I’m completely heartbroken. My 3 year old daughter had a seizure this weekend while we where in Michigan. Visions of her convulsing uncontrollably is a sight I will never forget. We had a busy day but still can’t wrap my brain around it. She went to bed and woke up making the worst noises I’ve ever heard her ramble before. Yet, I’m so thankful she was able to make those noises. It lasted around 40 seconds which seemed like forever. I could barely get the glucagon ready without shaking uncontrollably. I was pouring apple juice down her throat as she was spitting it out because she could barely swollow. I feel like I made so many mistakes and am so angry at myself for it. Thank goodness my husband is the calm one. She was diagnosed in July of 2008 and I am still heartborken and angry. Many people tell me it will get better and I’m just waiting for it. I want a cure for her so bad I can taste it. I would give anything.
Hang in there, Andrea, and do not beat yourself up. These scary moments happen. I have a couple of memories that I will never shake when combatting some of my wife’s lows. These events hit hard and the best you can do is take small important steps that will help you stay calm to treat a bad hypo in the future. I’m with ya… a cure can’t happen soon enough.
All Best,
John
Thank you John. Day by day I will continue to fight for my daughter just as you do for your wife and son.
Andrea,
Images of your child suffering are without a doubt the most difficult images to shake from your mind. But don’t despair. It’s very important that you and your daughter learn from this, and since I can tell how much you love her, I know you definitely will. As a parent, you will soon get to the point, with diligence, where you will almost innately know where her numbers are and you will be very sensitized to anything that will make her go hypoglycemic. But don’t be tempted to err on the other side. While intermittent highs are better than almost any lows in children, the sooner you are able to keep her at or near her target, the better off she will be in the long run.
PDriscoll (@medmarket)
Hang in there, Andrea. Last November, after being diagnosed for 8 years, my son had his first, and hopefully last seizure. We were on an overnight campout at the zoo with his cubscouts. For about a month I was regularly beating myself up about what I did wrong, what I could have done differently, what I should have done differently. Most of it was the guilt over knowing what I did versus what I know I should have done.
The biggest lesson I learned is that we can’t beat ourselves up over this. Yes, we are the caretakers, and, sometimes bad things happen on our watch. But, we have to learn from these ‘life’ lessons, and step forward without the guilt.
Our kids have diabetes. They key phrase in that statement is ‘Our kids’, not ‘diabetes’. We can’t put them in bubble wrap and protect them from all harm. If we do that, the monster wins. They have to go out and experience as much of their childhood as possible. Let them go out and have their fun. Let them eat their cake. Yeah, the monster still lurks while we are on watch. But, if they are having fun with the other kids, the monster will not win.
Prayers,
Mark
Thank you Patrick. I’m trying to reply in my head what I could have done diffrently so I can learn from it. Hopefully it will never happen again but I must be prepared. Take care.
Mark,
I’m sorry to hear about your son. The images are horrible and hard to get over. I appreciate your kind words and wisdom. You are right, I cannot let the monster win and I won’t. It’s just so hard sometimes and I feel like I get lost in the shuffle. Thank you for your prayers.
Hello Andrea:
I’m sorry that your Baby was dxd. In time you will learn most of the ins and outs of Diabetes. I know that it’s difficult but try to relax during the scary times so you can think logically and do the right thing.
I was dxd. at age 3 and my Mom mainly, looked after me. I still hear about the “terrifying” seizures. There wasn’t much info about Diabetes back then in our area. But we still made it through.
We all regret and get mad at ourselves for things we should have or shouldn’'t have done. But it’s just Best to learn and to hopefully not repeat these mistakes, instead of beating ourselves up, as has been suggested.
It’s normal to make mistakes.
I just thought I’d add in case you hadn’t been told, not to give your Child, anything by mouth, if she is unconscious and/or is seizing.
We all hope for a cure in the near future, Your Daughter will most likely be a winner of that Special event. :o) Best of luck and Take Good Care of both of you.
p.s. Terrific pictures that you have there. Your Little Girl is a Sweetheart. :o)
p.p.s. My Daughter had Febril and Epileptic seizures for many years, so I know somewhat of what you are going through. Thank God she outgrew them at age 12.
well, Andrea, Your daughter could still be in the honeymoon phase, so it may be harder to keep her level. You have only been diagnosed 6 months!!! That is really still so early . I remember 6 months into my son’s diagnosis when it is all so new and scary - especially after a seizure!!! My son was diagnosed 6/ 2005 and I can say, I am better with it now then I was then. He is about to turn 14 and I have to allow him to become more independent… For the first year or so, I was so nervous letting him go anywhere , although I did, It is not fun to have a child with this disease, but it is manageable. When my son was in the hospital, we were on the floor with several oncology patients who were so sick. He kept asking me what was worse, cancer or diabetes. I considered that to be a blessing, because I told him that diabetes was manageable and you could live a very long time if you took care of yourself. This helped to put it in perspective for both of us.and he has never missed a beat. I on the other hand do worry about it. You will find that it will get better with time - just because you get more used to the highs and lows and what you need to do. I wish you luck. Keep us posted. Nancy
I also want to add that I think it is normal to be angry and heartbroken. I think you have to go through those stages of grief before you can move on. What you are experiencing is very normal. Don’t beat yourself up. Nancy ( again)
I am so sorry you had to go through this! I hope your daughter does not remember anything that transpired, as can happen after a seizure. You did keep your wits about you, and you did give the Glucagon. That is what is important; of course you were shaking, who wouldn’t be! But you did it. Do not get angry at yourself for “mistakes.” I doubt if you made a mistake, this just happened. It could happen to anyone. I hope it never happens again; once is enough! Things will get better for you, I promise. And if you feel her numbers are just too unstable, keep documentating for insurance purposes and try to get a continuous glucose monitor to help you and her. I hope you can give yourself a pat on the back for a job well done. Not sure how I would react in that situation and if I could react quickly enough.
Oh God, I’m so sorry you had to experience that. I have been there with Eric and it’s so hard. I know EXACTLY how you feel, because you’re trying so hard and you’re so scared you’ll screw up to the point of hurting your baby. But the fact is, we do the best we can and sometimes these things happen anyway—and you dealt with it, that’s what matters, and the experience will make you better able to deal with it if it ever happens again. Hang in there, and don’t beat yourself up! Listen to the people on this site, and it will get better. I was darn near suicidally depressed when I overdosed Eric, but after a few minutes of reading the support I had here, realized I could get through it. And you will, too.
Oh no!! I want a cure too!! My daughter is 2, and I live in that fear each day that I will wake up to a seizure.