Needing some encouragement regarding developmental delays...

Ashley - posted on 01/11/2010 ( 12 moms have responded )

15

14

1

My daughter is 18 months old. Her seizures started at 4 months old and we have been in and out of the hospital 7 times this past year.

She has major developmental delays due to up to 300 seizures a day. They are much less frequent now, but still not under control.

I was just wondering if any parent have a child that sat up very late or walked late. We have had another set back and I need to hear some encouraging stories of what is possible.

Thanks!

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

12 Comments

View replies by

Cas - posted on 01/20/2010

1

2

0

just keep encouraging her and keep asking for help its out there just a question of keeping on to get the help i know how hard it it is my daughter is now 16yr but like yours she had loads of seizures as a baby and her development was was very delayed she didnt walk till 18months never crawled and at the age of 2 could only say 6 words.
Now she is 16 and although she still has seizures and still has learning difficulties due to the time she loses at school because of her conditions she can walk and talk normally speak to your health visitor as there are children centeres out there that can offer a world of support to u and your daughter both my girls attened day nurseries at thes centres because of my eldest ones problems.i know its along road but with the right help and support u will get there. my daughther has attended a main stream school all the way through her school life and again dont be afraid to talk to the school when the time comes and keep talking to them tell them u will need an open door to them if needed on an every day baisis my daughthers school now has in place a toatal individual time table for my daughter and she is getting on really well now good luck for the future

Elissa - posted on 01/19/2010

31

5

2

My son has irregular brain activity they tell me about every 30 seconds. He was having generalized seizures every month or so and with every major seizure he would be set back again. He sat late, crawled late, walked late, spoke late... fine motor skills, problem solving etc were all affected. It took us 2 years to finally get his medication right, durin that time they estimated his developmental delay to be as much as 12 months in some areas (he was 2 1/2 at he time) He has now been seizure free for over 6 months... he will be 4 in May and his developmental delay has all but disappeared. He continues to have irregular brain activity, and he continues to be clumsier than other children. But, that is just how he is, and I love him no matter what. As parents, we encourage our child to be the best they can be, and accept them, no matter what. I'm going to love him, no matter what his challenges in life. I think we all have challenges... he is just blessed enough to have them on the outside where they can be seen... and helped.

Jessie - posted on 01/19/2010

43

11

3

yes, remember to get services ! Child development Services will help pre school kids get services and have play groups with ots of help for parents

Cynthia - posted on 01/19/2010

7

21

2

Hi Ashley,

My son Drew began having seizures at 2 years 7 months. He had 50-60 seizures a day. He quickly regressed in potting training, talking ect. The doctors said he would never live independently, he would never become educated past the 5th grade as an adult. They were WRONG! Drew is in the 5th grade and has never been held back a grade. It takes a lot of work, but please do not let these doctors tell you what you child will be able to do or not do. They do not know everything. I got my son involved in several rehab programs including but not limited to, physical therapy and speech therapy. Some of the therapists even came to my house. Good luck to you and God bless!

Cynthia Walsh

Ann - posted on 01/19/2010

19

6

0

my daughter was very behind in motor skills,she didnt start walking till two and crawling at 1 and i didnt know why??she is in school now and has a hard time keeping up with the class in learning new things..I looked online about this problem and found kids who have seizure and or on seizure meds can have problems learing .I havent found all the answers yet but hopefully this helped alittle.

Aileen - posted on 01/18/2010

24

20

2

yes here is something that i hope will cheer u up.....my middle son is now 11yrs old...he started fitting from 2days old....he then developed meningitus at 5mths and was in an out of hospital on a 1-2 weekly basis....they said that he would never walk or talk....lat year he learned how to ride a bike without stabelisers.....by the way they only diagnosed him with epilepsy at age 9yrs but told me that he had probably had it from birth...he is still behind in his developement but is in mainstream school although he has an educational statement....hope that helps x

Jessie - posted on 01/18/2010

43

11

3

I can relate. It does feel hard, especially the toilet training. My son is 8 and still has accidents, and issues with constipation. The more you can get a pattern she will follow,trying at a specific time is good. he resists it, but everyone tells me this works well.

Donna - posted on 01/17/2010

2

22

0

hi my daughter bethaney is 7 now. she was the same diagnoed at 4 months with epilepsy. she was having so many seizures we were told she may have permanent brain damage she may not walk talk etc. she was very delayed in early milestones she didnt sit up till 8 months crawling and walking etc were all really late. she didnt toilet train till nearly 5. she is really coming on now though . she like a normal girl. she has recently started at a special school and is doing fab they can help her to learn in a different way. it is such a hard and frustrating thing to go through.but it does come together in the end. i never thought we would get there but little by little its all coming together x

Nicole - posted on 01/16/2010

211

59

100

Hi, my son have developmentally delays, but he does not have seizures. He did walk late, crawled, and a few other things late. He is 10yrs old and does everything. He still has delays especial with his lanauge. He is doing lots better, but you can't tell unless he talks and all. But it will get better. I know it's hard. I could tell the difference when he was a baby, but he has gotten better. Hang in their. It does take a little time. Also ask them what you can be doing at home to help out. Good luck



Nicole

dylan (07/02/99 developmentally delayed, sever adhd,odd, gerd, very picky eater, mr, ld, speech and more)

phoebe (06/04/04 speech, complex partial seizures, generalized seizures)

Jessie - posted on 01/15/2010

43

11

3

We did not think our son would walk, or talk. He had brain damage from encephalitis at age 29 days. He was on phenobarb for one and a half years. he was very delayed. We kept working with the speech therapist, PT and OT. He does walk now, and we can not keep him quiet he talks so much. We did sign language for over a year. he went to a baby sign class, so he saw other doing it too ; they were younger but it did not matter. I did the sign for things he really enjoyed and wanted, then I gave them to him. He did learn. He cintinues to be about one and a half years behind, or 2 yrs behind but he is making progress, slowly, at his own pace. The hardest for me is when i compare to others his age, or in his class. The i remember this is not fair, he works hard and is learning. we use rewards alot, and keep them diverse and of his interests.

Christine - posted on 01/12/2010

2

0

0

Hi! My name is Christine. My daughter's name is Allison and she has static encephalopathy, central hypotonia, ataxia, and epilepsy. She is now 3yrs old and she rolled, sat, walked and talked late. Pretty much all the mildstones were late. However, when the doctors discovered that she was having seizures all day long (around 21 months) they put her on depakote. This drug really helped her and after about a month (they had to play with the dosage a bit) or so on the drug she started to talk (she only said Hi, Momma and Dadda beforehand) and then she started to walk. As time when on some of the delays got smaller ( I think her therapy helped alot), but she is still delayed in all areas except social and emotional. The doctor told us that we need to concentrate on what she can do not on what she can't. Although Allison can walk, she cannot walk without falling VERY often and bumps into walls etc..., but she has adjusted to walking that way and she now tells me "I'm fine" and keeps on going after getting back up after a fall. She also cannot climb up or down steps or step up or down a curb without assitance. However, she has now figured out how to manage the stairs in her own SAFE way (she uses her arms a lot). She also has very poor fine motor skills and has difficulty using a crayon, but just recently my husband gave her a pair of chop sticks at the table and she started using them, correctly. We couldn't believe our eyes. She can't use a fork or a spoon properly, but she could manipulate chop sticks. I guess what I am saying is that you never know what is possible. As hard as it is at times, try not to get discouraged and remember the doctors don't have a crystal ball. Try to be positive...tomorrow is another day, you never know what good things might happen :)

User - posted on 01/11/2010

12

35

3

Hi Ashley my name is Christine and my son is now 16. He has Cerebral palsy, seizures and is autistic as well. He functions at a 9-12 month level. Now let me tell you what the doctors told us. " Josh will never stand,sit,crawl,talk,comprehend,know who we are" and the list goes on and on. They basically told us if he lived to leave the hospital he would be incoherent to the world around him. Now josh sat up at the age of 1, he crawled at 6, he walked independently at 8and has a vocabulary of maybe 6 words. Yes I am still changing his diapers and bathing him and feeding him and giving him total care but he did do those things. Just remember one thing that I forgot when he was small.. YOu can't be everything you have to be mommy first! Everything else comes 2nd. Good luck and feel free to contact me if you need to talk...

If you see this, leave this form field blank.
Powered by RESPECT not THUMPS

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms