Lasting effects of Infantile Spasms?

Tracy - posted on 10/03/2010 ( 15 moms have responded )

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My daughter, Abby, had infantile spasms from the time she was four months until she was a year old. Her neurologist told us that she will never walk or talk due to the spasms. I was just wondering if any of you other parents were told the same thing by your neurologist. If so is it true?

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Dawn - posted on 10/06/2010

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My son, Jake, was diagnosed with infantile spasms when he was 8 months old. At that time, he was exhibiting significant delays with his development. We were extremely fortunate in that the first medication we tried worked to control the spasms. Within about 8 weeks of beginning medication, Jake's spasms stopped, and he has now been seizure free for over 18 years!!! In fact, he has taken no medication in over 17 years!!! Although he was "late" in accomplishing a lot of those developmental milestones, he did accomplish them. Jake is now 19 and is a sophomore in college. Although he couldn't walk until he over two years old, he certainly made up for lost time when he figured it out. He not only walks, but he runs! He has played baseball since he was 4 (in fact played a year of junior college ball), he played middle school and high school football, wrestled, and ran track. We have been extremely blessed, because, as I'm sure you know, prognosis for these kids is often pretty bleak. I hope Jake's story can offer hope to the rest of you.

Phaeng - posted on 11/09/2011

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My son was diagnosed at 3 mnths and he's now 2yrs and walking, with a lot of help from PT anything is possible

Candace - posted on 10/06/2010

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My daughter started out with infantile spasms when she was 6 weeks old. She was transported to the hospital and was diagnosed with Aicardi Syndrome. Infantile spasms, retina abnormalities, & developmental delays are all apart of her syndrome. The neurologist was unsure if she would ever be able to sit up, walk, or talk. My daughter is now two years old and she just learned how to hold her head up. She can say a few words, but can't make complete sentences. She can't sit up or walk but she gets physical therapy, occupational therapy, and speech therapy 2-3 times a week to help her with everything. She's also seen a developmental pediatrician and the doctor said it really depends on the child and how severe their condition is.

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Gemma - posted on 01/07/2013

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no its not true but every child is different. my daughter had is and she has been off meds for 4 yrs but has recently started having seizure. she is delayed about1-2 yrs bt walks talks laughs plays everythingxx

Danielle - posted on 10/24/2011

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Hi there. My son had infantile spasms from 6 months old until 8 months old. He is now 18 months old and we are in physical and occupational therapy. He is just now learning to sit up and is combat crawling. We were never told that he would never walk or talk so I am surprised that your neurologist told you this. We went from one neuro to another because the first one knew NOTHING about IS as he claimed.

Sarah - posted on 08/22/2011

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My daughter was just diagnosed due to pachygyria. Basically the neurologist has said it is a great cloud of "I don't know", she may never or she may. It seems to all depend on exactly which brain regions are affected and how much, with even individuals with the same diagnosis ending up with other degrees of disability. It breaks my heart just to think the words. The doctors were only able to say with complete certainty that she will never be "normal" and will definitly have some level of disability. She is our sixth child and this is so unexpected, I do not know where to begin. I guess we go forward hoping the meds work and working with the therapist toward the best possible outcome for her.

Umm - posted on 10/18/2010

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Hi,
My youngest daughter was diagnosed with IS at 8 mos and the neuro told me those same horrifying words: she will never walk or talk! I knew then that he was NOT the right neuro to be on our team! I requested a second opinion and went to Boston's Children Hospital after my daughter completed a round of ACTH. The ACTH stopped the the seizures in their track but they slowly but surely came back. Her neuro at boston's children hospital put her Sabril (Vigabatrin) and she has been doing well. She does still have seizures every other month, usually at night while she is sleeping. And she is globally delayed in her development. But at 4 years old, my daughter not only talks in short sentences (me eat, slow down, me up, mama come, mama stopetc) she walks, runs and plays soccer. Shes in preschool and is in a mainstreamed class, --- where OT, PT, and speech therapist comes in for her three days a week, but she is thriving and is happy and getting stronger. You have to be an advocate for you child. You have to know that you don't have to accept their diagnoses. You have a right to work people who will work for your child.

Jessica - posted on 10/15/2010

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Hi Tracy, My oldest son Seth was diagnosed with infantile spasms when he was 11 months, the doctors put him on a medicine that was available in Canada called Sabril (or Vigabatrin) his doctors never said anything about not being able to walk, actually around the same time of his diagnosis he started walking, and he was already talking..he stopped haveing the spasms several months later and started having seizures, he was diagnosed in the womb with Tuberous Sclerosis, it's a genetic disease...but my son is 7yrs old now and is doing great, yes hes in a special ed class and still recieves speech and Ot but he's doing great!

Roz - posted on 10/06/2010

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My son was diagnosed with infantile spasms (caused by bilateral PVNH) at 7 months but had them from birth and they told me the same - prepare for him to be profoundly mentally retarded and his development to go back to that of a newbor. He had up to 10 seizures a day that lasted from 8 minutes to half an hour. He had ACHT therapy at 10 months. Long story short he will turn 7 next month and is absolutely normal, bright, and the only lingering effect the steriods had was to compromise the enamel on his teeth. There is hope. Never give up.

Michelle - posted on 10/06/2010

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Hi, my daughter was diagnosed at 6 months old and we were also told that there was a high probability of her being so developmently behind that she might not ever walk or talk. At one of her follow up visits due to the spasms coming back for a short time, the neuro even thought she would never regain use of her left side. That same daughter is in 3rd grade, takes dance classes, drama classes AND tennis!!!! It has been a long, hard road but there is hope!! We had to teach her everything as nothing came natural for a couple of years but to look at her now, you would never know!! Good luck to all of you! and May God Bless you and your babies!!

Robyn - posted on 10/06/2010

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My son had IS and it developed later into lennox gaustant. He will be 5 and is not walking yet. He does crawl and pull up. Our neurologist has said there is no reason for him not to walk and he may do it on his own time. I would get a second opinion.

Laurie - posted on 10/06/2010

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My granddaughter was diagnosed with IS at age 6 months. The doctors said the said thing...that she would never walk or talk. Her condition was later diagnosed as Lennox Gastaut Syndrome. Her seizures are not controlled by any medication they have tried for any length of time, however, they have lessened and seem "lighter". As far as the walking and talking...she walks and runs everywhere. Her gait is a bit unsteady but not enough to hamper her movement. She did fall a lot earlier on but she is 5 years old now and doesn't fall nearly as much. She doesn't speak but just a few words, however, she understand many things and is learning sign. She is starting to potty train and is doing very well with it as long as we remember to take her. She doesn't ask to go yet. She attends regular school and has an angel for a special aide. She adores school but rarely plays with others. She doesn't mind them being around but doesn't interact with them much unless it's to kiss someone on the top of the head. She is very loving. There are times my heart absolutely breaks because I want to have conversations with her and take her shopping for dolls and pretty dresses and then I realize how fortunate we are that she is doing as much as she is and that she is HAPPY!!! Her smile can light up the world. While I have days that I'm angry and bitter I am beginning to have more days that I'm thankful. She is such a blessing. We have no understanding or reason that this has happened to her. She has a perfectly normal birth. Her seizures started within days of her six month shots. I sometimes blame that but now that I think about it she was a bit delayed in some of her other normal baby things of course that might have just been a little slower developement. She is definitely mentally impaired to a certain extent. She suffers from SEVERE hyper activity. If we could ever get the seizures under control and get the hyperactivity under control I think we would see a different child...one who could be still long enough to learn and absorb. Get a 2nd opinion...get several in fact and push - push - push for therapy for her. There is much support and help out there but you have to demand it. God Bless You and your daughter and all the children and families dealing with this. These kids are true HEROS!!!

Victoria - posted on 10/05/2010

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my daughter was diagnosed with IS at four months old as well, but they stopped after five days. she is now 6 months old and hasnt had any seizures since the week of episodes when she was 4 months old. she was put on prednisone for 2 weeks during that time and hasnt been on it since. did either of you find out an underlying cause? i am hoping i dont see anything come back later on.

about the neurologist telling you your daughter wont be able to walk or talk- i have a friend who has a daughter that was born with a very uncommon epilepsy called Durets (sp?) her neuro told her Abby (her daughters name as well) will never be able to walk or talk with this type of syndrome. My friend got a second opinion and Abby started walking a year ago. She was 2 years old when she started to walk, she is also saying clear words now. I would recommend you get a second opinion.

Tracy - posted on 10/05/2010

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Beth~ Yes my daughter is in therapy. She has physical and speech weekly. She has come along way with the therapy, I was just wondering what other parents were hearing from their child's neurologist regarding the long term care for their child.

Beth - posted on 10/04/2010

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my son has also had infantile spasms since 4 months old also. we were never told he wouldnt walk or anything. my sons neurologist just told us it would put his development behind than normal and that he could have development issues his whole life but was never told anything like walking or talking. my son is 16 months old and he still cannot sit unsupported but he is catching up slowly. his spasms have pretty much stopped now but he is having a new type of seizure which we dont have a diagnoses of what kind yet. is your daughter in any kind of therapy? my son has physical therapy once a week and it has helped him a whole lot. hope this helps you in some way

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