Discussions By Condition: Congenital conditions

Infantile spasms

Posted In: Congenital conditions 6 Replies
  • Posted By: GCwoodruff
  • November 30, 2009
  • 04:23 AM

Hello,
New to the site and concerened about my 3 1/2 month old having infantile spasms. We've looked on the internet and are just trying to get as much information as possible regarding the spasms because some of her movements seem worrisome. The videos we've seen have had a broad spectrum of what a spams looks like and at her age it's difficult to tell if some of her movements are cause for concern. Thanks for any helpful responses.

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  • Hello,New to the site and concerened about my 3 1/2 month old having infantile spasms. We've looked on the internet and are just trying to get as much information as possible regarding the spasms because some of her movements seem worrisome. The videos we've seen have had a broad spectrum of what a spams looks like and at her age it's difficult to tell if some of her movements are cause for concern. Thanks for any helpful responses.I have a daughter with Infantile Spasms...perhaps I can help, she started having IS clusters at 4 months of age. We too have seen videos of others having a cluster and they are all a bit different but the trait they all have is this crunch that involves the head, arms, and sometimes the legs, essentially crunching into the fetal position.Who have you seen for a diagnosis? ie Pediatrician, Neurologist, etc. What state are you in, and what health organizations have you worked with? I would like to help guide you to a place that may have more knowledge/experience in IS.Kevin
    Anonymous 42789 Replies
    • November 30, 2009
    • 01:13 PM
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  • Hello,New to the site and concerened about my 3 1/2 month old having infantile spasms. We've looked on the internet and are just trying to get as much information as possible regarding the spasms because some of her movements seem worrisome. The videos we've seen have had a broad spectrum of what a spams looks like and at her age it's difficult to tell if some of her movements are cause for concern. Thanks for any helpful responses.My daughter was diagnosed with Infantile Spasms at 4 months. Each person with IS has a bit of a different manifestation of the spasms, but in general feature a head crunch, arms/should inward flex, and legs may crunch upwards to the body... essentially a fetal position.Would be happy to answer questions...what doctors have you seen (i.e. Pediatrician, Neurologist, etc), what state are you in, and what health systems have you used?--kevin
    Anonymous 42789 Replies
    • November 30, 2009
    • 07:32 PM
    • 0
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  • Hello,New to the site and concerened about my 3 1/2 month old having infantile spasms. We've looked on the internet and are just trying to get as much information as possible regarding the spasms because some of her movements seem worrisome. The videos we've seen have had a broad spectrum of what a spams looks like and at her age it's difficult to tell if some of her movements are cause for concern. Thanks for any helpful responses.My daughter was diagnosed with Infantile Spasms at 4 months. Each person's spasms may manifest a bit differently but in general the head crunches down, arms/shoulders flex in, and legs may crunch up towards the body. I would be happy to answer any questions. How many times a day does your child appear to have an episode? What state are you in, may be able to refer you to a specialist. What doctors have you seen so far (i.e. Pediatrician, Neurologist, etc)?--kevin
    Anonymous 42789 Replies
    • November 30, 2009
    • 07:38 PM
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  • My daughter was diagnosed with Infantile Spasms at 4 months. Each person's spasms may manifest a bit differently but in general the head crunches down, arms/shoulders flex in, and legs may crunch up towards the body. I would be happy to answer any questions. How many times a day does your child appear to have an episode? What state are you in, may be able to refer you to a specialist. What doctors have you seen so far (i.e. Pediatrician, Neurologist, etc)? --kevin Thanks Kevin,My wife estimates her to be having 2-4 episodes per day. We are in MO and have yet to see any specialists regarding her spasms. We are trying to find out as much about it as we can aswell as finding the top doctor in the field in our area. Sometimes my daughter appears to be having an episode in her sleep then wakes while in an episode and continues briefly. Does this happen with your child or have you heard of this? Also, after she woke she immediately began nursing and the episode abruptly ended in order to feed. Is this consistent with what you have expirenced? Thanks again,the woodruffs
    GCwoodruff 1 Replies
    • December 1, 2009
    • 02:55 AM
    • 0
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  • My daughter was diagnosed with Infantile Spasms at 4 months. Each person's spasms may manifest a bit differently but in general the head crunches down, arms/shoulders flex in, and legs may crunch up towards the body. I would be happy to answer any questions. How many times a day does your child appear to have an episode? What state are you in, may be able to refer you to a specialist. What doctors have you seen so far (i.e. Pediatrician, Neurologist, etc)?--kevinApologizes for the repeat posts...I see now that posts are moderated.--kevin
    Anonymous 42789 Replies
    • December 1, 2009
    • 01:05 PM
    • 0
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  • Thanks Kevin,My wife estimates her to be having 2-4 episodes per day. We are in MO and have yet to see any specialists regarding her spasms. We are trying to find out as much about it as we can aswell as finding the top doctor in the field in our area. Sometimes my daughter appears to be having an episode in her sleep then wakes while in an episode and continues briefly. Does this happen with your child or have you heard of this? Also, after she woke she immediately began nursing and the episode abruptly ended in order to feed. Is this consistent with what you have expirenced? Thanks again,the woodruffsOur daughter started with 2 to 4 episodes a day and originally occurred the most during times of waking up. We have been told that this is the easiest time for a spasm to occur as the brain is transisitoning from sleep to awake or visa versa. I can't recall about the feeding and a spasm stopping but I do recall that they ended rather abruptly.We are in Iowa, I know there are a few specialty centers in Missouri, I would encourage you to see them. If you can rule out IS or other issue great, but if diagnosed with IS aggressive treatment may be necessary. We work with and Epileptologist in St. Paul, MN at the Minnesota Epilepsy Group and are very happy with their service and have referred several families there.Our daughter continues to have seizures but as all treatment options have failed her but we know that we are providing her with the best possible care. We know of another family in Iowa with a little girl with IS and she is now seizure free they also use Minnesota Epilepsy Group.Here are some Epilepsy Centers in Missouri area:http://www.naeclocator.org/locator/resultsbyzip.aspI have heard good things about the Pediatric Epilepsy Center at Washington University/St. Louis Children's Hospital.Send me an email at kevincharris@hotmail.com and I will send you an old video of Grace having a cluster so you can compare. I would highly recommend taping an episode and taking it to the doctor, we did with our pediatrician and he knew right away that it was neurological.--kevin
    Anonymous 42789 Replies
    • December 2, 2009
    • 03:02 PM
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