4 month old just diagnosed with epilepsy

Ruby - posted on 11/16/2009 ( 8 moms have responded )

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My son Evan had his first seizure at 3 wks old in my arms... since then we have had 3 other major seizures and tons of mini seizures... he was just recently diagnosed with epilepsy... we had to go to soooooooo many different hospitals to finally get a diagnosis... I don't know much about it and the doctors didn't care to explain... all i know is that light DOES NOT trigger his seizures...

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Betty - posted on 11/22/2009

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My son started having seziures when he was 5 hours old. He has had seizures his whole life some lasing up to an hour long. He will be 19 years old next month. We have been on almost every medication possible. The one constant medication from day one has been phenobarbital. It is given as one of the first meds because is is the oldest and safest seizure meds. Seizures have kept me on my knees praying for 19 years. Keep your head up and read all you can, and ask any questions you can think of. Never think your questions are stupid, it is your child and you need all the answers you can get. Keep you head up and pray. God bless.

Cheryl - posted on 11/21/2009

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Hang in there when my son was 13 he started having seizures suddenly. we went to several doctors before we found a Pediatric Neurologist and after 2 years of multiple visits and several medication combinations he has now been seizure free since june 13th, He is now 16.
There are many meds out there it is the time consuming problem of finding the right one
Good luck

Marlene - posted on 11/21/2009

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With the correct does of meds he will be fine. My son is 10 and has not had a seizure in many years, all thanks to the meds being given correctly and the correct dose. As he grows the ampount and type may be changed.

Keep in mind that ceiling fans can also trigger a fit.

Research it on the net, certain meds cannot be given to epileptics, always check first.

Its not the end for him, it can be controlled.

Best of luck:)

Toni - posted on 11/20/2009

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I just wanted to say good luck and your not alone. My son is 5 months - just diagnosed with Infantile Spasms. although not the same diagnosis, i understand how overwhelemed you must be feeling, financially and emotionally. I hope things work out for the best for you and your family. Toni*

Ruby - posted on 11/19/2009

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I was told that that treatment was not recommended for his age because it can cause severe bon deteriotion and can make babys grow to gargantuan size.... it also has alot of other side effects to where unless they are having major daily seizures, they do not reccomend it... I had my SSI appt and they said I should qualify for a lil over $400 a month for him.... He is already on medicaid... They said phenobarb has the least symptoms and is all they reccomend for under 2 yrs...

Yvonne - posted on 11/18/2009

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I would really question them about phenobarb. I know it's the first drug a lot of Dr.s introduce. when you go back, ask them about ACTHAR it may not be a good choice for his symptoms, but I would definelty ask and have them expain why they are doing phenobarb. Sometimes SSI is difficult to get because of income. Your state should also have a Division for Developmental Disablilities which could assist you in much needed help including medicaid. I will call the DD council of Wyoming tomorrow and see if I can get you an email or phone number you can call to get help in Texas! I can relate to the travel distance! Our neurolgist have been 3 hours away, but they kept moving so we finally just made the decision to travel to Salt Lake which is 7 1/2 hours away! It stinks! Keep your chin up!

Ruby - posted on 11/18/2009

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He goes to the nuerology clinic at Childrens Medical Center in Dallas... he is on Phenobarbital and is taking an extremly high dose for his age, but they said that is all they can do at his age.... Right now we are trying to apply for SSI for him cuz we have to drive 3 hrs just to his dr appts, and he is also being tested for a rare disease called nonketotic hyperglycineanemia....

Yvonne - posted on 11/18/2009

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Hey Ruby! I'm Yvonne, my son was 8 months old when he had his first seizure. The number one thing I would do is get to a pediatric neurologist as soon as possible. Have they diagnosed him with Infantile Spasms? The first treatment Denver Children's Hospital did with him was a three week round of ACTHAR (a steroid). Listen to what the neurologist says, read what ever you can read and ASK a lot of questions! Light did not trigger Quinn's seizures either! My prayers are with you and your son! Let me know if I can be of any further help!

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