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Infantile Spasms Awareness Week

Posted by on Oct. 12, 2009 at 2:45 PM
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   this week is Infantile Spasms Awareness Week, it is a devastating form of Epilepsy, and often misdiagnosed.  Please forward the info on, and especially ask your pediatricians to read about it.   It is OFTEN misdiagnosed as reflux or colic,  a baby with IS needs help immediately from a pediatric neurologist or ped Epileptologist.    Diane 

   http://www.infantilespasmsinfo.org

 

dianelanglamorticella@yahoo.com
by on Oct. 12, 2009 at 2:45 PM
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prinsesK
by Member on Oct. 12, 2009 at 5:04 PM

i have a friend here on cm who's son has this.  he's 7 or 8 now and is facing his third brain surgery in the coming months.  i pray for him every day!

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diane08502
by Member on Oct. 14, 2009 at 10:09 AM

   Small world, LOL,  I know who she is, and I think her son is Elijah, he is a very sweet boy and has been thru so much!!  I also pray for him, and their family!!  They are very strong, they have been thru so much!!   

       Another friend of mine has a son who was diagnosed with IS, but it progressed to LGS, Lennox Gestaut Syndrome.    Its very sad, he is doing very well, but, the prognosis for him is not very good.  

       My son was almost diagnosed with IS, there was something that was different on his EEG, and he was able to avoid the IS diagnosis.   His type of seizure is the same type that children with IS or LGS often have, myoclonic seizures.  

     When my son was 6 months old, my hubby and I pointed out the seizures at my son's check up, the pediatrician said "give him tummy time"   DUH??  We got the real diagnosis and started working with our first ped neurologist when my son was 10 months old.    I truly feel like our first ped neuro, and her nurse practioner, were like guardian angels for Joe Joe.    He went for 4 months with untreated, unrecognized daily seizures.   I try to keep my PTSD in check.  Diane 

dianelanglamorticella@yahoo.com
prinsesK
by Member on Oct. 14, 2009 at 7:07 PM

yup, its elijah.  i can't imagine what it must be like to have a child with a seizure disorder.  i would be living in fear all day every day!

Quoting diane08502:

   Small world, LOL,  I know who she is, and I think her son is Elijah, he is a very sweet boy and has been thru so much!!  I also pray for him, and their family!!  They are very strong, they have been thru so much!!   

       Another friend of mine has a son who was diagnosed with IS, but it progressed to LGS, Lennox Gestaut Syndrome.    Its very sad, he is doing very well, but, the prognosis for him is not very good.  

       My son was almost diagnosed with IS, there was something that was different on his EEG, and he was able to avoid the IS diagnosis.   His type of seizure is the same type that children with IS or LGS often have, myoclonic seizures.  

     When my son was 6 months old, my hubby and I pointed out the seizures at my son's check up, the pediatrician said "give him tummy time"   DUH??  We got the real diagnosis and started working with our first ped neurologist when my son was 10 months old.    I truly feel like our first ped neuro, and her nurse practioner, were like guardian angels for Joe Joe.    He went for 4 months with untreated, unrecognized daily seizures.   I try to keep my PTSD in check.  Diane 


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amie72303
by Member on Oct. 25, 2009 at 6:40 PM

I feel that my daughter might have IS. Can you tell me a little about it. I have been doing some research on it and plan on calling her doctor in the morning. Most of her spells happen at night. She gets real scared crying. Its like she is trying to catch her breath and they can last about 10-15 minutes. She jerks her head around and get real stiff. Is this IS? Please help me figure this out. I just don't know what is happening. I have mention it to the doctor before and they diagnoised her with bad reflux and keep increasing her medicine but its not working. Any advice?

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