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!"

Saturday, June 05, 2010

Medical Update

A few years ago, Angela started a medication that caused her to put on a lot of weight very quickly. She'd always been super tiny, and barely on the growth charts for children who have Down syndrome. I remember, just a few weeks before starting that medication, our developmental pediatrician told me we'd probably always have trouble getting Angela to gain weight.

Four months and 22 pounds later, (and 4 inches in height!) with stretch marks all over the place, Angela no longer needed to gain weight. Eventually we got her medication dosage just right so the weight gain slowed. She continued getting taller. She went from 9 years old and 42 pounds/42 inches to 13 years old 115 pounds and 55 inches.

In December her medications combined with her seizures became a problem, so we made some adjustments. The neurologist told us her new seizure medication would not only stop the weight gain, but she'd probably drop back down to her natural weight.

We've definitely been seeing her weight drop, but I haven't stood her on the scale in quite some time. Clothes that were tight on her in December are falling off. Her behavior specialist was here the other day and said in the two weeks since she'd seen Angela it appeared she'd lost even more. Yesterday as Angela was getting in the shower I ran and grabbed the scale.

99.5 pounds! She's lost 16 1/2 pounds! Wow, that's a lot for the small person that she is. No wonder her clothes are falling off! She now sits right at the 50% for both height and weight on the DS growth charts. Since she'll be starting swimming again soon, she'll probably loose a little more, which is fine. If you see her, she has a lot of "junk in the trunk". LOL She has so much more energy though! She'll run around the yard playing all afternoon, and a few weeks ago she ran the mile at school for the first time ever!

Let me just say, I'm liking this seizure medication! Oh, and her seizures have been well controlled too! LOL In fact, since December we've only seen two that we've recognized (one at home and one at school.) and one episode that we questioned if it was a seizure or not, but it was very short so we weren't sure. She also hasn't complained of a single migraine since starting this medication.

Summer is ramping up, and I have most of Angela's free time from now until August 5th all planned out. Remember, a bored Angela does not a happy household make!

Swallowing is back to being a problem. Ok, who am I kidding? Really the dilitation she had done in December only lasted about 3 weeks, but I just wasn't sure how much to pursue it, and finally have decided it's time to stop putting it off! ) We'll be getting some re-testing done, and planning another visit out to Boston Children's sometime around the middle of August to discuss the next option.

4 comments:

My name is Sarah said...

This is Joyce, Oh nothing ever stays just so, does it? I can't believe you need to head back to Boston. Ugh.

I just sent you a message on facebook about a family looking for info on fundoplication.

e said...

what was she on? what is she on now? Pharmacy girl needs to know details! hahahahah

Whatever it is, I'm so happy the change has been good!

she's absolutely beautiful, mom....

JennyH said...

That is a lot of a change! Hope the right dosage will continue to be easily found.

Googsmom said...

{{{{{HUGS ANGELA}}}}