Jocelyn.
We were referred to a pediatric endocrinologist at Seattle's Children's to try and figure out why she is having so many "episodes." Yesterday was our appointment.
We were at the hospital for 2 hours with 2 doctors! It was the best visit ever! They were very friendly, accommodating, knowledgeable, etc. They wanted EVERY detail and were very thorough with her history! I could go on and on about what we learned, what we have to do, etc but I will make a long story short.
The reason we went was because Jocelyn gets "life-like" during her episodes. She has a hard time holding her head up, her eyes start to roll back, she can't walk, won't talk, and is very "heavy." During these episodes her blood glucose gets down to 50-60 (normal being 80-100) Although, there are times that is higher, in the 70-80's, when she has them. When we feed her she "comes back" after 5-10 minutes.
We learned that people that are "hypoglycemic" have very low blood glucose...like 15-20. Not 50-60.So, this makes them think that there is something else.
The plan: We wait for an episode when her blood glucose is between 50-60 and when she is having her symptoms. We have to take her to the hospital for them to run some labs. The scary part is that we can't feed her. We pack her up, drive 15 minutes to the hospital, and demand the lab to do 7 tests. We use those results to see what the next step will be. (I believe that those results actually determine diabetes, hypoglycemia, insulinoma, etc which they DON'T think it is) We have 2 months to do this. If not, they will admit her to Children's and "induce" it by not feeding her until it gets low and then run the tests themselves. On that same note, we had the option just to admit her there for them to induce it, or let us try and do it here. We are hoping to not have to admit her.
THEN, she is being referred to a neurologist to see if there has been any seizure activity. (I believe they are thinking that it may be something more along these lines.)
The most important part is this: Her growth is constant. Her weight and height are both continuing to increase at a nice level. This means that there isn't anything affecting that. So, whatever it is, should be easily treatable. Hopefully.
Thanks for your thoughts and prayers for her...and me...:-)
5 comments:
((Hugs)) I know that it is so hard to see your child sick, and even worse when you don't have any real answers. I'll be praying that this gets figured out quickly and with the least amount of stress (for you and Jocelyn!)
Carrie & Sam,
It has got to be so hard to watch your daughter having these episodes and now knowing how or what to do to fix it. Hang in there. My thoughts and prayers are with all four of you! Let me know if you need anything; we drive through Ellensburg at least once a month now! Yakima is not too far away! :)
I hope you are able to get her blood work done soon so you can get closer to solving the Jocelyn puzzle. I will keep her in my prayers and pray for speedy answers and solvable problems.
Hi Sam and Carrie,
I am so glad that the doctors and staff at Children's were able to give you quality care. I hope that you find the answers to Joclyn's difficulties. I am also thankful for your blog and updates. Your family will be in my prayers.
Gar
P.S. I have been organizing our storage since I have returned from Yakima with my grandpa's car loaded with highschool/college memorabilia that was stored at my parent's house. And guess what I found? Your wedding invitation to me! You did send me one! Yay! Unfortunately I never did send the response card. I must have been wrapped up in my life at the time to never have sent it back. Anyways, sorry, but know I am much more vested these days as I have joined the "Married Club!!!"
Carrie, I will certainly be praying for you and little Jocelyn. I'm so glad you brought her over to Children's and that you have a "plan". That must help a little. Love to all of you!
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