Friday, April 20, 2012

Comfort over care

Finally some answers after the hospital stay last week that gave some very interesting news about Jaxson's brain and his EEG.

I immediately emailed the head of neurology, who also happens to specialize in intractable epilepsy, what Jax was diagnosed with in Utah.
He was amazing! He emailed me back within an hour and said he was going to look at his records, talk with the docs that were there, and call me. The next day, we had a nice, long conversation. He really is a fantastic doctor, and took time to explain everything to me.
He does agree with the diagnosis of intractable epilepsy. But the rest of the news is not so great. Because his brain is in chaos, but not specific seizure activity, there is no good way to treat it. He said in a "normal" child, that was regressing in development because of this, they would try some big gun meds. But because Jax already has very little development, and because of his fragile heart and lungs, they wouldn't even consider these drugs. He said with Jax we have to think of comfort over care. Something I already do with him. But when he said that, it just confirmed to me that we should have stayed on track with restarting the diet.
I emailed the keto NP to tell her my regrets with stopping it, and that I indeed wanted to restart it. She tried to tell me that the diet has risks of its own, which include kidney stones, and liver problems. I reminded her that my son was on this diet for 3 years without a single side effect besides high cholesterol. And since I know my son is not going to live to be 60, not even 30, I'm not concerned with high cholesterol. The drugs that he is on, and the ones we have yet to try, have much worse side effects. He did so much better on the diet. He did not have these seizure like episodes, he slept all night long most of the time. All of these started after the diet was stopped. She agreed that we can shoot for June to try again.

The other interesting thing is I still haven't gotten to talk to his old neuro. I talked to his nurse twice, but he has yet to call me himself. This tells me that he is being a coward, which is really sad because I liked him a lot! His nurse tried to tell me that EEG's can change. To which I replied that the docs here looked at old EEG's, and they are just like the one last week.
The only other thing she suggested was getting copies of all of his EEG's, which I had already planned on doing.
It doesn't matter, what's done is done, and we can only concentrate from here on out. I can't beat myself up anymore about agreeing to stop the diet. The brain can only handle so much stressful information at one time!
We'll get my big boy back on track, hopefully soon!


10 comments:

Jane@flightplatformliving said...

your story of love inspires me! dont beat yourself up about the diet, really, you are one tremendous mama! Love to you and your family, glad it sounds like you have good support and are finding some answers. xxxxx

Not a Perfect Mom said...

Lacey, you are one of the most fantastic mothers I know...and you're right, what's done is done...
You now have a fantastic neuro and are getting everything on the right track...
keep looking forward...

Darren said...

In solidarity with Jax, I pledge to eat bacon and eggs every morning this week. We will be cholesterol buddies. Feel better, brother.

Zoey's mom, Heather said...

Your boy is beautiful and I love him so. And, you my friend, need to give up the guilt. We can never look back, so just move forward and Jax will lead the way as he always does.

EN said...

Jaxson's face reminds me of everything that is important in life. He is beautiful. You are a wonderful mother who understands his needs and you are committed to doing what's best for him. God knew what He was doing when he blessed your family with Jax. Thank you for continuing to share his story with us.

Melissa said...

It's hard not to look back and say what if....but I'm glad you are moving forward, and hope the change in diet brings the changes you'd like to see.

Rochelle said...

Glad you finally got some answers. Moving forward is a great plan, looking forward to hearing him get back on track

The VW's said...

Love that boy! Great job lifting your head Jax!

It's hard hearing there isn't much that can be done for your child.....but we need to do ALL that we can, if we think it will help them. Hope starting the diet again offers some improvement! Hugs!

Runningmama said...

I am so glad there is a Dr that was willing to explain everything to you. Love the last pic of Jax!

Chromosomally Enhanced said...

comfort is the only human thing to do...i know difficult...my mom died very young and choose comfort and quality of life over longevity...I am thankful I see her in my dreams as strong, beautiful and full of life...harder decision when it is your own child...so bummed the dr is not calling you back...it is closure with this dr not necessarily a finger pointing expedition...hugs to Jax and you...smiles