wow it really does affect Riley. One of the boys had a grand mal seizure today his first one and she saw it. She was really worried when I had him at the hospital she has been running in the 300's before dinner and now after she is 466!! I am waiting for her to have to pee just to make sure there are no ketones. Surprisingly she is really calm. She thought she was low tho cause she is hungry. Kinda weird. I think maybe I will have her wash her hands before we test again for her bed time snack number in 15 min.
something like that can be very stressful and scary for anyone! her blood sugars will eventually come down. it's good you are aware and keeping on top of it. so sorry to hear about your son, though. i hope everything will be okay.
Thanks C I just checked her for ketones and there are none. Its crazy how much it went up today after that happened. She was at 140 when she got up tis morning.
He is ok now. Both my boys have absence seizure they just kinda space out. There are not on meds for them cause they have never worked on them. It was very very scary and something I never ever want to see him have or him have period again. I took him to the ER and they released him after a cat scan and mri. No meds or anything we have to call his doc monday set up a appointment and get to a neurologist asap. They have not been to a doc in 2.5 years because of well life. Now we have to find a way to get them in and balance their medical needs with Rileys.
things will get better for you :o) you are doing all the right things. we are here to support you when you need it.
things will get better for you :o) you are doing all the right things. we are here to support you when you need it.
Jessica, I can't imagine a day in your life. You're awesome.
I have been wondering something about stress too. Can BG rise due to "good stress?" I mean, like when Brandan was excited about going to a Christmas party his sugar went sky high and stayed that way for much of the party. And when he gets worked up or anxious about something fun or a visit with someone it elevates. It could be coinsidence because he has a lot of highs anyway, but I've been thinking about the stress factor for a while.
Trish I would say yes. Rileys seems to go up some when she is excited for things as well but not like it does with bad stress.
You know when you staid up WAY to late and have to be up early that is pretty much so how I feel all day long but I have to do it with a smile on my face and run around like a chicken with it head cut off. I just ran down stairs when I opened this cause I heard a noise my heart was racing and I felt like vomiting. Man does that kid snore loudly lol. If I let it the fear could easily paralyze me. I want my mommy here with me (she is a nurse so a extra bonus there) to help me and to just tell me it will all be ok. I am feeling slightly negative right now cause its never going to be ok again. My kids are broken and while they will grow up and live long kinda normal lives I cant fix it for them. They all will struggle they all will have it harder than their peers. With Riley it will make her stronger in the long run but my boys dont need anything else wrong or harder on them. I love my kids as we all do but I am a big fixer and cant fix this for them and it makes me mad. I am glad for all the hugs kisses and laughter they bring to my life. Those times alone make it all worth it. I will make it and I wont let all these obsticles take me or them down but man to curl up in a ball, cry and just for a little while not have all of this on my shoulders would be nice. Tho I fear wishing for such a time because the only way for that to happen is for something worse to happen to them and that I dont want. So this is my life and their lives accepting and trying to move on.
I know they are not t-1 related and I am sorry for unloading here about them. I need to find a forum for parents with t-1's high functioning autistic epileptic adhd kids. Oi I was on a epileptic one but they dont get the rest of the boys problems, a autism one but they dont get the rest and now I am just unloading it all here. I feel bad for it.
Jessica, I for one don't mind you unloading here and I bet nobody else does either. I can't compare what I live with on a daily basis to what you face, but I understand your feelings. Brandan is bald from alopecia, has obsessive compulsive disorder and is in speech therapy. Again, I know it doesn't compare to your situation with your boys. My point is that I know the helpless feeling of trying to give our children a "normal" childhood in spite of their obstacles. I also can relate to being just tired and wanting the break that we will never truly get. The good news is that there are others like us out there. The ones who see a child for who he/she is instead of the problems they have. I have met a lot of autistic children and their parents at Easter Seals, where Brandan has speech therapy, and at Children's Medical Services, where Brandan sees his endo team and dermatologist. I have learned how every child is affected differently by it. I can imagine that ppeople assume things about your boys that may or may not be true when they hear the word autistic, the same way people assume they know everything about diabetes because they know someone with T2.
Jessica, as much as we have chatted it seems silly that I never sent you a friend request. :) I'm about to do that. Feel free to talk to me anytime about anything, D-related or not. :)
For us good stress can go either way. The day the circus came to town he was high, high, high. no matter how much we corrected, he didn't come down. The day of his birthday party I thought he would be high as he was so excited, but he went a little low before lunch. I think on Christmas he was just right all day (I have a hard time remembering christmas for sure as we were up at 4:00 am that day:)
Jessica, while this site was set up around type 1, we all have other things in your life besides type 1. i find dealing with type 1 (son and husband) stressful enough. I'm sure if we had other things I would unload them here too:) While I really have no idea what you go through on a daily basis, my husband works with twin boys with autism and when I first read your situation and tried to imagine what life would be like if we had them plus ezekiel and I would be double or triple exhausted! I also have a co-worker whose son is type 1 and down syndrome. I know that she has been on type 1 sites and down syndrome sites but there just doesn't seem to be one for type 1 and downs rolled into one.
Thanks to you both. Its so hard to focus on anything else when fear is griping at your heart. I am not over the fear with Riley and now I have to live with a new fear. Its horrible not knowing when or if another one of these might hit and to know I might have to watch my child have another one of these almost kills me. I am now scared to ever be alone with him again. I know I will have to be but it scares me still. Riley is having a very hard time with this as well. I reassure her of all the facts that while they are scary to watch he will be ok it doesnt make her feel much better either. I am having so much anxiety right now its driving me nuts. I dont know how to let it go and not just worry. blah.