My youngest

son, was born with a host of problems. He was very hypotonic, as you are discussing. This required working with physical and occupational therapists-- learning how to stretch, and make the stretching seem like it was play. He still couldn't sit up at the age of 10 months. Finally, by 12 months, he got it. Lots of work. He's not an E child, but I am an E patient, and I had to take meds while pregnanat with him. I do firmly believe that he's had some side effects from them, but I can't prove it. He is autistic though, but doing better than most.

He didn't speak until he was 4 1/2 years.....he has hearing issues due to many ear problems, and many infections....so he also went through speech therapy for about 12 years.

He also has had many eye issues--taking care of them has been interesting, requiring the use of prisms at first to try to measure the insides of his eyes for glasses.

As a side note. I know several E patients that have problems with their eyes and balance issues. I am one. My problem is called nystagmus....and my youngest son also has it, too, although he doesn't have E.......