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Avatar universal

Juvenile Diabetes and new seizure, unknown causes

My son 15 has been diabetic since 12. Since the trip to the ER that changed his life, he has only been back twice-once for food poisoning and the other for a very high blood sugar.
Thursday morning, he was figgeting with a fan and taking his clothes on and off. He was hot to the touch but his jaw was clamped too tight to get the thermometer in. He was not able to verbalize in complete sentences, if at all and at one point began a repetative loop "I don't know"
Immediately I thought, low blood sugar. I tested him and he was 75. Not quite low enough for the rambling but I gave him syrup to bring him up JUST IN CASE. I was wrong... His rambling and weird actions worstened and I called 911. I will leave the next hour of abuse from the medics out, but when we got to the hospital they did an array of tests. 4 days 3 nights of it's cocaine or mariguana, encephalitis, meningitis, stroke, epilepsy, tumor, cancer, EEG's, Spinal taps... you name it, he was tested for it. They ruled out everything, but in the same breathe they said that there was significant damage to his occipital lobe which explained the screwed up nearsightedness he was experiencing after this attack. He remembered most of the morning including the part where I gave him syrup... no diabetic that was crashing would.
They contributed the event to an extremely low blood sugar, even though it took a good 8 hours after he was already normalized before he got to the hospital and have basically said "I don't know, we'll see what happens next."
Every doctor we saw contributed his "event" to faking or drugs from the very first of two ambulances, to the Neurologist that has decided that my son has Attention Deficit Disorder. What I saw that morning, no child could fake. The emotions I saw in him through out that day were sureal and so outrageous, but all the drug tests came back clean. The Neurologist said that the MRI showed damage to his occipital lobe, isn't that a problem? I mean, you can't fake that right? Please someone help a distraut mother with a good kid who is being misdiagnosed...
3 Responses
Avatar universal
Dear KingFishinGirl,
What an ordeal!  I trust that all's been relatively stable in the time your son has been home from the hospital?

We are volunteers and not medical professionals, so the best I can suggest is to find a neurologist to work with -- outside of an ER setting.  Perhaps working through your son's endocrinologist -- a person who *knows* your son's personality, the family dynamics, etc -- you'll find a doctor who'll do the necessary tests without the underlying innuendo of drug abuse.  In fairness to ER docs, however, too many teens end up in the ER due to drugs, so it's not surprising that they think about drugs as they try to find the cause.

I've done a little bit of Internet research and found these non-commercial sites with information about seizures and the occipital lobe.  As the docs have likely told you, that is the part of the brain where a lot of visual processing occurs.

http://neurology.health-cares.net/epilepsy-common-types.php
http://www.epilepsy.org.uk/
http://www.fbhc.org/Patients/Modules/ep_kindsepilepsy.cfm

I hope this is a bit of help to you.  I hope your pediatric endocrinologist will quickly help you find the right doctor to follow up with.

Avatar universal
It is possible that his blood sugar was significantly lower than 75 for a while, but that his body's emergency responses caused his liver to dump emergency sugars, bringing his glucose levels back up to 75 by the time you noticed his symptoms and did the glucose check. I am so sorry you and your son have been through this horrible event.

You may never know for sure what the initial problem was, but maybe now the best thing to do is to make sure he is never low for an extended period of time again. If this was an early morning event, he may have been low in his sleep for hours before his liver dumped sugars to get him up. It may be a good idea for the two of you to re-evaluate how often he tests for lows, and maybe even have him wake up about 4 hours after he goes to bed to test once to make sure he is not dropping in his sleep. The most important thing while his body recovers is to prevent a recurrence of this episode.

Another suggestion (I am prone to lows and so have quite the prevention setup in place: keep a can or even two 6-oz. cans of juice by his bedside so he can simply pop one open if he wakes up low and drink it without having to get up -- we usually are too groggy to get up and go to the kitchen when low.

I hope he continues to do OK and that he never has another serious problem like this again.

By the way, SOMETIMES when seriously low, I DO remember everything that happens while I am unable to help myself or to speak coherently. Sometimes I don't. The symptoms and what the person is or is not able to do varies from episode to episode. I don't know if you know this, but it might help both you and your son to know that each low can have different combinations of symptoms. But in the 38 years that I have been a type 1, I have learned ALL of the possible symptoms so that I can recognize any combinations. He will, too, in time.
Avatar universal
WOW! Thanks for both your responses! I spoke with his neurologist and he is now convinced that it was a seizure brought on by a change in his blood sugars. While 75 WAS NOT typically low for him, since the day following this he has needed an additional 5-10 units in insulin in the morning and evening. I originally thought that the higher blood sugar was because he was stuck in a bed and tried to get his excersise and what not. Since he has come home and is trying to get back to normal, even going to school yesterday, his blood sugar is still staying 200+ the extra insulin is bringing him back to normal but as he sleeps in the night, the morning he is back up again. We don't have a good endocrinologist and we only have two in my area under my insurance plan for pedactrics. I was actually in the middle of getting his referral to the other doctor because I just can't deal with the one we have.
In three years our Endocrinologist has never explained the sliding scale to us and I did not even know there was a such thing until he had forgotten to take his shot in the morning and a nurse asked me if he used a sliding scale. She looked at me like I was crazy when I asked her that. When I asked the doctor she explained her dislike of the sliding scale and said aslong as he sticks to his diet of carbs and takes his insulin, he will be fine. BUT obviously, he is a kid and it was such a common sense thing once that nurse said that... OF COURSE he could use a sliding scale! Kids eat things and even though he is not into sweets and actually likes the sugar free stuff I get him, he understands he can either have 2 whole oreos or a whole bowl of sugar free fat free pudding.... ya know? We have never gotten an actual sliding scale from our doctor and we are slowly experimenting with it using only a couple units at a time to try and figure it out. We have waited three months for this doctor appointment and I have my fingers crossed that he is a good one! He is the only one left!
My dad is diabetic, I learned very early in life about diabetes and what bottoming out is like. It took me and my little brother holding my father down in the evenings while my mother was shoveling sugar into his mouth. I never understood why, I just remembered hearing my mom hollar for us in the middle of the night. My dad never remembered, ever. Sometimes he was combative, sometimes he just laid thee almost lifeless. When the doctor told me that my son was diabetic I had to leave the room to get myself together before we told my son what that meant for him. I could only imagine I would be doing the same thing for my son. Three years later I have found that, so far, he is a ver yresponsible kid. Once he is completely unable to produce insulin we will really find out what he is made of! He is braver than I could ever be, takes his own shots, tests himself religiously... Now that he is stepping up to almost 40 units morning and evening I suspect he is close. My dad takes 60 morning and evening. And my dad's problems came from being a mail man, believe it or not. He is a very responsible diabetic too. He has always been into working out and has his own gym in the house but the heat here in Florida is terrible an my dad had alot of problems with the heat. You never know how much you have burned an he was always testing to try and keep up.
My son does recognize the signs when he is getting low and I have tubes of this glucose syrup that have 30 carbs in a small amount so it will snap him out of it and it stays in his room. It's the only thing I could find that the other boys in the house would not eat or drink and won't spoil as long as it is sealed shut. The one time he did bottom out I went into the fridge (before I bought the tubes) and everything was diet and sugar free! LOL! All the good stuff was gone and he couldn't have drank milk inthe quantity he would have needed so grabbed the spoon and the sugar bowl and started shovelling. HE didn't remember any of it, I haven't forgot it. I went online that day and found those tubes and they are available here, no chewing required and it absorbs in his mouth if he can't swalow.
I really appreciate your response. The only diabetic I know is my dad but his diet is different and he uses two ifferent types of insulin. Turns out, he knows what a sliding scale is! LOL! He is much further advanced in his diabetes so I can't use his scale but I can get an idea until I get a good doc! Thanks again! I will check out those links... Good luck to you! It sounds like you have been a diabetic at least from the age of my son if you are type1. Thanks :) Nikki
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