Seizures!

So, my son has been diagnosed with T1 for 3 years and 1 month ago we switched to the omnipod system and we experienced our first seizure Saturday. I will have to say it was the scariest thing I have ever been thru! Now I am extremely paranoid AGAIN about him being anywhere but with me. Any words of advice from parents or anyone out there on adjusting to this new experience? My son had experienced several lows over the past 3 years and I never had any difficulty raising his blood sugar before so I guess I almost felt like it wasn't going to happen to him. His blood sugar was 25 and he had been that low before and I had been able to raise it easily. Wow, I feel like life just changed again, but now I am more scared than when he was initially diagnosed. Do you ever adjust to seeing that happen with your child?

I can’t say from a parent’s point of view, but a year after I was diagnosed I had a seizure. After being on an insulin pump I have not had any severe low blood sugars (knock on wood) -but it is very scary. I was diagnosed when I was 10 and had the seizure when I was 11. It occurred in the middle of the night, and luckily my mom was in my room that night and realized I was seizing. My blood sugar was 30 and my parents injected the glucagon. After this situation I was put on a pump to avoid another and so far I have not had a seizure since. I find myself checking my blood sugar often to try and avoid severe lows. My parents were very worried after the fact and it is scarier because you have had that “close call”. Maybe it would be beneficial for you to look into a CGM for your son, as you can set alarms for low blood sugars (as well as high). I’m not sure if you can ever adjust to this kind of situation, but as time passes it seems to get easier. Also, if you can figure out what caused the low blood sugar, you’ll be able to figure out how to avoid it again. I make sure to keep a close eye on my basal rates/boluses and to make sure my pump is functioning correctly. I know it’s difficult to go through, but I had my seizure over 10 years ago, and though I’ve had my share of lows- it has not gone to that extent since.

Was this an isolated incident, or have you noticed other, less severe, lows recently? If so, it could be that the ratios and/or basal settings might need to be adjusted. How much adjustment have you made to the initial settings? Did you consult your son’s doctor? OmniPod trainer? Maybe you’ve already been adjusting things, but if not you should know that it usually takes a couple of months to get all those settings set appropriately and learn how the body reacts to insulin being delivered this way (as opposed to injections) - it’s usually somewhat different for most people.

I am so sorry you and your son had to go through that. It happened to me when I was on vacation in Orlando when I was on MDI and I ended up in the ER. I haven’t had it happen since I have been on the pod. Does your son have CGM? Mine has saved me from severe lows multiple times.

Yes, we had alerady made some small changes to his basal rate since hehad started the omnipod but we made more yesterday. We decreased his basal and increased some of his carb ratios. He actually has had more lows since we have been using the pod, but he is also in much better control than he ever was before. The odd thing though is he had a very normal Saturday morning with no increased activity. The only strange event we had was on Friday at school, his blood glucose was crazy that day, he was low, then high, low, then high. I had not had that happen since we started the pod. I wasn’t sure if it wasn’t maybe something starting on Friday?? Who knows! Thanks for the support!

Thanks so much for the info.! I am glad to hear you haven’t experienced a seizure in 10 years, that really gives me hope! I talked with his doctor yesterday about getting a CGM, and it is on order! I really hope I can get a 7 year old to keep up with it and not lose it on the playground!

I can’t imagine it happening on vacation, how horrible for you! We just ordered as CGM yesterday, I am hoping it will help! Thanks for the support!

So scary. I am sorry you had to go through that. Good luck to you.

I can only relate to your sons point of view, but when I go low I seize, my wife, my kids and my brother have witnessed me in this state and would agree that it is the scariest thing they have ever seen . . . I hate that I have put them through that on several occassions. However, I have not passed out or seized on the pod and I have had it since 5/3/10. I know it is scary for both you and him as well when this happens. It is hard for me to give advice to anyone since I have been the one doing the seizing each time, but almost all of my events could have been prevented had I been better prepared and had glucose tablets or something with me at the time, it just seems so inconveinent to keep them with you all the time, especially when you are young, but it sure beats the alternative. Based on what my wife has told me I don’t think that you will ever adjust to seeing your child in that state. I can only imagine how it must feel to see your child like this. God bless your family, keep up the fight, your son will be fine. I have been fighting now for almost 35 years and I am doing great with only a few mishaps/seizures along the way. Take care. John.

Thank you so much for the encouragment! We have the glucose tablets on hand but honestly we have never used them, we have just always used juice, sugar, etc. Do they really work that well for you? At this point I feel like I carry around a pharmacy to try to be sure I have everything I “might” need for him when we are away from home. Lord knows it is alot! Again thank you so much for the words of encouragement, it really means alot!

We have a 3 yr old and we use the glucose tabs especially at night - it is easier to get her to take the tabs when she is tired and we can give her just a couple(only 8 carbs) since the juice would send her so high at night when she is not active. Glucose tabs are also smaller than the juice - so you can carry a few in your pocket if you want to leave most of the diabetes stuff in the car( sometimes that “diabetes bag” that we all have seems so big).

Definitely get some glucose tabs. I keep them in each vehicle, in my purse, in my briefcase, in my desk, next to my bed, and just about anywhere else I might be. Your son is old enough to keep some in his pocket. If he does not want to carry the whole tube, put two or three into a small Zip-lock bag that he can put into his pocket. If I go low, I usually eat 4 and that gets me back to normal. Since he is young, two or three may do the trick for him.

Thanks guys - I will try the tabs the next time we need them!