Life with Ehlers Danlos Syndrome: Sydney goes to the doctor

[@CARLOSJIMENEZ-st2xh]

Perfect. Lots to enjoy All day, thank you. Pure Joy.

[@christineclarevilgos-mitch1955]

She can drink water for this test. When you have a lot of high sugars you get hungry because when you eat you don't absorb the sugar; but eating uses sugar and calcium so you are actually losing weight when you eat, technically. If you look up diabulimia and ketosis it can give you a better understanding of the science.

[@christineclarevilgos-mitch1955]

Keep something like gushers or fruit snacks on hand. Real lows are not fixed by peanutbutter or anything with fat. If you need to get your sugar up fadt you need simple sugar only because if there is fat you digest the fat first. Peanutbutter is better to maintain over the day or night but not for lows. If you are low while sleeping it's good to have peanutbutter after you treat because it will help maintain the sugar once you get your sugar back up. Also 75 is a little low for a type 1 diabetic. Maybe not for a pre diabetic; but 75 can turn into an emergency fast once insulin is involved. 100 is pretty perfect. Cold certain also helps but if you are low low and dropping you just need sugar. Fruit snacks, gogurt, and nectar juices are my go to and have saved my life many times.

[@christineclarevilgos-mitch1955]

Also be blunt and completely honest with her. My transition really messed with my head severally. The doctors only made it worse. I've always been able to handle anything and been the one that emotionally and mentally could get through it all; but this transition really messed with me. Also when insulin comes into play she will even out to any weight that people may think she needs to gain on her own. Do not force that because it will happen naturally. Focusing on weight can really mess your head up when you start getting older and growing up. It will all be okay. And if she becomes diabetic she will adjustment because she will realize she feels better and that the shots and everything else help her and keep her alive and healthy. But be honored. She needs to know everything that is happening to her because the shock of the change is really hard mentally. I know some of the diabetic KZbinrs make it look easy; but they are preforming for the camera. It's hard, maybe mentally one of the hardest transitions of my life.

[@UniquelyZebras]

Yeah I understand that. I do my best to be very up front with my kids I don't want them to be shocked so we talk about what diabetes mean all the time. I also don't concentrate on her weight to much I have just noticed she isn't gaining and is very skinny but I know that will adjust. She is doing really well on controlling her sugars by diet so hopefully we stay that way!

[@rubytheservicedog8655]

Poor kid if she hates blood draws and has diabetes and needs insulin how will she be? I hope she can cope if she is diabetic and you guys find the right answers.

[@UniquelyZebras]

She will adjust as all kids do. This was just the first time she ever had blood drawn.

[@kristinwallace6551]

Hope they don't find that Savannah has Chiari or CCI. Both suck but are common in EDS. I will be needing a decompression and fusion at some point soon for both. Hope Sydney gets a Dexcom. All the best. Sending love from a cEDS zebra.