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5 month old just diagnosed - support needed

Sat, 12/30/2017 - 00:44
Hello all. Just yesterday we received the diagnosis of epilepsy for our 5 month old son, Crosby. He had 12 seizures from Christmas Eve through 12/27 when the children’s hospital finally had us come in. An overnight video EEG, a sedated MRI, and plenty of tests later confirmed epilepsy. No other specifics related to the type or anything, but enough to give us an answer. I know it has only been a day but I thought I was truly going to be ok with this. I would learn about it, and educate friends and family, and advocate for our son...I know I’ll do all those things, but right now I’m just feeling sad. Sad our son will have this additional challenge impacting so many areas of his life. Sad that I already see changes in how he acts. Sad I didn’t take more videos of my happy, babbling, baby boy before he started taking Medication three times a day. Sad I won’t have the same time for our three year old daughter because so much extra time will be given to our son. Sad that our world got so rocked in no time at all. Yes, I know we have a lot to be thankful for. I’m thankful we got a diagnosis and his medications currently stabilized. Thankful he has had two days without a seizure. But my goodness, I’m so overwhelmed right now. Anyway, sorry if this was not the right group or the right thing to write but but I’ll use my new card as my free pass for that. I think I just needed to get through these emotions quick so I can continue on. Any words of encouragement appreciated.

Comments

It’s going to take some time

Submitted by Amy Jo on Sat, 2017-12-30 - 03:48
It’s going to take some time to adjust to the new reality. Not every epilepsy diagnosis is the same as there are so many different epilepsies. You probably aren’t in a good position to absorb all the info unless you already have a background in this so cut yourself some slack, it’s a big learning curve ahead. This is a 400m dash (what you need to know now) followed by training for many marathons (long view).When our youngest was diagnosed with a congenital condition shortly after birth, it took a while just to learn a new medical language and expectations. When seizures were noted at 5yo, we realized something had been wrong for at least a year prior. It was another slog of learning what info was immediately relevant,  what might matter and what probably doesn’t matter.  Your family can adjust, life has curve balls for nearly everyone at some point. Know your support network matters for your sanity (in person and online people), know if you children’s hospital is really good (ranking in neurology and if it has experienced epileptologists) and know that humor is fundamental for better coping.

My son had his first seizure

Submitted by zacksdad on Sat, 2017-12-30 - 14:03
My son had his first seizure when he was 15 months old.  Fortunately, one of my neighbors was a paramedic and had stopped home for lunch... with his ambulance.  It lasted about 45 minutes.  The hospital told us it was a febrile seizure caused by the fever from his vaccinations and that he might not have anymore.  Four months later he had another, one hour, and they told us it was epilepsy.  That was the beginning of our "Journey".  You should push for a specific diagnosis.  It makes a difference as to how it is treated.  In certain types of epilepsy, the medication can actually exacerbate the seizures.  I'm going to guess that, at his age, they're giving him phenobarbital.  If I'm wrong, sorry. Hopefully, one medication is all he'll need to control his seizures.  Just remember, all AED's (Anti-Eliptic Drugs) have side effects, and that any changes are due to the medication, not him.  If he isn't seeing one now, push to see a pediatric epileptologist.  This is a sub-specialty of neurology focusing on the diagnosis and treatment of epilepsy in children.  Don't be afraid to speak forcefully to his doctors.  You are the best advocate for your boy.  Also, try to get video of him seizing.  It can help with a diagnosis.  Try to come up with a creative way to involve your daughter is his treatment like helping with his medication or something along those lines.  As appropriately as you can, try to explain what's happening to her brother so she doesn't get scared if she sees him seizing.Contact your local chapter of the Epilepsy Foundation.  They'll have volumes of information that can help.  My local chapter has many events during the year including picnics, parties and excellent educational seminars.  Also, they may be able help you connect with a local support group.  Sometimes it helps to know that you're not alone.

Thank you for the feedback.

Submitted by CrosbysMama on Sat, 2017-12-30 - 14:55
Thank you for the feedback. We follow up again with his neurologist in 3 months, I guess I didn’t even think there was a more specific specialty — so much to learn. We have taken videos of all his episodes/seizures/events and showed a couple to the doctors in the hospital. I’ll definitely stay on them for a more specific diagnosis. Great idea of involving our daughter. She will be happy to help. I woke up today already feeling better, or at least ready to move forward. I’m glad there is support out there and hopefully I can also find some locally! 

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