13 month old seizure free but still very delayed

Our daughter started having seizures (that we saw) at 4 months old. After starting Vigabitrin at 7 months old, the seizures stopped instantly.  She is now 13 months old, EEG is very close to being normal (except a temporal lobe spike showing) and has been seizure free for 6 months now.  She will be weaned of Vigabitrin soon.
The neuro treated her for Infantile Spasms, but said they didn't look like the "classic" seizures seen with IS. All testing has been normal.  She has had 2 MRI's, blood work, lumbar puncture, genetics, metabolics, ect.....
I am now really starting to worry, as she has never regressed, but since she has been seizure free for 6 months and is 13 months old, I expected her development to "take off".  It is very frustrating cause I don't know what to do to help her, or if helping her will even make a difference.  She rolls over both ways, she smiled early.  But that is it.  She cannot sit, or crawl.  Physio thought we were making leadway with her and that she was close to sitting, but she just doesn't want to try anymore and is still very floppy.  Tummy time, she will get her bum up into crawling position, but has yet to push up on her arms enough to get moving.
One of my main concerns, is her odd behaviour.  When she is in her exersaucer or high chair or on her back, she arches her neck waaaay back, looks backwards, and moves her head side to side.  She smiles when she does this and coos with enjoyment.  I don't even know how she gets her neck back as far as she does!!!  She had stopped doing this as often for a few months, but has started up again.    It looks very uncomfortable and is hard to watch her do this and not know why.  We have been trying to stop her when we catch it, but that is close to impossible.
We have always wondered about severe reflux as well, but could it be that bad that it would make her so that??
Does anyone out there have experience with any of this....seizures, delay, infantile spasms, neck/back arching, ect...?
Any input would be very much appreciated!

[specialmom]

I must confess that I won't be much help here.  I know that in the US, we have programs that track the development of children birth to age three.  Government sponsored programs for kids suspected of a delay.  Do they have anything like that where you live?  It is helpful to feel like an experienced professional is over seeing your child's development.  

The movement you describe where she arches in such an extreme way-------  I am struck by the fact that she is happy doing it.  I would let her as it is harmless------- stopping it seems pointless.  I say that as a mother that has a child with a developmental delay and my boy would spin at the age of 2.  Spin and spin and spin.  It reminded me that something may be wrong------------  it upset me.  So I would stop him.  Turns out, he was self soothing.  I was stopping him from giving his nervous system something it needed.  Once I found that out, I found ways for him to spin and do the other things he needed to stay calm.  Sometimes we don't know why they are doing something and it scares us because it looks weird---------  but for whatever reason, their brain is telling them to do it.  

But ask about it at your next visit.  

Keep doing her physical therapy---------  it just may be slower than you anticipated or hoped. Try to not be stressed about it as that won't help.  I know how hard it is.  I was depressed for about a  year as I was trying to figure out what was going on with my son and what it would mean for his future.  It hurts as a parent.  And not  knowing is really the hardest part.  Have faith.  She will most definitely progress even if it is slower than you'd like.  

good luck.  PS:  Make sure you do something for yourself to destress as I know that mother's carry a tremendous burden of worry for a special child.

[RiMeNiLa]

Your story could be our family's story. My daughter has just turned 5, so there is so much that I may be able to fill in for you from when my daughter's seizures started at 4 months until now. If I can help I would love to. I just found your post while I was looking for information on the net about something related, so not sure how this group works. Am I able to give you my email address?

[specialmom]

rimenila---------- you could go to her profile and hit "send message".  It is private and only she will see it.  You can write her whatever you wish.  She'll then get an email saying that she has this message waiting for her.  I'm sure she'd love to hear from you and correspond with you as it is a scary time for a family.  I'm sure she'd love your wisdom and support.  

Post any time here at med help. Lots of folks need help and it is a great community to give and share.

[kjf730]

My son is now 16 years old and had the same things you speak of.... what I would like you to know is there is hope.  My suggestion to you is to not focus on "normal" development stages, rather focus on bridging the gap for your child.  Go to as many therapy sessions you can and learn what therapies they do and carry them over at home.  Try horseback therapy, it helps the human brain learn to pattern and walk, crawl and sit up.  Look into oxygen therapy with hyperberic chambers and water therapy.  
Keep a journal of everything you witness while weening your child off their medication and bring it to the doctor so they can better help to ween him off of it.  There is a pediatric gastrointestinal journal article which clearly shows the GI issues effect the brain.  These children are toxic.  Work with a pediatric GI specialist to get this under control.  I also highly recommend giving her clay baths if you suspect this is a vaccine injury.  The clay baths help to draw out all of the metal toxins often left in the system with these children.  They gave me and my son little hope for any recovery.  He is walking, talking and normal as any other teen.  He has some learning difficulties, but we are working on it.  Good luck... keep the faith.  There are cures out there.  I hope this helps?