View Full Version : I need your help!!
Caydens_Mommy
03-24-2008, 12:30 PM
First let me say Hello to all!! I a hoping this place will help me. I have a son who was diagnosed with Type 1 diabetes in October. He turned three yesterday!! He also experienced his first low episode yesterday! He woke up and his eyes were as wide as they could get. He started this weird screaming and twitching and jerking and he would grasp anything he could get a hold to and grip it so tight his hands would turn white. After we got a little sugar in him he finally started talking and said that a bottle looked like a snake. After the whole incident he said that he was seeing monsters and ghosts and snakes and all kinds of things. Is this normal?? This is was very hard for me to handle and experience. All I can think about is this sight of my child.. And I've heard it doesn't get any better!!
Seans Mom
03-24-2008, 12:35 PM
Welcome to the boards. I'm sorry about your sons dx. It sounds like he had a seizure. I've read about other children having the same reaction to severe lows. I'm very sorry, I know it's scary. It does get better. The more you learn the better you will be able to take care of Cayden. Please ask any questions you have, I'm sure you'll hear from parents who have been in the exact situation who can help you through. Sending hugs your way.
Charmed7
03-24-2008, 12:36 PM
I'm sorry that you had to go through that. Though we never experienced a low level like that, you have to think, his brain is not getting enough sugar to function properly. So the loss of muscle control and hallucinations could very well be what happened.
Have you talked to his doctor about this? I pray it never happens again, but if his low numbers become frequent and are as traumatizing, I would look into CGMS (Continous Glucose Monitoring System).
There are lots of posts about CGMS here. So look around, and keep us updated on your son. Maybe he won't remember what happened in a bit while his sugars stabalize.
Also, with a low sugar like that, be prepared for a high rebound (a very high sugar level). You might also want to ask his endo on how to handle that number as well.
Good luck,
Charmed
I know it's very scary to see your child like that. You have to remember to stay calm as difficult as that is. It does get better. I would say it's common when sugar drops really low to be delusional and have hallucinations. You could try doing even more bg checks for a while to help ease your fears a little and maybe help ward off a hypo like that. He'll be ok. It won't always be like it is now.
Caydens_Mommy
03-24-2008, 12:42 PM
What was strange was even with all the sugar we gave him to bring it up he was 350 at lunch but his dinner test was 110 and his night time test was 125 and this morning he was 114. He never ran high.. I have not called his doctor yet, but was going to. Although his father said that it was just a low blood sugar attack and they won't do anything, but I do feel more comfortable calling them.. Thank you for your reply's it's great to know there is a place like this to be able to talk with other people. I do know that i could sure use a support team like this especially right now.
MamaC
03-24-2008, 12:43 PM
Welcome. My son is older and has had 2 seizures. I'm sorry you had to go through that. While you may see a high rebound afterward, our endo also cautions that we may see another number low enough to cause another seizure during the next 24 hours. And no one can predict what number will be the one low enough to seize. My son has been under 20 and perfectly fine but we don't know what numbers caused his seizures because the previous readings were well within range and not falling.
It's part of the whole "expect the unexpected" nature of the disease, or as I like to call it, "everything turns to crap once in a while...and then you're ok again."
~~Becky~~
Caydens_Mommy
03-24-2008, 12:45 PM
He was only at 47 and has been lower and never had a problem as well!! I don't understand that..
Is it possible he had a rapid drop from a normal number to 47? That could cause it. My son's never had a seizure but he's been extremely close to passing out before. One time his sugar went as low as 22 and he was completely coherent and alert. Other times his sugar would be in the 60's and he'd be on the verge of unconsciousness. It's all very random and unpredictable.
Caydens_Mommy
03-24-2008, 12:53 PM
Is it possible he had a rapid drop from a normal number to 47? That could cause it. My son's never had a seizure but he's been extremely close to passing out before. One time his sugar went as low as 22 and he was completely coherent and alert. Other times his sugar would be in the 60's and he'd be on the verge of unconsciousness. It's all very random and unpredictable.
Wow! That's pretty low. Yea I wish that things could be a little more predictable would sure make live easier for everyone!! But we aren't that lucky.. The scary thing is he doesn't show any signs of even being low ever.
MamaC
03-24-2008, 12:57 PM
Ya know, I'd call the doc despite what your DH says. They should know and they may have goiod advice for you.
Our endo also said that a prolonged period at only a moderate low, say 60, can cause a seizure.
Unpredictability, thy name is diabetes.
~~Becky~~
He's only 3 so I can imagine it would be very difficult always to see the signs in such a young and new dx'd child. Plus he's probably not old enough to recognize them himself yet. It will come in time. Is he still in the honeymoon phase? The honeymoon phase was the cause of many scary hypos for us in the beginning. The body still kicks in its own insulin and things can go from ok to bad in the blink of an eye.
Caydens_Mommy
03-24-2008, 01:02 PM
He's only 3 so I can imagine it would be very difficult always to see the signs in such a young and new dx'd child. Plus he's probably not old enough to recognize them himself yet. It will come in time. Is he still in the honeymoon phase? The honeymoon phase was the cause of many scary hypos for us in the beginning. The body still kicks in its own insulin and things can go from ok to bad in the blink of an eye.
He has already made it out of the honeymoon phase, or so we think! He has more highs than lows usually.. At first we could tell he was getting low because he would get cranky but not anymore. On saturday he was outside playing and I told him we needed to check his sugar and we did and he was 53 and just playing his heart out. I do think I am about to call his dr now.
TracyM
03-24-2008, 01:02 PM
Hi - I'm sorry about your son. My daughter was diagnosed last year right before her 4th birthday. When she gets low - she usually tells us and is usually very tired - however, if it is in the middle of the night - she almost always wakes with a bad dream - seem like a similar situation. Keep your eyes open and by the way, it's not that it gets better or worse, you will just learn to adjust to the situation and everything will become second nature to you. Eventually his sugars should get to some kind of pattern where you can be aware of whats going on - although, you still never know. Check him more often - at least until he can realize when he's feeling low himself and tell you. Good luck, sending prayers and good wished to you!
Skyefire
03-24-2008, 01:09 PM
I am sorry you had such a bad day, The first low can be scary, Phoenix had his in the middle of the night and was not responding to much, just screaming and hitting.
Not all lows are that bad, he must have been really low! a slight low will not be as bad, for the most part.
Phoenix now tends to get very hyper and silly. Sometimes it is almost funny to watch him act like that.
MrsBadshoe
03-24-2008, 01:21 PM
He was only at 47 and has been lower and never had a problem as well!! I don't understand that..
It also has to do with the period of time at the low number. Usually sudden drops or low numbers during the day are attended to quickly. At night time you never quite sure how long the low has been. The longer the time frame the more likely there will be issues.
Kaylee's Mommy
03-24-2008, 01:28 PM
sorry you had to deal with that.. sounds very scary!!
You tested at 47, but its possible that he was actually LOWER than that, and the 47 was on his way back up.. his body kicked out glucose.. or it could be a rapid drop to the 47, causing the problems.. I see a HUGE difference in kaylee if she's having a slow drop or a rapid drop.. we see much more of the shaking and her falling apart with a rapid drop.. she doesn't notice a slow drop..
I'm with the call your doc approach also. It was just probably a low bs; and your endo needs to know this for a zillion different reasons.
They can tell you what to expect for the next couple of days, like ping ponging
They can adjust dosages if necessary
They can recover how to handle emergency situations - I personally would want to know if I should have used GLucagon, even though he was awake - he was seizing - so I would definitely ask about that!
Also, if he keeps having lows, having them documented by the health care provider will be a big step in getting approval for a Continuous Glucose Monitor in the future.
Sorry this happened and good luck!
Judy&Alli
03-24-2008, 03:36 PM
Hi and welcome to the boards. I'm glad you found this site so early in your son's diagnosis. I found it a year and a half after my daughter's diagnosis. I muddled through the things that you are explaining by myself. This is the best place for support and knowledge!
I would call your endo asap! That is a very scary low and we were told in the beginning to call for all severe hypo's. They may need to adjust his insulin dosages. Good luck and keep us posted. Hugs to you and it will get easier with time!
Judy:)
Caydens_Mommy
03-24-2008, 03:38 PM
You all will be happy to know I have called and emailed his endo, we are now just waiting on a reply either way. I want to say Thank you to everyone for their kind words and support. The lord knows I need it.. Thank you again! !
Thoover
03-24-2008, 03:50 PM
Like the other posts call the Endo just to let them know.
My daughter had her first seizure in the summer time, and she was twitching and this horrible scream's she would let out. I was a nutcase.. We got it under control and her BG was 21. She doesnt remember anything. Once she came out of it she said "mommy why are you crying".. I was a wreck.
Caydens_Mommy
03-24-2008, 03:56 PM
Like the other posts call the Endo just to let them know.
My daughter had her first seizure in the summer time, and she was twitching and this horrible scream's she would let out. I was a nutcase.. We got it under control and her BG was 21. She doesnt remember anything. Once she came out of it she said "mommy why are you crying".. I was a wreck.
I was a wreck as all.. Thankfully his Daddy was home with us yesterday!! I did manage to check his BG levels twice during the ordeal. And go get the sugar.. But it was still extremely hard. I cried all day yesterday about it and had trouble sleeping last night, everytime i would here a sound come out of him I would jump up and want to check his sugar.
Thoover
03-24-2008, 04:05 PM
I remember like it was yesterday. I still hear the screams that came out of her. Horrible sounds. My son was in his bedroom and woke up he put the covers over his head and said is sissy ok.. I cried the entire night from 11:21pm till it was time for work in the morning. I put both kids in bed with me that night and checked her finger every hour. poor little girl.
The husband and I ran around the house like mad people getting the cake make gel though.. Thinking you never will need it. I had cans of corn rolling around the kitchen floor. The husband finally went to look for it and came running up the stairs like he was holding a torch saying I FOUND IT I FOUND IT.. I had the phone and was ready to call 911.. It was like the PANIC button was hit. Fire drill in the middle of the night.
It will get better though, Its hard but I have figured I pray and pray this is the only one seizure, but sometimes they do have more than one. Im not ready for a second though.
It is OK to cry though.. we are all here for you when you need us...
Caydens_Mommy
03-27-2008, 02:11 PM
Well the endo has called me back and stated that it was severe hypo eps, they do want to see him before his appointment which is April 7th, so we are going on the 1st. I called my dh to tell him what the dr said and he is getting on my darn nerves, he thinks just because he has D that he knows everything.. I told him that they want to leave him at 2 units of lantus right now and then that might change on Tues, the nurse said they would rather it be a little high than that low.. So my dh starts throwing a fit saying he wasn't going to let his sugars run 300-400, noone said to let them run that high!!! He only hears what he wants to hear and is mad because we have to go in a week earlier, he said he doesn't see what the difference is, that we know what he had and we know how to treat it!!! Today is just not a good day..
Thoover
03-27-2008, 02:23 PM
Was his low in the morning, before he woke up for breakfast or was it during a nap? I will tell you one thing that it was very hard for me not to cushion Britt during the night so I knew it wouldnt happen again. I just stopped doing that this past month. She had her seizure in Aug.
Caydens_Mommy
03-27-2008, 02:29 PM
Was his low in the morning, before he woke up for breakfast or was it during a nap? I will tell you one thing that it was very hard for me not to cushion Britt during the night so I knew it wouldnt happen again. I just stopped doing that this past month. She had her seizure in Aug.
It was before he ever woke up for the day.. It is also hard for me.. I have not cushioned him but would much rather it be a little high than severly low like that again.. I'm more upset with my DH than anything right now.. He just irrates me, he thinks that Cayden operates the same as him and he doesn't.. He does know alot of things about D since he has grown up with it, but that doesn't mean that he knows what is best for our son over the DR.
Thoover
03-27-2008, 02:36 PM
I noticed before Brittney got her pump when we did the lantus at nightime 6 units of it, she would go low 40's in the middle of the night. So I cut the lantus in 1/2, 3u at night and 3u in the a.m. Do you still wake up to do 3am checks? If you don't cushion him wake up inthe middle of the night and check. What time did he wake up yesterday? Sometimes I get up still with Britt and check..
I know what you are going through. Not with the hubby though, no one in my family has ever had diabetes..
Kirsten
03-27-2008, 02:41 PM
It was before he ever woke up for the day.. It is also hard for me.. I have not cushioned him but would much rather it be a little high than severly low like that again.. I'm more upset with my DH than anything right now.. He just irrates me, he thinks that Cayden operates the same as him and he doesn't.. He does know alot of things about D since he has grown up with it, but that doesn't mean that he knows what is best for our son over the DR.
It is a lot different to be the parent of a kid with D than to be an adult with D. There are some parents here with D that can probably attest to that. Not only is a 3 year old going to go through a lot more changes in insulin dose, but with such a small body and developing brain, he can get into trouble much faster. Also, he is recently diagnosed, so the next 6 months he's going to need even more adjustments. I'm sorry your husband doesn't understand that.
Kirsten
Skyefire
03-27-2008, 03:47 PM
I understand a little what you are going through, I just do not live with my mom so she can only complain about the information I give her.
My Mom has been T1 for over 30 years and of course all information that they give me about Phoenix is wrong...lol
My endo team told me to keep Phoenix on the higher side of normal range because it is easier to keep better control.
twodoor2
03-27-2008, 05:58 PM
Like you, I used to have very difficult days, but I learned really fast to stop relying on the endo for all changes. I'm not saying you shouldn't get guidance from your endo, but by giving them only the blood sugar numbers really doesn't give the true picture of what is going on. Many endo's don't have time to look at the detailed picture.
I suggest you read "Using Insulin" by John Walsh, and "Think Like a Pancreas" by Gary Scheiner (sp?). Once you start learning how different variables effect blood sugars and how insulin works, you can be in more control. Once you have that control, life changes dramatically.
Good luck!!:D
Caydens_Mommy
03-27-2008, 06:01 PM
Like you, I used to have very difficult days, but I learned really fast to stop relying on the endo for all changes. I'm not saying you shouldn't get guidance from your endo, but by giving them only the blood sugar numbers really doesn't give the true picture of what is going on. Many endo's don't have time to look at the detailed picture.
I suggest you read "Using Insulin" by John Walsh, and "Think Like a Pancreas" by Gary Scheiner (sp?). Once you start learning how different variables effect blood sugars and how insulin works, you can be in more control. Once you have that control, life changes dramatically.
Good luck!!:D
Well I have already learned to not rely on the endo for all insulin needs and learned to kind of adjust it to his needs... But I do still like to share things with him and get his opinon as i am no expert in this yet.. I will have to try to find those books, i am up for reading anything I can to learn more.. Thanks for the advice!
saxmaniac
03-27-2008, 06:04 PM
Unless your husband was managing his own D care at 3 years old, he has no idea how different it is. Stick to what your doctor says, kids are different.
Caydens_Mommy
03-27-2008, 06:11 PM
Unless your husband was managing his own D care at 3 years old, he has no idea how different it is. Stick to what your doctor says, kids are different.
Trust me I know this.. He says that he knows kids are different but he also knows things too.. Which I agree but I also know that he doesn't know everything and the doctor's aren't where they are because they don't know anything..
twodoor2
03-27-2008, 06:16 PM
Well I have already learned to not rely on the endo for all insulin needs and learned to kind of adjust it to his needs... But I do still like to share things with him and get his opinon as i am no expert in this yet.. I will have to try to find those books, i am up for reading anything I can to learn more.. Thanks for the advice!
By all means, you should share with the endo. Eventually, there comes a point where you no longer have to ask the endo for any dosage advice; however, I understand that people need to get guidance from their endos. Children are very difficult to manage, so I understand there is a level of difficulty there. It's challenging to manage small children.
Caydens_Mommy
03-27-2008, 06:38 PM
I actually very rarely call his endo, but this first low episode really scared me and I felt like he should know.. I guess they were concerned because they want to see us a week earlier than we were suppose to be seen.. But you guys here are great. It's comforting to know you all know soo much and someday I will be as knowledgeable as you all are on this topic.