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Name: Heidi
[ Original Post ]
Hi, I have a 21/2 year old little boy with many brain abnormalities that can not be explained. He has issues with mobility, speech, vision, fine motor skills. He also has Epilepsy. Was wondering if there is anybody out there with similar symptoms?
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Name: Kenya | Date: Mar 31st, 2006 3:44 PM
Heidi,

My husband has Epilepsy. He has had it every sense he was born. He used to have problems with walking when he was child and wore braces, and as he grew up he had many seizures. His vision, speech and mobility are fine but he is hemiplegic on his left side. He had brain surgery 5to 6 years ago, and hasn't had a seizure sense. 

Name: kye | Date: Apr 19th, 2006 5:28 PM
hello,
how are you doing there,please mail me back i will help you out [email protected] will be expecting you mail.

cheers 

Name: Nancy | Date: Apr 20th, 2006 2:26 PM
Hi, my son is now 6, but has had seizures since 3 months. He was diagnosed with autism at 4 1/2. He too has had many developmental delays. His epilepsy is cryptogenic (unknown cause). He walked at 33 months and is non-verbal. My advice is to push for as much services as you can now and utilize any resources you can. Hope this helps. 

Name: Debbie | Date: Apr 24th, 2006 3:06 AM
I have a 7 year old son with severe developmental delay and seizure disorder. I would like to keep in touch with someone who is going through the same thing I am. Please feel free to email me at [email protected] Thanks and looking forward to hearing from you.
Debbie 

Name: mother of 2006 | Date: Jun 21st, 2006 11:40 PM
i can kind of relate i have a 3 year old son who was born with a broken collarbone and he has developmental disabilities 

Name: Nancy | Date: Jun 22nd, 2006 1:50 PM
My son has epilepsy and developmental delays. He had epilepsy since 4 mos. old. He later was diagnosed with Autism at 4 years old. He is now 6 and requires one on one attention at school in a classroom with other autistic children. My advise would be to seek out a developmental pediatrition to make sure you have a specific explanation or early diagnosis if any. What you need is to get all the therapy and services you can. 


Name: Jenalyn | Date: Jun 23rd, 2006 1:34 PM
My son is 13 months. Had his first seizure at 10 months. HAs never crawled or walked. He was able to sit up better at 6 months than now. Otherwise his development is normal, but I guess time will tell. THe docs say that all the drugs and hospitalization have been a major set-back for him. It's tough having a kid with health problems. My husband and I are Christians and are praying that there will be something out there that'll cure him. Drugs aren't very nice! 

Name: mevelt83 | Date: Jul 14th, 2006 1:16 AM
Does your boy have problems with tracking and focusing on objects? My son does. He has LGS (lennox Gastaut) and he also has Celebral Palsy and Visual impairment. Melissa 

Name: Tobi | Date: Feb 8th, 2008 6:35 PM
My husband and I are caring for a foster child (girl, age almost seven) with epilepsy and marked developmental and speech delays. Even the child's neurologist hasn't told us how to help her to learn or grow best --- she's repeating kindergrten for the second time but still way behind in all ways. HELP!?!! 

Name: christine | Date: Mar 21st, 2008 4:51 PM
i have a son that is 7 , i found out last when he was 6 yrs old he had a developmental delay, I would love to talk to anyother parent who is going thru this. my email is [email protected] 

Name: christine | Date: Mar 21st, 2008 5:05 PM
i put the wrong email address its not [email protected] its [email protected] so if anyone does have a child with development delay i would like to talk to someone thru email its all new to me . 

Name: sandy36 | Date: Mar 22nd, 2008 11:46 PM
Hi,my name is Sandy,i have 2 sons,aged 15 and 11 and a half,my youngest Son Aaron,has Autism,Epilepsy,Severe Learning and Behavioral Difficulties,his Epilepsy t the moment isn`t very well controlled,he was having only absences,but the past 2 seizures that he has had has been grand mal ones,it`s a very worrying time for us at the moment,in the middle of upping his medication that he is on for the Epilepsy,hasn`t been handling the change very well.p.s am new to this forum,only joined tonight 

Name: becky | Date: Mar 25th, 2008 12:53 AM
Hi, I have a seven month old son who has been having seizures since 3 months. He has had several hosptial stays and many medicine adjustments. He is currently on phenobarb and topomax, seems to be helping for now. He has significant developmental delays, we are really scared about his prognosis. He has had a normal MRI and many blood tests that have come back with nothing. Physical therapy in place for him weekly. Any one have any advice? 

Name: marguerite | Date: Mar 25th, 2008 11:18 AM
Dear Moms-I am reading over you e-mails and remembering my son's early years....he is now 27 and a delightful young man. He had infantile motor spasms-a seisure disorder that lasted many months. My advice is to follow your gut-you are the only one who knows what is best for your child. Love and play with your child-look for paid services---we are still broke by not doing that...... 

Name: ivorysmom | Date: Mar 25th, 2008 11:15 PM
my little girl is 2 1/2 and doesn't walk or talk yet....she is classified as mild MR but other than that they can't tell me anything except the obvious she she severly delayed...she has fever siezures...so everytime she gets hot...got to hurry up and give her tylenol or she will siez.......they haven't gave her any meds for it yet .... 

Name: Lady Di | Date: Nov 4th, 2008 8:44 AM
Hi there I am a newby tonight so this is all very interesting I have two sons both have special needs one is 7.5 and has verbal dyspraxia and the other is 3.5 and has very similar and also epilepsy so some support would be fantastic I have my good days and my bad and my plain old emotional days (why me) I love them dearly but it is so hard some days the wee one has very very limited speech I have to have an ambulance to him once a fortnight and have not got his seizures under control yet so anyone wants to lend an ear and make a new friend I would be very grateful 

Name: Charlies_mum | Date: Nov 13th, 2008 8:48 AM
I have a 15yld boy. He had a stressed birth and suffered a brain heamorage. As a result of that he had mild cp, has cortical vision impairement epilepsy. His seizures started with very mild absenses and now has constant seizure activity and has a wide range of mild to severe clonic tonic seizures. Surgery is not an option because damage was in the visionary area of brain. Is on 5 medications and seizures not controlled. 

Name: Brandi Smith | Date: Nov 21st, 2008 1:58 AM
I am an early childhood studies student and I have a few questions, if any of you would please give me your responses or opinions.

Do you feel that your child's school system supports your child's individual need? Why or why not?

Do you feel that your child is experiencing an unbiased environment while at school?

Thanks! 

Name: rachel | Date: Nov 22nd, 2008 1:33 AM
i have an 11yr old girl,she was 7weeks old when she started having seizures,she had 10 brain scans and all come back normal,we still dont no what part of her brain has been affected,she cannot speak,they said she wouldnt walk,but did when she was 4,she was having 60 fits a day at one point,then when she turned 7 she stopped and hasnt had one since. her mental age is around 2 or 3 

Name: Elaine | Date: Oct 27th, 2009 2:40 PM
My husband was diagnosed at the age of 40 having Cerebral Palsy. We got married just before he was diagnosed. I am having so many problems ajusting. I need afriend to talk to. Please reply. 

Name: tiffany | Date: Sep 18th, 2010 7:40 PM
I have a 23 month old daughter that just got diagnosed with focalized epilepsy and has speech delays and didnt walk until 18 months. She also has alot of severe food allergies. I took alot of seizure meds while pregnant with her but they said she did not inherite my epilepsy because its not the same kind. All her chromosome tests and dna tests came back normal and nobody can help me find an answer to whats wrong can anyone help??? 

Name: Tiffany | Date: Dec 9th, 2010 2:42 PM
my 2 yr old daughter has speech delays & other developmental delays. she was also recently diagnosed with epilepsy & has many severe food allergies. we cannot get a diagnosis on whats causing all the delays. she didnt walk until 18 months of age 

Name: lucy | Date: Jan 13th, 2011 9:54 PM
i have a 5year old dauhgter,who was diagnosed with epilepsy at 1 and half years old,has development age of 2 n half year old,and speech is at the same age,.now started primary school and starting speech therapy,think all seizures at a young age prob caused the delay,seizures r controlled better at mo but still has 2/3 seizures a week,...not enough help advice out there, 

Name: Antoinette | Date: Jan 20th, 2011 2:59 PM
Hi all, my boy is 23mnths and has epilepsy. He's also developmentally delayed. it all started when he was 4mnths old. he had severe reflux and had to have a fundoplication. But when he woke up after op, he started seizing.
The dr's gave him so many meds just to stop it. He had it in clusters. After 4mnths in hospital, he was on 12 different AED's !!! He was in a semi-coma for more than 6mnths. That is just inhuman! We discharged him and weaned him off all the meds and started him on the ketogenic diet. Now, a year later, his epilepsy is under control and his development is catching up.
We trust and pray that our Almighty God wil heal him.
He is getting physio, feeding therapy (he has a gastrostomy tube as he stopped eating when he was in coma) and equitherapy(horse therapy) to help him catch up with development.
So far, everything he does is a miracle, as dr's said he wil never smile, walk, talk ect. And guess what...he is smiling like never before!!
Hold on to your faith. Nothing is impossible for our Lord.
xxx 

Name: shauna johnson | Date: Jan 20th, 2011 9:42 PM
Please check out my blog. http://johnsonspecialneeds.blogspot.com
Life With a Child With Special Needs

Shauna Johnson 

Name: Russell | Date: Jan 22nd, 2011 4:41 AM
Currently have a 2 year old with uncontrollable epilepsy with the same developmental delays. If you would like to get in touch [email protected] 

Name: Shauna Johnson | Date: Jan 22nd, 2011 8:56 AM
My son Eric is 4 and has mild Cerebral Palsy, seizures, as well as global developmental delays.
Please check out my blog http://johnsonspecialneeds.blogspot.com 

Name: shauna Johnson | Date: Jan 28th, 2011 11:15 PM
My son Eric is 4 and has mild CP and seizures. I would love to help anyone in need...I started a new blog please take a look.

http://johnsonspecialneeds.

blogspot.com/2011/01/about-eric.html
 

Name: Srini | Date: Feb 17th, 2011 12:05 PM
My son Gautham is 22months old and is having myoclonic seizures 15-20 daily.

He is on valparin, lonazep, topamac and lamictor.

He smiles rarely and sit without support for some time. but his developments are severly delayed. We are going for daily Infant simulation and Physiotherapy.

Want to get in touch pls write to [email protected] 

Name: friend | Date: May 15th, 2012 10:31 AM
Do no give him any milk or milk products, bread and anything associated with glutaine. Try and what happens after several months. 

Name: stressed out | Date: Jun 1st, 2012 12:50 AM
I have a daughter with epilepsy, autism, developmental delays, ataxia. she is 14 and still wears diapers. another school year has gone and its the dreaded summer break. this means i will be spending the entire summer in the house. havent been on a vacation in 10yrs. My daughters behavorial issues are the main reason i cant take her out of the house, not even for a walk. she will get summer school but only 2 days a week for 2hrs. which she only will go a total of 10 days. Have no support system from any of our family. I feel like im in a dark dark hole and cant escape. so depressed....... 

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