Okay so we went to the neurologist last Wednesday morning and were "lucky" to have our son have a seizure in front of him. He immediately called the children's hospital to see if they had a bed for him. By 3 Wednesday afternoon, we were checking in for a 23 hour EEG and MRI of his brain. Little man had 3 seizures before they could even get him hooked up (BTW, he had over 20 on Tuesday). Once he was hooked up and in his room, wouldn't ya know, he didn't have any more. So they pushed back the MRI till Friday morning because they said they wanted at least one seizure recorded on the video EEG before the MRI. So finally around noon on Thursday, he had one (not on video thanks to dear hubby), but was recorded on the EEG. No more on Thursday, but woke up Friday morning to him having one that was on the EEG and the video. He was taken to MRI around 10 a.m. and by 12:45 the neurologist came in with the news. Focal epilepsy caused by a malformation in the brain. He did rule out the HH tumor we were so scared about. He's on medication and hasn't had a seizure since Friday night! We have all been sleeping through the night now. But neurologist said he will eventually still need surgery :-(
But for now, our baby boy is back to normal. Thank you all SO MUCH for your prayers and support. You don't know how much it meant to all of us.
You're all a great group here and glad there is a place like this for us moms (and dads) to come to.
Thanks for the update I've been thinking about you guys! So glad that you finally got answers you needed and have gotten it under control. Now hopefully things can go back to normal!
oh my you totally have me crying, how hard this must have been for you and for him!!
Thank you so much for the update, i'd love an update in a year saying how great he is doing, because i know he will!!
Study epilepsy. My nephew has it. You will need to school yourself.
Prayers...
Sending prayers to you! Did he have a DPT shot prior to the onset of the seizures? I'm reading a book on the Pertussis (whooping cough...the "P" of the DPT) vaccine and seizures are one of the many scary side effects. Just wanted to throw that out there in case this happened within a few days or weeks of a vaccine in case it means that he needs to avoid that in the future.
Best of luck to you - I hope that they get things under control. One of my brothers has a seizure disorder (not epilepsy) and with medication, leads a totally normal life.
Blessings to you and your family! You sound like a very strong mama!!! I am so happy you got a diagnosis, and the medication is helping. HUGS TO YOU!!
Hi, I've been out of town the last few weeks and missed the emergencies with your son.
Ditto Grandma T below. It's important you study and learn as much about epilepsy as possible. I would highly recommend you join a local support group. You can usually find one through a local children's hospital, or Pediatric Neurologist. Keep looking until you find one and plan on being an active participant.
My husband is a Peds Neurologist and this group of patients is classically under-served in non-academic university hospital type cities. The pediatric brain is a 'moving target' and traditional medicinal therapies rely on dosing down adult drugs. This has long term cognitive side affects.
Please read up on nutrition, such as the Ketogenic Diet, and all side effects of meds your son will be on so you can be vigilant about any toxic levels developing or adverse reactions.
I know you have a lot on your hands and that this is a scary time right now for your family. Please stay on top of your son's condition and keep regular check ups, even if you think he is improving on meds.
Sending you strength and prayers.
Thank You for letting us know. You are in good hands and are on the road to his better health. All blessings to you and yours.
I didn't read your previous posts but this sounds terrifying! so glad the doctors found the cause and it's under control now. hugs to your little man , really glad to hear he is better now, what a trooper! God bless!
Saying prayers for you all and hope that what they can do for him now will make a big difference.
Hugs, Mama!
Dawn
What kind of malformation? both my kids have Arnold Chiari Malformation 1 and had surgery......
So glad you have answers! The not knowing always the worst! Still sending prayers.
*hugs*
So glad he is getting better!
Thank you for the update, I will let my prayer chain know as well.
Thankful he isn't having seizures at this point and you can all get some rest.
Prayers will continue, God bless you all!
God is good! May you all catch up on your rest and draw together and be closer than ever!
Praying for your family.
Thankfully atleast you have answers now!
I will still be praying for your family.
Thank you so much for letting us know. Will continue the prayers!
-A.
So happy to hear your baby is okay now.... Prayers to you and you're family!!!!!!!!
