does anyone have a child with epilepsy/developmental delay possibly more?

Lisa - posted on 09/22/2012

I have a question. My infant had a 24 hr eeg. If she did not have a spasm while doing the test would it come back normal? Can a eeg detect seizures from previous days?

Samantha - posted on 09/09/2012

Hya my daughter is now 2 years old she was only 6 months wen she had her 1st fit with high temperture and also delay she didnt sit till she was nearly 2 and after her second birthday she started crawling now she can walk but still wobbly she been on eplin now for 13 months and it have made a hugh difference bur it don't stop the fits all together she had 7 huge 1 3 days ago and now gotta have a load more tests done and the doctors still thinks she not got epilepsy hope this helps

Caroline - posted on 07/04/2012

My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, drooled constantly, developmentally delayed, frequent body tremors, some seizure like episodes, kind of in a daze all the time, clenched left hand, choking on her food, speach problems, left side weakness etc. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how it’s made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

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Linda - posted on 09/17/2011

Find a new doctor!!!!!!!

Fati - posted on 09/17/2011

My name is Fatima Patel, a graduate student from the Department of Nursing at Depaul University. I would like to invite you to participate in my research study that investigates the Caregiver's perspective on caring for a child with epilepsy who has a gastrostomy tube (G-tube). You may participate if you are a parent of a child with epilepsy who has a G-tube. Please do not participate if your child is under 1 year of age or over 14 years of age.

As a participant, you will be asked to take a survey that will take about 15 minutes.
All your responses will be kept anonymous and confidential. You may decide, at any time, to stop taking the survey if you change your mind. The results from this research may be used to improve the education and training caregiver's receive regarding the G-tube.

If you would like to participate in this research study, please follow the link to begin taking the survey: https://www.surveymonkey.com/s/Y35N9NF

If you have questions, please contact me at fatimama1@yahoo.com or you may contact my research advisor Lori Thuente, at LTHUENTE@depaul.edu.

Amber - posted on 04/20/2011

My son started having developmental delays at 6 mths, he is now 2 years old, he cant sit, crawl or walk, but with the help of physical therapy, occupational therapy, and a developmental coach that comes to our house each one once a week, he is improving, on the other hand he is epileptic, back in november of 2010 he started having partial complex seizures where is eyes shift to the left and his head, and he goes stiff, they would last anywhere from 30 seconds- 3 minutes, He had 15 in a 30 hr period and was transported to Texas Childrens Hospital in Houston, Texas...from there we had 2 eeg's to scan the brain waves just to make sure that he was having seizures, I would suggest having your dr. write a order for these tests! From there the neurologist referred him to a genetics specialist to evaluate the developmental delays and epilepsy to determine if there was a genetic problem, we have been several times to see the genetics specialists as well as a follow up with the neurologist and we have yet to find whats wrong with my son! If you feel you need these tests its the first step to recieving help as far as medicines to control the fits! My son takes two doses of Zonisamide a seizure medication daily! Since we started using the meds he is blossoming like he should, although he is still at a 6 mth developmental level, other than the developmental delays of a 6 mth and the epilepsy he is a wonderful child very happy and is a normal child otherwise! Good luck in all your decisions, and it may take pushing the issue, thats how I got help in finding out about my sons epilepsy and developmental delays!

Amber - posted on 04/20/2011

My son started having developmental delays at 6 mths, he is now 2 years old, he cant sit, crawl or walk, but with the help of physical therapy, occupational therapy, and a developmental coach that comes to our house each one once a week, he is improving, on the other hand he is epileptic, back in november of 2010 he started having partial complex seizures where is eyes shift to the left and his head, and he goes stiff, they would last anywhere from 30 seconds- 3 minutes, He had 15 in a 30 hr period and was transported to Texas Childrens Hospital in Houston, Texas...from there we had 2 eeg's to scan the brain waves just to make sure that he was having seizures, I would suggest having your dr. write a order for these tests! From there the neurologist referred him to a genetics specialist to evaluate the developmental delays and epilepsy to determine if there was a genetic problem, we have been several times to see the genetics specialists as well as a follow up with the neurologist and we have yet to find whats wrong with my son! If you feel you need these tests its the first step to recieving help as far as medicines to control the fits! My son takes two doses of Zonisamide a seizure medication daily! Since we started using the meds he is blossoming like he should, although he is still at a 6 mth developmental level, other than the developmental delays of a 6 mth and the epilepsy he is a wonderful child very happy and is a normal child otherwise! Good luck in all your decisions, and it may take pushing the issue, thats how I got help in finding out about my sons epilepsy and developmental delays!

Joni - posted on 10/14/2009

First of all, don't wait to get intervention. Early intervention in the key, as well as a good pediatric neurologist. My daughter had her first seizure in the hospital when she was only 40 hours old.. She's been in therapies since she was 4 months old. She also has abnormal white matter in her brain. She's almost 5 years old now. It's tough now, but it gets better, I promise. Demand that someone explain the MRI in detail to you, and get in contact with an early intervention program ASAP!!!! I don't know what state you're in, but I believe every state has a program. Check with you pediatrician's office or a nearby Children's hospital, they can get you in touch with someone!.

Christine - posted on 10/13/2009

Hi, my name in Christine and I have a daughter named Madison who has Tuberous sclerosis complex and I was wondering if they have ever looked at that as a cause of your sons seizures and adnormal mri's.

Christina - posted on 10/06/2009

ive got a 6 yr old that has the delays like your son when she was growing up. she didnt sit till she was 8 mos, crawl till 12 mos, walk till 17mos. her speech is still delayed, and learning this is her 2nd year in kindergarden, and she had headstart and pre-k. and we just found out this year about the tuberal mass in her right frontal lobe. and i can tell you from one mom to another dont give up and make those dr.s do their job. you are all he has as voice to tell whats going on. and who knows him better than moma right. hang in there i wish i could say it will get better. but the truth is your the one that will get better at it. ill keep you in my prayers and hope for the best.

Heather - posted on 10/02/2009

Delayment for my son has been a major concern for me. He rolled at the age of 20 months, sat up at age 14 months, grabbing for toys 18 months, hand transfers, 20 months, i still hold his bottle, feed him myself. Any moms out there that want advice on what seizure med is better i recommend nova topiramate. he started this medication in June and since then he has improved greatly by 3 months, till this point he was acting the age of a 6 to 9 month old baby. Good Luck.

Heather - posted on 10/02/2009

I understand where you are coming from. My son at the age of 4 months old had a seizure that lasted 45 mins long. Because he would keep having them they had to put him in a coma, he was in a childrens hospital for 8 days. When he came home he was a new born baby all over again. It was frustrating. Doctors told me he had a brain infection which caused the seizures. Up to this point he has been on 3 different seizure meds, not mention he still has seizures on a regular day basis. He was left with severe brain delayment. Just started crawling ( he's now 23 months) he has poor motor skills. M.R.I keeps coming up clear. They are unsure. He is lactose intolerant, acid reflex and has seeing problems.
Hope you are able to find a neurologists to help you with these answers. Do you have any community help. My son has a physio team, and we see the doctors on a monthly basis.
Always remember to keep you chin up, even when things are really bad. Your child counts on you, I know my does. If you need to talk, I am here to listen.

Michelle - posted on 10/02/2009

Not telling you what to do, but you should really look into Rainbow babies hospital or even shriners! Demand answers and dont leave the hospital until something is done! My son is showing developmental delays and he is 8months... I am looking into getting a second opinion at Rainbow babies, since theyre close to home...But I have heard both places are TERRIFIC and will dig deep to find answers. If money is an issue, or need a place to stay, definately look into Shriners... I know that the one in florida works extensively with epilepsy!

Nicki - posted on 09/27/2009

My little boy is now 3years and 2 months, he had his first seizure at 2years 3 months. he was having them about every 2 to 4 weeks but they were lasting nearly 20 minutes. This is now being controlled by medication .He has just started walking about 3 weeks ago, didn't even roll til 9 months. His speech is still at mum , dad , nan and other baby noises. He also had abnormal white matter on an MRI scan. Has a list of other problems, including feeding difficulties as a baby, low muscle tone, hyper flexible joints,bilateral congenital hip dislocation, undescended testes, narrow airway, middle ear hearing problems, long sighted with an intermittent astigmatism. He was diagnosed late last year with a rare chromosome condition. Hope you find answers soon.

Tricia - posted on 09/25/2009

Does your childs arms and upper body thrust forward during these fits? Do they occur when he is going to sleep or waking up? You child could be having infantile spasms-my son was diagnosed at 6 months, and it sounds quite similar to what I was seeing - clusters that last a few minutes. You might want to consider seeing a pediatric neurologist.

Katrina - posted on 09/22/2009

i have a 2 year old daughter that has cp, siezures, globle developmental dely, microcephly, and other things. i know how hard it is because i deal with all those different doctors. everything will be all right. just take one day at a time

Jenniffer - posted on 09/22/2009

my son had a brain bleed at birth witch i didnt know about till he was 4 because he was having seizures and I kept takinghim in. he has abnormal white matter scare tissue. yes he has been a slow learner all goes back to the scrae tissue. He didnt talk till he was 3 and he didnt wat till he was 18 months old and never crawled on all 4s. Please go see some one else take to a diffrent city if you have to. I listend to what the docs were telling me and they thought I was crazy. then when my son was 4 I took him some were else and they did so much for me. they answerd all my / and I was not crazy

Kelly - posted on 09/22/2009

Debra, i just read your post. My daughter also has infantile spasms & started at 2wks old. What meds is ur wee girl on?? My daughter has major development delay, she doesnt smile, sit, reach for toys or respond 2 her name, she does have great head control & rolls everywhere, can get up on all fours but then just flops over,lol. She is starting to show signs of sitting with help. Look forward to hearing from you.



Kelly

Judy - posted on 09/21/2009

My son is 26 now. Has had seizures since age 4 and has become developmentally disabled from the years of seizures. We tried brain surgery, Vagal Nerve Stimulator, Ketogenic diet and every medication known and he is not seizure free to this day. He was diagnosed with Lennox-Gastau seizures which is many kinds of seizures. We've been through a lot over the years, if you have any questions or need support, I'm here.

Debra - posted on 09/20/2009

hi my little girl has seizures she's been diagnosed with west syndrome at 6months old she is now 2 and 9 months, her development is delayed she can crawl and cruise with furniture, she has no speech and never a day goes by when she doesn't have a seizure we have tried lots of different meds but non have made her seizure free xx

Jen - posted on 09/19/2009

I just wanted to reply to your posting,,,,, it touched me so much, My 10 year old son started having seizures at 3 days old,,, so we have been dealing with epilepsy all of his young life, as well as develop mental delays and a variety of other things.... I am also looking for support as well as possibly being helpful to you as well. If you are interested in speaking or typing,,,, send me a line....

Debbie - posted on 09/19/2009

My son is 7 & was diagnosed at 2 with complex partial seizures left temporal lobe/insula focus.Well thats after the doctors told me i was a paranoid mother & there is nothing wrong with him.After demanding they keep us both in hospital over night 2 see 4 themselves he was finally put on tegretol.His dose has gone up & dwn over the years.If its 2 high it makes him fall asleep during school,if its 2 low he has fits.He is having a lot of probs at school.He can not read & can only write his name.His teacher said he has short term memory loss.But it only seems 2 affect his school work.Does any one have the same problems????????

McKell - posted on 09/16/2009

My daughter is 11 now and the most important thing I have learned (she began having seizures at 9 months) is to find a nuerologist you like and trust we have seen a lot of doctors and we now have one we really like. Remember that they are working for you and your child and that you know your child better than they do. As far as the delays go you really need to get the "seizures" under control in order for further progress to be made. They really just cannot progress when their brains are constantly seizing!

Linda - posted on 09/14/2009

Find a pediatric neurologist and get a second opinion. I don't know where you live, but is there a children's hospital you can go to for help? A doctor who is not trying to treat the seizures is not doing the job right. There are many medications on the market to try. Yes, it may take some trial and error to find the right one or combination for your son. And when you find a medication that works, don't let the doctors try to change it just because something new has come along. Remember, you are the parent, you are in control. I say all this having raised a grandson with seizures and mild retardation along with being ADHD. You will be frustrated sometimes, you will want to shut yourself in a closet and scream your head off. I know I did. Find a epilepsy support group to get into. Talking to other parents in the same situation will help a lot. Also, realize that sometimes there are no straight answers, there are only best guesses. My grandson had seizures every time he ate when he was small, now they come when he goes too long without eating. His mri's have never shown any irregularities, so no one can tell us why this now 24 yr old young man is still having seizures. Keep a log of when your son has seizures and what occurs shortly before. Is there a change is weather, over-activity, over-heated, what time of day or night. All these things will help in your son's treatment. I hope this helps. If you wish to talk more, look me up on facebook. Best wishes and God be with you.

Linda

Stefanie - posted on 09/13/2009

My son is 2 1/2 years old. When he was 2 months old he began having "fits" as well. He would scream and hold his breath and arch his back and hold his fists tight up by his head. Does your sons fits resemble that? He would do this a good 10 -15 times a day for no reason at all. We would ask the doctor evey time what this could be. We just knew something was wrong but this was our first child as well. Doctor said babies hold their breath at times...which my husband did as a baby and so did my dad. In a MRI done when he was 7 months old, they stumbled across him having Partial Agenesis of the Corpus Collosum. Until my son was 18 months old, he was told these were breath holding spells until he had his first visible seizure a year ago. My son is very delayed. He can not sit by himself very long either. We have PT, OT and Speech. Once he had this seizure it all made sense. If someone would have took this more than breath holding at 2 months old then he would be much further along. His seizures come in clusters and they look like spasms. He was told he had Infantile Spasms and that he was having them at 2 months old. But another Neurologist said he would never have a normal EEG with Infantile Spasms (which his have all been normal)....so they tested ARX (genetic test for Infantile Spasms). So now we know they are not Infantile Spasms now....we have no answers to why he has them. He is on Dilatin and Phenobarbital and has has as many as 40 a day. When he had his seizure a year ago he became a happy baby immediately after being given his first phenobarbital does in the hospital. He began smiling and bearing weight more and sitting better as well. He has came a long way this past year. Every day he gets stronger and sits a little longer by himself. We have had to switch Neurologists because our old one only wanted to do a EEG and prescribe medication. Never seemed insterested in finding the cause like I wanted. They just would always say well he as a brain abnormaility so that is probably why. We still to this day do not know why he has them, what is causing them, what type they are etc. His new neurologist is actually looking for the reason. He tested him for Rett Syndrome 2 weeks ago and our next step is a Spinal Tap to test for folic acid, metabolic etc. We have had genetic testing done and it came back all good and every EEG has been normal. Please do not consider these fits without seeing a neurologist. I would hate for you to go 16 months with having"fits" like we did.

Sarah - posted on 09/13/2009

Hello, When I seen your posting it borught me to tears, that is a spitting image of my daughter who is now 4, i have been dealing with this for 3 years now, she didnt get dignosed with epilepsy untill she was 2 so for a whole year I or the Dr didn't know what was wrong with her. Her seizures are atonic seizures which means it's generalized (all over the brain) but mostly in the frontle lobe, She has drop attacks, she does not lost concesness she JUST FALLS, thats why it took so long to dignose her. She was not hiting her mildstones as a baby but of course being a first time mom, you get advice from other people who have children and they all say, Oh....they all do things diffrent so you let it go. DONT that was my first mistake. Her first seizure (that I know of) was a feverable seizure she got a temp really quick and she had a seizure. she did not sit up by herself until she was 12 months old she didnt start walking until she was 2 she is 4 and is still not potty trained. I noticed that she started just falling every once in a while, for no reason, but she would get RIGHT back up....sometimes she would hurt herself.....then it got more frequent. I took her to her DR (who was a blessing) and told her the things she was doing and she sent me to the hospital that day and got an EEG and an MRI they of course showed seizures and little white masses in the tracks of her brain (was told not to worry about them, they were almost like freckles) but they wanted to watch them. SCARY!! they put her on Keppa right away, and she was Great, turned into a diffrent child, for the better, but every couple of months she would have her drop attacks and they would have increase her meds. Now that she is 4 and has been on keppra for 2 years. she started getting them very often like 6 or 7 times a day so her Nero told me to admit her into the hospital to do another EEG and MRI, so we did, the seizures did not get worse just more focused in the frontal lobe but her MRI DID NOT SHOW the white masses or freckles her nero told me she probably grew off of her brain. They said that her keppra stoped working so the added Depikine (they couldnt just take her off the keppra she has to be weined off of it) but she wanted to do an MRI every 6 months to make sure! She has been on this new medication for a month or so and has not had a seizure yet, and again, she has turned into a totally diffrent child for the better! She is being tested for Autism right now because of her delays..... they think she is Autistic but very high functioning . she is right now going through genetics and metobolics testing to rule out anything else other than seizures and autism. I would def. not take your child to a reg dr, I would find a good Nerologist and take it from there, but we are in the same boat! If you ever have any questions please ask me.

Thank You

Sarah

Becky - posted on 09/11/2009

I'd get a 2nd opinion. Every time children have a seizure there's a risk of brain scarring so obviously the doctors should be trying to prevent them. It's also extremely stressful for you to have to deal with this happening so often.

My son was born with temporal lobe dysplasia (the right temporal didn't develop properly) & this caused him to have seizures which were not self-limiting & went on until they were stopped in A&E. Thank god he's now on Tegretol & hasn't had a seizure for 4yrs!! Unfortunately he does have learning difficulties as the part of brain affected is comprehension & he's only just learnt to ride a bike/tie shoelaces & can't tell the time although he's 11.

BrendaLee - posted on 09/10/2009

Wish you all the best with him, especially since you mentioned the MRIs. I hope that someone can "enlighten" you and treat you like an intelligent human being with valid questions, unlike my experiences.

My daughter, who is 13, had her first seizure at 3 months old. Since she also has a food allergy, it was difficult to determine what was causing her fits. It did not help that her pediatrician refused to listen to me or believe what I knew. She skipped over crawling in favor of scooting on her bum, and then pulling herself up to walk. Hit all of her preschool milestones on time. Yet, she had difficulties in school, despite her intelligence. Specifically, fine motor skills and social delays... which she required three years of occupational therapy for. Now she is seizure-free (that we know of) and has been off of Lamictal for five years. Still would feel comfortable with an EEG, though, since she just hit puberty. (Many people that I know experienced a sharp increase in seizure activity during puberty until their hormone and stress levels adjusted.) However, she is still prone to crying in class when frustrated or staring silently at the teacher. It raises the issue of whether she is still having partial complex seizures, or if she is just so overwhelmed by confrontation.

Christina - posted on 09/10/2009

When my now 5 year old was in the womb still we discovered that he may have water on the brain. Since the ultra sound doesnt tell you much we had to wait until he was born to find out what was actually going on. When he was 1 year old he had an MRi and we were told that he has brain damage to the left side of his brain. his MRI was white in many places on the left. We then found out that he had a stroke while in utero. He doesnt use the right side of his body like he should and he was very delayed in many aspects of life. He learned to walk completly on his own without a walker when he was about 3. and he still has issues. he does PT, OT, and ST weekly and while at school and gets a little at home. when we first found out of his condition we were told he would be far behind other kids his age. as he was in the beginning, he is now only 4-6 months behind now and that is so much better than what docs have told us. It is very stressful to the parents, the siblings and not to mention himself. If you feel that way about your sons doc then you need to get a second opinion. My son has been on many different siezure meds and is now steady and siezure free for 2 years now. it is called depakote, but remember every child is different. I hope all goes well for you Teigan and your beautiful son. Good luck

Fiona - posted on 09/10/2009

Hi , my daughter started having infantile spasms (seizures) at 4 mth old. She use to have up to 160 a day and once had over 300. They were also very strong. She is now 2 and a half and still get a few spasms a day but much milder and mayber 2 to 5 a day. However she is now having tonic, absence and myoclonic seizures. She has gone through abuot 13 meds and the ketogenic diet. She is not sitting unaided, crawling, talking etc but we feel she is beginning to under stand alittle She is very happy and always smiling but its heartbreaking for us. I suspose all you can do is try everything and anything that you think may help. We worry so much about our daughters future but we know whatever her future holds she brings us so much joy! xx

Michelle - posted on 09/09/2009

so he is on no meds at all????

Sara - posted on 09/07/2009

what do your son's fits look like? it sounds like what my son matt did when he was a baby he is now 14. feel free to contract me at sarapicken@yahoo.com

Donna - posted on 09/07/2009

My daughter was diagnosed with partial complex seizures just before she turned 4. The EEG showed some spikes in the temporal lobe and the MRI was inconclusive (no mass occupying lesion) for signs of dysfunction. The neurologist put her on meds (Tegretol or carpamazipine) to control seizures. She did very well and did not have seizures on meds. Since the cause was unknown, after 1 1/12 years they weaned her off of meds.



She started having seizures about 7 months later. She was starting 1st grade by that time and had no developmental delays. She was reading independently and spelling well using phonics. At first the seizures were occasional, 1 every couple of days, then they became more frequent. The neurologist would not put her back on meds even though she was having several a day. After about a month of that, she had continual seizures that landed us in the ER where the docs had no clue what to do and the neurologist put her on clonipin, which did not work and just made her sleep.



After that fiasco, my pediatrician and I sought a second opinion and went to Hopkins. The neurologist there said that due to her history, the minute she had another seizure she should have been put back on meds. He did an EEG which replicated the earlier findings and put her back on tegretol. When she returned to school right about two weeks after the fiasco she couldn't function independently, didn't recognize letters and had lost the ability to read. Some of her classmates she could not recognize..this is not normal!!!



To shorten this very long story, my daughter is now almost 13. After trying to wean off meds again, the neurologist did an MRI and found that she had a genetic disease called "tuberous sclerosis" which forms plauqes in the white matter of the brain causing misfires. This will never go away so she is on meds for the rest of her life. She has caught up somewhat but is probably still emotionally on the scale of a 10 year old. She doesn't get the nuances of language or understand social cues; however she has never regressed since the first time.



I URGE you to seek a second opinion. Seizures can and do cause developmental delays and even occasionally cause more damage. There is no way I would ever say that meds cause more harm than good and anyone who believes that is doing their child injustice.



I am now doing some research in the area of tuberous sclerosis with a wonderful genetecist and would be more than happy to answer questions about this or be of support if anyone else has gone through this.

Susan - posted on 09/06/2009

My fifteen yo daughter has epilepsy, moderate mental delays, high functioning autism and arthritis. Fight until you get answers, eventually you'll get them even if only to get rid of you! lol

Katrina - posted on 09/04/2009

hi my daughter is 2years old and she was born with having siezurs since she was born. she also has globle developmental delay. she has other stuff wrong just cant remember right now.

Beverly - posted on 08/27/2009

FIND A NEW NEUROLOGIST! your son should have some type of medicine to help control those seizures. My daughter Tifani has had Idiopathic Epilepsy since she was 6 mos. old has been taking various medications since then. She is now 16 years old. She functions at a 2 yr old age level. She has the abnormal white matter on her MRI also. She doesn't speak but does make sounds & can understand what you are telling her. She has been diagnosed as having Autistic tendencies. Not a full Autistic diagnosis. Don't be afraid to stand up & say something to your medical team. You are your child's only advocate. It took Tifani till she was almost 3 years old before she walked. We have traced her seizures back to her 3rd DPT shot. You may want to trace back to his first seizure & when he got his shots.

Laura - posted on 08/26/2009

I would say trust your mom instinct!! If you think something isn't right with your child it normally isn't! I questioned that something was wrong with my son since I delivered him and was told he's fine....after many many months of searching for answers and many doctors I was finally told he was having seizures......It took a full 8 months for a dr to finally listen to me!! Please remember you are the voice for your child!! If you don't like the way you are being treated by a dr you have the right to get a second, third, or fourth opinion.......keep pushing until you feel you have found the answers......

Teigan - posted on 08/23/2009

thank you to all of u that have posted something on here were taking all ur advice and are starting to makesure we are heard...i know its a long process but with support from all of u out there i am begining to feel more confident that there will be treatment and support for our little boy.thanks

Yvonne - posted on 08/23/2009

My daughter is 14 and also has developmental delay. Its hard waiting for all these experts to give you answers, I hope you get some answers soon.

Cassie - posted on 08/23/2009

My daughter was diagnosed with stimulus sensitive myoclonic epilepsy. She does have a speech delay due to the seizures. When you say "fits"...can you explain a little better for me? The first medication that the dr's started chloe on made her go into what i called "meltdown mode". She would be fine one moment and simply saying...oh no honey..don't do that...she would drop to the ground and start banging her head on whatever was handy. Walls...concrete...doors...counters...floors...you name it...she'd bang her head on it. She had a huge bruise in the middle of her forehead within a matter of hours. It got so bad that I borrowed a high chair from a friend that had shoulder straps on it in order to keep her forced back so she couldn't lean forward to bang. We started this medication on a friday night...by saturday I could tell something wasn't right..she was crabbier than normal...she almost stopped eating...by sunday...WOW...she was barely eathing ANYTHING...that's when the head banging started...she had a HORRIBLE temper that we had never seen before. One of her brothers gave her a hug and she bit him so hard that we could see teeth marks THRU his clothes! It seemed like she cried NON-STOP. By Monday...I was done! :-) I called our neurologist and said she needed to find something else or I was taking her completely off! Her quality of life was WORSE then what she was before medication. I have 4 children..so...temper tantrums happen...but this....was the WORST thing i've ever experienced with any of my kids!



The best advice I have gotten (after chloe's diagnosis) was that YOU know your child better than anyone else! YOU have to fight for him/her...they can't fight for themselves. Don't let someone tell you to not worry about it....if YOU'RE worried about it...a good doctor would also be concerned about it.



Good luck!

Amy - posted on 08/22/2009

My son is 12 years old. He has had epilepsy since he was 2 years old. He is currently on 2 meds to control them. No seizures for the last 5 months. He has developmental delays. He reads at a 2nd grade level. Has a sensory disorder. I feel as if every seizure has set him back. This is the first summer we have made it through. Without a seizure. His tend to trigger from overheated, exhaustion. He also shows the white matter on his mri .

Sandy - posted on 08/21/2009

My daughter Rachel has infantile spasms, and the mental retardation and mild autism that so often goes along with it. She is 16 now, and we're still working hard at making a life for her, even though she has been seizure free for 8 years now. I would be glad to correspond with anyone who could use support or info from someone who's been doing this a LONG time!

Anesa - posted on 08/20/2009

My son is 6 and was diagnosed with epilepsy when he was 3. I kept taking him to the neuro but the neuro could never find any abnormal brain activity. Finally, when he was 3 our developmental pediatrician put him in the hospital for a 24 hour EEG. He had about 60 seizures in that 24 hour period.

Looking back I wished I would have video taped my son to show the doctor...but I just didnt know. He is doing much better now, but can still have up to 5 a day. He is now profoundly developmentally delayed.

Good luck to you! Please know that your child depends on you...they can't get the help they need by themselves. Dont stop til you get an answer that satisfies you!

Misty - posted on 08/13/2009

My daughter is almost 3 and has only been walking for about 7mo and talking 4mo she has seizures and developmental delay they have her in medication for her seizured however they do not always take her very seriously i no how u feel she also has a gentic disorder they look at her like a normal child and she is not its hard but u get thru it it also helo to research other drs and hospitals in your area to get another opinon i wish u the best of luck

Sarah - posted on 08/12/2009

I have an 8 mo. old that has infantile spasms (another name for epileptic seizures that use both sides of the brain to seize) he can have up to 7 "episodes" a day with as many as 30 seizures at a time. Sometimes you lose count when grabbing meds. so there may be more. We are constantly on 5 different meds twice a day and one 3-6 times a day. Unfortunately he also has a brain malformation which makes them hard to control. For the most part they are minor and if you weren't paying attention you'd miss them unfortunately they have started to change (as the Drs. said they would) and are growing more intense and he's actually having convulsions. He's on such high doses of meds. that he is behind developmentally and we are seeing an Occupational Therapist, a Physical Therapist, Development Internist, and soon a Speech Therapist. We've only been seeing the OT, PT and DI for 1 month and can see a BIG change. He used to just lie on the floor or in your arms, now he is able to sit on his own with little support and even trying to stand with support. We are going back in the hospital on the 24th to begin a new diet that consists of a more fatty and protein diet that may or may not help. I will say there is a hospital in Cleveland, OH that we are looking into for a 2nd opinion as far as controling his seizures if the diet doesn't work. There are hospitals specializing in neurology all over. Google it and see what you find. There may be one near you. I know how difficult this is but the sooner you find someone to help or atleast try to help the better. Keep up the faith and know there are others dealing with the same thing (or about the same thing) that you are.

Tammy - posted on 08/12/2009

hello Sade.. I think the most important thing i can tell new parents with children or even babies with seizures and developmental delays is early intervention!!!!!you got to get your kids in those programs ....I know my daughter is as good as she is because of them.When this all first happened to my daughter, the doctors gave me no hope of her being normal in anyway.. that she would not walk or talk or even be able to learn concepts or learn to read.She is 20 and she can do all those things,she is mentally retarded but it is mild and she does have a speech problem, but also mild, she may never drive a car or even live on her own, but she does so much for herself.she even cooks some.SO just know these kids can grow up and do for themselves and become people who have lives and love and hopes and dreams.Don't listen to any doctor that would tell you to give up on your child.I have seen many miracles in my daughter's class mates and in jessica herself.The biggest thing I can say is if you don't want to be cleaning them and feeding them when your child is 30....Then you better get to treating them as normal now as you can and teach them to do it themselves... for themselves!!!!!!!!!!!!!!!!GOD BLESS!

Sade - posted on 08/12/2009

MY SON HAS A DEVELOPMENTAL DELAY/ EPILEPTIC DISORDER AS WELL, TO KNOW MORE PLEASE RESPOND BACK.... THANKS MUCH IN ADVANCE(I NEED SUPPORT TOO)

Alice - posted on 08/12/2009

Hi I have a 2 year old daughter that was diagnosed with seizures when she was 3 months old. So now being two and still having seizures she has a speech problem, she didnt walk until she was about 18months. she doesn't ran correctly and every time she has a seizure it affects her left hand. Right now in 2 weeks she has had 114 episodes. They are not fits...to me a fit is something that can be controlled without medication. A seizure is something that is not controlled unless on medicine. If they are lasting longer than 2-3 minutes and having as many as you are saying then he really needs to see a professional that deals with seizures...let me tell you my daughter was 3 months old, The side effects of treatment is far less worse than letting them go and months later finally finding out there is a problem. I DID GREAT FOR MY DAUGHTER . YOU ARE YOUR SONS VOICE...Tell them you want soemthing done and don't stop until it is properly diagnosed! I hope goes well for you. I know how fustrated you are because I am dealing with the doctors lack of diagnosing and getting proper trreatment like she needs. It's a very complicated thing to deal with because the doctors don't know much either about it. I HAVE BEEN GETTING ALOT OF THERE'S NO GREY AREA...IT VARIES FROM CHILD TO CHILD...Keep on them and they will eventually have to do something different or you will find someone else that knows what is going on. GOOD LUCK!

KRYSTL - posted on 08/12/2009

my son has delays and has almost been seizure free for two years. Yes tell the doctor he is having seizures NOT fits!! If you dont want to try medications you can try the food diet they have for them. I have not tried it for my son but one of his schoolmates has to eat a certian food 12-15 times a day. I think its just high protien snacks. Ask your doctor about this or you can look it up online and see about it.

Christina - posted on 08/11/2009

I would not wait for treatment. My son began having seizures at age one. Once we got the seizures under control and got some therapy he caught back up developmentally.