Big appointment this week

It'll be one month on Wednesday since our DD Maddie was diagnosed with Benign Myoclonic Epilepsy. We're having our follow up with our pedi Neurologist on Thursday and still have so many questions. We actually emailed her a full word doc (not kidding!) of our questions and she's going to review them with us at the appt. Maddie's been on valproic acid for almost a month and it hasn't completely stopped the seizures. It's so heartbreaking to watch her have them since she doesn't understand what's going on. She looks up at you with these big tears in her eyes in between each upper body jerk and doesn't like the feeling of what's happening. The only think my DH and I can do is to sweep her up in our arms and try to console her. She's having clusters anywhere from one to three times a day, and does about 10-12 of these body jerks in each cluster. I truly hope the medicine starts working soon.

We're feeling a ton of pressure about this weeks appt too. If we aren't satisfied with the neurologist's answers, I think we're going to make the trek to Boston and bring her to Childrens Hospital. It just seems like the diagnosis happened so quickly. They did 31 minutes of EEG and saw a 1:00 min video clip I caught of these seizures on my home camera. How are they so certain it's this specific form of epilepsy? Trust me, I pray they are right since most kids outgrow it within a year or two. I'm so scared the other shoe is going drop and something else will pop up.

The only positive is I had a stress test last week and my ticker is doing great! It's the small things right!

 

Lisa :hug: I am glad that your heart checked out okay!
I can understand why this neurologist's appointment has you worried and feeling pressure. Definitely ask all the questions you are planning to ask and if you don't like the answers, I agree with going to the children's hospital. I hope she will grow out of these seizures and wishing you all the best with your appointment tomorrow. Please keep us posted!

 

Lisa, I'm so sorry you and Maddie are going through this. The poor thing! I just can't imagine how hard it is to watch her have these seizures every day. :hug:

I think it's great that your medical team is acting quickly and taking this very seriously, but I understand your concerns about how you want the *right* diagnosis, not just any diagnosis. I had to change specialists with Jack's hypospadias; I felt that the doctor was not effectively communicating with us, and wasn't doing appropriate follow-up care. It's tough to second-guess a doctor who has all that education and experience, but you need to do what's right for your child.

I hope you get the answers that you need on Thursday, and I especially hope they are able to confirm the original diagnosis. Keep us posted on how it goes.

 

:hug: :hug: :hug: please keep us posted!

 

its so hard to watch your sweet baby girl go thru so much at such a young age Our smallest Eve is going thru multiply testing and head surgery to help her head shape and growth-its unknown what to expect down the road and im sure with yourselves you must feel the same way too overwhelmed and unsure-One day at a time -

 

Oh, honey, HUGE hugs to you :hug: That has to be utterly heartbreaking to watch. It sounds like you actually have a pretty good neurologist if she was receptive to a full page of questions being submitted ahead of time - there are a lot of them out there that aren't, believe me.

The worst thing about any type of seizure activity is getting the medication right. You would think in this modern day & age we would have a good way of doing it, but no - physicians just run through different medications and dosages until they find one that works. Great, isn't it? A few of my family members have epliepsy & the worst part was always trying to get the right dosage of the right medication, & watching them suffer through seizures and side effects until the magic dosage was found.

There are other medications out there, but the thing about valproic acid is that it has been around a long time, it has been used in children and infants for a long time & it's side efects are really well known, fairly rare and pretty mild. So the neurologist will probably want to try increasing the dosage for a while before trying another drug. If it isn't the right medication for Maddie, she will have a few others that she wants to try - I know my nephew's neurologist was of the firm belief that 1 medication only should be used if at all possible, rather than combinations of different meds. It took my nephew about 4 visits and 3 changes of medication before they found what works for him.

Hang in there. And I would certainly go down to Boston for a second opinion. No physician worth their salt minds their patients getting a second opinion.

Best of luck to you all, I'll be thnking of you. Hang in there!

 

Oh wow, How frightening it must be for you.

Our 10 year old (my step daughter) has absence seizures. She's been on the medicine and gets them very rarely now. It's never easy to hear something is wrong. With answers comes hope though. I pray she gets clear help and a calm heart for you.