Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, July 23, 2009

More from Mayo, and "stuff"

*For those who haven't been following the story, you might want to read HERE First, starting with June 25th when this whole mess blew up!

So today was our long-awaited appointment with the pediatric neurologist. We saw this same neurologist (along with a neurosurgeon) when Angela was just a baby and first showed evidence of a stroke. He's very nice, (And Gail, he has GREAT bedside manner AND even has the appropriate lingo down. LOL)

So first we went over the current issues. The seizures (new this past spring) the achalasia (that's been there for years, we just didn't know it was this bad, and how the GI dr. is convinced she's had a brain stem event because of the type of achalasia she has.

He did her neuro exam, and then we finally got to talk. I didn't really expect to learn much on this visit, but rather ruling out that she's had anything NEW happen. And, I was pretty much right.

First, he was impressed with how well she IS doing. He said what I always do.."You would never know by looking at her that her body holds all these secrets!"

We do have her very first CT scan done when she was 5 months old that shows a nickel-sized "shadow" on her brain stem. It could be just artifact, or it could be there was really something there. The brain stem is the most difficult area to study, of course. He doesn't feel that running any more tests would be beneficial unless there was something NEW going on...and there isn't. What information we *might* find would not alter what we're doing or planning to do for treatment. Based on her symptoms, and the swallow studies and old scans, he agrees that there was probably a brain stem event at some time, BUT..she did NOT have any problems swallowing until sometime after her nissen at 11 months old, and as far as we know didn't have problems stacking food in her esophagus until she was around 3, so he is guessing (and that's really all he can do is guess.) that this event happened sometime in toddlerhood and NOT at the initial stroke she had around 4 months old.

He's glad her seizures are well controlled with meds (as are we!) and says her left sided weakness is just has her regular neurologist describes: Very subtle...it's there, but if you weren't looking for it you might not find it. It is evident in her eyes as well, but today is the first time I've been told that. Also, her reflexes in BOTH legs are very minimal. Oh..and here's another odd thing. Just a couple weeks ago I told Dean "You know, I don't ever remember her commenting on smells." Like if you pass a dead skunk, or any other types of odors, she says nothing about the smell. Then like 2 days later she DID comment about a smell, only I didn't smell a thing so I think she was just talking to her herself talk.

Well, today he tested her sense of smell, and held up stuff right to her nostril. She SAID she smelled them, but he told me afterward that the smells he was holding up were VERY strong and should cause her to wrinkle up her face or turn away. She gave no reaction at all. Interestingly, that goes along with TIA's, which Angela has been having off and on for several years now.

So, we didn't find out anything exciting, but it was interesting to hear his perspective, especially about the sense of smell. Hmmmm....Anyway, we're hoping to be in Boston to see Dr. Nurko at the Pediatric Esophageal Motility Clinic sometime mid-late September. If the motility testing shows that it will be beneficial, she'll also have an endoscopy w/botox to the upper esophageal sphincter while we're there.

We are STRUGGLING with the soft diet. UGH! She's now started foraging the house for stuff because she's craving crunchy things. I think she's also going through a growth spurt (or is incredibly hormonal) because she's eating constantly.

Camp went very well. I did get a call on Weds about an incident, but they just wanted some insight as to what triggers the type of stuff they saw. I laughed, and said, "Wouldn't we all like to know?" Unfortunately sometimes her behavior is neurologically based, so it has NO purpose. It's not communication, it's just THERE. (other times there is definite will behind her behavior!) There is no predicting it. There is no trying to catch it before it happens. It's impossible, because there IS no trigger. That's the TBI (traumatic Brain Injury) component rearing it's head. The rest of the week she was just fine, and there were no further incidents. She LOVED camp, and can't wait until next spring when she can go again!




4 comments:

Beth said...

glad you didnt find anything out that was bad! what is achasia (sp?)

angela is a very beautiful girl, and I'm glad she's doing ok!!!

Beverly said...

Keeping Angela in our prayers.

Michelle said...

I was just checking in, because I was curious how camp went for Angela - Karly leaves on Sunday!

Sounds like you've got a really good medical team. I like what the doctor said about her body holding secrets - very interesting.

Cathy said...

Very interesting about the smell and I really just wanted to send a Hug.
Could she crunch Ice? Not the best for teeth so maybe not, but it might help her while she weans from crunchy foods.

I’ve not been having any bickies or chips and today I just had to have some chips I really needed that crunch.
Like Angela I started to fel anxious and started to over eat, because of the crunch, craving.

I still dont have a clear pitcher of what is happening, I dotn understand many things you have posted so I’m googling them as well as going back to start from the beginning. The link you posted.