Doctor in denial

[DollCat]

My 5 year old was diagnosed at 15 months. Things are generally good, and her control is about right.

The only thing that is worrying me is this:

Occasionally when she has a bad hypo in the night time, she has some very strange symptoms. Bear with me, it's difficult to explain. She has these weird convulsion like "judders" which take over her body. She also (we worked out a year or so ago) halucinates and see lights and colours shift. As soon as she has some sugars, the juddering slowly subsides and she "comes round". Now she is old enough to verbalise what is happening I find it easier, but being a single mum it is quite difficult to hold on to her and get some dextrose or whatever comes to hand. I generally do the getting on with it bit and then let the emotions out afterwards, but it is truly scary to see it happening.
My main reson for posting here is because her GP said it was impossible to have a fit whilst still being concious, and dismissed my thoughts by saying she must be having a nightmare... I know this not to be true, and was tempted to get a video recorder to show him the evidence that she is still awake and aware of what's going on.
What I want to know is whether others have had similar experiences or symptoms, as I was mortified that my doctor would not accept my account of what actually occurs.

Thanks
DollCat (UK)

[Zolabudd]

Dear Dollcat

My partner has had Type 1 for 42 years (he's 46) and has exactly the same symptoms when his hypo is quite bad.  Once my 6-year-old came downstairs and said "Daddy is dead"!  Imagine my fear and shock!  However, it was my partner in quite a bad 'low' who was shuddering and shaking.  I've found it always possible to get some Lucozade down him until he comes round, when the shaking stops.  He also becomes clammy and suffers from light disturbances.  Please be assured you're doing everything you can, and discuss with the Diabetic clinic as most GP's here freely admit they're not experts and have a limited knowledge of diabetes.

Best of luck.

[jdrf team dm]

Dear DollCat
I am not a doctor, none of us here are, but you have recieved very important information throughout this thread. As a mother of a son with diabetes, we went through a very similar experience 15 years ago. It can be a very difficult dealing with what can happen with a child with type 1 and we do understand, but knowledge is power. The more you know the better. It is obvious to me that you are seeking that knowledge and support and if you would like I can refer you to our sister outreach program which is a one on one communication. If you contact http://www.jdrf.org and click on life with diabetes and then on your left, click on the Online Diabetes Support Team. A moderator will try to match you with an experienced volunteer with similar experiences.

The Juvenile Diabetes Research Foundation has such wonderful information and can also take alot of the fear out of it as a parent who is going through this with a child. I wish I had the same option 20 years ago, but am very happy that we can provide this information now. I personally use it all of the time.

Please let us know how you and your daughter are doing. What you discover can also benefit others and as always we are going to look forward to any questions or updates from you.

I wish you the best.

dm

[DollCat]

Thank you all for your comments. I especially appreciate the last one, as it did not fill me with fear and dread. I am looking as I write at a stack of drawings, and I mean loads (!) that my very creative daughter has been doing. So who knows about your theory...

Sometimes it's just reassuring to know that you're not alone in all this!

DollCat

[JDRF Team SGG]

I, too, am a long-time type 1 (35 years on insulin) and I am also an illustrator and graphic designer. I have had the "hallucination" type of experience occasionally with lows that didn't even have to be horribly severe. It happens rarely, but when it does happen, colors and shapes take on an appearance similar to an abstract painting and angles of edges of furniture appear distorted. It can happen when I am not in danger of going unconscious, and disappears as soon as glucose levels rise. I wonder if people who use the right side of the brain, the creative side, perhaps have this sort of thing happen more often than others in the diabetic community. I have a twin who is a fine artist, a painter, and she has had this happen also when low.

As for the jumping muscles, this also has happened to me when low and still very much conscious and even able to pour my own orange juice. In my case, the muscles first start to twitch and then can sort of take on a life of their own.

In both cases, I am very much alert and aware of what is happening. In both cases, bringing glucose levels up solves the problem. The interesting thing about hypoglycemia is that the symptoms can vary from episode to episode, and i truly think that it depends on what part of the brain is doing the work at the time as to what the symptoms are. Different areas of brain cease to be able to function properly, and so whichever part of the body is being maintained by that section of brain shows the symptoms.

[Lesley40]

I have had type 1 diabetes for 28 years. I have seen many low blood sugars, as the "night nurse" at a diabetic camp...i am not a medical person, it was simply my job to check people for low blood sugars. I saw everything, including some really weird behavior. One tip I learned for checking for low blood sugars, was to shine a flashlight in the eyes of the camper - if they reacted, I left them alone. If not, I woke them up, and checked their blood sugar level. If it was low, I would squirt syrup in their mouth, as long as they were conscious. Anyway, I'd just like to re-iterate the danger of low sugars overnight, and you may want to google " Dead in bed syndrome" It's scary, but we are most vulnerable when we are asleep, and it's important to lower the incidence of lows overnight. I have found since switching to Lantis instead of NPH, my night time lows have diminished (although I doubt I will ever be free of them). Good luck, and always have some quick sugar near your bed, to rid yourself of the accompanying reluctance to get out of bed in the middle of the night to go to the fridge when you're tired.
Lesley

[JDRF-Team-BL]

What you describe certainly can be caused by low blood sugar, even if your doctor thinks otherwise. Not all doctors keep up with everything about diabetes because it is not their specialty. But if you see the movie A Beautiful Mind they give him a convulsion with insulin, which they now do with electricity because too many people were dying from when they used insulin. Glucose works the best in treating low blood sugars because it can directly be absorb into the blood as glucose is the form all carbohydrates have to change into to be absorbed into the blood. This is sold in tablet form or, possibly better for you, in tubes of gel as you could massage it onto her gums. Plus, for instances of low blood sugar where it is impossible to get the person to swallow anything there is always the injection of Glucagon. Glucagon is available by prescription and comes normally with two vials, one a powdered Glucagon and the other a normal saline solution to reconstitute the glucagon with. Glucagon is a hormone screted by the body to make the liver release some of it's glucose stores into the blood stream. i'm far from perfect, but i have had loads of troubles with lows that i don't feel and no longer drive because i can't be sure i'll be in condition to do it and don't want to cause an accident. Good luck, buddhabret

[mlz]

Hi DollCat,
I know exactly what you are experiencing with your daughter. My husband has been type 1 since he was 14, but only in the last 5 years (that we're aware of) has he been experiencing the 'seizure' type lows you describe. It is scary, but I guess I just get use to it. Some days are harder than others. Sleeping next to him is easier to know when it's happening, I try to wake him before it gets too sever. I use the liquid gel tubes most of the time. Then once he's stable, I get him some juice to rinse away the gel taste, that he hates.

Another diabetic site I frequent, gives the suggestion of using a tube of frosting instead of the gel, and it's not nearly as sticky and gooey. Tastes better, too. Something to think about. Take care.

[DollCat]

And thanks JW for your post too, I didn't see it til I posted!

[DollCat]

I feel a bit stupid now, as it isn't her GP but her specialist Doc who we see on 3 monthly appointments...

He is usually a great guy, and has been a lot of help from day one.

BUT, I really want to know if anyone esle's child has suffered these symptoms.

I understand we are perceived as being somewhat behind you Americans here in the UK... but my daughter is healthy nearly all of the time, and these night-time hypos are a rare occurance.

I REPEAT: has anyone else had these symptoms? (as most seizure is associated with being unconcious).

Sorry I sound really blunt, and thank you both for your help.

DollCat (UK)

[JDRF-Team-LRS]

DollCat,
I'm not a physician, but a woman who's had diabetes for 35+ years.  Markie is right - you need to find a physician who specializes in diabetes/endocrinology.  Now.

If you are in the US or in one of the worldwide areas that has a branch of Juvenile Diabetes Research Foundation (JDRF), give them a call and ask them for a list of pediatric endocrinologists in your area.  It is so very important that children with diabetes are cared for by specialists.

Your GP sounds ill-informed about diabetes.  Here are the symptoms of hypoglycemia (low blood sugar) taken from a publically available page on the JDRF website (www.jdrf.org) -- search under RESEARCH for other informative topics.

The Article is Entitled, "A Child With Diabetes is in your Care"
...Each child has a particular set of personal symptoms that you will come to recognize.
Headache
Sweating
Shakiness
Pale, moist skin
Cold and clammy
Extreme hunger
Weakness/Dizziness
Fatigue/tiredness
Rapid pulse rate
Blurred vision
Shallow breathing
Inability to concentrate
Loss of coordination
Mental confusion
*Seizure*
*Loss of consciousness*
If the child has lost consciousness or is having a seizure, administer glucagon <DollCat, this is done by injection, not by mouth> and call your doctor. If you do not know how to give glucagon or do have it available, call 911. Do not give anything by mouth if the child is unconscious or having a seizure. .."

In addition to the frightening potential for harm during a seizure, there can be long-term negative consequences and so I urge you to work with a specialist who will help you & your daughter learn how to prevent ... and to treat very quickly ... hypoglycemia episodes.

[Markie]

I can't imagine why your GP is dismissing your reports of what sound like hypoglycemia induced seizures. I am not a doctor. But I have been an epileptic for 41 years and a diabetic for 27 years. And I have remained concious during most of the grand mal seizures I have had, whether or not they have been induced by hypoglycemia.

I am sure your GP is sincere and has the best intentions. But is he up to speed with recent developments in treating diabetes? You need to get another medical opinion, INMHO. Take your daughter to a see an endocrinologist and have her treament reviewed. If she is getting a lot of night time hypos, the basal rate probably needs to be adjusted. And changing her to a more suitable insulin regimen may be called for.

Cheers,

Mark

[JDRF-Team-JW]

Hello DollCat, and thanks for visiting MedHelp.  First let me say that I am not a doctor, just a parent with plenty of experience.  That being said, I have heard of many different reactions to hypoglycemia.  The general consensus is that no people respond the same way.  I can see where youd doctor is coming from, since your daughter's reaction seems to be on the severe side.  However it is important to note that most doctors don't have a lot of experience with the day to day treatment of diabetes.  They know what they learned in med school, and what they see coming through their office.

I would never second guess a doctor, butI am always in favor of asking questions.  Try having your daughter explain her reaction to the doctor and see if he realizes whats going on then.  If not, then I would just continue keeping a close eye on her.  It sounds like she is having some extreme lows and that issue needs to be addressed.  Extreme lows like that can do severe damage to a child.

Hope this helped.