Hi JJ's Mom,
I too am a mother of a child living with diabetes. My son was diagnosed at the age of 3. He is now 9-1/2 years old.
before I give my input, I need to clarify that i am not a medical professional, so this is NOT inplace of medical advice. I am giving my input based on my knowledge and personal experience.
Also, I apologize for the delay in my response to your post.
I am sorry that you are having a difficult time right now. Being a mother of a child who has diabetes can be scary and cause anxiety..I know. At times, I sleep with my son because I worry he will go low during the night.
You may have already heard of the Honeymoon Period, but I thought I would add this. This could possibly be what your son is going through / experiencing.
The period of time shortly after the diagnosis of Type 1 diabetes during which there is some restoration of insulin production and the blood sugar levels improve to normal, or near-normal, levels. Unfortunately, like other honeymoons, this diabetes honeymoon doesn't last forever; it may last for weeks, months, or occasionally, years.
You may have already done these things, but I am trying to put myself in your shoes and tell you what I would do since we both have son's who have diabetes.
If I was going through this with my son, I would:
a) Make an appointment with his Endocrinologist (I would bring a copy of my son's insulin schedule with me just to have it handy)
b)bring his logbook so his doc can see certain times of the day / night that he has lows, so he can see if there is a certain pattern and then make adjustments to the insulin accordingly.
You have probably done these things already. If you schedule another appointment, possibly request the person on the diabetes team whom you are most comfortable with.
Low blood sugars are scary. I would say that since your son has had so many episodes including one where he lost consciousness, the dose is to high for him right now, but, that is for you to discuss with his Endocrinologist.
Remember, you are his Mother and you need to go with your gut feeling.
I keep a couple of those little gel frosting tubes on my son's night table. If I ever test him while he is asleep and is low, I can squirt some frosting into the side of his mouth and grab a small juice box (the 15 gram one:) and gently wake him and although he is half asleep, as long as I put the straw up to his mouth and say, honey, you are low, drink a little, he will. The gel frostings come in handy!
Although it has been 18 months since JJ was diagnosed, I have a sneaking suspiscion that he might be experiencing the honeymoom phase.
Sorry that I cannot provide answers to all of your questions.
This link (below) might be helpful:
My heart goes out to you. Please talk to your son's endo about possibly lowering J's does a little more if he continues to have these terrible lows.
Keep us informed and check back as others will post comments for you.
It's so frightening when youngsters are hypo since they really can't yet feel it coming on and verbalize their needs. I'm not a physician and am relieved that you've got calls in to your team.
As a long-time diabetic, I'm thinking about this along the lines of what I would do if *I* were experiencing the types of hypos your little is. I would certainly do as you have done -- cut out or provide minimal insulin. The short term effects of potentially running high seem easier to handle than the lows.
I'm sure that it takes our bodies several days or longer to recover from severe lows. Our liver needs to rebuild its store of glycogen in order to help deal with a future low -- and that rebuilding takes a while. For that reason, we often experience "clusters" of hypos because our built-in defenses against bottoming-out have been sapped by the previous hypo. I hope I've explained it well enuf to be understood.
I also want to tell you that hiccups are expected even tho' we may go weeks or months without anything serious happening. It's one of the tough issues with DM -- things do happen.
I'd liek to recommend taht you study up on hypos and one of the best resources I've found is the JDRF website (www.jdrf.org). On the top left of the screen, select RESEARCH and then type hypoglycemia in the search box. There were over 100 articles that discussion prevention techniques and research aimed at understanding them better, too.
Will you check in again and let us know how things go? I'm sure you'll get more responses, too.
From J J's mom.
Thankyou so much for the comments from the team. I am really touched by the thought you have given to my question, and the heart behind your comments. Thankyou!
JJ's Endocronologist was in touch a few hours ago, and was ready to admit him to hosp. for observation, but I thought he was "turning the corner" so to speak, although I'm not so sure about that now. He is on a new sliding scale of insulin, and is only needing about a fifth or less today of his usual dosage, and has had only one hypo today(20 mins after his Endo rang!).I have been keeping a detailed log. Because I am a solo parent with five children,I am trying to avoid hospital admission unless it is really vital.
Re: Honeymoon period; I thought that normally occurred almost immediatly after diagnosis, and JJ has been diagnosed for 18 months now. Could this still be it though?
Thanks for the comments regarding post hypo clustering, and the body's need to rebuild resources. This makes sense. It was his most severe hypo yet, so I guess it has knocked him a bit.
One suggestion by a member of the local Diabetic team was that he may be suffering from an accumulative effect of too much long-acting insulin.Anyone else experienced this?
I do have my son sleep next to me so that I can be aware of his condition at any time, and I, too, find that he sips and sucks quite readily,the sweet drinks or glucose when he needs it during the night.I can so relate to that whispering in the ear to tell him that he is low, and watching him respond in his sleep.Diabetes might be a "game" we didn't want to play, but it sure draws us close to these precious little children.
Many thanks for your feedback. I appreciate it all.
J J's mom
Hello again, JJ's Mom,
I am the mom who has a 9-1/2 year old who was diagnosed at the age of 3.
I used to fill a little spill proof cup with gatorade and put it in the bed with him. He had one of those car beds and there was a little space between the mattress and the plastic car frame and I would kind of wedge it in there and he knew it was there for him if he felt low during the night. Of course I checked on him every time I woke up during the night.
Well, one night I peeked in on him and you know how little kids hug a stuffed animal in their sleep? My son has holding his cup. I almost cried. That was his security blanket...his cup.
As far as the Honeymoon Period, what I posted before. (below) is some of the info. I found while searching. You might hear different things as far as how long it could last depending on where you look or who you talk to. It has been 6 1/2 years since my boy was diagnosed, but it feels like he has always been living with diabetes.
(Posted in my previous post)
Found While Searching:
The period of time shortly after the diagnosis of Type 1 diabetes during which there is some restoration of insulin production and the blood sugar levels improve to normal, or near-normal, levels. Unfortunately, like other honeymoons, this diabetes honeymoon doesn't last forever; it may last for weeks, months, or occasionally, years
Wow! Five kids and a single parent. Pat yourself on the back.
I have a little tip that I have given to other moms who have children who were recently diagnosed. (I know for JJ it has been 18 months) If your son has problems recognizing when he is low... (I am not referring to when asleep at night, because I have tested my son in his sleep and he has been low and it did not awake him, I did) here is a suggestion: When he is low during the day when you test, but he was unaware, say, honey, you are low right now, so whatever you are feeling that is low blood sugar and do this everytime. (of course while you are giving him a juicebox, etc.:) I did this with my son at the age of 3 figuring it was new to him and he might not recognize a low.
Please keep in touch. Ihave tips for when he starts kindergarten. (not that you even want to think about that now!)
My son had 2 lows today at school and the Health Aide (there is not a Nurse at school - only a district Nurse who pops by from time to time) is good about treating the low and then calling me. Last year, we had times that she did not call me, so I had a long talk with the District Nurse and things have shaped up this year!!!
My son's Endo once said that "trying to control diabetes is like trying to control a natural disaster!"
Please keep us informed about JJ. We are all here for you. Believe me, there are times that I still cry and it has been 6-1/2 years.
Hugs to you and your children.
I can tell you that I believe our children living with diabetes are very special. My son is extremely compassionate and concerned about others. Imagine a fourth grader coming up to his sister who is a kindergartener and giving her a hug and a kiss on the cheek and saying have a nice rest of the day....that's my boy!
Thankyou for you helpful comments and hints. It seems as if this is the "honeymoon" period. I though that would be a good thing, but the increased sensitivity to insulin and change in requirements has made life even more of a challenge. It is like having a newly diagnosed diabetic child all over again, and having to relearn what his needs are. I wonder if this honeymoon period is happening now(after 18 months) because it is only very recently that we have gained significant control, and so it is only recently that his pancreas might have had a chance to recover a little. I actually find it a little frustrating. We were just making such good progress, and it's like having to start over.We are adjusting though, and I know we'll get the hang of things again.I could relate to the comment likening Diabetes control to controlling a natural disaster!! I'm not so worried now while JJ is young, but I'm already praying for a "super wife" for him when he is older!I think, ideally, people with Diabetes should always have a knowing/caring buddy around them at all times.
I think the advice you gave re: helping children to be "hypo aware" is excellent and important.I have tried to do likewise, and again we were getting good at it, but he seems to have lost that "awareness" again.
You sound like you have lovely kids, and their developing compassion is a great characteristic to have.
Thanks again for your replies.
J J's mom
Dear JJ's mom,
I am so sorry that you and your son are going through such a difficult period. This disease can be so confusing with the balancing act that we need to go through. My son was diagnosed with type 1 at 8 and is now 27. You have recieved great advice from SS and LRS, but I wanted to address your fear for his future.
I have also had the same concerns, but would like to reassure you that in the 15 years as a volunteer with the Juvenile Diabetes Research Foundation, I have met many "super girlfriends and wives" and "super boyfriends and husbands" along with great friends that call me if they have not heard from him. They have my phone numbers and I have theirs. Many, many people with diabetes find their significant others and have long and successful marriages. While my son is not married yet, he has had terrific girlfriends that understood his diabetes and realized that this is a part of his life. I will never forget a question that was asked in this forum by the fiance of a young man with diabetes. She was a bit afraid, but after reading many comments and learning more about type 1, she came back and commented that while she has always embraced him, she has also learned to embrace his diabetes. This simple statement will stay with me forever.
I would also like you to understand that research is moving at a fast pace. I never give a timeline, but I am very hopeful that we are closer than ever with the breakthroughs that I have seen. This is only my personal opinion and I am not a physician or researcher, but I never give up hope that a cure is sooner than later.
JJ's mom, please let us know how you are doing. There is also additional help through the jdrf website that SS suggested for research (www.jdrf.org). You can also click on the Online Diabetes Support Team located on the left side to recieve one on one support from a member of our JDRF team. I look forward to hearing from you again and hope all goes well with your dear son.