Thursday, April 12, 2012

Home

Jaxson and I are home.

Home about 4 days earlier than expected.
Why?
We got some VERY unexpected news.
As a matter of fact, I'm still working on picking my jaw up off the floor.
We finished the EEG, stopped the diet, and came home.
All of those episodes that Jax is having. The episodes that sometimes cause his heartrate to drop, are NOT seizures.
That's right, during the whole 24 hours, there was not a single seizure in his EEG. Now, you'd think this is great news, no seizures. Its not so great. Jax brain is in total chaos. It's misfiring, and sending crazy electrical currents everywhere. Very typical of brain injury kids. But not a single one is classified as a seizure. That means the diet is not going to help, and meds are not going to help. Did he have regular seizures in the past? Yes, so we need to be really careful about playing with his meds. The really bad news is these episodes are neurological, and the not sleeping is neurological, but non of it is going to be fixed by seizure meds.
That means all of the EEG's from the old hospital, at least the ones UCLA was able to pull up, were read WRONG!! They all say that he is having constant seizure activity, a non convulsive status all the time. UCLA said all of the EEG's from the last 3 years, look the same as yesterdays. Not a single seizure. That also means the surgery for his VNS last year was totally unnecessary. Its not having an effect on his brain at all.
Jaxson and I feel the same way about this news.

I don't know what to think. All I know is that UCLA is a top rated neurology team. People travel here from all over the country to see their doctors and get answers. That is one reason I wanted Jax seen there.
I think I'm still in shock a little bit. I put a phone call into our old neuro. I want to give him a chance to explain what happened. I also want all of Jax EEG's since birth sent to UCLA to be read. Not just the report, but the actual video EEG.
For now neuro wants to wean at least one of his seizure meds. Phenobarb will be the one. We will wean extremely slow, he actually won't be off until August. But this is one of the stronger meds, and we'll keep our fingers crossed that off this med, Jax may gain a tiny bit of development.
We have a follow up neuro appointment next month. I will get a list of my questions together, as I get a chance to clear my brain a little bit.
One question I already have is why did these episodes start back up after stopping the diet? And the episodes, and the not sleeping, have slowly gotten worse in the last year since stopping. Could the diet of helped, even if they weren't considered actual seizures? Could it have still been having effect on some of the chaos in his brain? I really hope they can answer some of our questions!

Oh, and I have no idea why the font randomly changes in my posts?

16 comments:

The VW's said...

That pic of Jax with the sad lip is adorale, but heartbreaking at the same time! I'm interested in hearing what your old neuro has to say about all of this! Stuff like this is why us Mommas really need to be on top of our kiddo's doctors! I still can't believe they did the VNS surgery when he didn't even need it! UGH!

Megan said...

Lacy, I'm so sorry for you and Jax. I hope the Dr's can find a way to calm his brain down. UCLA is a great place for you to be. God bless you guys.

Patti said...

Wow, lacey, I am going to be praying for good solid answers for you! Jax looks so cute despite the pouty lip :) Hope you are getting some rest, mama. oxox

Lexi said...

That is too frustrating. I'm so sorry! We're praying for you. Too.

Lisa L said...

Little Man looks so sad with that pouty lip!! (totally adorable though - makes me want to just scoop him up!!) So sorry to hear about the news. That's totally crazy!! Really hope they can figure out a way to calm him brain. Also praying that weaning the meds will help him. Did they have any suggestions to help him sleep? Lack of good sleep can cause all kinds of trouble!

Michelle said...

Lacey, I just don't even know what to say. I have been reading on FB, and I haven't commented because I'm speechless. I will continue to pray for wisdom for all involved. Such a sad little pic of Jaxson

Jenni said...

We love Jax.

April Vernon said...

How frustrating! I am thinking of you and praying you will get answers.

charity said...

how very frusterating. hopefully you will get the answers you need soon.

Anonymous said...

My heart breaks for you and all that you have to go through unnecessarily. Hard times are bad enough, but mistakes....just no words. You are such an amazing mom and I pray for you, your precious Jax and all of your sweet family.

Shawna ~ Round Rock, Texas said...

That post about your precious Jaxson was from me. I just did not get to leave my name before it sent.

Twilson9608 said...

I don't know where to begin. So I'll just say that I am glad that you are both home. I'm interested in what your old doc has to say about all of this. Their misdiagnosis has caused so much unessasary (sp?) heartache, amongst other things. I't makes me I'll reading this through again. Praying.

Kristin said...

So frustrating!

I Just Love You said...

wow, just, wow. i bet you feel like going back to his old doc and punching him right in the face. how maddening!

Chromosomally Enhanced said...

this is to troubling...and frustrating...I am not sure what to think and what to do...I would want to investigate also...I would want to know -now what? Jax deserves the best care possible and you are the best person to find it...I am thinking of you and all this stress...it has to be hard...I think a call between all the doctors could be helpful...then they could be looking at the same images and videos and figure out what is up...then one doctor is not telling you one thing and the other doctor another...this really is troubling to think of all the stress and care that has been given for you all...smiles

Meriah said...

Ugh. How horribly frustrating... Love and prayers your way.