7 month old with epilepsy

Lorena - posted on 09/10/2010 ( 17 moms have responded )

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hi my little girl was diagnosed with epilepsy at 7 weeks old she's now 7 months old and still has seizures docs took her off meds for some reason or another help!!!!

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Ashlyn - posted on 07/18/2013

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Prayers and thoughts are with you. I know how it is, my daughter had her first seizure at 15 months old. Now here we are 2 years later and she is still having them. No fun :(

Jessaman - posted on 09/23/2010

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my son was diagnosed with epilepsy at 11 months old..he is now 4 yrs and5 months and still has it...he takes valproic acid for his seizures three times a day..we also keep diastat with us at all times.

Tammy - posted on 09/21/2010

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No Worries Patti, And in answer to your question... Absolutely!!! if she is a candidate for surgery she can definitely move beyond where she is now after surgery. Amy was 18 months old when she had her first surgery and although her delay was not as severe as your granddaughter's that doesn't mean she couldn't achieve great progress post surgery. The name of the surgery is specific to each patient depending on what the cause or location of the seizure's thats why its so important to have the SPECT and MRI scan's done. Epilepsy Surgery would be the broad term that all doctors should recognize.
I can't stress enough how important it is to find a doctor willing to explore this option. I know how hard it is for people in the US to get medical advice that is not tainted by the considerations of the almighty dollar, we are very lucky here in Australia (Amy's 2 surgeries and all her care for that matter were covered fully by our Medicare system)
Good luck ;) Let me know how they go

Patti - posted on 09/21/2010

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Once again thanks yes we live in New York and medical system is tough But you are absolutely right they need to advocate for her do you think changes can still occur even though she is 2 if the surgery were possible what is the name of the surgey Again thanks for your comments and concern God Bless

Tammy - posted on 09/21/2010

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No Worries Patti, this might sound a little full on but your granddaughters parents Need to advocate for her, and if this means demanding that the neurologists explore the surgical option, even if in the end it isn't appropriate, at least they can say they tried Everything. Unfortunately it isn't an option for every child but if it is then things can change for the better so quickly. I don't know where you live, if in the US i know that the medical system is not easy to navigate but it is definitely worth a try. Good luck and i will keep in touch.. ;)

Patti - posted on 09/21/2010

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No that has never been discussed She is so very delayed and of course continues with seizures although less at present now they are looking to start ketogenic diet we will see how that goes Thank you for sharing with me and for your follow up Please keep in touch and I will as well Thanks Patti

Tammy - posted on 09/21/2010

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Hi Patti, I'm so sorry to hear about your granddaughter, Unfortunately Cognitive delay is very common in children with Infantile Spasms. Amy has some cognitive delay especially pre-surgeries. However after the first surgery we noticed a marked difference in her understanding of the world around her and after her 2nd surgery, well we bought home a completely different little girl. We are really lucky here in Australia as we have some of the best neurologists in the world who's first priority is to halt the seizures as soon as possible so that our kids can start to catch up.
I use the word 'Tuber' as at one point Amy was diagnosed with Tuberous Sclerosis. This has now been ruled out by the geneticist's as she only had one marker of the condition and they have to have at least 3 to definitively say she has it.... Has your granddaughter been assessed as a possible surgery candidate? I know it seems extreme to operate on their little brains but the outcome's, at least for us can be life changing.
Tam ;)

Patti - posted on 09/21/2010

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What is tuber My granddaughter was diagnosed with Infantile spasms at about 4 months old she is 2 now and even though seizures have become less she is still on medication and seems to have gotten worse cognitively she seems stunted or stuck at a dev. level of about 2 months anyone else with similar experience??

Tammy - posted on 09/16/2010

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Our daughter is almost 4 years old and was diagnosed with Infantile Spasms at 3 and half mths. She has since has 2 brain surgeries to remove 'Tuber' which was picked up in an MRI at the age of 13mths. Prior to surgery Amy was on a couple of different meds with no real seizure control. Since her last surgery in May 2009 she has been seizure free, We finished weaning her off meds in January 2010 and so far no signs of seizure activity at all. You might want to talk to your doc's about having MRI's and SPECT scans. The spect scan will tell the doc's precisely where in her brain the seizure's are coming from. She may be a surgery candidate.... Good Luck and just know that ther is light at the end of the tunnel. You also Must INSIST that the doc's give you reasons for everything they do, like taking her off meds. Our Neurologist told us that seizure control is very important at such a young age !!! So Please try to explore surgery options, I know it sounds scary but it can be worth it ;)

Kitty. - posted on 09/11/2010

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I have seen a couple of seizures in my life time. It was pretty scary to me the very first time. The second time I don't remember being as scared , but it depends upon the kind it is. The great big ones are the scariest. Which kind do your children have?

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