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infant epilepsy and developmental delays (Page 1)

Can anyone relate or provide postive outcomes?

My son is seven and a half months old. He began having siezures at four months, and has had them ever since. He started on phenobarb which controlled them for a bit, over time they started up and medicine was increased to try and control them. He got to a point where he was having 20-30 a day and had an eight day hospital stay to try and figure out what was causing them. He is now on phenobarb and topmax and it seems to be working. He has had a normal MRI and tons of blood work that has come back normal. He has had three abnormal eegs. My son also has significant global delays. He looks very normal but does not smile much, play with toys, or do much but lay. He has physical therapy in place weekly to help with muscle contol. I am devestated and so scared about what his future holds. Can anyone relate? Thank you for taking the time to read this!
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replied April 7th, 2008
positive outcomes
Hi I know this is a scary time for parents ,we have a similar story to yours. My best advice is to get involved (if your not already) with early intervention as much as possible. Our daughter is 41/2 now and this has made a big difference to her,and the whole family. I am always amazed at how much these children can learn ,we read a lot to her show her pics ,play with her and play a lot of hi five dvds when we need a break, they love the colour and the music. I am happy to talk some more in a private e-mail if you like and share more positive outcomes with you.
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replied April 8th, 2008
thank you
thank you for your reply. If you want to share stories, pm me.
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replied May 6th, 2008
Hello, my daughter started having seizures when she was 5 months old. She ended up in the hospital and after testing was put on Phenobarbital.
The seizures were under control but she didn't seem to have a personality anymore. She was delayed in everything. This past October ( four months before her second birthday) we had her fully weaned off the medication. I had , had a long talk with her doctor about how I thought the Phenobarb was effecting her and since she hadn't seizured( that I know of) since she had been on meds he let us take her off. She hasn't seizured since but is still very delayed.I definately agree with Jolee, that early intervention makes a huge difference. My daughter has been seeing the CARE ladies (physical,speech, and general ) since she was little and they have helped us alot.
Taylor is 27 months now and still doesn't talk. She'll very randomly say a word, but not often. She has been making small strides developmentally since we took her off the phenobarb. She started walking not long after she was weaned and socializing a little more( mostly through sign and play) . I notice personality in her.

We are getting another Eeg and an MRI done soon.

There are posts on another epilepsy message board talking about the effects of phenobarb and epilepsy on infants and young children.

I'm sure you already have but I would talk to your pediatrician about your concerns. I know how hard it can be to watch your childs development and stress about why they aren't hitting their milestones when they should. Although I'm lucky that my daughter hasn't seizured since she was a baby I'm still dealing with the after effects, trying to help her catch up and wondering if it's going to be long term or if she is going to catch up and eventually be where she should be developmentally. Only time will tell.
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replied February 24th, 2012
I have a similar situation. My daughter was four months. Seizures with focal loss then arm and leg jerking on one side. Eight days in hospital. Ct scan, mri, mrv, mra and eeg all inconclusive. Put her on phenol. No more seizures. But no big strides with milestones. Was a few months behind.13 months old started weaning off. Started walking, more vocal, teeth came in, more interactive.18 months small seizure back on phenol. Week goes by no probl3ms. Then big seizure for the babysitter, stops breathing, turns blue, starts breathing again ambulance, hospital e.r. loading dose of phenol. Eeg just done. Came back abnormal. Back to neuro monday.
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replied May 15th, 2008
siezures
Hi my son is now 19 months and still having siezures, on Kappra and Topromax, so delayed, doesn't hold toy's, no head control, and has very limited sight (he sees light and dark). we worry to bits about his future, all MRI's normal 6 irregular eeg's, great pregnancy? He's so beautiful too.
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Users who thank tilley for this post: juliezeh 

replied January 16th, 2009
our one twin daughter is now 8 months old.has no head control and we dont know if she can see.we are trying to do everything possible to assit her.she is aeds epilim and rivitrol since she has been taking these aeds we notice a slight improvement in her hearing and ability to smile and even tries to make sounds when spoken to.
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replied January 16th, 2009
peace Smile Smile looking
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replied January 16th, 2009
Development Delay/ Seizures
Hi! I haven't been on this site for a while and just wanted to get updates on anyone that has time to respond.
Our daughter G has made some progress with sign/conmunnication skills and her level of understanding has come a long way. Later this year she is going to start school(special school) I'm thinking about home schooling as we had a bad year with seizures and still changing meds from Topamax to Keppra.If any one has any thoughts on home schooling I'd love to hear from you. Wishing everyone a great 2009.

Anzo- It sounds like your doing a great job with your daughter keep up the good work it always helps parents to stay positive when they can see some progress.
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replied June 22nd, 2009
My 6month old-
My son Tyler has had seizures since he was born, but were controlled with Phenobarb. He was born at 28 weeks and is now 8 months.. corrected he is 6 months. About a month ago he started having these episodes that he never had before. He has and EEg and everything was normal, his medication was increased and he became very drowsy which distrubed me because he was a pretty active baby even thought he had lots of delays.
He continued to get these episodes and had to be hospitalized for observation. His episodes were more like he was going aerobics.. he will move his head as if nodding and lift and do some cross action hand and leg thing. After this EEg I was informed that in fact he was having seizures. He doesnt smile or play. He tries to babble and had good head control,but I do worry about his future. He has early intervention and it has helped. They mention that he will be okay.. its just so fustrating to see this happening to my little angel.
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replied July 8th, 2009
Hi My baby girl is now 16 months . 14 MONTHS CORRECTED AGE. She was born with epilepsy and have 350 seizures by the time she was 8 weeks, We tried phenobarb which I hated it was awful and made no difference, we then tried rivitrol, topramax and finally tegretol and keppra. Finally after almost a year we had control. She has been seizure free for almost 7 months now. She didnt devlop at all in the first few months but always seemed happy. She smiled at 4 months and hasnt stoped since. However she is only just sitting up dosent play with toys, will hold them for a second and lets go. she is the most sociable baby ever and every day I think she is getting somewere but realistically I just dont know any more. I dont know if she will ever catch up and have amothers instict thats there is still something not right even though shes not seizing and the MRI shows the damage thats been done dosent actually effect motor skills I think theres something else wrong? Does any other mums get that feeling???
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Users who thank abyrne for this post: firemonky 

replied July 23rd, 2009
i have a daughter who is about to be one she has had seizures since the day that she was born no cause she has bad developmental delays she wont hold nothing or bear weight on her legs she isnt crawling yet but she is a very social happy baby i was reading another website and a whole bunch of different people said it was the phenobarb that was causing the delays
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replied August 15th, 2009
hello. our baby is 8 months now. she has had seizures 2x. should we rushed her to the hospital everytime she would have seizures? she usually gets normal after 5 minutes. it would be of greta help if you can answer my question. thanks
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replied April 25th, 2010
abyrne wrote:
Hi My baby girl is now 16 months . 14 MONTHS CORRECTED AGE. She was born with epilepsy and have 350 seizures by the time she was 8 weeks, We tried phenobarb which I hated it was awful and made no difference, we then tried rivitrol, topramax and finally tegretol and keppra. Finally after almost a year we had control. She has been seizure free for almost 7 months now. She didnt devlop at all in the first few months but always seemed happy. She smiled at 4 months and hasnt stoped since. However she is only just sitting up dosent play with toys, will hold them for a second and lets go. she is the most sociable baby ever and every day I think she is getting somewere but realistically I just dont know any more. I dont know if she will ever catch up and have amothers instict thats there is still something not right even though shes not seizing and the MRI shows the damage thats been done dosent actually effect motor skills I think theres something else wrong? Does any other mums get that feeling???
My son is 6mos old and also is very social and smiles alot.He doesn't really play w/toys either.We just started physical therapy and have seen an improvement.Talk to your dr adout pt/ot...He also just a hearing test that showed hearing loss and they want him to wear hearing aids.Anyone else w this???
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replied April 25th, 2010
My son is 6mos old.has had seizures pretty much since birth.he's on keppra which has been a god sent,he isn't playing w,toys or rolling over though.we go to pt/ot every week and just had a hearing test that showed he needed hearing aids.ugh!!!his newborn screening was fine.doc's think it is because of the seizures (he would quit breathing everytime he had one)anyone else? he is the happiest baby,,i'm a my wits end...
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replied May 3rd, 2010
My daughter is sixteen and 1/2 months old. She has been in and out of the hospital for the entire time. We just found out this week that it was seizures and they started her on the medication. Over a weekend she has made a change that even her therapist from early intervention cannot believe. It took a lot of prayer and I am living witness that it works. She was having 20 an hour and they would not let her go home until she was only having one. She could sit up by herself until she was ninth months, could not crawl until she one, and could not reach for things. After much prayer over one weekend she is able to crawl, pull up, reach and now saying some words. The best advice I can give you is to pray, because it works. I will let you know of anymore postiive outcomes. Her EEG was abnormal but CT was normal and we are waiting to get a MRI next month.
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replied May 27th, 2010
Developmental delay in 27 months daughter
Hi fellows,

my beautiful daughter started having seizures when she was merely 12 hours old. She is now 27 months and her seizures are controlled with 3 medicine phenobarb, topiramx and valproate. In the first year of her birth we rushed her to hospital in emergencies every two weeks but then in the second year that routine changed to once every month. At one point she was unable to sleep because sleep would always bring her more seizures. She is 27 months and has started walking 2 months ago. She is walking but not 100% firm yet and still falls off very now and then. She doesn't talk except a few words which she utters every now and then. She is very friendly with kids and strangers and play alot with toys. She also learns things to do very fast like if you tell her to open and close a draer by doling it in front of her, she will do it. she interprets whenever we asks her to do something for example say bye bye, make gestures, face expressions, or ask her to show us body parts such as nose, ear etc.
We are concerned because she is supposed to be going to school in 9 months time and she doesnt talk or fully understand meaning of common things.

Please let me know if anyone has similar experience particularly I would appreciate if someone let me know what should be done straight away to reduce her developmental delay.

thanks
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replied June 14th, 2010
Hi, I also has similiar experience.My sweet little baby (24 months old)is on drugs(phenobarbitone) due to epilepsy from 4 and half month of age. She is globaly delayed in her milestones.She speaks a very few words and that too rarely,she crawls,stand and walk with support and she is hypotonic also. Physiotheraphy is going on. Hope she attains all the milestones.
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replied October 22nd, 2010
my daughter started having seizures at 6 months
My daughter had started having seizures at about 6 months of age and we are not sure of the cause.Reading the posts on here hit really close to home. She has developental delays as well she is 3 but has the sense and the behaviors of a 2 year old. I would like to know if any of you parents ever got a diagnosis on what was wrong with your lil ones and if you have researched anything? I have had the dr run several tests to see if she has any type of issues but none come back. She seems like she is just delevoping at her own rate and has been seizure free for over 2 years. She aslo took topamx for 2 years . I would really look at the pros and cons of that medication as it has some serious side effects. Hearing loss is one of them. After taking her off the topamax I see her blossoming slowly. So if anyone has any advise or avenues where you may think i should look i would appreciate it. She was also born with a blood sugar of 24 and was 3 weeks early. She had little muscle control until after a year and still has low tone issues. She is delayed in all areas. However I can say that I see no dullness in her eyes. It is almost as if she is in that lil body somewhere and waiting for me to get her out. I am not going to give up on figuring out what caused this.
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replied January 26th, 2011
My son has had seizures since he was 2mon.old. He is now 13mon.old. He is very delayed. He does not sit up, walk, crawl, talk or play. He won't even hold onto a toy. He is currently on Keppra. Does anyone have any hope to whether or not he will eventually do these things?
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replied December 19th, 2011
My daughter had seizures at 3 months old. She was in the hospital a week. Everything came back normal, they couldnt figure out what the issue was. She was put on phenol, and it stopped the seizures. She was at 4ml twice a day. When she turned a year old, the neurologist said lets see what happens if we stop, sometimes it just never comes back. So we reduced her medicine over a series of a few weeks, and she was off it and hasnt had seizures since (that was 5 months ago). What I did notice is that was developing slower then her sister had. Took her longer to crawl, to talk, to get teeth, etc. When she was off the phenol she started making up for lost ground! Her two bottom teeth came in right away, she was starting to talk, and walk, and be very interactive. Im hopeful that the seizures are behind us, and hope they stay there!
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