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kristy_08
Developmentally Delayed 1 yr. old
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Hi, my name is Kristy. My daughter is VERY delayed. She started having seizures at 6 mths. old. She has gran mal seizures from generalized Epilepsy. Before she started having seizures she had the biggest smile. She is now one yr. old and NEVER smiles. She has been evaluated at a 2 mth. old level. She can not use her hands, she has NEVER played with any toy, she doesnt reach, she doesnt smile anymore, cant make eye contact for longer than 5 seconds, and doesnt interact with me or anyone else. Her birthday party is coming up Friday and I am so sad and worried, she is just like a little infant!. She is in therapy but hasn't improved. I worry continuously that something else is going on with her other than the seizures, or maybe that is what is making her so slow. She has been on Phenobarbital, Keppra, Trileptal, Dilantin, none of those stopped the seizures and now she is on Topomax and she is still having them but they have slowed down from every day to now she goes for a week at a time. Her neuro. tells me her background is very slow on her EEG, and that may be what is causing her to be behind. We are planning a trip in June to go to the MAYO Clinic. I just need more answers, there has to be some way to help her to start developing, or maybe they can tell me if she is always going to be delayed. If anyone out there can tell me anything I would appreciate it. Is this normal to be this behind, or could she be mentally handicapped? Hopefully I'll find out soon from the Mayo Clinic. My email address in kristy_08@live.com if anyone has experienced this with Epilepsy.
Recent Comments on this Discussion
Kristy, I understand your plight. My daughter is 18 months and she is on a 9-10 month level as far as development. She had a first seizure at 2 months of age and she has not caught up at all. She started crawling at around 14 months and she is just starting to pull herself to her feet. All I can suggest for your daughter is physical and occupational therapy. She will eventually need speech therapy, as will my daughter since she is just starting to say mama, and even that is not too clearly. Check with your state as far as the programs it offers since my daughter qualifies for the Early Childhood Intervention Services. Most of these programs are free if your child qualifies for them, and your daughter sounds like she does. Good luck and God Bless! You and your daughter are in my prayers...
My son recently had surgery at Cleveland Clinic and we met a couple who had a daughter, she was 11 months old at the time, who was undergoing the same surgery as my son, although they have two different diagnosis. I'm probably way off base here, but your daughter's symptoms sound very similiar to what their daughter was exhibiting. I believe she was diagnosed with Lennox Gastaut. They said before surgery she never would smile, she acted almost like a zombie, didn't "talk", didn't play or smile. Anyway, she had an anatomical hemispherectomy done, which cured her of her seizures, and I remeber as they were being discharged, they showed us their daughter, and she was actually smiling and showing facial expressions, they were so happy.
she's been on 5 meds in 6 months?did the first 5 meds not help at all? when did she stop smiling and you noticed her being delayed? Make a list when you go to the mayo clinic which is an excellent place ive heard. Topomax can "slow" you down mentally. is she seeing a neurologist now or her regular pediatrician? maybe her dosage is too high. discuss the ketogenic diet with the neuro you see at mayo.. good luck. God bless all of us caregivers.
HEY MY DAUGHTER STARTED HAVIN SEIZURES AT 5 MONTHS OLD AND SHE IS 2 AND SHE HAS A DELAY IN SPEECH SHE IS 1 YEAR BEHIND HER NEURO SAID THAT HE WANTED HER TO GO TO SPEECH THERAPY.SO NOW SHE IS SHE IS TAKING DEPAKOTE BUT SHE IS STILL HAVIN SEIZURES SHE IS NOT RESPONDIN TO HER MEDS. I THINK THAT THERAPY WILL HELP YOUR DAUGHTER. GOD BLESS AND TAKE CARE