redmcgee

Yes, the same thing crossed my mind. What if she goes on shots and then still eats those massive amounts of food. That would just cause more problems. That's why I need input from the endo and dietician. I was just trying to bounce ideas but it really got twisted into an ugly thing on that thread! I also wondered about the attention-getting factor. She has only gotten 1 or 2 postcards from home and about 3 phone calls. That's not much over a period of 6 months, in my opinion. She seems closer to her grandmother than anyone else. Thank you, for your input. I really appreciate it!

Clare sees spots before her stomach aches (and later headaches).
The trick on the blood pressure is that it doesn't adjust properly to circumstances. The big test (which my kid doesn't fit into properly!) is they check bp and pulse lying down and standing up. It's the change that they register, not necessarily a drop.
I don't pretend to entirely understand it, but it's working for us. The cardiologist said at our appointment that most kids that get diagnosed have seen a LOT of doctors and had no good answers for a pretty long time, so when I read your post, of course. I don't see why low carb Gatorade would be any different, the idea was the salts. Hope you find an answer soon, if not this one, another good one!

Hi, please excuse the random message but I've vowed that from this point on I'm going to speak up any time I hear anyone talk about long-term abdominal pain mystery. We have been playing this game for two and a half years and gone a million directions, finally had a GI tell us about this regulatory nervous problem that is related to POTS, fibromyalgia, chronic fatigue, and IBS. The thinking would be that she can't regulate her blood pressure well. The prescription was a huge drink of Gatorade every morning -- enough liquid that she urinates clear, with the Gatorade being for salt. She needs a high salt diet to raise her blood pressure.

We've had a LOT of progress with this. So, it might not even be our problem and seems unlikely to be yours, but it's definitely not something doctors think of right away and it's easy to test out.

Hope you figure it out and she feels better soon. Your baby has my every sympathy, as do you, it's not a fun road.
Lisa

Thank You all and I hope you all had a very Merry Christmas and a Blessed New Year

HAPPY NEW YEAR !!!! Hope all is well with you and your family.

Hope you have a great holiday season :)

Hi, thanks for the friends request...I have added you...:cwds:

Hi, I just read your recent post about your daughter being unhappy about diabetes. I don't have any really good advice- I think listening is a good start but you sound like you're trying and that's really a lot, I think.
Then since I read the post I noticed your location, and I want to point out that I've been hoping (rather vocally) that someone from CWD would be willing to host me for a few days, in return for my company and babysitting, in December. I would travel to the nearest Greyhound/Amtrak station, stay with the host family for 3-10 days, and hang out with the family and possibly babysit the kids if they need babysitting and the parents are cool with that, but primarily it would be so that I could meet people and they could meet me.
I'm a 19 year old guy who was diagnosed with diabetes 2 years ago. I'll be 20 by December. I'm a math education major in my senior year of college. I don't know if a 9 year old girl would identify with me much, but I tend to find that I get along well with most people, and I'm very open and knowledgable about diabetes.
Jonah

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I love this site it has been so VERY helpful. I have learned so much.