Thursday, September 11, 2008

Another one of the medically technical posts

I know that I get too technical with these medical posts about Nathan, but I am mainly just writing all of it down for myself. It is so good to put everything down and then have something to refer back to during this journey.

It seems as if the Lord knew that we needed some good news at Nathan's neuro appt today. When you repetitively get bad news, it just gets overwhelming, and this has just been one of those weeks where I felt like I couldn't quite catch my breath. It's hard to hear so many things wrong with your son when he looks so good.

So the good news: After our neurologist has centered most of the convos and tests over the past 3 visits around the fact that he thought Nathan had a form of mitochondrial disease, he said for the first time today that he was thinking that he actually may not have that now. Essentially, cognitively and gross motor wise, Nathan doesn't look like other mito kids. He has really developed a lot in the past month, and the neuro is extremely pleased in his progress. The only thing that is a throwing everything off is his elevated latate/pyruvate levels and the fact that what ever he has seems to be systemic (affecting quite a few of his systems).

But I'll take his wavering on that diagnosis any day of the week! We don't want mito...not that we want Nate to have anything, but we really don't want that progressive and unpredictable disease. Oh, it is just a huge weight off my chest to know that our neuro is merely thinking mito may not be the culprit.

That being said, Nate is going to start on what has usually been considered the "mito cocktail" at the first of next month after we get back some additional blood tests. It is a group of supplements (carnitine, CoQ10, B vitamins, etc) that are used to help his body with energy consumption. And there is still a muscle biopsy in question, though we won't do that anytime soon and we'll have to travel to either Cleveland or Atlanta to have it done. For the most part, he just wants to watch Nate for a little while and see if he continues to develop as well as he is currently. Also, there are still quite a few genetic mito tests out there on Nathan that are going through DNA sequencing right now...he said some of these will take 6 months to come back.

Part duece: Our neurologist is, however, concerned about Nathan's liver and is anxious to find out what the GI doc says at our appt on the 30th. On top of that, his latest lab work showed that his IgG level dropped even lower, so it looks like Nathan might indeed have to start having IVIG (intravenous immunoglobins) once a month. We'll find out more when we see our hematologist on the 24th. And, our neurologist referred us to an Immunologist...specialist #5. We are also not to give Nate any more of his immunizations for the time being until we can shed some more light on what is happening in his little body.

Again, a lot to absorb, huh? This is why I do not go to these neurology appts alone! I can take Nathan to any other appt by myself and pretty much get all of the info I need, but there is so much thrown at us during the neuro appts that I definitely need Jay's ears as well.

Nathan's doing great! He started on prevacid this week. We have known that he has had reflux for the past few months, but it hasn't seemed to cause him any discomfort. But he's spitting up regular food now and starting to seem a little more uncomfortable sometimes, so I told our pediatrician that it was probably time to start him on reflux meds. But he's doing great...always our happy little man.


Jill Chandler on September 11, 2008 at 4:49 PM said...

I do appreciate your medical update, though I can only imagine the mind-boggling appt! nathan's picture is adorable today!

Emily on September 11, 2008 at 9:04 PM said...

Wowza's. So much for you to digest, and it just keeps changing and coming at you again and again. May Peace be with you and sweet little man!

Still loving all the pics too!

Christine on September 11, 2008 at 9:25 PM said...

WOW. so much to absorb. I am glad that they are re-thinking mito. I vote for the ATL if the time comes for testing.

As a side note, Abby was talking about the time we all visited in the mall a couple of years ago. Like she totally remembered it all...she was saying "emma was just a baby...Abby was my age and Nate was in his mommy's tummy". THAT my friend was the random topic of conversation at dinner tonight.

Anonymous said...

Amber, We love you and Jay and the children so much! I thank God for our friendship and your precious family in our church. I love knowing that our children will grow up together. We will pray for Nathan and have comfort knowing that he is safe in the Lord's arms. I love ya, Amanda McCook

dana on September 11, 2008 at 10:29 PM said...

I'm thinking that you should just find yourselves a NATE-ologist who covers EVERYTHING, rather than have to go to all these individual appointments...this is inSANE!

BUT...YAY! (Probably) no Mito!! That's FANTASTIC news!

Thanks for the updates. I'm happy to recognize every fourth word you write at this point :) but it's good education!

Always in my thoughts.


TracyVDM on September 12, 2008 at 11:16 PM said...

Still thinking of you!

Elise just switched from Zantac to Prevacid a couple weeks ago!

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